Traveling Alone with Food Allergies

My Trip to New York!

I recently traveled to New York – alone – for a conference put on by the Roosevelt Institute. As I’ve mentioned before, Roosevelt is a national organization trying to re-engage young people in the policymaking process. They offer a national training each year to leaders of the Institute from around the nation at Franklin D. Roosevelt’s home in Hyde Park, NY. Since I started my chapter of the Roosevelt Institute at the University of Denver, I was invited to attend!

They offered to cover my flight out (which is great)! I had a great few e-mails with their operations specialist at Roosevelt and then I called and voiced my concerns about which airlines I could fly. Since I’ve really only had good experience with Southwest, I told them that I would prefer to fly with them. However, there was one main problem: I had to be at Grand Central Station in NYC by about 2:45pm on Thursday, August 6th to catch my train to Poughkeepsie, the nearest train stop in upstate New York. Only one flight from Denver would get me to LaGuardia airport at 1:40pm (landing time). I knew that it would be a tight push to get off the plane, get my luggage, and get to Grand Central in an hour.

Instead, I had Roosevelt book a flight the day before. This allowed stress free traveling and some extra time. Since I didn’t book the trip online, I called in to Southwest customer service and explained my peanut allergy so that it would be noted on my reservation.

The next problem was, where would I stay? My Mom and I had a couple discussions about friends and family we knew in NYC and in Poughkeepsie. We looked up a hotel in Poughkeepsie that was relatively cheap. However, we eventually settled on renting through Airbnb.

If you’ve never used Airbnb, it’s wonderful! It is a website where home owners advertise a room or their entire place for you to stay in, like a hotel. Usually, however, you’ll have access to a full kitchen and all the amenities you may not have in a hotel. Plus, they must mark if smoking and/or pets are allowed. By default, they’re not! This makes the stay even better. I found a very awesome room to rent in Poughkeepsie, NY. I submitted my request to room there for the night and had a great conversation with the owner through Airbnb before I went confirming the non-smoking and the no pets! I didn’t get into my food allergies since I knew I could find safe food. She and her boyfriend lived together; they were both lovely and fully accommodating.

Roosevelt arranged housing for the duration of the conference at a nearby motel called the Golden Manor. I was supposed to have a roommate, but he didn’t show up. Instead, I got to have a room to myself! Now that I had my housing arranged, I had to make sure I had my food all in order.

I coordinated again with the operations specialist at Roosevelt for a menu of the food provided at the conference. (I’m allergic to peanuts, tree nuts, sesame, fish and shellfish.) She got back to me and we realized that, in fact, all but one of the meals would be safe! She double checked with the caterers for ingredients and confirmed that all the meals (except one) would be perfectly safe. The lunch on Friday was Chinese, which was not safe for a multitude of reasons. Instead, they bought me a frozen meal that was perfectly safe (it was a burrito bowl and we both triple checked the ingredients) that I ate instead of the Chinese food.

I also brought extra food for myself (a few homemade granola bars and a couple of bagels) just in case a breakfast or a lunch turned out not to be safe. That way, I always had something to eat!

The trip itself went very smoothly. I arrived in NYC at LaGuardia airport, got my luggage, and hailed an Uber. Uber is another great app that allows you to hail a (more or less) private driver – like a taxi, but usually they’re nicer cars and nicer people – that will take you anywhere. The fee for the ride is all conducted through the app and tips are automatically added. It’s really a seamless experience and I had a great Uber driver on the way into New York City.

The driver dropped me off with my luggage at Grand Central. I forgot how many people lived in New York City! Despite the masses, I found my way to a ticket booth, got my ticket, and got on the train to Poughkeepsie. It was about an hour and 45 minutes long. Once I arrived in Poughkeepsie, I walked the short walk to the Airbnb place and arrived home for the evening! Since the owners were out, they left a hidden key outside and let me know via the Airbnb app. Once they arrived back, we chatted for a while before we both went to bed. I had packed food for the trip and I ate along the way.

Airbnb room

In the morning, I had a granola bar and some coffee. A light breakfast, admittedly, but I kind of spaced on what I would do for that morning. Even with all of my careful planning, I did overlook it, but I was grateful I had brought extra food. After a while, I said goodbye to my wonderful hosts and walked back to the train station. Roosevelt promised to shuttle us from the train station up to Hyde Park, where FDR’s home is.

Roosevelt home

The conference was absolutely amazing. We got a tour of FDR’s home and presidential library (both of which were great!). We also did some great trainings for leadership, strategic planning, policy making, coalition building, and even PR techniques. The food went absolutely perfectly throughout the entire weekend and the staff were so wonderful! Every time I went to get food, the staff was double checking with me about the ingredients of the food and what I could eat. It was just wonderful.

One night, a huge group of us walked 15 minutes up the road to a nearby diner. Just like any restaurant I go to in a foreign place, I played it safe and got some French toast. I double checked with the waiter and he double checked with the chef; everything went great. It was really tasty French toast, too!

After the conference was over, I took a mid-morning train back to NYC from Poughkeepsie on Sunday, August 9th. Even though I had a small suitcase with me, I decided I wanted to look around NYC a little bit, so I ventured my way onto the metro and went down to the World Trade Center. The memorial was absolutely gorgeous and the new One World Trade Center is great! I grabbed Panera for lunch before going to the airport via Uber.

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Panorama 9_11

My safety for the entire trip was assured by planning ahead and making sure everything I was going to eat was safe. I just communicated my concerns and I made sure all of it would work! Overall, it was an amazing experience.

Go with the Flow when You’re Invited to a Business Lunch

Last Friday, I was in Denver meeting with a bunch of non-profits and elected officials for my most recent project: the University of Denver Roosevelt Institute. I’ve made mention of it before, but to recap, it’s an undergraduate non-partisan think tank. We’re a chapter of a national network of campuses that is attempting to re-engaging young people in politics (a tall order, I know).

Anyway, I had a meeting with the Governor’s Senior Advisor, Jamie van-Leeuwen. Jamie advises the Governor of Colorado on social policy and projects (like homelessness) and has a wealth of experience in urban and economic development. He actually started his own international development foundation called the Global Livingston Institute. Needless to say, he’s very intelligent and was great to meet with him. He’s an absolutely whirlwind of energy – I swear this man never sleeps.

I had scheduled a meeting with him at 12, but he was late. He had to finish up a panel discussion with a number of interns in the Governor’s office. Once he arrived, the conversation went something like this:

Jamie: “Hi, Morgan, right?”

Me: “Hi Jamie, yes. Nice to meet you!”

Jamie: “Nice to meet you to! I’m running late, sorry about that.               But I’m actually supposed to be at a lunch – do you mind                             coming along?”

Me: “Uh, sure! I’d love to.”

Given that this was the only opportunity for me to meet with him in a month (he’s in Africa now working on projects related to his foundation), I figured if I had to talk to him on the way to a lunch (and at the lunch), I would. We basically raced to his car and started a short drive over to the Denver Center for the Performing Arts, where the lunch was being held.

As it turns out, a celebration of culture for North & South America (called the Biennial of the Americas) was going on during last week and Jamie served on their board. Since this was the last lunch of the event, he needed to at least make an appearance. While I chatted him up on our car ride over, my mind was already thinking about the food at the event. I figured I would wait until we got there and see what they were serving.

Morgan Post

After a few brief hellos with people Jamie knew, we sat down at a table. There was a salad with spiced chicken on it and a vinaigrette already drizzled over it. Accompanying it was a chocolate cupcake with a nut-looking topping. As I sat down, a server came over and began to pour some water. I turned to her and immediately asked if the salad has any of my allergens. She tells me she will ask the chef and departs.

Jamie and his friend we sat down with immediately turn to me and ask if everything is all right. They were very interested in my safety! I briefly explained that I had severe food allergies; they completely got it. The server returned and told me that everything in the salad was 100% okay. They did not prepare anything with shellfish, fish, or sesame. They aren’t a nut-free kitchen but the salad did not contain nuts. I felt very comfortable with that answer and began to dive into the salad.

While the lunch was going on, there was a really great panel between the Mayors of Denver and Calgary, and a former Mayor of Bogota. They were talking about the importance of local community change. I always think about how important it is for parents of food allergic children to work with their schools and the school board on making sure food allergic children are safe in their schools. That’s a great example of what the Mayors were talking about.

Without even asking, the server later returned and said the cupcake was topped with pumpkin seeds and not nuts, but cautioned me again that they weren’t a nut-free kitchen. I thanked her. As a general rule, I always pass on dessert simply because most desserts have some sort of cross contact issue with nuts, whether or not the topping is pumpkin seeds.

Overall it was a great lunch and Jamie was awesome to talk to. I certainly wasn’t expecting to go to lunch, but everything turned out just fine! I always make sure to ask about the food served, especially at big galas. Who knows what’s in the food!

The Sometimes Incompetence of Waiters

The other weekend I went with a friend and ate at P.F. Chang’s. For those of you who are familiar with the restaurant’s menu, it seems like an odd choice for my food allergies (peanuts, tree nuts, sesame, fish and shellfish). It’s Asian cuisine and most of the menu items contain some sort of nut or shellfish/fish ingredient. However, I’ve eaten at P.F. Chang’s since I was very young and I’ve always had an excellent experience. I became good friends with the Head Chef and then Assistant Owner of a local P.F. Chang’s in Colorado Springs so I knew what went on in the kitchen and what menu items could be prepared safely.

PF-Changs-logo2

My favorite menu item is Crispy Honey Chicken – a very “play it safe” but delicious dish. I’ve eaten it dozens of times and never had any issue.

Anyway, we sat down and the waiter came over and introduced himself. He brought us menus and we ordered water for drinks. I knew what I wanted to order because of my allergies and I knew the dish would be safe. When he came back, I notified him of my food allergies. He told me that P.F. Chang’s has a “matrix” or print out of items on the menu that would be safe for me. He returned quickly with this print out and let us scan through it. I don’t know how this list is compiled, but it is most likely a list of dishes that “may contain” the allergens input. I never received clarity on it.

To my surprise, the Crispy Honey Chicken was not on the list, despite my eating of it a mere month or two before. There were probably only four or five items on the entire list. When the waiter returned, I notified him of the issue and he said he couldn’t do anything about it, nor could he assure that the item was safe. I went ahead with it anyway and ordered Crispy Honey Chicken. I knew it was safe and I had eaten it many times and very recently too. I simply asked him to notify the chef of my food allergies or put it in the system so they could prepare it separately from all the other food – something I know P.F. Chang’s does for food allergic customers.

The waiter said the chef couldn’t do that. They couldn’t guarantee the safety of my food or prepare it in an area away from the regular food. I was surprised and at this point a little scared. What if I couldn’t actually eat my “play it safe” dish? What if P.F. Chang’s had changed? Or, was it just this location that had different practices? I told the waiter to give me a few minutes to think about it.

I was mainly surprised because the Head Chef and Assistant Owner I knew from my youth made it very clear that the kitchen always has a separate area to prepare dishes for food allergic customers. I decided to take matters into my own hands and call the restaurant – from within the restaurant. I asked to speak to a manager. I told the manager: “Hi! I’m looking at coming to your P.F. Chang’s but I have severe food allergies. I’ve eaten at many P.F. Chang’s but I just wanted to check your practices. I know you have a matrix print out, but I was wondering if the chefs prepare food for customers like me in a separate area.” The manager confirmed! She told me that the chefs use separate pans and oils to prepare food for food allergic customers and I only would have to notify my waiter to put it into the system.

I was much happier at this point because I knew I could have a safe meal. I made sure the waiter had put it in the system when the meal was ordered (really, I double checked) so I could have a safe meal. The meal was delicious and safe and nothing went wrong.

Within a couple days, I called the restaurant back and spoke to a manager (a different one) and explained to him what had happened. I also made clear it wasn’t a big deal for me but that it could be an awful experience for a family who had never eaten at P.F. Chang’s. They would either be very scared or they would simply leave. He was deeply apologetic and told me he would have a deep conversation with the waiter about practices. The odd thing (for both the manager and I) was that the waiter was not new and was pretty familiar with the kitchens’ practices for food allergic customers. That aside, the manager sent me a $15 gift card and I’ll definitely be returning for more Crispy Honey Chicken.

I think there are a few important lessons from this adventure:

First, waiters can be wrong. They can also be right! I’ve had many positive experiences with waiters at restaurants, including P.F. Chang’s. Sometimes, however, they can be incompetent and unwilling to ask their manager or the chef. In those cases, you need to take matters into your own hands like I did to make sure you’re getting a safe meal.

Second, play it safe. I knew Crispy Honey Chicken was a safe dish even though the matrix didn’t have it. That’s a risk I took but given that I had eaten it a mere month before, it was a relatively safe risk. If you’re at a restaurant you’ve eaten at before with an incompetent waiter, eat something you’ve had before to play it safe. If you’re at a new restaurant, get something that looks like it is the least risky dish.

Finally, I think it’s very important to be patient. I could’ve lost it and gone after the waiter but I didn’t. Working it out and getting as much information is super important to understanding the situation at hand. Getting in touch with a superior (like a manager) also helps. Being patient makes sure that you are careful and deliberate in your decisions.

Overall, it wasn’t the best experience. I certainly had moments where I was unsure or scared that the food was not going to be safe but I had faith in the chefs in the back to keep it safe. Everything turned out well – and hey! I have a gift card of $15. Always good.

Freshman Year at College with Food Allergies

I cannot believe I have finished my first year of college at the University of Denver (DU). It is CRAZY!

Spring Conference

The main event in Spring Quarter was flying out to Los Angeles to attend a conference at the University of Southern California. I founded a chapter of the Roosevelt Institute at DU. Roosevelt is a non-partisan, non-profit, undergraduate think tank (how’s that for a mouthful) that seeks to empower young people in political change ranging from K-12 reform to international development, economic justice to public health issues (like food allergies!). The Western Region held an annual conference at USC that I was invited to since I had recently started up the chapter at DU. They were very understanding of my food allergies and expressed an interest in accommodating them.

Everything didn’t work out how I had planned. I had initially understood sandwiches were going to served for the mid-conference lunch but that was soon changed to Indian food. Needless to say, I was at a loss as to how to work around Indian food. I decided to bring my own bagels and snacks in my suitcase for a safe alternative for food. Thankfully, the breakfast they provided was safe. I knew I had to work around it since it was a last minute change, and I didn’t throw up a fuss. Since I could bring my own food (or heck, even order Jimmy John’s to deliver once I was there), it was not a problem.

For dinner, I ate at In-n-Out Burger. I’ve had In-N-Out before on a trip my senior year and I knew it was safe. I double checked once I was there and they assured me nothing contained sesame. It was absolutely delicious!

Just to reinforce something, this was the first time I had flown alone – no friends, no family, nobody with me besides, well, me! It was a big leap forward. However, I flew Southwest Airlines so I knew no problems would arise. You can indicate (like I did) a “peanut dust allergy” when ordering tickets and get two things: a preboard slip and a PDA slip. Preboarding allowed me to enter first and clean off my seat from any previous flight to prevent contact with allergens. The PDA slip I gave to the flight attendant and because of it, they do not serve peanuts on the flight. Overall, the conference was a safe and successful trip!

Morgan & Thomas June 2015

My Roommate

I have to say: the reason my first year at college was successful was because of my roommate, Thomas.

Thomas comes from the humble little town of Buena Vista, CO and he is one of the best people I know. He wouldn’t eat my allergens in the dorm room, he’d wash his hands if necessary, be considerate of the restaurants we’re eating at, watch out for my health, and simply would be a good guy. Thomas was truly an amazing roommate. We were randomly assigned through the housing system and I have to say I was very fortunate to be assigned to room with him. I can’t offer enough praise for having such an awesome guy.

I trained Thomas about allergic reactions and what symptoms to look for, and how to administer my EpiPen. He’d even read labels on things! I hope every food allergic child has such an awesome experience.

Certainly, Thomas was aware of my food allergies because I told him – an essential step. When your food allergic child(ren) go to college, tell them this: do not keep them hidden from the person/people you’re living with! I set out the standards of asking him not to eat things I was allergic to in the room and everything worked out amazingly.

Wicked

To celebrate the end of the quarter, I went and saw Wicked, the famous Broadway musical. I have seen it before and I absolutely love the play. Very catchy show tunes – they’re still stuck in my head almost a week later!

The program at DU that helped sponsor this also paid for a pre-show dinner at a local French restaurant called Bistro Vendome. They offered a choice of two appetizers, four entree dishes, and two desserts since we had such a big group (over 30 people!). I told the waitress about my food allergies when I ordered the dishes I wanted and told her also about cross contact issues. She was very nice and helpful and triple checked all the dishes with the chef to make sure they were safe! It was a wonderful and delicious (and free!) dinner.

On Campus Food

The last quick note I’d like to make is that I still had no issue with the food on campus. The local dining hall actually had a change in staff so there was a new head chef! I made sure to introduce myself but since all the food has ingredients clearly labeled on television screens, I knew there wouldn’t be an issue.

Have a wonderful summer!

Could Gut Bacteria Cause Food Allergy?

Good Gut

 

I’ve just finished reading this book about gut bacteria, which has led me to believe even more strongly in the role that good gut bacteria plays in health. While the book doesn’t specifically cover food allergies, it does state that “Dysbiosis, or microbial imbalance, is observed in people with a variety of health problems such as Crohn’s disease, metabolic syndrome, colon cancer, and even autism.”

The authors (both are PhD’s in Microbiology and Immunology at Stanford University) also cover the damage that our hyper-hygiene world does to killing off good gut bacteria – along with killing the bad pathogens. This phenomenon, the hygiene hypothesis, has been postulated as one of the potential causes of food allergies.

Research has found that the bacteria in our gut talk to other areas in our body, constantly regulating our body. So, if a child doesn’t have the proper bacteria to tell the body to NOT react to foods such as peanuts, tree nuts, eggs or dairy – the body believes these foods are a pathogen, and protection is needed – thereby initiating the allergic reaction.

Of further interest to those with children with Eosinophilic Esophagitis (EoE) is the information provided on the mucosal immune system: “The mucosal immune system contains two branches, one that reacts aggressively to a threat (the pro-inflammatory side) and one that dampens the aggressive response once the threat subsides (the anti-inflammatory side). The proper response to gut microbes involves a continual balancing act between these two branches, much in the way that a seesaw is balanced when equal weight  is placed on both sides. When the seesaw is perfectly balanced, immune harmony is achieved.”

There is a link between gut microbiota and personality/psychological issues. In research with mice, microbe-free mice had memory-related problems. “Chemicals produced by these gut bacteria can penetrate the walls of the intestine and seep into circulation and reach the brain.” More research is being done to identify these chemicals and how they affect our mental state.

The book has convinced me that a healthy diet of vegetables, probiotics, fermented foods and MACs (Microbiota accessible carbohydrates) are in our family’s future!

 

 

 

Asthma of the Gut aka Eosinophilic Esophagitis

Most of you reading this blog are probably familiar with asthma – the ‘regular’ asthma that is in the lungs, causing mucous production, coughing and wheezing. Asthma is a serious illness causing NINE deaths per day in the USA. For some people, it’s very hard to get it managed properly. For others, a cocktail of inhalers, bronchodilators and nebulizers are needed.

Now, imagine if you had asthma in your gut!

“Asthma of the Gut” is the best description I’ve heard yet to explain Eosinophilic Esophagitis (EoE). Gastrointestinal doctors are now using this term regularly to explain this debilitating condition.

EoE

What is EoE? According to APFED (American Partnership for Eosinophilic Disorders) it is: “an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.” APFED has more detailed information about EoE which you can read here.  There may be a genetic link in some families, and environmental allergies may also be a component.

According to AAAAI (American Academy of Allergy Asthma & Immunology) : “In EoE, large numbers of white blood cells called eosinophils are found in the tissue of the esophagus. Normally there are no eosinophils in the esophagus. EoE can occur at any age and most commonly occurs in Caucasian males. The symptoms of EoE vary with age. In infants and toddlers, you may notice that they refuse their food or are not growing properly. School-age children often have recurring abdominal pain, trouble swallowing or vomiting. Teenagers and adults most often have difficulty swallowing. The esophagus can narrow to the point that food gets stuck. This is called food impaction and is a medical emergency.”

Diagnosis of EoE

The diagnosis of EoE can be tricky since it can mimic other illnesses, such as gastroesophageal reflux disease (GERD), celiac disease, parasitic infection, Crohn’s or colitis. In general, if you have the symptoms discussed above, an endoscopy is going to be performed, where esophageal biopsies will be obtained. If you (or your child) have at least 15 eosinophils in at least 1 high-power microscopy field, then you are likely to receive the diagnosis of EoE.

Mast Cell Involvement/Treatments

I haven’t heard of specific research on this; however, I want to mention some anecdotal evidence that I have. Almost every parent of a food allergic child that tells me that their child is inhalant allergic to a food has later been found to have EoE. I’ve had two GI doctors tell me that if eosinophils are elevated in a person, then mast cells are also elevated. When mast cells are elevated, a person is much more sensitive to their environment, and more likely to react to even the smallest exposure of an allergen.

It takes a special lab staining technique to check for mast cells in the gut, and most GI doctors in the USA aren’t using this stain. Therefore, if the doctor checks for mast cell involvement, too many times they erroneously think there isn’t a mast cell increase. Yet, both my daughter and I have later had the Alcian Blue 3 staining completed on our biopsies and found that our mast cells were extremely high!

In adults, GI doctors are regularly prescribing mast cell stabilizers (such as Ketotifen or Gastrocrom) for their patients with eosinophilic disorders. Yet children with EoE are commonly not receiving these medications. According to AAAAI, “Glucocorticosteroids, which control inflammation, are the most helpful medications for treating EoE. Swallowing small doses of corticosteroids is the most common treatment. Different forms of swallowed corticosteroids are available. At first, higher doses may be needed to control the inflammation but they are linked with a greater risk of side effects.

Proton pump inhibitors, which control the amount of acid produced, have also been used to help diagnose and treat EoE. Some patients respond well to proton pump inhibitors and have a large decrease in the number of eosinophils and inflammation when a follow up endoscopy and biopsy is done. However, proton pump inhibitors can also improve EoE symptoms without making the inflammation any better.”

Elimination diets and/or elemental diets (amino acid formula) are other treatments for EoE. Yet even those don’t work well for some people.

You may have read about a family who chose a wildly different treatment for their son when none of the standard treatments worked. You can read what Gerson Therapy did for this little boy here.

Eosinophilic Gastrointestinal Diseases (EGID)

According to APFED, “Eosinophilic esophagitis (EoE) is far more common than the eosinophilic gastrointestinal disorders that affect the rest of the GI tract. ”

I am that rare bird! I have a diagnosis of  eosinophilic involvement throughout my gut – stomach and intestines in addition to esophagus – my diagnosis is Eosinophilic Gastroenteritis, which my doctor said is equivalent to the evil twin: Mastocytic Enterocolitis.

All of these terms just sound so much easier as “Asthma of the Gut”.

In the case of the gut, where 75% of the immune system resides, there is certainly a need for some mast cells to fight off parasite or bacterial infections. However, eosinophilic disorders create a gut with an abnormally high amount of eosinophils (and mast cells) in the esophagus,  stomach, duodenum, intestines and colon. Inflammation occurs, and the lining of the gut is damaged creating malabsorption. It is a dangerous cycle to get into.

What are the symptoms of EGIDs?

Healing EGID

Because there is virtually no research on EGIDs – there are so few people to study – I’ve taken on my own recovery. I do eat a very limited, organic diet currently to help my gut heal. I take several medications to manage my mast cells and eosinophils (Budesonide, Zyrtec, Zantac, Ursodiol and Ketotifen). My gut is healing enough now to slowly decrease my Budesonide!

The biggest healing force I’ve found is meditation. If I envision my gut healing, on a daily basis, I’ve found that my intention is stronger than any illness!

 

Why are some Parents too relaxed about Food Allergies?

I remember when I first ran into another Mom whose son had food allergies. My son, Morgan, was 18 months old happily playing at the park. I was chatting with another Mom watching her 10 year old son playing. In the course of the conversation, she mentioned that her son had peanut allergies. Since Morgan had just been diagnosed at that time, I was ready for all the scoop on managing the allergy appropriately. She told me to be prepared to be in the Emergency Room a couple of times a year, like they were. She recounted a story about her son eating a cookie, which turned out to have peanut butter in it, and ending up going to the ER. I was horrified!

At that time, I didn’t know much about managing food allergies, but I knew that a couple of trips to the ER every year wasn’t acceptable to us. This was the beginning of an education about food allergies for me and for our family. Mostly, we wanted our son to know that vigilance about his food allergies was going to be required.

So what makes a family too relaxed about food allergies? Through the years, I’ve found that families who haven’t received all the information about how serious food allergies can be tend to be too relaxed. Sadly, these same families are frequently the ones who don’t carry an EpiPen or Auvi-Q with them at all times, and some haven’t even been prescribed an autoinjector. When anaphylaxis occurs, they say that they never realized how serious a food allergy could be. It’s tragic.

This points to another issue – many families only see their primary care physician and not a Board Certified Allergist about food allergies. We were so lucky that our primary care doctor knew when he was out of his league with Morgan’s reactions. He referred us to an allergist for proper care. A Board Certified Allergist should be able to distinguish the false positive from the actual food allergy. An Allergist can determine whether the wheeze is from asthma or another source. It’s their specialty.

Then there’s the too relaxed family where the child hasn’t had any food allergy reactions in years. It’s easy to become complacent. Like a snake in the grass, that’s when the complacency will come back to bite you! Just because a child hasn’t had a reaction in years doesn’t mean they’ve outgrown the allergy. It’s important to have your child retested to determine the level of their allergy as they age. We have done this every 4-5 years. Morgan hasn’t had anaphylaxis since he was 10 years old (and that was to fish to which he had previously tested negative!). He still tests allergic to multiple foods. He hasn’t grown out of any of his ‘original’ food allergies. He’s just been cautious!

There’s also the child who uses food allergies and complacency to ‘get back’ at a hyper vigilant parent. Instead of being empowered to take on their own food allergies, they’ve resigned their condition to Mom or Dad to manage it. We ensured that our son knew he was responsible for his food allergy care and management. From the age of 4, he carried his EpiPens on his body when we left home. He began carrying his EpiPens at school once the law was passed in Colorado allowing him to do so, which was when he was 11 years old. This encouraged his awareness of taking care of himself. We involved Morgan in every decision about going to parties, family gatherings, and school activities. He needed to let us know what he felt comfortable with when food was involved. This encouraged him to be responsible for his food allergies.

I recently was at a parent event at the University of Denver speaking to a father about his son’s study abroad experience. I mentioned that Morgan was choosing among universities in English speaking countries because of his multiple food allergies. The father says to me, “My son has peanut allergies, and we never thought about mentioning that.” Thank goodness his son studied in Australia! For Morgan, he’s very aware that a language barrier could mean the difference of a wonderful study abroad experience and one where he ends up in an ER!

We aren’t relaxed about Morgan’s food allergies, and we aren’t so hyper-vigilant that he can’t live life. There’s a balance in between those two extremes. It takes practice and lots of communication with your child to find the middle ground.

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Banana Oat Cookies – Free of the Top 8!

Banana Oat Cookies

These cookies are wonderfully tasty and healthy for the entire family!

Here’s how to make them:

 

3 mashed bananas (ripe)

1/3 cup apple sauce

2 cups oats (I use the old fashioned kind)

1/4 cup safe milk (I’ve used regular milk and almond milk – any kind will be great!)

1/2 cup raisins

1 tsp vanilla

1 tsp cinnamon

 

Mix all ingredients together with a beater. Drop onto cookie sheet in spoonful size. They don’t expand since there’s no flour!

Bake at 350 for 15-20 minutes

 

That’s it! Enjoy.

Learning More at College by Morgan Smith

The second quarter of the year has been fantastic!

Trip to Buena Vista, Colorado

About three weeks into Winter Quarter, my roommate (Thomas), two friends (Bryce & Kieran), and I decided to go down to Thomas’ house in Buena Vista for the weekend. We just wanted a weekend away from college and to be able to relax; what a wonderful time it was! I drove us down Friday evening and we stopped by Beau Jo’s pizza, a famous Colorado-based restaurant. I had absolutely no issues with their pizza and I did double check with the waiter and the chef if it was. We arrived late Friday night at Thomas’ house.

The entire weekend (Friday through Monday morning) was mainly comprised of lounging around and watching movies, but Bryce & I did utilize the kitchen a lot. She and I made breakfast both days and she was very mindful of my allergies. We didn’t make anything I couldn’t eat and, despite her being a vegetarian, the majority of her nut-filled snacks were eaten on the road and she made sure to wash her hands afterward.

Thomas has a dog, Lucy; however, I had absolutely no issues during that weekend with Lucy! It was a huge improvement from a few years ago before I got allergy shots. I didn’t have any tightness in my chest or coughing and I definitely didn’t have an allergic reaction.

We drove down to Salida, CO on Saturday and hung around for a few hours meandering through the streets after having lunch at a local restaurant. The restaurant was very accommodating. The cooks typically pre-prepare their meat at the beginning of the day; because of this, the waitress was concerned that many of the meats could have cross-contaminated with fish and shellfish. When this concern was expressed to the chefs, they made an entire new section of meat just for me so I could have a safe meal! (I was having spicy chicken quesadillas)

On Sunday, Bryce and I coordinated the final dinner, but everyone helped out making an Italian feast comprised of garlic bread, olive oil asparagus, brown butter pasta, and a safe dessert of creme brulee (which I realize is not Italian). The group shopped together and I made sure everything was safe.

On our way back to Denver, we stopped by my parent’s house in Colorado Springs and grabbed lunch, which is always safe!

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Winter Quarter Activities

This quarter has been quite busy; although I took one less class than I did in the fall, I filled my spare time with lots of activities.

I arranged an internship at the Colorado State Capitol, working for State Representative Pete Lee who represents downtown Colorado Springs. Rep. Lee and I had met at a previous dinner hosted by a mutual friend, and he had mentioned that I could intern for him during the legislative session! Since Colorado’s legislative session runs for only 5 months, it would be a perfect internship during the Winter & Spring quarters.

There isn’t any food involved, thankfully. The only food in Rep. Lee’s office is in a shared refrigerator, and it is composed of string cheese and Frappucinos. Since I typically intern in the mid-afternoon, I usually don’t bring food and I leave before I need to eat dinner. Even if there was an issue, I know the staff in the office would be superbly accommodating.

I’m also actively following HB 15-1232 in the CO State Legislature. The bill allows organizations other than schools to acquire and stock epinephrine auto-injectors. A food allergic child who is involved with such an organization must get a doctor to sign-off on a prescription allowing the stock epinephrine. It also requires those organizations to train its employees on the use of an epinephrine auto-injector. It’s exciting! It got through the House Health & Human Services committee and is now in House Appropriations for amendment-related information. It’ll be interesting to see if it passes or not!

Near the end of the quarter, I also helped out at the Boettcher Foundation’s annual Finalist interviews. The Boettcher Foundation is a Colorado-based non-profit that awards full-ride scholarships at any Colorado university to a select group of students who show strength in academics, leadership, service, and character. I was fortunate enough to be awarded a Boettcher Scholarship last year and I decided to volunteer my time this year!

The Foundation interviews 100 Finalists and must select 40 who receive the scholarship. Needless to say, it’s a rather stressful time for all of the Finalists. I volunteered to be a helper in the waiting area to calm down the nerves and just talk with all of the Finalists as they await to be interviewed.

I worked for almost 5 hours with all of the Finalists, from a little before noon until about 4:30. The Foundation provided lunch to all of the volunteers. The week before, I e-mailed the coordinator of the day and I asked her what food was going to be served. Stephanie, the coordinator, is already aware of my food allergies and is absolutely wonderful! The catering company made an entirely separate lunch that was safe for me and contained all kinds of safe food, like a salad, chips, and a sandwich with safe bread. Stephanie let me know this was happening beforehand and the moment I walked in the door she told me exactly where to find my lunch.

Food at the University of Denver

Winter Quarter was a host to a couple of different events.

To start off, the daily meals have been absolutely wonderful and stress-free. The dining halls always have safe options for breakfast and lunch and I can always find something tasty, somewhat healthy, and safe to eat. The typical breakfast includes fruit, hashbrowns, and sausage (with pancakes somedays).

There are a few exceptions to this. One night, it was Chinese New Year and the dining hall did decide to get a themed dinner going! Unfortunately, all the dishes either contained or cross-contaminated with dishes that contained one of my allergies (nuts and shellfish were the typical ingredients). I walked a minute north on campus to the other dining hall that provides a food court style of serving. They have an entirely safe Mexican option that is reminiscent of Chipotle. I got a safe quesadilla for that night and everything was good. I don’t know if I felt left out, but it certainly was unfortunate that I couldn’t eat with my friends for that night simply because of the options available.

Thankfully, DU is amazing in all other aspects. They have the Fritz Knoebel School of Hospitality Management that runs all of their social events, especially the dinners. For the entire year (there was an opening dinner with the Chancellor at the beginning of the year and a couple of interspersed events I got into that also provided dinner), they have been absolutely accommodating. When I RSVP for the event, I include information about my food allergies and I ask what they can do about it. Every time, they respond that “everything is handled!” and guaranteed, it is. For example, they handmade a salad for me so that it didn’t contain nuts (like the rest of them did).

Final Notes

Our Chancellor has office hours once a month and last month I stopped by to introduce myself and ask a couple of questions. Before I left, I mentioned to her about how great DU is with food allergies. She agreed! She comes from two east coast private universities and they did not accommodate food allergies well.

I’m off to another 10 weeks of school! Hopefully, nothing too exciting happens – food wise!

Best wishes,

Morgan

To Feed or Not to Feed Peanuts to Babies

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Many of you have probably seen the results of the LEAP (Learning Early About Peanut Allergy) study, which basically found that early introduction of peanuts into a baby’s diet can promote tolerance. According to The New England Journal of Medicine this study was supported by grants from the National Institute of Allergy and Infectious Diseases; Food Allergy Research and Education; the Medical Research Council and Asthma UK; the United Kingdom Department of Health; the National Peanut Board (emphasis added); and the United Kingdom Food Standards Agency. It was a follow up to findings that Israeli children who consumed a peanut snack called Bamba as infants had far fewer peanut allergies than Jewish children in the UK who didn’t eat Bamba.

One of my favorite write ups about the LEAP study was from Dr. David Stukus entitled “Breaking Down the Landmark LEAP Study: What Does it Mean?”

Since the findings of the LEAP study have been released, I’ve been inundated with people, with good intentions no doubt, asking me “Did you see the study that said you should have been feeding your son peanuts?” For those of us parents of children with food allergies, those statements can make us cringe! This study has no bearing on those children who ALREADY have peanut allergies. And, in my opinion, there are a lot of other factors that weren’t taken into account with this study, despite how excited the medical community and the media appear to be.

My son, Morgan, would have likely been a candidate for this research. He was covered in eczema at a few months old, and likely would have tested positive for egg allergies as a small infant (we didn’t find out about his egg allergy until he was 15 months old and reacted to his MMR shot).  He also could have been one of the children who reacted too violently to the peanut skin prick test (over a 4mm wheal) which would have limited his inclusion in the study. (We didn’t have a skin prick test completed for peanuts until he was 18 months old in 1997, and the allergist didn’t provide us the information about the wheal size – just that his peanut allergy skin test yielded a 4+.)

Looking back, had he been chosen to be a part of this study to eat peanuts, I would have had serious reservations. Based upon what I know today, I would certainly decline to ever feed my child peanuts when he already has eczema and an egg allergy. What concerns me about this research is the same concerns I have about Oral Immunotherapy. You can read my blog post, Food Allergies, Mast Cells & Hitting Your Threshold that outline those concerns. Yes, the researchers followed the children until the age of 5, but that is far from a mature, adult gut and immune system. And while they tested the IgE of all participants,  high IgE is not the only indicator of having detrimentally affected the body. Eosinophilic Esophagitis and mast cell issues can be involved without a high IgE. There are many more bodily systems affected, and from what I have read, no endoscopy was performed on the subjects, so the inner workings of the gut were not looked at. The sinuses and lungs were also not looked at. What impact did eating peanuts have on those areas of the body? Having research that only looks at whether a child can consume peanuts doesn’t look at the impact on the body as a whole. Nothing in the study reported on findings in the atopic march.

Next, my concern is what about the multiple food allergies that my son has? If I were to have fed him peanuts, what impact would that have had on his “other” life threatening food allergies –  tree nuts, sesame, fish and shellfish? We didn’t know about all of these other food allergies until Morgan aged and ate or came in contact with these other foods. In other words, a skin prick test at less than a year old may not reveal everything that’s going on in an infant’s body when looking at food allergies.

Lastly, feeding peanuts to a child with eczema and egg allergies SHOULD NOT be done without the consultation of a pediatric allergist. Parents with a Google MD degree don’t have the necessary information to safely embark on this study at home. If your child already is exhibiting allergic issues, see a specialist. Even the pediatrician may not have enough information to safely care for your child effectively.

 

 

 

How Can A Body Heal Itself?

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There is an abundance of research trying to find a cure for food allergies. Because of the stomach issues in our family, mast cell disorders and EoE, we have chosen to seek out different healing arenas than eating what we’re allergic to.

About a year ago I began seeing a chiropractor that practices Network Spinal Analysis (NSA). For those of you who have read my blog for a while, you know that our family is very open to new modalities of healing AND we still see medical doctors too!

We have spent a lot of money seeing NAET specialists (see my write up on that here toward the bottom of the page), acupuncturists, chiropractors, Sacral Occipital Therapists, massage therapists…the list goes on and on. Many of these practitioners have provided temporary relief, at best. And the abundance of them have served only to lighten our wallet! I know that my son needs to have medication to manage his ocular allergies, his asthma and his nasal allergies; however, I’m always on the lookout for something that can assist his body to truly heal from these maladies.

My daughter and I have a mast cell disorder, and I was having severe lower back pain that wasn’t being helped by traditional chiropractic care. I decided to try something new and be the guinea pig in the family. It turns out that the mast cell disorder and the back pain were related, according to my new NSA chiropractic doctor. The more allergic reactions I was having, the more mast cell proliferation occurred. And the more mast cells, the more my back hurt. It was as if my spine was shutting down my entire nervous system in an attempt to protect me from myself!

Network Spinal Analysis works to utilize the energy in the spine to realign itself without the standard “cracking” of a chiropractic adjustment. The practitioner helps to point out where the energy is blocked, and gets the central nervous system to pay attention in an entirely new way. New neural pathways are opened up, and more energy is brought in to the spine, so that healing can occur. Within a few months, my back pain ceased, and almost a year later, my mast cells are beginning to behave better too.

Last summer, my son, Morgan, began seeing this NSA chiropractic doctor and almost immediately was able to go off of his Pulmicort steroid. I wasn’t sure that was a good idea until we went in to see the allergist and all of his breathing tests were normal!! He has had to use a rescue inhaler only once since then for a few days during a respiratory infection. He’s had no chest tightness, and feels great.

I really believe there is something to raising the energy in the body to create healing. Let’s face it, all the antihistamines and steroids are doing is helping with the symptoms. I really want my body, and my son’s body, to begin healing. Since Morgan and I had such good results with this new modality, my husband and daughter have also begun receiving entrainments (what the doctor calls the session). They too have had remarkable results with less body aches, better digestion and overall energy becoming higher.

There’s another line of thinking about accessing a higher energy through meditation to create healing. Dr. Joe Dispenza has written a book, “You Are the Placebo” that asks, “Is it possible to heal by thought alone—without drugs or surgery? The truth is that it happens more often than you might expect.” His book details scientific research where people have healed themselves, and where others have made themselves sick, simply by their thoughts and beliefs. I know that my mind is certainly powerful enough to create anxiety symptoms in my body. It’s powerful enough to create a stomach ache out of fear or worry. It’s also powerful enough to boost up my energy and overall capabilities to handle a crisis of one of my children, regardless of how I’m feeling physically in the moment.

I have begun to sit in meditation daily for the last 4 weeks, based upon the guided meditation provided in the book. I’ve already seen and felt a difference. I’ve been able to decrease the amount of medication that I take for my mast cell disorder! It’s mind blowing stuff, when you really think about it. Are our minds really powerful enough to heal our bodies? I am becoming a believer!

 

 

 

My Obsession with my Child’s Health

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Ever since my son, Morgan, was a baby I’ve been obsessed about his health. I have a daughter five years older than Morgan, whose health I’ve also been concerned about at times, but never to the level of obsession that I’ve felt with Morgan. What is it about his health that creates these obsessive thoughts and behavior patterns in me?

If I analyze it (which I’m prone to do to try to find some missing tidbit of information that could help him!), I think that when Morgan got Respiratory Synctial Virus at 3 weeks old, I saw how much his health relied upon me ensuring that he got round the clock treatments of Albuterol and that he always had the oxygen canulas in his nose, even while I was breastfeeding him. This went on for 3 weeks, and it started my obsessive fear that if I did something wrong, my son’s health was going to suffer.

Once he was diagnosed with a peanut allergy at 9 months old, the health ante was raised. Now I was responsible for ensuring that he didn’t have any life threatening reactions to peanuts. I got a long list of items from our allergist that I needed to do to ensure that a reaction never occurred – read every label of every food every time he ate it, cook only safe foods in the house, make sure he didn’t touch anything he was allergic to…You get the point! You’ve been there too! If I wasn’t already tending toward obsessive/compulsive behavior, I’d have been put on the path with the doctor’s directions! Adding asthma to the mix in his toddler years once again upped the ante, and then adding more foods to his long list of severe allergies – tree nuts, sesame, fish and shellfish – raised my obsessive behaviors to a fever pitch.

Through the years, I’ve met so many mothers whose own health has deteriorated as they attempt to take care of a child with severe health needs. We parents of children with food allergies seem to suffer the most of any parents I’ve met. I think it’s because so much is riding on our ability to create a safe environment for our children at home, at school, with family and friends, at playdates – the list is endless. And research has shown that my anxiety about any of these issues can play out in my child’s emotional balance. Which means I need to be concerned about all of these life issues, but not anxious, fearful or worried! And that is so difficult.

If you read my son’s most recent blog post about his first quarter of college, you know that even with his excellent grades and heavy workload, he came home after having been sick throughout the previous 10 weeks to be diagnosed with mononucleosis. He was thankfully able to rest during the school break, which was 6 weeks long for him, and begin to get well. When he left to go back to college , he was by no means 100%. He’s still in need of an abundance of sleep, and just not fully energetic. This sets off an obsession of worry for me that he will overdue it, stay up late, volunteer for too many activities, and have another college quarter full of sicknesses. Or maybe he won’t be healthy enough to go to school at all! I’ve practically made myself sick with all my thoughts and scenarios.

I’ve heard men say that it’s a “Mom thing” to worry about our children and their health and safety. But what are we doing to our own health and peace of mind? Is it necessary to worry? Or would concern suffice?

I have an immune disorder – a mast cell proliferation in my gut – that definitely requires that I focus on my health. The ultimate fear for me with Morgan’s food allergies has been that I’ll do something wrong – serve him a food that will cause a fatal severe reaction, or that someone else will – and that has motivated this obsession with perfection in the area of food allergies. After all, our allergist has told us what he needs to be safe! I have all the data to show that I need to be this worried. Yet, me worrying about his health has taken away from my ability to focus on my own.

 

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How can we parents of children with food allergies find a balance of safety without obsessing over our children? If you have an illness that also needs to be managed, how is that possible? I have a few ideas from what has worked for me –

1) I find it helpful to remember that there is a God and it’s not me. I can teach my son to always carry his EpiPen, to train others, to eat safely, and to take care of his health – that’s my footwork as a good parent. Then I get to turn the rest over to God or to whatever benevolent spirit you might believe in.

2) God has no grandchildren. Very similar to #1 above, but this reminds me that I’m not the go-between for everything that goes on in my children’s lives. My children get to have their own lessons in life, many of which have nothing to do with me. It was vitally necessary to teach Morgan how to advocate for himself, because I wasn’t going to be with him always, but it’s up to him to utilize that training now that he’s almost 19 years old!

3) I am responsible for taking care of my own health. As you hear on every airplane flight, “Put your own oxygen mask on first, and then assist your child.” In the book by Dr. Joe Dispenza called “You Are the Placebo”, he states, “You must observe and pay attention to those emotions that you’ve memorized and that you live by on a daily basis, and decide if living by those emotions over and over again is loving to you.” What better way to demonstrate to my children, who both have health issues, how to take care of themselves than for them to watch me on a daily basis take my medicines, watch what I eat, get enough sleep, and turn over those things outside of my purview.

4) I’ve ceased to expect perfection – from my son or from myself. Let’s face it, accidents happen. I’ve purchased foods from the grocery store that had an allergen in them (the box had a ‘may contain’ statement). I certainly didn’t mean to do it, and thankfully only a small reaction occurred. Another time, my son caught the mistake before he ate the food. This was a great learning lesson for everyone.

5) Forgive myself and others. Tying onto #4 above, I’m not going to be perfect, and when I’m not, I can apologize and then work on forgiving myself. Sometimes with other people’s lack of understanding of food allergies, I’ve had to work harder at forgiving them.

6) Practice the Serenity Prayer which is “God, grant me the Serenity to accept the things I cannot change; Courage to change the things I can; and the Wisdom to know the difference.” There are a lot of things I can and should do for my son’s health. Worrying about him isn’t about acceptance and it isn’t about courage either. Worrying is wasted energy. I look for what I can do, and do that. Now that he’s in college, I have far fewer things to be courageous to do for Morgan. The most courageous thing is to hold my tongue, and allow him to learn what he needs to learn in life at as young of an age as possible.

7) Talk with someone else. I have friends and mentors who have helped me through the years by listening to me recount situations, obsessions and worries. They listen, and by listening the burden is shared. Suddenly it doesn’t seem as big of a deal as it did when it was rolling around in my head. And many times I find alternative ways to look at the health issue that seemed insurmountable.

8)  Stay in the here and now. Many times my obsessions are spawned out of fear of the future. I want to control what’s going to happen, and I want to make sure that my son is always safe. We did everything right to manage food allergies in college, and didn’t know that mono would be the tripping point. This shows me that I just need to do what’s in front of me to do, and the future will unfold as God sees fit.

9) Try to find the humor. If I’m not laughing at myself, I’m sure someone else is! After all, flapping my mother-bird wings is a sight to behold!

So, here’s to good health for all of us parents! Here’s to proper concern, and less obsessive thinking. I, for one, need to remember that daily!

The First Quarter of College by Morgan Smith

The first quarter of college was exhilarating!

The University of Denver (DU) runs on a quarter system: there are three 10-week quarters during the regular school year plus an optional summer quarter. I went up to school the last day of August for a week-long orientation at DU before classes began and I arrived home the week before Thanksgiving after successfully completing all my finals.

Before arriving at the school, we met with dining services to discuss food options (my mom wrote an entire blog post here about that visit). DU uses Sodexo as their food provider for their three different dining halls, convenience stores, and various cafes around the campus. In the past, I haven’t had extraordinary success with Sodexo; however, at DU, they are simply the best. When we originally visited, the executive chef at the local dining hall – Nelson Hall – had agreed that I could ask him anything about any of the food served, what it contained, and how it was prepared if I didn’t feel safe eating it. Needless to say, he and I have become really good friends. The dining hall has lots of good options for all meals: fruits & veggies are always available and safe flatbread/pizza is available for lunch & dinner. All the chefs are trained by the university on how to use an Epi-Pen as an extra precaution just in case something occurs.

A dining hall, only a little farther north on campus, has a food court-style service: there is a Greek option, an American option, a Mexican option, and an Asian option. The nice thing about this dining hall is that the menu never changes: they always offer the same food no matter when you arrive. More importantly, the Mexican option is 100% safe (after discussions with the executive chef at that dining hall) and the Greek option is safe as long as I don’t eat the pita bread. They also have “to-go” boxes so I can bring the food back to my dorm if I don’t want to eat it there.

Honestly, the food is working out superbly. I typically go grab the Mexican option for lunch in between classes and select one of the safe options at Nelson for breakfast and dinner. I always have friends around when I eat, which is great.

Classes are pretty difficult overall. I only had one 8am class this quarter and there was a surprising lack of food from students in the class. I decided not to tell any of my professors about my food allergies since I didn’t feel it was pertinent to my success as a student. Given that college is very individualistic, the expectation would be for me, and not for the professor, to ask someone not to eat a PB&J next to me. There was never any issue in any of the classrooms related to food. I kept a wary eye out in that 8am class just in case but the only potential “issue” I ever encountered was someone eating a Snickers on the other side of the classroom. I certainly was not worried.

I live on the Pioneer Leadership Program (PLP) floor at DU. PLP is a leadership program at DU that allows a student to obtain a minor in leadership studies. There are a lot of programs like this at different colleges around the nation; however, PLP is unique given that the students of the program live together on a floor in a dorm. Each year, PLP takes 66 new students and these 66 live together on the floor. They’re very driven, responsible, and intelligent students and it’s a blast to live with them! Our Residential Assistants (RAs) are older PLPers who know what the first year is like.

My roommate is phenomenal. He’s so understanding and we established from the get-go rules about food in the dorm: none of my food allergens in the room and if he eats anything that I would be allergic to, he just washes his hands. We have a refrigerator, but typically it’s stocked with caffeinated drinks, not food. We have pretty similar sleep schedules and personalities, so we get along super well. I feel super lucky to have such a good friend as a roommate (but honestly, I get along with everyone in PLP really well).

I applied before the beginning of the school year for an air conditioning unit that filters pollens out of the air to control my asthma; the university approved my accommodation. My roommate was definitely grateful for some cold air given we have windows that face the sun the majority of the day. This has helped immensely and I haven’t had any breathing problems.

I still carry two Epi-Pens and Benadryl in a Garmin case in my right pocket at all times. This is true when I eat, when I go to class, when I walk around the dorm, or really anytime I’m not sleeping. I also have a massive container under my bed with extra medication: Epi-Pens, albuterol, Pulmicort, Nasacort, etc. My roommate has a very similar tub under his. We constantly joke that we could run an underground pharmacy out of our dorm room if we wanted to.

As with any new living situations come new challenges: surprisingly, none of it involved my food allergies or asthma. My first quarter was plagued with sickness, instead.

The first week of class (of all weeks) I got superbly sick that I actually had to go home Wednesday through the weekend to recover. I had a nice combination of headaches, nausea, a fever, and exhaustion for quite a few days; while antibiotics knocked out the majority of my symptoms, I found out (through blood work) that I had an early infection of mono. Thankfully, I didn’t have any continuing symptoms.

I got a head cold halfway through the quarter and a stomach bug near the end of the quarter, and some close friends in PLP were happy to help supply (safe) chicken noodle soup to help me out. I made it through finals week and went home the week before Thanksgiving – the end of the 1st quarter.

The day before Thanksgiving, I woke up with swollen lymph nodes and was pretty tired. Through the weekend, I developed a fever, a superbly sore throat, and once again, I became absolutely exhausted. This time, it was a full blown “re-activated” infection of mono. I’m happily recovering after a week of antibiotics to combat a secondary infection of tonsillitis with plenty of rest, fluids, and reading. Thankfully, I’m home until the New Year so I have plenty of time to recuperate my health and prepare myself for the next quarter.

Certainly, I had more than a couple 2:30am mornings this quarter working on school or hanging out with friends. I think I might be limiting these next quarter to make sure my immune system can cope with everything.

If I had any one suggestion for college, it’s to talk to people. They are your best resources for your health, happiness, and sanity in school. When you’re sick, they can bring you fantastic chicken noodle soup. When you’re healthy, they can be excellent resources for studying, motivation, and even for a break every once in a while.

Overall, my first quarter was absolutely fantastic. College is a blast and I’m so grateful for all of the wonderful people at DU that make it a safe opportunity.

Happy Holidays and I wish you the best for 2015!

What Awakens You at 2 am?

For those of us with children with food allergies, awakening in the middle of the night worrying about cupcakes isn’t that unusual! Of course, if you share that concern with your neighbors who don’t have to worry about unsafe food, they may not understand. Food allergy parents understand all too well!

My son started college in September, so I was surprised to find myself awake at 2 am one night recently worrying about our son, Morgan. We had worked really hard to create a safe eating experience for him in the dorm cafeteria, and it was working great. His roommate was more than understanding about not bringing in Morgan’s allergens into the dorm room. Everything was working well – why was I worrying?

Morgan was heading off on a weekend trip with his leadership class. Prior to him leaving for college, we had talked with the coordinator of the leadership class, and the fact that there would be an overnight trip to a cabin in the mountains. It was the night before this particular trip that I found myself awake concerned if he had contacted the chefs like the coordinator had said he could. I was more concerned that he was also bringing along his 2 extra EpiPens (he always carries 2 in his pocket, but I wanted to ensure he was going to be extra cautious)!

So I lay there wondering if Morgan would think I was crazy if I sent him a text at 2am asking him to please remember his 2 extra EpiPens. After 30 minutes, I no longer cared what he thought and went to find my phone to fire off a text to him. Funny thing – he wasn’t up in the middle of the night worried like I was!! In fact, he had already handled the conversation with the chefs and had packed the extra EpiPens – as per his text back to me at 7 am.

No matter what his age, and how many times he has taken care of himself – I’m still a Mom. After 18 years of monitoring his food, his environs and his safety, it’s very difficult to let go and allow Morgan to take the baton and manage his food allergies himself. He’s doing a great job!

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Parents Weekend – November 2014

 

 

One week into college – and he’s sick!

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Our son, Morgan, had a great first week of Orientation at the University of Denver (DU). Then, on the first day of classes, he began to get sick – really sick! He continued to have a fever and chills for two days. He knew to start up his Pulmicort inhaler immediately. We discussed the breathing difficulties the Enterovirus 68 creates for children and teens sending them to the ER and Intensive Care. Yet Morgan didn’t have any classic cold symptoms – no runny nose, no sneezing, and only a mild sore throat.

After two days of feeling awful, and missing a few classes in order to sleep, he called me, aka Mom. At that point, I suggested that he go to the Health Clinic on campus; however, it was almost 7 pm and the Clinic was closed. So, we talked and he decided to go to a local Urgent Care. He was feeling so poorly that he asked his roommate to drive him. The wait was over an hour, and the doctor didn’t know what he had. The strep test came back negative, and sadly even if Morgan has strep, the test always come back negative. The doctor prescribed a very strong antibiotic for him to take to kill off any bacteria in his system. He took the antibiotic, and then was up during the night vomiting it back up.

By the next morning, he was feeling so awful, that we talked about him coming home to see our family doctor that has known him his whole life. Once he got into this doctor’s office, his fever was almost 103. He had vomited during the drive home from college, and again in the doctor’s office after another strep test – which also turned out to be negative . Blood was taken to ensure he didn’t have mono, but it would likely come back negative because Morgan didn’t have symptoms long enough for the test to be accurate. The doctor gave him a antibiotic specific to kill off strep.

We also took Morgan to a chiropractor that our family has been seeing who utilizes Network Spinal Analysis (NSA) and Somato Respiratory Integration (SRI) in her practice. She is amazing when it comes to diagnosing the underlying issues that occur with our bodies – and not only the spine, but all illnesses. She determined that Morgan had a bacterial infection just by the way his liver was reacting. She gave him a treatment, plus had him soak his feet in a foot back with herbs. Between this treatment, and the antibiotic, Morgan was feeling much better the next day. 

One day later, however, he broke out in a rash that covered his face, torso and chest. Morgan called back in to the family doctor, who thought it must be some type of virus, and the doctor suggested that he stop taking the antibiotic! In other words, he didn’t know what Morgan had either. Morgan has continued to get better, and has also continued to take the antibiotic.

I wanted to write a post about this because part of sending our children with food allergies off to college is the “hope” that they can take care of their own medical needs, or find a doctor that can assist. In addition to monitoring their food, training others on their EpiPen or Auvi-Q, and if they have asthma, being able to monitor that – they also need to know how to manage the current healthcare system! It’s a lot to take on at 18 years old. And it’s something to consider when sending your child with food allergies off to college where they go far away.

What would you do if your child got REALLY sick and they are 2000 miles away? We were really grateful that Morgan is only 60 miles away, and that we could pick him up and bring him home to see doctors who know him well. We also wanted to see him ourselves to determine just how sick he really was. He was home for 2 1/2 days, and slept most of the time. We took him back to school when he still had a rash, but was feeling much better.

What can you do to make sure that your child is ready to manage doctors in our healthcare system while away at college? Well, here’s what we did long before Morgan left for DU:

1)  Have your child fill out all the doctor office’s paperwork each time you go in. We started this when Morgan was about 12 years old. Name, address, phone number is the basics!

2)  Review with your child what medications they take, what time they take them and what strength. Every time Morgan visited the allergist, he had to write this down on the intake paperwork. It helped him to know exactly what meds he takes. He was very adept at this by high school age.

3)  Have your child make an appointment with a doctor. This is especially important for them to practice when they aren’t feeling well. It’s really hard to deal with a doctor office phone tree when you’re healthy. When you’re sick and have to press a lot of numbers in order to make an appointment, it can be very frustrating. This is good to practice in high school.

4)  Get a health insurance card for your child to keep in their wallet. When you go into a doctor’s office with your child, have them present the card. Your child needs to know if they will have to pay a copay or not. Who is responsible for the bill? Is it Mom or Dad that holds the insurance? All of these details are vital when they go off to college.

5)  Decide who is going to ensure that medications that are taken get refills in a timely fashion (parents or student). Some insurance companies require that refills are obtained through mail order only. Which address do you want to use – home or college? Who is going to pay?

6)  Decide if your child will give you access to their medical records once they turn 18. With the HIPAA (Health Insurance Portability and Accountability Act) laws, at the age of 18, your child has to either handle their medical situations themselves or to authorize you, as a parent, to have access to their medical records. Believe me, even trying to get a doctor to call your child back can be problematic if you aren’t signed on as an authorized party on the HIPAA paperwork!

Thankfully, Morgan knew what to do when he was sick, and he also knew when it was more than just a mild sickness and time to call home. We’re grateful that he learned what to do before he left home, and we’re especially grateful that he’s feeling almost back to normal now!

 

Starting College – We’ve Worked Toward This Goal Forever!

Our son, Morgan, started college at the University of Denver (DU) this week. What a step it is to let him go, to make his own decisions, to take care of himself in the dining room, and to teach whomever he wants to teach about administering his EpiPen! This is what we’ve worked toward since he was first diagnosed with food allergies. It’s likely that he will make decisions different than I would, or than his Dad would. That’s part of growing up and learning!

We had worked toward his first day of college with DU Administrators for a while. Morgan, my husband and I met with the Disability Services Office back in March when we toured the campus. We discussed what accommodations he would need – safe food, no allergens in his room (no peanuts, tree nuts, sesame, fish or shellfish), and an A/C unit in his dorm room to mitigate his asthma. They didn’t think any of these would be an issue, but required that we complete some paperwork to get the university to pay for his A/C unit. We were given contact names for the chefs at DU to personally speak with them, and it was up to Morgan to discuss his needs with his roommate. If there was an issue, he could then get ‘outside’ help.

We problem solved various scenarios with the Housing Office at DU what could work for Morgan to attend DU if he was unable to get dining services to provide safe meals, and/or unable to get the roommate situation worked out. One of the Housing Office’s student employees has food allergies, and she talked in detail with Morgan about how she was safely able to eat in the dorm, how she texted chefs about her meals, and never had any allergic reactions! That encouraged us, but we also wanted a back up plan. The Housing Office offered that he could live in a dorm that had a kitchen in between two rooms. He could then have an RA (Resident Advisor) living in the other room to lessen the need for education of his food allergies. (Normally 4 boys live in these rooms, 2 on each side). Morgan would then have to shop and cook for himself. His preference was to live in a ‘regular’ dorm room with the Pioneer Leadership Program (PLP) – a Living and Learning Community that he applied to participate with. His one roommate would be a boy within this program, and Morgan would therefore eat in a dining hall.

Morgan and I roll played a few scenarios: what would you do if a professor is eating one of your allergens? (His answer: probably nothing unless I had to shake a hand, and then I’d tell them.) Where is the nearest hospital? (He looked on a Google map to find one). What would you do if your roommate is eating one of your allergens? (His answer: Talk to him about it!) What would you do if you knowingly ate one of your allergens – accidentally – but didn’t have any symptoms? (His answer: give myself an EpiPen and then call 911).

Morgan had several conversations with the head chef at DU over the summer, and he felt confident that he could live in the PLP dorm and eat safely since the cafeteria already labeled all of the foods that they made, and all the chefs were trained on food allergy awareness. Morgan and I met with the chefs one week prior to the school year starting. I wrote about that in a blog post here.

Morgan received his roommate assignment in July and started Facebook conversations with the young man. They met for the first time a few weeks before school started in a coffee shop in our hometown when his roommate was visiting extended family. They talked for 3 1/2 hours, and Morgan came home and said he never mentioned food allergies! I almost wanted to step in and start a conversation about how important it is for his roommate to be aware of his food allergies! Instead, I decided that I needed to step back and let him manage it. Morgan did mention his food allergies in a text message (kids these days!!) a few days prior to showing up at DU. His roommates response was, “Darn, I was really planning on eating fish in the room!” Apparently, it was no big deal to him at all to keep Morgan’s allergens out of the room.

When we arrived at DU, carting wheelbarrows worth of clothes and accessories into Morgan’s dorm room, we found the newly purchased A/C unit in a box. After inspecting the unit, my husband determined that he hadn’t brought the proper tools to put it together. I called the Housing Office to ask if someone was able to put the unit together for us. Within 5 minutes, the director of Housing was in Morgan’s room introducing herself! She called maintenance who had the unit operating within the hour!! Amazingly quick work! Morgan has been sleeping in air conditioning ever since. His roommate’s mother was thrilled since hayfever was a common issue for her son. She was hoping his allergies get better too!

Morgan brought practice EpiPens with him to college, with plans to train his roommate and others in the PLP program. Several of the chefs we met are EpiPen trained. Morgan is also capable of administering the EpiPen to himself. This is something I have to let go of. Morgan has ALWAYS carried 2 EpiPens since he was in middle school. I trust him to properly care for himself by training others.

At lunch the first day, Morgan went and talked with his chef contact about what was safe to eat, and whether he needed anything specially made. My husband and I were at DU for three days of Parent Orientation, and also ate in the cafeteria with the students. I was thrilled that they had a microwave out in the dining area for me to heat up my special meals, and my husband was thrilled with the tasty food! Morgan has had no problems finding safe, healthy food at each meal. At the last lunch that we ate with Morgan before we departed, the chef came up to him and asked him, “Where were you at dinner last night?” Morgan told him that he ate at a different dorm cafeteria, to which the chef replied, “Here’s my cell number. Make sure to text me when you don’t eat here so that I know you’re okay!” How wonderful that was to hear!

This is just the start for us, but a very good start it was! It takes a good amount of planning to get your child with food allergies to college, but it can be done. It can be especially rewarding when the college is so well-informed and willing to provide excellent care!

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Off to College – But Meet with the Dining Staff First!

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We are down to counting the days until our son, Morgan, goes off to the University of Denver (DU) for college. Before he moves in, we wanted to meet with the chef at the dorm cafeteria to discuss food allergies and safely feeding Morgan. Morgan had spoken with the DU head chef when we visited DU back in March, before he had made a firm decision on where he was going to school. The chef had suggested contacting him via email a few weeks before the school year started to discuss menus. Morgan took the lead in this, and he arranged a meeting with the chef for today, before DU starts its Orientation Week over Labor Day weekend.

Instead of just meeting with the head chef, we also met with 4 other chefs responsible for the various dorm cafeterias across the campus! What a welcome sight that was to see so many individuals interested in food and in Morgan’s safety! DU uses Sodexho for their food service, but this is certainly a different type of Sodexho than I have run into in K-12 schools or camps.

At the chef meeting, we discussed what foods Morgan was allergic to – peanuts, tree nuts, sesame, fish and shellfish – and found out that one of the chefs has similar allergies. Wow! How comforting that is as a parent to know that a chef not only knows what cross contact is, but also knows all about an EpiPen, and reading labels. In fairness, all of the other chefs also knew about these items too, and were more than willing to provide specific brands of bread, which is one of the biggest issues we have in finding safe bread without cross contact of sesame and nuts. This means they will specially order, or go to the grocery store, to purchase two specific brands of bread that are sesame and nut-free (Pepperidge Farm Pumpernickel and Roman Meal) for Morgan.

All of the foods/dishes in the cafeteria are labelled.  The chefs were more than willing to make a safe meal for Morgan should he feel that was more to his comfort level, especially when one of his allergens is on the menu. And he was asked to talk with them at the beginning of every meal to discuss options.

The chefs all have experience with multiple students with food allergies in the past, and are prepared for any type of food allergy. We discussed the onslaught of forthcoming students with food allergies, and their mantra over and over again was, “We just want to feed you what you want that’s safe.” How wonderful is that?!

Two of the cafeterias have similar layouts with a pizza bar, a salad bar, international dish, and grilled protein. One of the cafeterias is more of a Food Court style where students can take meals to go. Also, the library has a cafe with foods that students can purchase.   On the DU campus, there is a Subway – which is safe for Morgan – and is covered under his meal plan. He has many options, and certainly shouldn’t go hungry!

We are thrilled that we feel great about sending Morgan off to college knowing that so many chefs are interested in his well-being. And Morgan is excited for this next opportunity!

 

Nationals Trip for Speech & Debate

My last high school-related adventure involved traveling to Kansas City for the National Speech & Debate Tournament, an event I had qualified to attend earlier this year.

Before we left, I gave a health care plan to my Speech & Debate coach that explains procedure for an anaphylactic reaction, my allergies, and has an array of information on who to contact. I trained my friends/teammates on EpiPens as well.

We left Sunday morning from Denver International Airport, flying Frontier to Kansas City. Frontier does serve food, but you have to pay for it (i.e. there are no complimentary drinks or food for most passengers). I asked the stewardess the moment I got on the plane if they served peanuts, and she replied, “You can certainly buy them.” I quickly assured her I wasn’t going to buy them due to a peanut allergy. Since the flying arrangements for this trip were made by the school, all six of us traveling to Kansas City got to sit together. This was important since peanuts could still be served on the flight to someone who was interested in buying them; that issue was mitigated since I was sitting with my friends.

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After arriving to the hotel, it was about 1:00pm (an hour ahead from Denver), and we were pretty hungry, so we walked across the street to Panera Bread. Panera is notable for its homemade bread that is mostly all cooked together. I talked with the manager about some safe options (it differs by store on how they cook their bread), and settled on a simple grilled cheese for lunch. I had a salad at Panera for dinner, probably the far safer option due to the possibility of cross contamination. Weighing the information given though, I decided that the grilled cheese was safe since it was not cooked with nut breads and they have rigorous cleaning procedures.

Speech & Debate tournaments occur in high schools, middle schools, and sometimes (at Nationals) in elementary schools. In Overland Park, Kansas (where we were), they had dozens of different schools for the thousands of competitors, each dedicated to a specific event (like solo debate or humorous interpretation). We had our coach and two parents joining us with rented cars so they could go and buy safe food for us.

Breakfast was served at the hotel and there was a McDonalds across the parking lot for variety. I found out I could eat McDonald’s breakfast items after my California trip (read about it here). Lunch and dinner varied by days and locations (if we were at a different high school, we might eat something different).

To be honest, each day was about 17 hours (from 5:30am to 10:30pm), so I don’t remember exactly which days I ate what. Here’s a list of restaurants I did eat at:

  • Chipotle – this was for dinner (I believe) Tuesday evening. It’s a safe option for me and it’s a chain restaurant, meaning most (if not all) of its locations serve the same thing.
  • Applebee’s – another safe chain restaurant that was dinner the third night there.
  • Jimmy John’s – an easy, safe option for lunch sandwiches. The team got Chick-Fil-A, but my coach made sure that I got a safe option for food, and made arrangements for Jimmy John’s (she’s the best coach, by the way).
  • Potbelly Sandwiches – another option for lunch sandwiches. I hadn’t had Potbelly’s before, but I checked their website and called them up and talked with their manager about breads, sesame, and nuts. Everything was safe (besides their cookies) and it worked out great!
  • Kolache Factory – Kolaches are…dough balls that have filling like cheese & sausage, or pepperoni & mushrooms. Once again, I hadn’t had Kolache’s before, but I called ahead and talked with the owner about their procedures. The breads that do contain nuts are cooked entirely separate from the regular dough (at least at this location). I have to say, that was an AMAZING lunch – they were so good (and safe!)
  • El Fogon – a local Mexican cuisine restaurant we went to for lunch. Just like every other restaurant I hadn’t eaten at before, I called ahead. Notably, Mexican food is mainly safe, but various styles can include sesame and nuts. El Fogon did not use either in any dish or topping or side, which was great news! Even better, the food was absolutely delicious (I got a steak quesadilla)
  • Cinetopia’s Food Service – the last night we were in Kansas City, we went and saw a movie at the local movie theater. Unlike most, they have these “family rooms” with couches and reclining seats instead of the regular airpline-style seating. You also get to order food from their menu. I checked with the staff about their options and settled on another Mexican-style evening with nachos and a quesadilla.
  • Jack Stack BBQ – the crown jewel of our food adventures, Jack Stack has some of the best BBQ in Kansas City (if not the country). Barbecue sauce can be especially dangerous since some restaurants use peanut butter as a thickener and/or nuts as a spice. Jack Stack uses neither in their homemade, exquisite BBQ sauce. I have to admit, that was the best food we had all week!

Story of the Week: Due to its fame, Jack Stack’s is always pretty busy. Instead of dining in, we went over to their takeout side of the restaurant. While waiting for our food to be ready, we got in a nice conversation with a man who was picking up his own BBQ meal. Very genuine guy, who was interested in Speech & Debate and our interests. Right before leaving, he actually gave our coach $200 to spend on dinner for another night!! (We used it at the Cinetopia because, while their tickets aren’t that much more than normal, their food is abhorrently expensive). It was a very kind gesture.

This was the longest trip that I’ve been through where we haven’t brought/planned food. I had combined a list of possibly safe restaurants before the trip began and sent it to my coach (it included Jimmy John’s, Jack Stack’s, Chipotle, and Applebee’s). That helped dictate a few choices, but we also got recommendations from the locals (for El Fogon and the Kolache Factory, for instance).

Here’s a few tips on dealing with new restaurants:

  1. Always talk to someone in charge. Servers are knowledgeable about the menu, not how the food is prepared. Find a manager or the owner or the chef and talk to them about food preparation and the process of cooking food. Also talk with them about ingredients.
  2. Try and eat at “safe-cuisine” restaurants. Typically, Mexican cuisine is safer than, say, Asian cuisine for me (not only due to the use of shellfish & fish in Asian cuisine, but nuts as well). I’d automatically feel safer at a Mexican-style restaurant than an Asian-style restaurant.
  3. Call ahead, if possible. Don’t waste your time at restaurants that aren’t safe. Call ahead and talk to someone in charge about food. If it turns out the restaurant is not safe, you didn’t waste your time and you can find another safe option.
  4. There is always a risk. It’s really unavoidable – there is always a risk involved in eating new food. I ate at more new restaurants during Nationals than I had in the past 5 years combined! However, I felt safe and comfortable doing so.
  5. The two-minute rule. That being said, I’m still cautious! This is a personal thing that I do: when I try food at a new restaurant, I take a small bite and wait two minutes before eating anything more. From my previous experience with anaphylaxis, my first symptoms occurred within the first two minutes after eating fish. I cautiously eat a second bite after the first two minutes and wait a little while longer. If nothing happens, I eat my meal entirely. If something does happen, I would immediately tell someone about it.

Nationals was one of the best experiences I have had – not only due to the intelligent and humorous people at the event, but also the safe food that was readily available. I also broke to Top 80 at Nationals in Lincoln-Douglas debate, a solo debate centered around values & ethics.

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If you would like to view the National Tournament Highlight Video (published by the National Speech & Debate Association), click here. I make a cameo appearance at :49 (I’m in the background looking up. The camera isn’t focused on me). Plus, there’s a great music video at the end of it.

A School District Food Allergy Thank You!

Some of you may think that you live in the best school district for managing food allergies. Some of you may think you live in the worst! For us, we KNOW we live in the best district! Many of you have heard me speak about how wonderful our district has been about providing 504 Plans, guidelines, policy and most of all care for food allergy students.

Since Morgan recently graduated, we thought it was time to give Academy School District 20 a formal thank you tonight by attending the school board meeting.

Here’s a part of what I shared:

Our story for tonight begins in 1999, when we began looking for a preschool for Morgan. No private preschool in Colorado Springs would accept him as a student because of his life threatening food allergies. They didn’t want to take on the liability. I was heartbroken, and I didn’t know where to turn.

I approached the District 20 preschool and explained his severe food allergies to the teacher, Miss Linda. When I explained that she would need to keep his allergens out of the classroom and learn to administer an EpiPen, she stated “That’s It?” I can’t tell you the relief I felt. Morgan enjoyed two years of preschool there before attending Foothills Elementary school for kindergarten. That’s when the real challenge began.

There have been so many teachers, counselors, school nurses, custodians, bus drivers and staff members who have been willing to learn about food allergies, and to help Morgan stay safe at school. It would be impossible to thank all of them, but we are so appreciative for how wonderful the D20 teachers and staff have been to keep Morgan safe and included.

There is one Administrator at the district level that we have to thank.  The Director of Legal Relations has been instrumental with the creation and ongoing efforts of the Food Allergy Task Force which began in 2007. This committee has spawned similar groups in school districts across Colorado. The creation of guidelines for severely allergic students in our district was used as a basis for policy at the state level in 2009 when legislation was introduced and passed. District 20 has always been on the forefront in education, and your support for guidelines and policy to keep children with food allergies safe continues that stance.

Morgan never had an allergic reaction at school, and that was due to the incredible teachers, staff and administrators in District 20. 

Here’s part of what Morgan shared:

I’d like to directly thank two individuals who are also here this evening. First, my elementary school counselor. When I first entered elementary school, there weren’t any procedures or policies to deal with food allergies. She had the foresight to put me on a 504 plan that provided accommodations for me to safely attend school and be included – a plan I kept even through my Senior year of high school.  

Second, I would like to also thank my Principal at Foothills Elementary, for being my champion. She took a hard line and kept a strong policy with parents who didn’t want to abide by classroom accommodations, like an allergen-free classroom. Some of these parents, as I’m told, were particularly vicious, but she kept her stance that school needs to be safe for all children to attend, and I would like to thank her for that. 

But finally, I would like to thank you, all of you. You have created one of the kindest, most open and accommodating school districts in the nation. I cannot express my gratitude for your willingness to help me and other food allergic students in this district. Many other children are not as fortunate to have such welcoming attitudes; they face obstacles on a day-to-day basis, and their parents fight teachers, principals, school boards, and even superintendents to keep kids safe.

Thank you. Genuinely, thank you for 15 wonderful years. I would not be standing here, a successful graduate of Air Academy High School without you all, teachers and administrators alike. I’ll be proud to represent Academy School District 20 at the University of Denver as a Boettcher Scholar in the fall. 

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Morgan and I had the pleasure of posing for a picture with Academy School District 20 Superintendent Mark Hatchell at the Board meeting. His leadership keeps more than 600 students with life threatening food allergies safe and included in the school district.

I hope that your experience with your child’s school and school district is as positive as ours has been!

 

Beyond Our Wildest Dreams

A friend of ours says that God answers prayers in one of four ways:

Yes,

No,

Not Yet,

and Beyond Your Wildest Dreams!

When my son, Morgan, started kindergarten in the Fall of 2001, I prayed every day when I dropped him off at school, “God, please take care of my boy!” It was such a part of my routine, and it helped me to be able to walk back home knowing I’d done everything that I could do to keep him safe, including a little prayer humbly asking for help.

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What I didn’t know then is the many positive things that Morgan  – and our family – have received because of his food allergies. It’s so easy to focus on all the hardships and issues that food allergies create. I don’t need to list those here, because if you’re reading this you no doubt know what those are! Back then, I couldn’t imagine what the future would look like for Morgan blazing the trail in our school district.

He was the first student to have multiple life threatening food allergies. He was also the first student to have a 504 Plan for his food allergies. An entirely new culture was going to have to be created in the school, and there were a lot of parents not happy about that!

Now that Morgan has just graduated from high school, I have been reflecting on his entire school career. Some of the good things that Morgan has received from his food allergies are:

  • Compassion for other children who manage an illness
  • A desire to read (at a young age) to be able to read food labels
  • A healthy lunch for school each day made by his Dad in elementary and middle school – usually with a positive hand-written note included
  • Learning how to advocate for himself in various situations, not just when it involves food
  • Close friendships created with kids across the USA by attending food allergy conferences
  • An ability to tell who really is his friend, because real friends care about keeping him safe
  • Great food at overnight camps since Mom packed his safe food
  • A healthier diet than most of his peers!
  • The ability to mentor younger children with food allergies
  • Learning that he is a REALLY good public speaker
  • Creating his own website design company (since working a minimum wage job at a restaurant wasn’t going to be preferable for money-making)
  • Another reason to say NO! to drugs and alcohol
  • A distinguishing element when he applied for college scholarships

It’s been quite a learning experience for him and for me to get him safely through school and to keep him included in activities. He went from preschool through high school in Academy School District 20 – fifteen years in all – without an allergic reaction. We certainly didn’t know that was possible when he began school. That result is beyond our wildest dreams and certainly an answered prayer!

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In the Fall, he is off to the University of Denver (DU), where I’m sure he will continue to blaze a trail with food allergy advocacy. And I’ll bet that when my husband and I drop him off at his dorm, I’ll be saying a little prayer, “God, please take care of my boy!”

Checklist for College with Food Allergies

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I’ve been asked recently to provide a checklist for preparing for college when you’re managing food allergies. We’ve had a lot of experience over the last 5 years preparing and getting both of our children (with different food issues) into college.

Our daughter, Michaela, has celiac disease (diagnosed in high school) and a mast cell disorder, which wasn’t diagnosed until college. She has a very limited diet with many intolerances and a wheat allergy too! Our son, Morgan, has life threatening food allergies to peanuts, tree nuts, sesame, fish and shellfish along with eczema, environmental allergies (pets and pollen) and mild asthma.

We’ve visited almost every college in Colorado, and a few outside of Colorado too. With all that experience, here’s a college checklist to assist your child with food allergies get prepared for college:

Take an accurate self-survey to determine how responsible you are with your food allergies and/or asthma:

Be honest – do you ALWAYS remember to carry your EpiPen/Auvi-Q?
Can you train someone on the administration of your epinephrine autoinjector?
Do you remember to take your other medications (antihistamine, inhaler, etc.) without your parent(s) reminding you?
Are you willing to talk with a cafeteria worker about the seriousness of your food allergies?
Do you feel comfortable talking with a dorm roommate about your need for a safe living space?
Can you cook for yourself and shop for groceries if you’re going to live in an apartment?

If you can answer in the affirmative, you’re probably responsible enough to go away to college and appropriately manage your food allergies. If there’s still a few questions you’re concerned about, I’d suggest working toward that level of responsibility to ensure that your freshman year in college isn’t fraught with a trip (or two or three) to the ER.

In addition to my own children, I’ve communicated with dozens of young adults who are in college managing food allergies. Each of them finds a way to manage their own unique living situation along with their food allergies, yet several of them have experienced anaphylaxis while away at college. Having an EpiPen or Auvi-Q within reach is vital. Accidents do happen, so be prepared!

Get an idea of what you want to pursue academically

Food allergies aren’t the only thing you’ll be managing in college! Having an idea of what you want to major in will narrow down some of your choices for schools. We’ve learned that it’s expensive to pay application fees to multiple colleges, so it’s best to delve into the college website to see what degrees they offer.

If you have no idea what you want to major in, check out a local community college. Our daughter, Michaela, went to Pikes Peak Community College for two years and loved it. It allowed her to decide what she wanted to major in, and then she transferred to a 4-year university after completing her Associates Degree.

Are you ready to leave the safety of home?

How do you feel about going FAR away from home? Will you need to get an allergist nearby to help manage your allergies and/or asthma? Or would you rather your college be closer to home yet enable you to live on campus? Or do you prefer to live at home?

There are a lot of kids without food allergies that don’t do well thousands of miles from home. Others seek that special Ivy League degree, and are more than ready to be a far distance from home. If you have asthma, you might need to live in a dorm with air conditioning, or filtered air.  Not all college dorms have air conditioning; therefore this issue may require discussions with the Disability Services Office (DSO) of the college and a letter from your allergist to get what you need from the Housing Office.

The 504 Plan from K-12 schools doesn’t follow you to college. Every college we’ve visited has stated that accommodations are available in college, however there is a whole new set of paperwork to complete, and documentation of the medical condition will be necessary for the DSO to authorize the accommodation. Many DSO’s aren’t yet up to date with their paperwork for food allergy accommodations. They generally deal with learning accommodations, so some patience and education may be necessary on your part.

At the age of 18, students are considered legal adults. Therefore, Mom & Dad won’t be negotiating accommodations – you will be! Know what you need to stay safe and healthy.

Visit the colleges/universities that interest you academically

These visits are vital we’ve found. Schools can look great or horrible if you only look at their website. Visiting in person gives you a whole different feel for the school. A visit also allows you to check out the dorm rooms and the cafeteria meal plans, meet the students and the professors, take a tour of the campus, check out the emergency procedures and ask LOTS of questions!

What is your ideal living situation in college? What is your ideal college academically? Can these two scenarios be found in one college?

We’ve found that it never hurts to ask for exactly what is wanted. If you want a chef to specially prepare your meals, ask if that can be done. Do you want to live in an apartment? Ask for that. First, you need to know what you’re comfortable with:

When visiting a college, here’s what we look for in relation to food allergies/asthma:

Are ingredients listed on all foods in the cafeteria?
Is there a chef on site to take special orders?
How many of your allergens are regularly served?
Can you speak with a Dining Manager about your needs during your visit?
How old are the dorms?
Has there been any water damage?
Are the dorms Air Conditioned?
If not, what documentation will be necessary to submit for a medical necessity to live in Air Conditioning?
Can the Resident Advisor be trained on the administration of an EpiPen/Auvi-Q?
Can roommates be selected to ensure no food allergens are in the dorm room?
Where is the nearest Emergency Room?
How is 911 handled on campus?
Is food allowed in the classrooms?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office?
Can you obtain that package of paperwork?

There are probably a dozen more questions to ask, but you get the idea that we are VERY thorough. We’ve found that talking directly to the person in charge while visiting the campus is vital. Take the time to set up personal meetings with everyone when you visit and pick up business cards to be able to follow up later. We’ve found that coming to campus with a list of questions generated from Mom/Dad and from the potential student is helpful.

Make a decision!

The best thing to know is that just because you’ve made a decision to attend a specific school, this is rarely set in stone. If things don’t go as planned, you can chalk it up to a learning experience and move on from there.

Our daughter, Michaela, lived at home for the first year and a half while attending the local community college. She wasn’t ready to live in an apartment, shop and cook for herself while trying to adjust to college academics. After 18 months, she was ready to move in to a room in a house she shared with a housemate. She transferred to the local University of Colorado at Colorado Springs, and graduated from there in May 2013. She has her own cooking utensils, cutting board, silverware and dishes. It has worked fairly well, although she has had to do a large amount of education and then remind her housemate when things are accidentally shared.

Our son, Morgan, has decided to attend the University of Denver (DU), where he is hoping to be able to get approval for a room air conditioning unit in his dorm room. The Disability Services Office will be reviewing his paperwork soon. He will eat in the cafeteria where the head dining manager has extensive experience preparing safe meals for students with food allergies. The students get assigned to one chef whom they can text message prior to each meal. Their meal is then prepared separate from everyone else’s. It’s a wonderful system that has worked well for other students managing food allergies! Should the air conditioned room not come through, Morgan will live in a dorm with A/C that also comes with a kitchen, which will be a nice backup. We feel very blessed that DU became a possibility for Morgan when he received a Boettcher Scholarship. It is a dream come true!

We hope that your dreams come true with the college of your choice that can keep you safe and healthy while enjoying a full college experience!

 

 

 

 

 

 

Remembering to Bring Your EpiPen/Auvi-Q ALWAYS!!

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If your child has food allergies, it is vital that they begin, at a young age, to remember to bring their epinephrine autoinjector everywhere!

I had a conversation recently with a Food Allergy Mom whose 18 year old son is no longer remembering to bring his EpiPen with him when he leaves the house. She asked me what could she do? It brought up an interesting conversation about food allergies, safety and teenager’s brains.

Our son, Morgan, is extremely good about remembering his EpiPen. I think there are a few reasons for that:

1.  Morgan well remembers his last anaphylactic reaction to fish when he was 10 years old. If your child was an infant when he experienced anaphylaxis, he may not remember what it felt like to have a severe allergic reaction. He may discount the likelihood of experiencing any type of reaction, especially if he says, “I’m not eating, so there’s no need to carry it.” Which leads us to the next reason…

2.  Our family has specific safety rules. One of those rules is that he always carries his EpiPen on his person. We also have rules that require him to wear a helmet when biking, and wear a seat belt when riding in a car. If you stick with these rules, it’s easier for it to become a habit.

3.  Morgan started carrying his EpiPen in a fanny pack when he was 4 years old. He got accustomed to being responsible for it. He wasn’t allowed to carry it at school until he was in 5th grade per the Colorado law. Once he was allowed to wear it in school, we checked each day that he had it on his belt loop. For a while he carried one EpiPen in a flashlight holder on his belt. Now, he carries two EpiPens in a Garmin GPS pack inside his pants pocket.

4.  Morgan developed a system of stacking the items he needs each day. He stacks his cell phone, wallet and EpiPen pack on his desk so he always knows where they are when he’s preparing to leave the house.

5.  We were willing to turn around and go home to pick up his EpiPens should they have been forgotten. That showed him how important they are. Also, when he first began to travel with his Speech/Debate team, I would ask for a gift: please show me that you have your EpiPens. It allowed me to stay a little calmer knowing that regardless of what occurred during his trip – at least he had his EpiPens!

6.  My husband and I recognize that forgetting things is part of the teenage brain. He isn’t mature enough to realize the consequences of his actions. Therefore, it’s our job as parents to not allow him to engage in such risky activities where the consequence for his action far outweighs the oversight. In other words, if Morgan is caught speeding while driving, he will get a ticket. That is a reasonable consequence. If he forget his EpiPen, that could have life altering consequences. That’s too much of a consequence for a seemingly mild oversight. If Morgan wasn’t willing to carry his EpiPen, or was consistently/purposefully forgetting them, we would curtail his activities until he could prove he was responsible enough to properly care for himself.

As Morgan prepares to go to college, we have asked him to be completely responsible for all of his medications. Remembering to take his asthma medications daily will be vital for him to remain healthy at school. We still have about 6 more months to ingrain this in him! It is a process, but when moving out is tied to performing certain responsibilities, it’s amazing how remembering medications can become a priority.

Food Allergies & Buffets

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With the Easter holiday coming soon, the topic of food allergies and buffets is surely to be on any food allergy family’s mind!

The picture above was taken when Morgan was 3 years old, and we ate out for the first time at a buffet for Easter. We really weren’t thinking of all the issues that could occur! Have you ever done something that is so risky and only realized it afterward? Well, that’s how that Easter meal was for us.

We looked around at all the food and determined what was safe for Morgan to eat by asking a few questions like, “Does this food contain peanuts?” Then we served it up for him to eat. We didn’t think about whether the serving utensil had been used to serve other foods. Or whether the food service employee even knew whether the food contained peanuts or not!

There was an abundance of shrimp, crab and lobster being served at that buffet – all on Morgan’s severe allergy list at that time. We just steered him clear of that area, but many family members ate that food.

Despite all of our risky behavior, Morgan had no reaction. However, we learned later that we were lucky. Since then, we have not eaten at a buffet at either a restaurant or at someone’s house.

We have learned the following about buffets:

If there is anything along the buffet line that contains your child’s allergen – it could also end up in foods that are safe for your child. Serving utensils are frequently shared!

Asking a chef for the details about the food ingredients and preparation is the only way to know what is in a food. We have found that buffet foods are frequently made by an army of individuals in hotels, for example. One employee is very unlikely to know everything about every buffet food item.

If your family members want to eat at a restaurant buffet for a special occasion, bring a safe meal for your child!

When eating at a buffet at someone’s home, we allow Morgan to serve his food first only from what we have cooked and brought ! We have never felt comfortable with him eating food that other people have prepared, no matter how well-meaning they are.

We recently attended a luncheon at a local university that was hosting scholarship interviewees and their parents. Morgan had emailed ahead of time to request a meal accommodation free of his allergens – peanuts, tree nuts, sesame, fish and shellfish. He never heard back from the kitchen staff about his request. Therefore, he asked me to bring him a safe lunch since he was interviewing all morning and didn’t want to bring a lunchbox to the interview! 

As we entered the luncheon hall, the buffet appeared to have mostly safe foods for all of his allergens. There was salad, bread, spaghetti noodles, meatballs and vegetables. Morgan asked the kitchen manager about his safe meal request. Her response was, “Oh you wanted the nut free meal.” Well, that wasn’t the only allergen, but that was a place to start! She asked another employee to advise Morgan about what was safe for him to eat.

The employee stated, “don’t eat the salad because it has nuts in it.” Morgan said, “I’m also allergic to sesame.” The employee said, “then don’t eat the bread.” Morgan then said, “I’m also allergic to fish and shellfish,” and the employee responded, “better not eat the meatballs then!” By then, the entire meal was not edible. He pulled out his sack lunch and dove into a safe meal. Lesson learned!

 

Food Allergy, Colds & Other Nasty Bugs!

 

1996 RSV

When our son, Morgan, was 3 weeks old he was diagnosed with RSV – Respiratory Synctial Virus. It was a frightening illness that landed him in the hospital with oxygen necessary around the clock and nebulizer treatments every 4 hours. The illness lasted for three VERY LONG weeks. Thankfully, Morgan fought through the illness and still gained weight like a champ!

Nine months after this occurrence, Morgan touched a peanut butter sandwich, reacted with hives, and we were baptized into the food allergy world.

At 18 months old, Morgan got a horrible cold that got considerably worse during a blizzard that we had. (We are in Colorado, so blizzards aren’t uncommon occurrences). My mother was unable to get home from work, and stayed at our house that night. All through the night, I got up to check on Morgan and his breathing. I knew by the early morning hours that he needed to get to at least get to our doctor’s office. My Mother thought I was crazy. She was accustomed to letting kids just battle through illnesses. I had an instinct that something was clearly not right, and listening to my Mother could have had disastrous consequences. I got into the doctor’s office and we were able to thwart off the need for oxygen thankfully. Morgan was given a large prescription for nebulized albuterol to have on hand for any future similar occurrences.

Morgan continued to have bronchial spasms every time he got a cold, which was eventually diagnosed as mild asthma at about age 3. The impact of RSV, food allergies and asthma was much more problematic for me – aka Dr. Mom. I was forever scared that every sniffle was another major illness requiring an emergency room run. It was difficult to know when to get him immediately into the doctor and when to allow a virus to run its course.

Morgan also had strange reactions to illnesses. He would break out in hives during a virus, for example. Or he would be the only family member who didn’t get sick when everyone else was sharing the germs. I don’t understand everything with the immune system, yet I have learned that children with food allergies just don’t respond the same to illness that other children do. Either Morgan’s system goes way overboard, or he doesn’t react at all.

In the elementary school years, Morgan would want to stay home upon the first touch of an illness. Maybe he felt better at home – almost like he didn’t trust what his body was going to do and he’d rather be at home when something happens! Children at this age are sick so frequently, but I really felt better being able to watch over him.

As he aged into high school, he was more able to handle illness and go to school when he had a cold. And I’ve learned how to let go a little more and realize that not everything necessitates Dr. Mom’s hovering presence!

This past weekend was another one of those scary illness times. Morgan had been at a Speech/Debate tournament all afternoon Friday and into the evening until 11:30pm. He was up very early and back at the tournament by 7:30am Saturday morning. I didn’t see him Friday night or Saturday morning, but I had a sense that he was going to be getting sick. Call it Mom’s intuition. He’s been cramming a lot of activities into his schedule during his last semester of high school, and sleep is frequently missed.

He had 6 rounds in the tournament and he won every round, which no one else was able to do. This means that he will be going to the National Speech/Debate tournament in June. He was thrilled with his accomplishment and must have let out a large sigh of relief.

Then he called me and said that he was so sick that he didn’t think he could drive home. He had chills so bad that his teeth were chattering. I had no idea what illness he could have that was causing such dramatic symptoms so quickly! I drove over to the tournament, which was thankfully in our same city. My husband talked to Morgan about coming home and not staying for the awards’ ceremony. That was a big disappointment for him since he worked so hard, but we needed to get an assessment of what was going on and we wanted to keep the other participants healthy.

We took him to an Urgent Care facility. The doctor determined that it was possibly Strep Throat. Since Morgan had two college scholarship interviews occurring all day Monday (about 36 hours later!), we asked the doctor to put him on an antibiotic immediately even though the Strep Test came back negative. The doctor understood the situation, and graciously agreed!

Morgan slept for 16 hours, got up the next day feeling a little sluggish but knew that he was on the mend. The Strep Test never did show as positive, but the antibiotics worked and he was able to make it to the Scholarship Interviews early Monday morning.

I’m sure we will one day be able to laugh about this past weekend, but it was harrowing to watch him so sick and pale. We can add another crazy immune response to Morgan’s list of odd things – he never tests positive for a strep test even though he has the illness!

 

 

 

Morgan’s Senior Class California Trip Updates – Saturday and Sunday

Hello everyone! I decided to update all of you with just one post covering both days given that a good portion of one was in Disneyland.

Saturday

There is a McDonalds in the vicinity of the hotel, which makes getting breakfast easy. When planning, I was very surprised to find out that none of the foods that McDonalds serves at breakfast contain nuts (or any of my allergies).

I simply got pancakes and sausage and while it may not have been the most healthy breakfast, it certainly tasted good!!

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After breakfast, my whole group went out to the President Nixon Library and Museum. It was a phenomenal experience!!

I got to see the old Marine/Army 1 (depending on the branch of the pilot) that President Nixon departed from his presidency in. I also had the chance to learn all about President Nixon’s life and successes. No food was allowed in the museum, so I didn’t have any problems.

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After the Nixon museum, our group went to Disneyland! We were there from 1pm until midnight. I can say that I haven’t had that much fun in a very long time.

Food at Disney wasn’t hard at all. I stopped by and had some food at a Sandwich joint for lunch and balanced out some safe BBQ for dinner. I had simply asked about the sauce they use for their BBQ – they graciously provided ingredients for all of it. It was absolutely delicious!

Food is always a big issue when you’re at a theme park. But, what about carrying around your cell phone and EpiPens? If there is ever a problem, people need to be notified. I carried my EpiPens, cell phone, and wallet on me at all times. I didn’t leave them in a bag or put them in a locker.

Splash Mountain certainly made me a little wet, but my cell phone was fine and my EpiPens were stored in a Garmin case and remained in their waterproof case, as always.

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I was thoroughly exhausted by midnight. It was a fun day – I even got to see the whole castle lit up!

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Sunday

I once again had breakfast (and included a delicious and completely  unhealthy cinnamon melt) at McDonalds.

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We visited the Museum of Tolerance. No pictures were allowed, so I can’t document anything from the museum, but I can say it was one of the best museums I have ever visited. It was enlightening and heavy, examining the consequences of our words and propaganda against another group of people. It specifically looked at the Holocaust, and I nearly came out in tears from one of the gas chambers.

After the Museum of Tolerance, we went to In-N-Out burger.

I have never eaten such a good burger. And fries. And milkshake. It was amazing fast food. Fast food burger joints are nefarious for their use of sesame seeds on buns. I had called ahead to the restaurant chain to make sure they didn’t use sesame on their buns – they didn’t. Their fries are also not cooked in peanut or sesame oil – another wonderful and tasty victory!

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After In-N-Out, we visited President Reagan’s library and museum. That was an another awesome experience! We got to revisit Reagan’s life and successes along with the old Air Force One. That took the rest of the afternoon.

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For dinner, we got to eat at restaurants in the vicinity of our hotel. I had checked before the trip, and there was an IHOP just down the block. IHOP is what I call a “pocket” restaurant – it’s always safe and I can just pull it out of my pocket as a safe backup.

I’ll post a final update tomorrow after my flight home! I’ll leave you with this awesome California sunset taken from President Reagan’s library.

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To read Morgan’s other post about his Senior Class Trip on Friday, click here.

Senior Class California Trip – Morgan’s Update for Friday

Hello everyone! I figured I would do a few updates throughout the trip just to keep all of you apprised with the day to day happenings.

With traveling, I believe planning is one of the most important things you can do. Before leaving, I charted out all the locations my group was going to and located safe places to eat. The teacher in charge is super detail oriented, so the itinerary we received was very detailed with times and locations. After calling the different places, including In-n-Out Burger, Rainforest Cafe, and a local pizzeria, I had my entire menu for the trip planned! As a note, the Rainforest cafe (and two other meals) take place inside Disneyland. Disney is renown for their ability to take care of food allergic children.

I also created a list of everything I would need to bring, including medications. This way, I make sure I have everything I’ll need (mind you, this trip is only 4 days so it wasn’t an extensive list).

For TSA, I removed ALL the liquid medications (like eye drops and nasal spray) and put them in the bag with my other liquids. This ensures I won’t hold up the line. I also always wear my MedicAlert bracelet, but that’s never been a problem with metal detectors. It never sets it off. I do remove my EpiPens in my pocket and set them in the bin to have them scanned.

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Above is my boarding pass. When I fly Southwest, I typically have “PDA” printed on my boarding pass, which means “Peanut Dust Allergy.” This means that I can preboard the plane and wipe down the surrounding areas. (It also means I get to choose the best seats!) Thankfully, United doesn’t serve peanuts on their flights, so it wasn’t a problem for this trip.

I did bring a few snacks for the plane ride – NutriGrain bars, apple slices, and banana bread from home. If I were thirsty, I would have bought a soda near the gate for the flight.

The flight went excellently. There were no problems and I sat among friends so no one ate nuts.

After the flight, we immediately went to the beach! It was a great time. For lunch, I had pizza from a local pizzeria that I had checked with beforehand. It was delicious! I then went and played at the beach with friends for a few hours. There was a shellfish shop or two along the beach, but obviously I didn’t eat at them (nor my friends)!

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We also met a seal (pictured above).

After the beach, we returned to the hotel to change and then went to dinner at Rainforest Cafe in Downtown Disney. I had called ahead and checked their menu to make sure there was a possibility for safe food.

When I arrived at Rainforest Cafe, I let the server know I had severe allergies right after I ordered my drink. She was super kind and immediately brought out the kitchen manager – a sort of combination between chef and manager. He asked what my food allergies were, took them down, wrote down my meal, and then specially prepared it (he even served it to me)!

The steak fajitas were delicious.

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It was a wonderful Friday!! I’ll keep you updated about Saturday with journeys including Disneyland!!

To read Morgan’s post about his Senior Class Trip for the rest of the trip, click here.

Food Allergies & the Senior Class Trip

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The Senior Class Trip to Southern California is upon us! How do you help your teenager to manage their food allergies on a weekend trip? The better question might be – how do you help yourself manage your fear and anxiety while your teenager is on a weekend trip with the Senior Class?!

We’ve had years to prepare for such a trip, but now that the trip is this weekend – all that planning is followed by still more preparations to ensure Morgan’s safety. He’s very aware of what his food allergies are – peanuts, tree nuts, sesame, fish and shellfish – and he ALWAYS carries two EpiPens and a Chef Card for restaurants. He’s had a lot of practice eating out with his Forensics team; and he’s been on plenty of trips with our family and once to the Boy Scout National Jamboree with his Dad along for several days of that trip. This will be the first trip that he’s entirely on his own from start to finish. He’s almost 18 years old, so it’s probably time!

Morgan and I got all his trip paperwork completed by our allergist to allow him to take his medications with him and to carry his EpiPen and inhaler. Additionally, he has to take other meds for his asthma and environmental allergies. He been the manager of those meds recently, ensuring that he takes them every night. That feels good to have turned those over to him.

Our allergist signed off on a Health Care Plan for the trip that included what to do if Morgan goes into anaphylaxis. The chaperones on the trip, all teachers, have only been trained to call 911 after giving an EpiPen. If Morgan were to need to go to the ER in Southern California, someone will need to go with him in the ambulance AND someone will need to stay with him in the ER for 4-6 hours to ensure no biphasic reaction occurs. Morgan and I made a presentation to his chaperones last week at school to ensure they knew all the steps necessary to keep him safe. The teachers were so appreciative to know about the details of his food allergies, since they had a student last year experience a seizure on the trip and they had no medical information about the issue from the family.

Thankfully, the coordinator of the trip, the AP Government teacher, is VERY detailed. She has prepared an itinerary for the trip that includes the times and locations of every activity. This has allowed Morgan to look up the restaurants on the Internet, and to call the hotel to ensure that he can obtain a safe meal for breakfast. On the days when they will be able to eat at Disneyland, for example, or at any restaurant near the hotel, he’s had to do more research on the locations of the restaurants and their menus. I’ve had to communicate my need to know specifically what he’s going to eat and that he’s got a plan. Just saying, “I’ll handle it” doesn’t make Mom feel good!

Morgan is flying United Airlines which doesn’t serve peanuts. I plan on sending him with wet wipes so that he can wipe down his environment on the plane, which we always do when we fly. He’s trained many of his friends about allergic reactions and administering his EpiPen. He will bring EpiPen trainers to do so again. We’ve found that teenagers love to be trained and to practice with the trainers. Some scoundrels like to administer the trainer on their forehead, but I know the message is still getting through!

All of the students will be housed four to a room, boys with boys and girls with girls. The teacher in charge has already insured that Morgan knows all of his roommates and feels comfortable asking them to not bring any of his allergens into their room. Even if Morgan didn’t know them as well as he does, I feel sure he would be able to advocate for himself and have a safety zone in the room.

As for Mom…I will be sending him off with lots of love…and lots of instructions too: Make sure to take pictures and especially make sure to HAVE FUN!!

To read Morgan’s two posts about his Senior Class Trip – read them here and here.

There’s a New Food Allergy Organization You Want to Join!

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There’s a new Food Allergy Organization that YOU want to join – FAACT – the Food Allergy & Anaphylaxis Connection Team. I’m so honored to be a part of this new organization with five other dynamic Food Allergy Advocates! Every one of us manages food allergies in our homes with at least one of our children. Every one of us has been a food allergy support group leader. We know what it’s like to live with the threat of anaphylaxis. We get it! That personal connection makes FAACT the organization that you want to become a part of.

Here is the press release for this great new non-profit organization. We intend to be your voice in the food allergy world!

Food Allergy & Anaphylaxis Connection Team (FAACT) Launched to educate and advocate for all individuals and families affected by food allergy and life-threatening anaphylaxis

Life-threatening food allergies affect more than 15 million Americans, including 6 million children

(West Chester, Ohio) A new nonprofit organization launched today is taking the American public and the food allergy community to a whole new level of support and compassion. The mission of the Food Allergy & Anaphylaxis Connection Team (FAACT) is to educate, advocate, and raise awareness for families and individuals affected by food allergies and life-threatening anaphylaxis. FAACT is the brain child of CEO Eleanor Garrow-Holding, who has created a team of top U.S. advocates and a world-renowned Medical Advisory Board.

Garrow-Holding provides leadership for all of FAACT’s initiatives and programs, including conferences across the country, education for school and restaurant staff, and statewide legislation and civil rights advocacy for students. FAACT will also grow the very successful Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Garrow- Holding founded in 2009.

Among her work in the food allergy arena, Garrow-Holding served as vice president of education and outreach for the Food Allergy & Anaphylaxis Network for almost four years, where she presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country. She also advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) on Capitol Hill with her son and helped pioneer the School Access to Emergency Epinephrine Act that was recently signed into law by President Obama. She has been interviewed extensively by the media and has written for Allergic Living and Living Without magazines. She has also worked to increase food allergy awareness among staff at numerous food industry companies and entertainment venues, including McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.

“Many tragic and preventable deaths have occurred through the years from anaphylaxis,” says Garrow-Holding. “To think that a life can be lost simply by coming into contact with a food item is motivation in itself to arm and educate the community. Food allergy is a chronic illness and a life- long journey with social and economic challenges. FAACT will provide professional resources and guidance for families, peer-to-peer support, podcasts, webinars, restaurant and educational materials, civil rights advocacy, government relations, and so much more. We are linking our families to your families to ensure the safety for everyone affected by food allergies and anaphylaxis.”

By networking with other food allergy organizations, FAACT is also able to supply the most up-to- date resources and provide a more cohesive level of support to patients and families by some of the nation’s most dedicated advocates, all with personal connections to allergic disease.

The leadership base of FAACT includes civil rights attorney Amelia Smith Murphree, founder of “Food Allergic Children’s Education in Tupelo;” Karen Underwood Harris, president and founder at “Food Allergy Kids of Atlanta;” Thanita Glancey, president of the “Loudoun Allergy Network;” author Nicole Smith, president and CEO of “Allergic Child;” and Los Angeles media producer Yael Kozar, who leads “CA, Allergy Support & Anaphylaxis Prevention” and created “The Anaphylactic Allergy Podcast”.

For more information about FAACT, please visit www.foodallergyawareness.org.

Media Contact:
Yael Kozar, FAACT Communications and Media Relations  (310) 415-7180 or Yael.Kozar@foodallergyawareness.org

FAACT is able to consult on news stories and provide medical experts, spokespersons, and subjects while supplying up-to-date information on food allergies and anaphylaxis for your future media needs.

A Food Allergy Ah-ha Moment with the Holiday Meal

If your house is like ours at holiday time – managing food allergies with the holiday meal creates stress. Stress for us means arguments about what is safe for our son to eat, and what isn’t safe. Inevitably these stressful situations occur with extended family coming to our house for a holiday meal where we have entrusted others in the family to make safe foods.

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Our son, Morgan, is almost 18 years old, so managing holiday meals isn’t anything new. We’ve concluded that eating at our house is a must. Other family members have dogs, cats, and others who have since passed away, were smokers. This is a recipe for disaster for our son and his asthma and allergies. The holiday meal is therefore the big issue to conquer.

We’ve always agreed that Morgan doesn’t eat food made by anyone else. Too many times well-meaning friends or family have tried to bake birthday treats or provide safe snacks for our son at a party. Unless the food has a label on it, we’ve always agreed that Morgan says “no thank you” and he eats the food we provide. We don’t know how others prepare food or what precautions they take in their kitchen. How well do they wash their baking pans? Did the spatula also pick up peanut butter cookies? There’s so many chances for errors in even the most well-meaning friend or family member.

But when it comes to family, it gets dicey. We can’t always cook EVERYTHING for the extended family and our family. That’s a lot of cooking and a lot of money to provide that much food. So, we ask them to bring certain foods, with a long list of “don’ts” attached: don’t bring anything with his allergens (peanuts, tree nuts, sesame, fish or shellfish), don’t bring anything that says “manufactured in a facility…” with any of his allergens, don’t make food at home – make it at our house in front of us – if you want Morgan to eat it. It’s a lot for others who don’t have food allergies to understand why all of this is necessary.

It’s taken years of education and plenty of discussions, and more discussions, to explain the seriousness of food allergies, and what happens when a mistake occurs. Our extended family has gotten really good at understanding what’s necessary to keep Morgan safe. Yet, do they understand enough to cook for him?

That brings us to this year’s holiday meal and celebration, which occurred for us last night. My husband had been the communicator with his brother and the family. When there was a change in the main course from a turkey to a ham, I began to get frightened. I was feeling uncomfortable with Morgan eating the turkey to begin with because it was going to be cooked at THEIR house! Now, with a ham there’s the glaze ingredients to worry about. My husband and I began a discussion about the issue, and brought Morgan in to determine how to deal with this change of plans.

Then I had an AH-HA moment!

Why are my husband arguing over this? Morgan is old enough to be responsible for this issue. He eats out with his friends and can manage restaurants. Surely he can get on the phone with family members and negotiate a safe meal for himself. It’s time for my husband and I to take a step back from all this and allow Morgan to self-advocate.

The result? The ham was cooked at our house; Morgan prepared the glaze after reading the ingredients and everyone had a wonderful time!

For future celebrations, Morgan will be on the phone talking with family members about the meal prior to the day of the celebration. My husband and I can find something else to argue about  😉  and we promised to not second-guess Morgan’s decision about what he eats. It’s up to him to keep himself safe.

Problem solved with everyone in agreement. Amazing!

 

Managing Food Allergies? Mistakes That We’ve All Made!

 

 

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Nicole Smith is the Founder of AllergicChild.com and the author of three best-selling children’s books about food allergies. Allie the Allergic Elephant: A Children’s Story of Peanut Allergies was her first foray into writing. She is an almost-native of Colorado, and continues to speak and advocate for children with food allergies at the state level and in her school district’s Food Allergy Task Force, in addition to writing a blog about living with food allergies on AllergicChild.com.

Gina Clowes is an author, speaker and Master Certified Coach whose advice and parenting tips have appeared in numerous print, radio and television features including CNN, ABC World News Tonight and People Magazine.  She is the author of the best-selling children’s book One of the Gang: Nurturing the Souls of Children with Food Allergies and writes a regular column The Parenting Coach for Allergic Living Magazine.

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Children with food allergies don’t come with an instruction manual, so it probably wouldn’t surprise you to know that over the years we’ve received thousands of emails and phone calls from parents struggling to manage their child’s food allergies. As our allergic children are both teenagers now, we have the benefit of hindsight.  We can easily spot common mistakes that parents make because we’ve made the exact same mistakes ourselves at one time or another.

If you’re like us, you’ve seen a lot of articles telling you what to do to help your child with food allergies at school, camp or on a sleepover. In this article, we’d like to try a different approach by outlining some of the most common mistakes that parents of food allergic children make. Our hope is that with a heads up and some advance warning, you can learn from our mistakes without the painful consequences.

Mistake #1: The Unprepared Parent

Nicole:

I really feel for the Mom who calls or emails me two weeks after school has started. She is likely to have a kindergarten student, and hasn’t done anything to prepare the school for her child’s allergies. Inevitably her child is contact allergic in addition to ingestion allergic, and therefore the child needs a number of accommodations. The school is overwhelmed and balking at everything she is requesting. This Mom is likely crying and overwhelmed herself. What did she do wrong? She didn’t prepare the previous spring before the school year started!

It’s unfair for a parent to expect a school/school district to be able to manage a child’s food allergies if they are informed on the first day of school! Lesson plans frequently need to be changed, epinephrine autoinjector training needs to be done…there are so many details that cannot be completed on the first day of school.

Gina:

Some parents think that a passing conversation they had with the nurse at the kindergarten registration or with the principal months ago laid the foundation for a safe plan for their child.

Then they are devastated when they find out that the bus driver is not trained and their child is sitting alone at lunchtime or during classroom birthday celebrations. These parents expect their schools to be ready to accommodate allergic children but in many cases, they’re not.

Developing an individual written accommodation plan is one of the most important projects parents will ever manage. It takes planning, education and dedication to see this through. A great place to start is by reading the CDC Guidelines for Managing Food Allergies in Schools to learn about the recommended practices for parents and school administrators.

Mistake #2: Ineffective communication

Gina:  Another issue I see with parents is that their communication style affects the process in a negative way.  I’ve received emails that are 300 words long in one dense block of text. And even upon re-reading, I’m not sure what the parent wants or needs.

Before you open your laptop, know why you are emailing.  Start with a concise request, and then fill in the details.  Then re-read your message to make sure that the tone is appropriate and that your message is clear.

Nicole:  I’ve found that I also need to read and re-read my emails to ensure that I’ve spelled everything correctly. Anaphylaxis needs to be communicated as a serious issue, and spelling it correctly – along with EpiPen, Benadryl, and Auvi-Q – are all important to ensure that school personnel get educated appropriately.

Mistake #3: Asking for too much

Nicole: When my son started kindergarten, our allergist wrote a letter to the school district 504 Administrator outlining exactly what he needed to remain safe in school. In our case, the main items were an allergen-free classroom and peanut and tree nut free zone in the lunchroom(figuring that most children wouldn’t be bringing in fish or sesame for lunch); and for kids to wash hands after lunch.

Had we asked for a peanut-free school without the medical support of our allergist, we would have been asking for too much. And in our son’s case, a peanut free school would do nothing for his tree nut, sesame, fish or shellfish allergies.

Gina: I am all for restricting food or allergens from the classroom, the learning environment, especially when there is a separate cafeteria. However, school-wide bans are often not a feasible food allergy management strategy especially when you are dealing with milk, wheat, or egg allergies.

If a district decided to manage food allergies with a school-wide ban for a peanut-allergic child, what would they do when they had a child who was severely allergic to milk and egg?

Would you ban a food for one child but not the other? Again, restricting food or allergens from the classroom is different and is an accommodation that can work well to foster inclusion and minimize risk of exposure.

Mistake #4: Taking on the burden of all accommodations yourself

Nicole: I made this mistake with my son at first. He was the first child with severe food allergies that our school district had ever educated. We were blazing a trail, and when the kindergarten classroom teacher wanted to hand out safe treats to all the students DAILY, I provided a safe snack for my son to have. I also provided safe cupcakes for birthday celebrations frozen in the school freezer for ‘just in case’ a party occurred! Today, I wouldn’t do that. I would ask that either all the students have no snack or I’d ask that every child get the same snack that would also be safe for my son.

Gina: What tends to happen is that teachers and other school officials think that when Johnny needs a treat due to an upcoming birthday celebration, it is his mother’s job to provide a safe one. When in reality, if the school is serving a free treat in class, there needs to be a free treat for Johnny as well, and it needs to be safe for him. For classroom parties and other school celebrations, schools are responsible for what is served in the classroom regardless of who bakes or buys it. This doesn’t mean that parents can’t send in “safe” treats for their child. This option should be available to parents, however it should not be a requirement.

Mistake #5: Disclosing Private Medical Information

Nicole: We probably disclosed too much when our son was in elementary school. We wanted for everyone to know about his food allergies so that he would be safe. The problem was that it backfired and our son ended up getting bullied because other boys knew where he was different. And kids being kids – they pounced on that! I’ve learned that it isn’t necessary to give all the parents, teachers and students the medical details about my son’s food allergies. Instead, it’s the school’s job to adhere to the 504 Plan and FERPA (Family Educational Rights and Privacy Act).

So, it’s not up to the parent to send out a letter stating, “my child has food allergies, please keep him safe.” The school needs to send out a letter stating, “we have students in kindergarten who have milk allergies, please refrain from sending in any food with dairy.” It’s best if this letter is signed by the school principal and/or school nurse.

Gina: Severe food allergies weren’t often recognized as a disability back then, so parents felt they needed to take on the entire burden themselves. They were trying to get classmates and other parents to understand in the hopes that they would protect the allergic child. They were asking for favors from the other parents to keep their child safe and included. I favor a more formal approach.

We don’t have wheelchair ramps, rails in bathrooms and handicap parking spaces because someone asked for a favor. Accommodations like these are made because they are the law.

It’s fine to educate all students about food allergies in general, and certainly kids can let their friends know about their allergies.  However, in my experience appealing to classmates is not the most effective approach to keeping your child safe and included at school.

Mistake #6: Not understanding the law

Gina: This leads into the most serious mistake that parents can make- not understanding the laws as they pertain to severe allergies in school.  When we have our first baby, we typically buy the book, subscribe to the magazines, and we read about the pacifiers, formulas and car seats. We acclimate to a whole new world. It’s a similar shift in reality when you have a child with food allergies, but some parents don’t buy the book, or read the reports.

Advocating for your allergic child in school is the most important job you will likely face. It is a huge undertaking that takes education and preparation. It’s a project. If you approach it casually, by chatting with this person and that person, by thinking you know the facts by comments you read on social media, you’re likely to start off on the wrong foot. When this happens, it’s difficult to right the ship.

If you haven’t started yet, I’d encourage you to start by reading the CDC Guidelines for Managing Food Allergies in School and Early Care and Education Programs.  Learn the laws and the recommended accommodations, plan how you will proceed, and document your steps throughout the process.

There is a concept called “Sensitivity to Initial Conditions” and this means that subtle differences in the beginning can result in wildly different outcomes at the end. I’ve seen this play out time and again with parents and schools.  Your initial contact with the school including the form and content of your communication, and your tone and demeanor lays the foundation for your relationship going forward.

Nicole: We were lucky that our school district understood the laws available to them in 2001 when our son started kindergarten. Additionally, my husband and I had an understanding that anything we agreed to with our school district needed to be in writing.

We relied on the 504 Plan and the Food Allergy Action Plan that were developed to keep our son safe and included. We started out on the right foot by having both of these plans prepared in the spring before he started kindergarten. The principal of the school and the school nurse together wrote the letter to kindergarten parents asking for none of our son’s allergens to ever be present in the classroom. This was met with much consternation on the part of several parents. Yet, these two school professionals took on our son’s medical condition with decisive action and kept my husband and I updated with any issues that they had to handle. It has been a partnership with the school district ever since between our family and the district staff. We had the law on our side, and thankfully a wonderful school district that was more than willing to abide by the law and to do anything necessary to keep our son safe and included.

When food allergy parents learn to advocate well for their child, they pave the way for every parent who comes after them. They makes it that much easier for the next parent and that much safer for the next child. Every conversation, every email, every EpiPen or Auvi-Q training is like a coat of paint that we apply and someday soon, we’ll have painted a whole new landscape: a world where food allergies are understood and accommodated everywhere.
 

Off to College with Food Allergy?

It’s hard to believe that our son, Morgan, is a senior in high school already! The topic of college is coming up frequently in our house. We continue to learn more and more about what information and laws are available for students with food allergies in college.

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The Food Allergy Research Education (FARE) website has minimal information on sending your child with food allergy to college. They have two pages of info  here and here.

I can’t find anything about the Lesley University settlement and how it pertains to food allergic students from any of the major food allergy non-profit groups. The Lesley University settlement was initiated “around October 2009, <when> the United States Department of Justice (“United States”) received a complaint alleging that Lesley University (“Lesley” or the “University”) violated Title III of the Americans with Disabilities Act of 1990, 42 U.S.C. §§ 12181-12189 (“ADA”) by failing to make necessary reasonable modifications in policies, practices, and procedures to permit students with celiac disease and/or food allergies (collectively “food allergies”) to fully and equally enjoy the privileges, advantages, and accommodations of its food service and meal plan system.”

The University was requiring students to purchase a meal plan, yet the school had no way to safely feed the students. The Department of Justice determined that the University was in violation of the ADA (Americans with Disabilities Act) and mandated that they accommodate students on special diets. This settlement has implications for all colleges and universities, especially that celiac disease and food allergies can be considered a disability as defined by the ADA.

The National Foundation for Celiac Awareness has a great 2013 College Student Toolkit that explains the impact of the Lesley University settlement on students with celiac disease.

We’ve learned a few things in an attempt to find the ‘right college’ for Morgan. First off, he wanted a specific Engineering degree (Computer Science), so that helped him to narrow his choices. Then, we started visiting a few schools.

We learned that it’s important to contact the University/College Disability Services Office (or whatever that office is called at a particular school) as a starting point. The timing of this contact may be best AFTER the student is admitted into the school. We have found that dealing directly with the Housing and/or Dining Services office might yield incorrect/unlawful suggestions.

In other words, the Housing Manager at a Colorado school that we visited told our family that it wouldn’t be possible for our son to have a dorm room free of his allergens as a requirement/accommodation. My contact at the Office of Civil Rights stated that this is incorrect. A ‘reasonable accommodation’ (which is the standard that colleges are held to, not FAPE-Free Appropriate Public Education) would be an allergen-free dorm room.

You can also find out general information from the Housing and Dining Offices that would be pertinent to your child attending college: if cafeterias routinely post ingredient lists, whether their cafeteria workers receive any training about food allergies, whether the kitchen can accommodate special requests, if the dorm rooms have air conditioning (for students with asthma), whether refrigerators, microwaves or air purifiers are allowed in dorm rooms, whether freshman are allowed to live in an apartment rather a dorm. The list goes on and on – we know that there are specific items that Morgan wants in order to maintain his health and safety, and we asked each school our questions about the specifics.

We found that specifying accommodations is best left to the drafting of a written document with the Disability Service Office. Sadly, though, some of these offices have never dealt with a student with food allergies. You, the parent, and your child may be training them about what to do with food allergies.

Lastly, most Universities/Colleges that I’ve asked will not allow their staff/employees to administer an epinephrine autoinjector. Their only step is to call 911. The student will be either “on their own” or will have to rely upon training their friends to respond during an anaphylaxis episode. This is an important question to ask when you visit a college, and then determine how comfortable you and your child are with their answer!

Morgan has yet to decide where he’s going to attend college. We’ll keep you updated on his choice!

Kyle Dine – Food Allergy Performer Extraordinaire

Kyle Dine is a food allergy educator and musician. He has performed allergy awareness assemblies at over 300 schools across North America and has two CDs of music for children with food allergies. Learn more at www.kyledine.com

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Hello Kyle. Thanks for your willingness to be interviewed by AllergicChild.com! Can you tell us what food allergies you manage and have you ever experienced anaphylaxis?

I am allergic to peanuts, tree nuts, eggs, fish, shellfish and mustard. I have unfortunately had many allergic reactions, however one stands out as the most serious anaphylactic reaction. I was 21 years old and was given a snack by someone I knew who told me it was okay. My instincts told me that the treat (a brownie) was a weird thing to be safe for me, however I ate it assuming it was made safe for me. It contained cashews and turned out to be an unfortunate accident due to a breakdown in communication. I learned a very valuable lesson that day in that you can never be too careful. I triple check anything I am unsure about, even food from friends or loved ones. It was a wake up call to say the least.

How old were you when you were diagnosed?

I have had allergies nearly all of my life starting at the age of two. I was initially allergic to dairy foods and outgrew it. I grew into my mustard allergy as a teenager strengthening my bond with ketchup!

How did you learn to advocate for yourself growing up?

I will admit that I had a difficult time advocating for myself. I was a very shy kid and allergies were not so prevalent at that time. I did not know anyone else that had an allergy. This often made me feel like I was a burden to others as I wasn’t so “simple” around mealtime as everyone else. I would ALWAYS carry my EpiPen with me and wore a MedicAlert bracelet. As I got older, my parents started getting my friends more involved, which really helped. They all knew how to use my EpiPen, and really supported me. It’s so much easier to ask about ingredients at restaurants and advocate for yourself when you know your friends have your back and know how serious an allergic reaction could be.

I’ve seen your posts about being on tour. Tell us about your Anaphyl-What? tour!

I firmly believe that ALL children should be educated about allergies at a young age. This helps them understand what they are all about and builds empathy towards those who have allergies. My current “Anaphyl-WHAT? Tour” will reach tens of thousands of kids at 45 schools in only two months. My assemblies raise allergy awareness in a fun way. My shows feature lots of songs, trivia, game shows, and my puppets EpiMan, EpiMan Jr. and Chef Allérgy. Kids learn a ton in 45 minutes and will transform how they view allergies. My latest tour really emphasizes the word “anaphylaxis” to let kids know how serious allergies can be, without making it scary. I am posting about my experiences while on tour on my Facebook page.

You’ve traveled to China. How did you manage that trip with your food allergies?

That is a full article in itself! I documented all of my preparations on my blog at http://foodallergiesrock.com/category/allergies-in-china/. In a nutshell, the trip was challenging. However, I love travelling and refuse to let my food allergies ever get in the way of that passion. My wife and I brought a full suitcase of safe food with us and bought an electric hot plate when we arrived. We cooked rice, pasta, chili and other dishes on the floor of our small hotel room. We ate out once and found a pizza place where they spoke English, but still used an Allergy Translation Card. I am not a foodie and don’t even care that I missed out on China’s food culture. I got to understand their culture on other levels through museums, temples, wandering the streets and practicing a few very basic Chinese phrases with locals. It was a trip of a lifetime!

Your wife has celiac disease. How do you each stay safe while cooking in the same kitchen?!

When we first started dating we thought it was so cool that we both had such dietary restrictions! We’ve had each other’s back for a long time now and do everything we can to keep each other safe. We are clean freaks with our kitchen! I eat wheat still (to help cut down on gluten-free grocery costs), but have a separate toaster and cutting board. She eats eggs, but uses a separate frying pan. She loves nutella, but only eats it when I’m gone on tour.

What advice/experience can you offer a child who’s tired of being different and doesn’t want food allergies anymore?

I had the same talk with my young cousin who was diagnosed with tree nut allergy a few years ago. I understand that it’s a downer to not be able to eat delicious looking foods, or be excluded because of an allergy. However, I really play up the fact that this one thing makes you so special and unique. Empowering a child over their allergies involves showing empathy when they are down, but also involves cheering for their successes. I tell children with allergies how proud I am of them for wearing their auto-injector and how cool their MedicAlert bracelet looks. I ask them how they stay safe in difficult situations and applaud their efforts. In essence, I try to make a child feel like they are part of something bigger. Although it’s isolating at times, kids with food allergies are part of a club of amazing children who are actively helping to take care of their own health at such a young age. That’s something to be proud of.

Do you have anything else you’d like to add?

Just as one tour ends, another one will begin this spring! I will be visiting many states across the U.S. throughout March, April and May. Please feel free to visit my website for more information and get in touch! I would love to help make a more allergy aware environment at your school!

Sweet Debbie – from Accountant to Allergy-Free Baker!

Debbie Adler

 

Thank you Debbie for being willing to be interviewed by AllergicChild!

My honor and pleasure!

Your son has multiple food allergies. What allergies are you managing?

My 5-year-old son has life-threatening, anaphylactic allergies to dairy, eggs, peanuts, tree nuts, flax seeds, sesame seeds and shellfish.

It’s a big leap to go from being an accountant to a baker. Tell us about that transition.

The transition from accountant to baker took an alphabet’s worth of career moves from accountant to b-movie actress to comedienne to director of development to editor of a teen magazine all the way through zen yoga instructor. I won’t bore you with each job I had in between.

Then I started at a again to become an allergy-free baker when my son was diagnosed with allergies to almost everything in the USDA food pyramid. When I got involved with the food-allergic community, I realized there were millions of children in the United States alone that had these severe food allergies. I wanted to bake for them as well since I had already figured it all out for my son.

I see that you use unusual ingredients like Acai Berries and Coconut Nectar. Have you found that kids with food allergies have any trouble with these ingredients?

There is a misconception out there that a coconut is a tree nut because it grows on a tree and ends in n-u-t. But in fact, coconut is a drupe, or a one-seeded fruit. Therefore, if you have a tree nut allergy you can still eat coconut and all its derivations, including coconut nectar. Now, if you have a coconut allergy, and I know some people do, that is a totally separate issue. Acai berries are just like blueberries, but they come from Brazil. So if you’re not allergic to berries you should have no problem with acai berries.

Tell us more about your book “Sweet Debbie’s Organic Treats: Allergy-Free and Vegan Recipes from the Famous Los Angeles Bakery “

Hi res Book Cover_Debbie Adler

My cookbook contains all the recipes that I developed for my bakery, that took me years to develop, including those for cupcakes, cookies, brownies, muffins, energy bars, donut holes and breads. All of these are not only allergy-free, but also gluten-free and sugar-free as well.  I developed them with the goal of making them highly nutritious as well. So there is a lot of information about the alimental values of all the ingredients and each recipe contains information about calories, carbs, sugars, etc. per serving. There’s a lot of humor in it as well. Remember, I was a comedienne when I was up to the c’s in my career choices.

You’ve been on tour recently. Do you attract more interest from the gluten-free, autism or food allergy community?

It seems there is usually a mix of people, most of whom have none of the above issues, believe it or not. They just want to learn how to bake healthfully. But, of course, there is an epidemic of people who need gluten-free items lately so I would say after the general population, gluten-free audiences are my biggest and then the food-allergic.

What are your hopes for your bakery?

I hope my bakery continues to thrive and make delectable and safe treats for everyone who wants a baked good, no matter what his or her allergy or intolerance.

Is there anything else you’d like to tell us?

My customers all know that they are not sacrificing taste or pleasure when eating Sweet Debbie’s treats, but sometimes I find there is a prejudice when people hear that everything is dairy-free, egg-free, nut-free, gluten-free, soy-free and sugar-free. They think it can’t possibly taste good. I’d like to dispel that myth because it is not only possible, it’s imperative, otherwise I wouldn’t be in business.

Kissing & Food Allergies

When our son, Morgan, was diagnosed with food allergies at 18 months old, I never thought that kissing my child could cause problems! Yet, if anyone has eaten their child’s food allergens and then given a cheek buss – well, you may be in for a big surprise! Even that minimal contact can cause an allergic reaction in a highly sensitive child. Passionate kissing can cause full blown anaphylaxis. So, it’s important to know the facts of what works with showing affection for your loved one after you’ve eaten their food allergen(s).

In 2006, Dr. Scott Sicherer of Mt. Sinai researched peanut allergen exposure through saliva.  The research looked at how long the peanut protein remained in saliva. The protein is amazingly persistent, even after teeth brushing or chewing gum. The research conclusion was as follows: “Patients with peanut allergy require counseling regarding risks of kissing or sharing utensils, even if partners have brushed teeth or chewed gum. Advice to reduce risks, though not as ideal as total avoidance, includes waiting a few hours plus eating a peanut-free meal.”

Dr. Sicherer’s research did not involve cheek kissing or a “Grandma buss”. However I have heard from parents that their child has experienced welts, hives and/or a rash after receiving such a kiss when Grandma has just eaten the child’s food allergens. It’s vital to be cautious and for all family members to understand that even this small act of love can prove dangerous for a child with food allergies.

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Once a child with food allergies becomes a teenager, that’s when the real fretting comes into play! I would encourage you and your teenager to speak with your allergist about this topic. This has also been a frequent topic at the Teen Summit. While it might be overwhelming for your teen to talk about kissing, keeping them safe supersedes potential embarrassment. When we spoke with Dr. Fleischer at National Jewish Health about kissing, he encouraged Morgan to have his date either not eat food that he’s allergic to or to eat another non-allergen meal and wait at least 2 hours after an allergy-laden meal. That could make for a very long date! Or, better yet, it makes for the necessity of having a conversation with his date prior to the day of the date.

Kids with Food Allergies has a great resource for Teens and Kissing here. The magazine, Allergic Living, has an article on the topic here.

I interviewed Sloane Miller, aka Allergic Girl, about her kissing experience that ended in anaphylaxis. Check out my interview here. Who would have thought that a beard would be the culprit!

Go out there and pucker up!

 

 

 

 

Why Your Child with Food Allergies Needs a 504 Plan at School

Through the years, I have received hundreds of emails and phone calls from parents asking if their child with food allergies needs a 504 Plan in school. From my experience, the answer is a resounding YES. Too many parents think that a 504 Plan is only written once things go sour with a school district. That is not correct! Or they think that their Health Care Plan is enough. That may be true, but the sad part is that you’ll only know if it’s untrue after a serious issue has occurred. Lastly, they think that since their school district has guidelines for food allergic children, their child’s teacher is already on board with food allergy accommodations. Sometimes that may be true, but when it’s not – it sure is nice to have a 504 Plan in place!

Your child needs a 504 Plan in place on the first day school starts. (By the way, your child needs a Health Care Plan too, and the staff needs to be trained how to administer your child’s epinephrine autoinjector. And all of this needs to be done prior to the start of the school year!)

What is a 504 Plan?

A 504 Plan is a written plan of accommodations for your child to safely attend school and to be included. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance. So, we’re talking about some food allergies being labeled a ‘disability’. 

A publicly funded school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function (such as breathing or eating in the case of severe food allergies). There is no cookie cutter approach. Two children both having food allergies and a 504 plan would not have the exact accommodations in a 504 Plan. And there are some children who, when evaluated, will be determined to not need a 504 Plan. For example, a child allergic to goats will likely not require accommodations to be in a school classroom safely, while a child severely allergic to dairy likely will. The 504 Plan is written in a group setting of your child’s teacher(s), the principal, the school counselor, school nurse, the parents and the child (age appropriate). There may be others in attendance depending upon your school district’s policies.

How does a 504 Plan differ from a Health Care Plan/Allergy Action Plan?

Some school districts will use this language interchangeably. We use the Health Care Plan for the emergency actions to take in case of an allergic reaction; and the 504 Plan lists all the accommodations necessary for our son to be safe and included.

A Health Care Plan that includes written accommodations generally does not include procedural safeguards for parents to have should the plan not be followed.  A 504 Plan does include these procedural safeguards, and you will sign an acknowledgement at the end of the 504 meeting stating that you have received these. Should your child’s plan not be followed, pull out these papers and follow the items exactly as written to rectify the situation.

Why does your child need a 504 Plan?

From our experience, it has kept our son, Morgan, who is now a senior in high school, safe and included in school. If your child has a 504 Plan, it will not be acceptable for a teacher to ask you to keep your child at home while the rest of the class does an ‘unsafe’ activity. Instead, the activity will need to be altered so that your child can be included. A peanut butter birdfeeder project becomes a Crisco Oil birdfeeder project – and every student can participate!

From our experience, a required yearly meeting keeps everyone aware. Health Care Plans are supposed to be looked at yearly, but that doesn’t occur in every school. A 504 Plan requires at least an annual review which means that all the appropriate staff members are brought back together to discuss the necessary accommodations. Morgan always attended the annual meeting which provided additional information to the staff for what was working and what needed to be amended.

From our experience, written accommodations ensure that all staff know what is expected. If the school agrees to have the playground monitor take your child’s EpiPen to the playground every day, yet nothing is in writing, how does that information get passed on to the appropriate staff? Having a 504 Plan with that stipulation in writing ensures that the right people receive the right information.

From our experience, if/when the 504 plan isn’t followed there are procedural safeguards. When we have had issues with a teacher not following our son’s Plan, we have had a discussion with her. Then if the plan still isn’t followed, we’ve contacted her supervisor. This has only occurred once in 13 years of having a 504 Plan. But all it took was the statement – “this is stated in Morgan’s 504 Plan” to have the issue fixed instantly. No school wants to be reported to the Office of Civil Rights. Ultimately, if a 504 Plan isn’t followed, and the school/school district doesn’t provide a solution, that’s where the issue can go to be resolved.

If there are any accommodations necessary for your child to attend school, ask your school district to evaluate him/her for a 504 Plan. You’ll be glad you did!

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More Resources about 504 Plans:

http://www.wrightslaw.com/info/sec504.index.htm

http://www2.ed.gov/about/offices/list/ocr/504faq.html

http://blog.foodallergy.org/2013/08/19/what-every-parent-needs-to-know-about-section-504-plans/

http://home.allergicchild.com/food-allergy-504-plans-title-ii-and-k-12-schools/

 

 

What works to keep food allergic children safe in elementary school?

Since my son, Morgan, is now starting his senior year in high school, we’ve had a lot of experience with the anxiety of the start of the school year. It’s much better now, but I so remember the fear that I might miss something that would be the key ingredient in keeping him safe at school!

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Hopefully, you have already visited your child’s elementary school and let them know (preferably last spring) that your child has food allergies and will be entering kindergarten – if that’s the case for you – or will be back for this school year with food allergies that need to be managed.

If your child has been homeschooled until elementary school, there will be an adjustment period for both you and your child. With our son’s experience in preschool being so positive, we wanted to continue that trend in elementary school.

There are generally a lot more children in an elementary school, multiple classrooms where your child will be, and likely a playground that is much further away from the office (where medications may be kept) and less monitoring on the playground than what occurred in preschool.

Here are some suggestions that we’ve found vital to keeping your child safe in grade school:

Set up a meeting with the principal to discuss your child’s needs and allergies.

Again, hopefully you’ve already done this last Spring. If not, make an appointment today! You don’t want to show up on the first day of school with an EpiPen and trying to tell the teacher how to care for your child while he/she is learning the names of 25 students. That isn’t fair to the teacher nor to your child.

Most public and private elementary schools today have dealt with a child with severe, life threatening food allergies. Other food allergic parents may take a more laid back approach which can cause confusion for a school administrator when you request more vigilant food allergy awareness and procedures. Do what’s right for your child based upon the advice of your doctor!

Have a letter from your allergist/physician stating the accommodations needed 

Your child may need an allergen-free classroom because of contact reactions to peanuts, for example. Your child might need a milk-free zone in the cafeteria for lunch. Your doctor has the best knowledge about your child, and should therefore put in writing what will be necessary for your child to safely attend school and to be included in all the academics.

Become knowledgeable about the laws available to manage food allergies

Public schools (those who receiving funding from the US Government) must provide FAPE – Free Appropriate Public Education. The term ‘reasonable accommodations’ was believed to be the standard in years past, but this standard is for colleges and employment. FAPE applies to children with food allergies.

Private schools likely do not receive funds from the US government, and therefore are subject to a different standard than are public schools. There are private schools that are willing to accommodate children with food allergies; however public schools are required to do so. Schools receiving government funds must comply with the Individuals with Disabilities Act (IDEA), Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA). The ADA Amendments of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities.

Have a Health Care Plan/Food Allergy Action Plan 

The Health Care Plan, also called a Food Allergy Action Plan, specifies the steps to be taken in the case of an allergic reaction. Distinguishing between the severe allergic reaction and the mild allergic reaction is very important. The school nurse may not be present at your child’s school every day. Therefore, someone not in the medical field would be responsible for noting the reaction and determining the correct course of action. The school nurse would be responsible for developing the Health Care Plan, and for training specific personnel.

You will want to have this plan in place BEFORE the school year starts. Also, EpiPen® training MUST occur before the first day of school. Children can have reactions at any time. Waiting until the second week of school, when things calm down for teachers, may be too late for your child in an emergency. Make sure to include a photo of your child so that all staff will know not only your child’s name, but what your child looks like!

Ask that your child with food allergies be evaluated for a 504 Plan

A 504 Plan isn’t just for those students who can’t get what they need to be safe at school. In other words, it doesn’t have to be a contentious relationship for your child to need a 504 Plan. A 504 Plan is provided so that your child can enjoy inclusion in all activities, and have the accommodations in writing. It’s a way for all the parties involved to have agreement.

Volunteer at your child’s school

Seeing what goes on in the classroom is vital to knowing how many times food is a part of the lesson. You can help provide examples of alternatives for peanut butter birdfeeders or sesame seed art projects.  Also, the staff gets to know you – and how nice you really are!

What makes an outstanding Food Allergy Aware School?

A school with outstanding food allergy awareness is willing to 1) provide accommodations in writing for your child for their specific allergies, 2) admit what they don’t know and learn, 3) follow a written health care plan (provided by your doctor) that outlines the steps to take if anaphylaxis were to occur, 4) train all necessary staff on the use of epinephrine, 5) have a school nurse in the building at all times, 6) include your child in every activity possible including field trips, 7) educate the community about food allergies, 8) refuse to allow any bullying behavior regarding food allergies, 9) find ways to celebrate without food and 10) stand up to parents (and educate them) who say that food allergies are ‘hogwash’!

Our school district has done all of the following except for having a school nurse in the building at all times. The middle school my son attended did have an almost-full-time health aide, but the elementary school did not. It still worked with the front office staff becoming thoroughly versed on allergic reactions and how to administer an EpiPen. Good luck to the start of your child’s school year!

The History of “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies”

 

Back in 1999, when my son, Morgan, was preparing to attend preschool, I began the search for an age-appropriate book for him to share with his classmates about his peanut allergies. He also had several other food allergies, at that time, but his contact reactions to peanuts made it the most worrisome. Sadly, there were no children’s books about food allergies anywhere. I came up with a wild idea that I would write a little book about peanut allergies that would teach the other preschool children why Morgan wouldn’t be sharing their snacks and that would also explain to them what an allergic reaction looked like.

I thought about what animal was always known to eat peanuts – an elephant of course! I sat down one afternoon and created the text to the entire book based upon the multiple times that I had explained to babysitters what an allergic reaction might look like.

Since I’m no artist, I asked a then-middle school neighbor, Maggie Nichols, if she could draw some pictures to go with each of the pages in the book. We put all this together in a spiral bound book to send with Morgan to school. The kids loved the book, as did the teacher. In fact, the preschool assistant told me that she learned a lot about peanut allergies from reading the book to the children!

My daughter is 5 years older than Morgan, and was in 3rd grade when Morgan started preschool. Her grade school was having an art fair, and the librarian asked me if I’d be willing to do a book signing for the event. I jumped at the chance to showcase “Allie.” To my surprise, our local newspaper wrote an article about my book signing, complete with a picture of the book cover. It looks a little different than now!

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That newspaper article ended up being picked up by two dozen newspapers across the USA and Canada. I began getting calls from people wanting to purchase the book. They also wanted to talk about peanut allergies and how was I managing day to day? It opened up our world to help others. In 1999, the Internet wasn’t the knowledge base that it is today. We had felt very isolated trying the manage food allergies. No one in our community knew what we were talking about when we shared that our son had life threatening food allergies!

Our initial printing of 300 spiral bound “Allie” books sold out! We tried to get a publisher to print the next printing to no avail. No one was interested in a first time author. Nor were they interested in backing such a niche market. So, my husband and I funded the publishing and printing of the book.

We decided to start AllergicChild.com as a vehicle to sell the book, and to share our experience of living with food allergies. AllergicChild.com came into existence in January of 2000. As they say, “What a long, strange trip it’s been”!!

Since then, we’ve updated the pictures of the book with the same illustrator, Maggie Nichols, who grew up and grew into quite an artist! We’ve sold thousands of books through three editions to date.

“Allie” is now available in Kindle format too – just to keep up with the times. As for me, I still prefer “Allie” in its book form. There’s something special about reading a book to a child sitting in your lap. And reading a book about managing peanut allergies is even better!

Summer Camp & Food Allergies

When our now 17 year old son, Morgan, was very young, I never signed him up for day camps, and I never allowed him to sleep overnight at a camp for fear of the food involved. As he aged, he began to want to participate in these activities. He also had more of an ability to monitor the food and to determine if an activity was safe for him as he got older.

Day camps frequently are run by volunteers and/or high school age kids in our area. These types of camps include art lessons, church camps, Cub Scout day camp and music camps. We have found this to be a hazardous situation in most cases unless my husband or I participate. There are many wonderful activities in which to participate during a 4-hour or 8-hour day camp, however most volunteers are unaware of how to manage children with severe food allergies and possible allergic reactions. And during that time period, lunch or snacks will inevitably be served.

Having the ability to explain food allergies the day one arrives at a camp and teach every adult how to administer an EpiPen® isn’t likely to occur. We’ve found it virtually impossible to prepare in advance for these day camps, since the volunteers show up only on the very day of the event. We therefore participated as Den Leaders for Cub Scouts, or as an adult volunteer with any of these activities. That afforded us the opportunity to monitor the food, which allowed our son to be a participant.

Day camps hosted by a local school district or college have been very positive for us. I have completed the necessary paperwork to sign Morgan up for camp adding a copy of his Health Care Plan and 504 Plan and asking that the person in charge contact me. Then, I have gone to the location to train one or numerous individuals how to operate his EpiPen® prior to the first day of class. We’ve then had the opportunity to discuss necessary accommodations, and what to do in case of emergency. Morgan has participated in numerous of these types of camps, and has never had an allergic reaction. I think the difference between these day camps and the previously mentioned ones is that there is a qualified teacher in charge!

As Morgan aged, day camps geared toward a sport such as golf have proven to work well. One of the reasons this did work so well is that the golf pro and assistants never changed. We could train all of them how to use the EpiPen® on the first day of camp, and feel comfortable that no new faces would be teaching golf by the end of the week.

One summer, Morgan volunteered as a swim instructor at a local pool. He was in the water for 1 ½ hours per day with the 3-6 year old kids helping them learn to swim. There wasn’t any issue with food at all, since there’s no food in the water! We do choose his activities carefully, yet as a teenager he’s so much more able to monitor the food that does appear.

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In regard to overnight camps, we’ve had very good luck. My son has gone for a week to the local YMCA camp and for a week to a Boy Scout Camp with much preparation beforehand. He even attended the Boy Scout National Jamboree in the summer of 2010 for a total of 17 days! These camps are more likely to have medical personnel on staff, and are manned by paid employees. There are medical forms to be completed prior to camp. We can list all his food allergies and the daily medications required to keep him properly medicated.

We specifically include EVERY medication that he might need or will need during camp, and we send all of those with him with a written explanation of doses and possible reactions. Our son has to remember to go to the nurse’s station to receive the medication, and he is old enough and responsible enough to do such. If your child is likely to forget their medication, some camps are better than others in reminding campers to take their meds. A really good camp will have a system for kids to be reminded without unnecessarily drawing attention to them.

The YMCA camp called it the “Secret Service” which was the cue for all kids who needed to take meds to head to the nurse’s office. This was a very nice way to keep medications discreet and keep campers properly medicated.

To prepare for overnight camp, I spoke with the EMT in charge of the YMCA camp a month prior to my son’s arrival. I described the medicines he would be bringing, and that he would also bring his own food. The EMT assured me that every camp counselor would know of my son’s allergies and also that they were all taught how to administer an EpiPen® should the need arise.

They served peanut butter only to those children who wouldn’t eat anything else, and it was carefully monitored at a separate table. My son had friends from school joining him for the week at camp who all understood his food allergies and all knew that no peanut butter could be eaten near him. They were a wonderful support, and exclaimed that the food brought from home looked better than the camp food!

Before choosing an overnight camp for your child, make sure that you and he/she are ready to take on this big step! Food allergies add that extra amount of precaution and potential worry that other first time campers don’t have to experience. It’s hard enough to sleep away from home for the first time, so worrying about food allergic reactions shouldn’t be part of any potential upset. Morgan was ready to handle any situation that arose, and knew the safe adults he could speak with should a reaction occur.

Earlier this summer, Morgan stayed at Colorado State University in Pueblo for Boys State, a week long summer camp about government. He initiated the calls to the Camp Director and spoke with the Nurse on staff prior to going to camp about his medications and their awareness of anaphylaxis. He also called the Chef on duty to speak with her about the possibility of safe food. I listened in on that phone call just to ensure that everything from cross contamination to ingredient listings was covered. For the first time ever, he was able to eat the camp food! The President of the University has Celiac Disease and the awareness of the kitchen staff was amazing about food allergies. Morgan learned the right questions to ask, and how to prepare for camp – a skill he will need for the future!

Experiencing Anaphylaxis

When our son, Morgan, was diagnosed with life threatening food allergies, we were lucky that he had ‘only’ previously experienced a mild reaction to touching peanut butter and had experienced a moderate reaction to his MMR vaccine. The combination of these two events caused our family care physician to realize that Morgan’s allergic reactions were beyond his medical training. He sent us to an allergist who diagnosed Morgan with several life threatening food allergies.

By following up unidentified sources of mild to moderate reactions with blood and skin prick tests, we discovered Morgan had more and more food allergies – all likely to cause anaphylaxis. At 10 years old, he had a diagnosis of peanut, tree nut, sesame and shellfish allergies. Some of these he hadn’t even eaten – he had only touched them!

At 3 years old, he had tested negative to fish, which allowed us to falsely assume he could eat trout on a camping trip the summer before his 5th grade year in school. This ended with the life altering experience of anaphylaxis. You can read about Morgan’s story here and about my husband’s story of the camping trip here (go about half way down the page).

For anyone with diagnosed food allergies, there is a possibility of anaphylaxis. Those at the highest risk for life-threatening food-induced anaphylaxis and resulting fatality are adolescents and young adults; people with known food allergy and a previous history of anaphylaxis; and people with asthma, especially with poorly controlled symptoms. Peanuts and tree nuts cause the majority of fatalities from food-induced anaphylaxis. Fatalities are also associated with delayed use or improper dosing of epinephrine.

Our son is now 17 years old, with a previous experience of anaphylaxis, has asthma (controlled at the moment), and has peanut and tree nut allergy. He has several strikes against him, so he ALWAYS carries his two EpiPens! He was old enough when he experienced anaphylaxis that he well remembers the symptoms. Some children who experienced anaphylaxis as a baby may not remember the experience. By the time they get older, they forget why their food allergies are a big deal. If your child is in this category, help them to remember by discussing with your child and your allergist why food allergies need to be taken seriously. We’ve found that doctors can get points across that we parents never can.

Your child may not yet have experienced anaphylaxis, in fact only 38.7% of children with self-reported food allergy have. This is another sub-set of food allergy patients. Sadly, they are frequently the families we read about who neglected to carry an EpiPen with them any more. Or they didn’t read a food label and just figured a product was safe. Or they never realized how serious food allergies are. Then, the child experiences anaphylaxis for the first time and is not prepared with medication to counteract the effect of the allergen.

For those of you who have experienced anaphylaxis with your child – and believe me it feels that way! – I don’t have to explain the terror of the event. I felt as if our world had tipped over. I just read the Summer 2013 edition of Allergic Living in which Gina Clowes, Parenting Coach, wrote about how to help your child after an anaphylactic reaction. It’s a great read and I’d highly suggest it.

While it’s difficult to move on after experiencing anaphylaxis, we felt it was important to allow our son to continue to live his life – go to school, participate in Boy Scouts and go on camping trips again. We also are keenly aware of what can happen with just ONE BITE of an allergen! We live and learn. And Morgan ALWAYS carries his 2 EpiPens just in case!

Food Allergy Bullying – What’s the Solution?

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There has been an abundance of publicity surrounding Food Allergy Bullying recently. My now 17 year old son, Morgan, experienced bullying around his food allergy in first grade, so I certainly empathize with this problem. What concerns me, however, is that it appears that news organizations, research and a public service announcement continue to focus on the problem and not on a solution. With many more years of parenting under my belt, experience of what does work and a long term view of bullying, I want to share some solutions to Food Allergy Bullying.

First, let’s look at some of the history.

In October 2010, a research study by Dr. Scott Sicherer and Anne Munoz-Furlong (then CEO of FAAN, the Food Allergy & Anaphylaxis Network) and others, published a study of bullying among pediatric patients with food allergy. Their calculation of the percentage affected: “Including all age groups, 24% of respondents reported that the food-allergic individual had been bullied, teased, or harassed because of food allergy.”

The Food Allergy Bullying publicity was refueled with a research study reported in the January 2013 Pediatrics Journal of the American Academy of Pediatrics that cited “31.5% of the children and 24.7% of the parents surveyed reported bullying specifically due to FA, frequently including threats with foods, primarily by classmates.”

FARE (Food Allergy Research & Education) created a Public Service Announcement about Food Allergy Bullying: It’s Not a Joke, and a recent New York Times blog post by Catherine Saint Louis called “In Bullies Hands, Nuts or Milk May Be a Weapon” furthered the discussion of this issue.

All of these sources talk about the problem of food allergy bullying, which does raise awareness about food allergies in general. The raising of awareness is a good thing, and I will certainly agree that Food Allergy Bullying is a problem. However, none of these sources are providing a solution to it. Emotional stories about children being bullied pull at our heart strings. They cause fear for parents of children with food allergies, especially if those children are young and not yet in school. Parents of young children who hear only that the school cafeteria is a scary place have expressed to me “that’s why I’m going to homeschool my child.” Rather than scaring parents (and children for that matter!), or allowing parents to think that the only solution to Food Allergy Bullying is to homeschool – let’s start talking about what parents and children with food allergies can do. And what schools and school employees can do. Let’s stop talking about fear and start talking about the existing laws, accurate statistics and empowering our children. Fear and frothy emotional appeals gain headlines, but they don’t help our children to live in a world that doesn’t yet understand the seriousness of food allergies. Let’s be educators ourselves, and talk solutions.

What are the solutions to food allergy bullying that we need to be talking about?

We need to be talking about the laws that are available for children with food allergies in schools. 

  1. A child with a food allergy has the right to an evaluation for a Section 504 Plan by the public school district where the child will attend school.  This Plan will list the accommodations necessary for that child to receive FAPE – a Free Appropriate Public Education. The ADA Amendments Act of 2008 have made big changes to what is considered a disability in school. The ADA no longer focuses on the disability but on what services a child needs. The 2008 amendments expanded the list of major life activities to include eating. While many parents take exception to the label ‘disability’, we’ve found that the benefits of having a 504 Plan in school include inclusion and safety. The old idea of having Mom ask the teacher nicely to not have allergens in the classroom is passe. If your child needs accommodations such as a peanut-free classroom, get it in writing in a 504 Plan. If another parent or child takes exception to the peanut-free classroom, they can deal with the principal of the school. As a food allergy parent, you shouldn’t have to deal with an upset parent who can’t send in Snickers bars for a classroom treat. That’s the job of the school principal. This keeps you and your child anonymous, and therefore much less likely to be bullied.
  2. The Family Educational Rights and Privacy Act (FERPA) is a Federal law that protects the privacy of student educational records. A school employee cannot tell ‘everyone’ about your child’s food allergy. In fact, the school employee will only tell those who need to know – for example, the school nurse, principal, teacher(s). Additionally, it has been our experience that not every parent and child in your school needs to know that your child has a food allergy. Telling close friends is important. The old idea of having Mom stand up in front of the entire school to tell everyone that your child has a food allergy is not only not helpful, but can be harmful for your child if it puts a target on him or her. Again, keeping your child’s food allergy on a ‘need to know basis’ keeps your child anonymous and much less likely to be bullied.
  3. Educate yourself about your state’s anti-bullying law and your school district’s anti-bullying policy. Every state, except for Montana, has some type of school anti-bullying law. These laws could certainly be widened to cover food allergy bullying specifically. When Morgan was bullied in first grade by another first grade boy waving a cracker saying “I’m going to kill you with this peanut butter cracker” the incident was taken seriously as a bullying incident. Within one hour, the ‘bully’ was suspended from school by the principal. His parents were brought into school and educated about food allergies. This was in 2002, long before there was food allergy awareness. Our school district has an anti-bullying policy, and our principal followed that policy. It made no difference that the offending item was food – the behavior was bullying.

We need to have accurate statistics – not just self-reporting.

Colorado captures bullying statistics based upon any child that is in  a ‘protected class’  (race, color, religion, disability, sexual preference, etc.) I’ve spoken with the Director of Legal Relations for our school district who stated that with disability as a protected class in Colorado, a child with food allergy who is bullied in school, should have a report sent to the state detailing the bullying incident. There is more work to be done to educate the educators about food allergy as a disability, and therefore as a protected class. The research cited above about the statistics of Food Allergy Bullying are all based upon self-reporting or parent-reporting. I’d much prefer to have exact statistics rather than self-reporting which tend to overstate what is occurring. Again, this creates fear for parents of children with food allergy, who end up believing that their child has a much higher chance to be bullied than what may be true.

We need to empower our children and quit the fear mongering.

My friend, Dana Gordin, wrote an article for Today Moms entitled “A Family’s Battle Against Food Allergy Bullying” where she discussed their family’s experience of empowerment. My son, Morgan, and I were interviewed for Health Day last year about the topic also. A quote from this article is a key part of the empowering solution: “The incident involving Morgan Smith, who is also allergic to tree nuts, sesame, fish and shellfish, was taken seriously at his school. The boy who chased Morgan was suspended for the day. He never bullied Morgan again, and the two even later became friends.”

My son never viewed the school cafeteria as a scary place. He wasn’t afraid of his classmates, nor was he afraid of his food allergies – even after he experienced anaphylaxis at age 10 to fish on a camping trip. We helped Morgan to make choices – safe choices – for his life. He viewed the bullying incident as a minor part of his childhood. After the bullying incident, we didn’t move to a new house, or pull Morgan out of school. In fact, he and ‘the bully’ became friends, and the boy became one of Morgan’s biggest advocates. This boy’s house was the only place Morgan could go for a sleepover, because the family understood food allergies so well. They are friends still today.

Morgan had other instances of children in grade school harassing him because of his food allergies. The school principal took those incidents seriously by calling in the parents and educating them, and by suspending a boy in 4th grade who wouldn’t move out of the peanut-free zone in the cafeteria with his Butterfinger bar. Our family continued to work with the school and school district to raise food allergy awareness. I sat on numerous committees within the school and PTO, and in the school district on the District Accountability Committee. This allowed other parents and district employees to get to know me. I became known as “The Food Allergy Lady.” I’ve certainly been called worse! When I suggested that a Food Allergy Task Force be created in our district to help increase food allergy awareness, the superintendent agreed. The Task Force continues to this day helping to ensure that the district guidelines for keeping food allergic children safe at school are followed, and that we continue to raise awareness about food allergies.

Morgan continued to self-advocate throughout elementary and middle school. Now in high school, he teaches his friends how to operate an EpiPen, how to help keep him safe during lunch and on overnight trips with his high school Speech/Debate team. Morgan isn’t afraid of living. He has food allergies, but his food allergies don’t have him.

Empower your children. Utilize the laws available for your child with food allergies. Don’t buy into the fear. Believe in the power of forgiveness. A bully might become your child’s friend and a food allergy advocate!

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Emergency Planning for Food Allergies & Asthma

There have been several events across the USA this Spring – the Shelter in Place in Boston, the tornadoes in Oklahoma City and the fires here in Colorado – that bring to mind the need for each food allergy family to have an Emergency Plan.

Your child no doubt has an Allergy Care Plan (or some similar name) for school. Does your family have an Emergency Plan for any of the possible emergencies that your community could face? You may be required to remain in your home, as those residents in Boston, MA had to do after the bombings. Or you could face the destruction of tornadoes or fires where you will have to evacuate your home – either temporarily or permanently.

Until last year in Colorado Springs, we never thought we would have to evacuate our home for any reason. We have had to prepare for blizzards, where we ensure that we always have enough safe food for at least 3 days to last out the storm. However, we don’t have earthquakes, hurricanes, or tornadoes. And until last year, we never had a major fire in our area. Now, two years in a row, we’ve had life altering fires where hundreds of people have lost their home and thousands have been evacuated. At least three families who lost their home in the Waldo Canyon Fire in 2012, moved to Black Forest, and lost their home again in that fire this past week!

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 The Black Forest Fire within 3 hours of starting to burn

We have come to realize the importance of having an emergency plan for our family. In the case of the recent Black Forest fire, all roads in the area were closed within 2 hours of the fire beginning. Once evacuation orders were put in place, the fire was bearing down on people so quickly that they only had 10 minutes or less to grab their essential items.

Would you know what to grab in that amount of time? Do you have a safe place to be able to take your family? When you vacation, do you know the possible threats facing the area where you are staying? These questions and more need to be part of your plan.

We have a ‘grab and go’ large folder for our “10 minutes and out the door plan”. This folder contains: our wills, recent tax returns, account numbers listing, passports, safe deposit box key, cash and other important paperwork.

If we have more time, we’ve learned to bring and do the following:

Understand Evacuation Terminology.  These definitions have been used throughout the fire evacuations in Colorado. We’ve learned to tune in to the radio and local news reports, Facebook and/or Twitter to keep up with the advancing evacuation notices AND to remain at home if we are placed on pre-evacuation with all items packed and ready to go.

  • Pre-Evacuation – No immediate threat, but the danger may be moving closer; Prepare for possible evacuation.  Pre-evacuation means there is no immediate danger to your home, family, or business, but the threat may be moving toward you.
  • Voluntary Evacuation – The danger is moving closer and a mandatory order may be issued at any time. Officials say you do not need to wait for a mandatory order before leaving.
  • Mandatory Evacuation – Leave now. You will not be allowed to return until after the threat has passed.

The 5 P’s: People, Pets, Photos, Prescriptions and Papers.  We don’t have pets, but if you do many evacuation centers won’t allow your pets to stay if you aren’t there with them. Hotels may not allow pets. For us, prescriptions were our big deal. Some prescriptions are very expensive, and we didn’t want to lose this investment when we evacuated last year. We also grabbed Morgan’s 504 Plan paperwork file and his Allergy Testing history file.  Sure these could be recreated, but what a lot of work that would have been! If your child’s asthma care plan isn’t committed to memory, you might also want to bring that with you.

Have a written list of evacuation items in addition to the 5 P’s. Have everything written on a list of what you would bring should you need to be evacuated. It’s so difficult to think of everything you need to bring in the middle  of a crisis. This list could include clothes, computers, hard drive back ups, phone chargers, checkbooks, purse.

Plan for your relocation. Know where you can go and what type of an arrangement you will need. Can you go to a shelter and have your child safely eat their food? Are you comfortable eating out every meal by going to a hotel? If not, what types of condos or extended stay hotels are in your area? Or within 100 miles of your area? Is it safe to stay with a family member?

Bring Food with you. If you have ordered special food online, you certainly want to bring it with you because you likely won’t be able to have it mailed to you in time wherever you are staying. Even businesses, like specific grocery stores, can be in an evacuation zone. So if you get food from just certain stores, keep some on hand at all times.

Be prepared to be gone for more than 72 hours. The officials told everyone here to pack enough clothes and supplies for 72 hours. Obviously those with burned homes won’t be back in a rebuilt home for probably a year or more. And others in the neighborhood won’t be allowed back in for months because of the gas and electric lines needing repairs. Many of them only packed for 72 hours and have had to get clothing, prescriptions and other supplies while they wait to be able to go home.

Bring your nebulizer and peak flow meter even if they haven’t been needed recently. We learned this one the hard way last year! It would have been much easier to have had these items with us than to have to race off to the doctor’s office. Lesson learned!

Plan for a rendezvous point. If your family members become separated, have an established location where you will meet.

Having a plan in place will help you and your family to prepare for the worst, and hope for the best – that you’ll never have to put your plan to use!

 

Here’s To Success For All Our Children

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This is our daughter, Michaela, on her first day of Kindergarten in 1996. It’s been a long road of education since then!

We didn’t know that Michaela would come to be diagnosed with several learning disabilities, or that she would also have multiple broken bones from osteopenia caused by celiac disease, or that all the stomach aches she had for years wasn’t because of anxiety about school, but rather from a mast cell disorder.

We were new parents to a second child, Morgan, who on that day was just 7 months old and yet to have his first allergic reaction.

I hear from so many of you who manage children with food allergies in addition to diagnoses of Eosinophilic Esophagitis (EoE), Celiac Disease, Attention Deficit Disorder, Dyslexia, Autism and more. Sometimes all of these diagnoses are in one child, or they span multiple children – all with different needs, and many times with different food allergies! It’s not easy on us parents, and it can become very disheartening if you’ve heard messages from teachers or others similar to what we’ve heard, “Don’t expect too much from her.”

My husband and I did and do expect a lot from our two children. We expect them to listen to their bodies and to honor their physical needs – to carry EpiPens and Benadryl always, to eat safe food always, and to take their medication appropriately and consistently. We expect them to listen to their brain and to challenge themselves academically – to try their hardest even if they receive a grade of a “C” or worse, to go to school every day and to try to learn. We expect them to listen to their heart and to follow their passion in life – to be of service and helpful to others and to treat others with respect even if they haven’t received that in return.

We encourage them to find a higher power in their life that brings them joy and peace. We encourage them to love and value each other and to spend time together. We empower them to self-advocate for their needs with their friends, family and especially at school. We empower them to question the adults in their life, because sometimes even an adult doesn’t know the safe food to feed them.

Mostly, we enjoy them. We enjoy their sense of humor; we enjoy laughing and laughing until we cry; and we enjoy the life that all these challenges of so many diagnoses have provided to our family. All of these things together have made our children who they are.

When I heard a psychologist say to me “Don’t expect too much from her” when my daughter, Michaela, was in 3rd grade – I didn’t have the 22+ years of parenting under my belt that I do now! I had just heard a list of diagnoses a page long from the experts in a “child study” the school performed on my daughter. We knew she was having difficulties in school, but even that list of diagnoses the experts provided didn’t include celiac disease or a mast cell disorder which she was diagnosed with later.

She struggled for years with dyslexia, for which we got her a reading tutor; ADHD, for which we determined to not medicate her but instead to completely change her diet away from foods with preservatives, colorings, sugar and caffeine; and an auditory processing disorder, for which we obtained a 504 Plan, along with the other two conditions. This combined effort still didn’t create ease and comfort for her to attend school. It took until high school to get the diagnosis of celiac disease. By that time, the enamel on her teeth had worn off, and she had suffered multiple bone breaks in her arms and toes! She was in college before she got the diagnosis of the mast cell disorder.

Michaela expected a lot from herself despite everything that she was experiencing. We didn’t focus on what she couldn’t do well. We helped her to focus on everything that she could do – like laugh at herself when she made a mistake, think outside the box on school projects, intuitively know how others were feeling, and encourage her to embrace being different in her thinking processes.

I remember when Michaela graduated from high school. We were on our way to the graduation ceremony when she said, “I’m so glad I’m done. The last good year of school was kindergarten!” If that doesn’t make you feel terrible as a mother! Yet, she signed up to go to college at a local community college, and found that the college lifestyle fit her needs much better. She could schedule her classes later in the day, when she was ready to go to school. She could focus on an academic area of her choice – Communications (she was always good at talking, having gotten many infractions for chatting in grade school!) She started to understand that she was good at school when she could ‘do school’ the way it fit her.

She transferred to a larger school, the University of Colorado at Colorado Springs (UCCS), for her last two years. She didn’t like this school near as much since the classes were larger, and the professors not near as caring. However, she kept going, while working two jobs, and graduated in May with a GPA of 3.3! What a wonderful accomplishment for a child with so many diagnoses!

 

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If you’re wondering if your child can do this – I assure you they can! Take it one day at a time, love your kinds, be proud of their accomplishments however big or small. Don’t let a few diagnoses alter your hopes or your child’s hopes for the future.

It makes me think of Kermit the Frog who lamented being green, which is not unlike lamenting being diagnosed with food allergies, celiac disease, ADHD or any other thing. In the last stanza of the song, he sang:

When green is all there is to be
It could make you wonder why
But why wonder why wonder
I am green, and it’ll do fine
It’s beautiful, and I think it’s what I want to be

 

 

 

 

 

 

Does Your Child With Food Allergies Dislike Being ‘Different’?

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My son, Morgan, is now 17 years old and has a long time to process feeling ‘different’ from his peers. He frequently hears from other children with food allergies who ask him questions like “Do You Get Tired of Being Different?” Morgan got the opportunity to answer this question in an email that he received earlier this week. I so enjoyed his response that I wanted to share it with all of you.

I can’t personally say I’ve ever been tired of being different; I actually rejoice in it! It makes me, ME. In the same way, having food allergies to peanuts, eggs, or animals makes you, YOU. I really enjoy being different. Why? Well, I went to a Boy Scout camp when I was younger called Camp Alexander. My mom and I really didn’t feel comfortable having the chef cook my food, so we pre-cooked and brought up all of my food for the week long camp – it was a lot of work, I know! But, it was completely and absolutely worth it.

While other Scouts were having bouncy macaroni or dried out cereal, I got to have steaming hot pancakes and sausage that I knew was both tasty and safe! If I wasn’t different, I’d never be able to have that awesome food; instead, I’d be stuck with the regular ol’ cereal. I really don’t like to be stuck with the generic stuff…it’s boring!

However, I know there’s a lot more to being different than just tastier camp food. Sometimes in school you may have to eat something different than all the other kids, and it really doesn’t feel good, right? I know the feeling. You just want to be like all the other kids instead of being different, right? Or, as you said, you have to have your mom organize all the food parties to make sure you’re safe. I’m sure you’ve been playfully teased about your food allergies – like kids complain about the fact that you just have to have food allergies. 

I say move on. Ignore them. I don’t know if you look up to someone or you want to be like someone, maybe a superhero. Iron Man maybe? I’m not sure. But if you do, just know they’re different too. They are someone SO different than everyone else and that is what makes them so special and awesome! 

I like being the “allergy child” or the “allergy kid.” It tells me they’re jealous. They don’t get special treatment (like kings. I mean, come on, we’re definitely treated like kings.) from their moms or dads or get special food simply because they’re different. They’re stuck with that plain ol’ bland cereal instead of awesome food that you like! I really do think they’re jealous. So, you know what I do? I have a lot of fun with my awesome food and ignore them.

 

It makes me a proud Mom to read my son’s response and to know that he means every word of it. I’m too am glad my son is different. We Moms didn’t ask to be on this path of advocating for our children with food allergies, but I for one am glad that I’m on this path with many other fabulous, intelligent Mothers who just want their children to be safe and happy!

 

Kicked Out of College Because of Food Allergies?

Many of you probably saw the blog post by a young Washington state woman titled, “How I was Kicked Out of College Because of My Allergy.” The blog post was taken down, but a local news station interviewed this young woman here. I was horrified and confused how this situation had occurred, especially after the young lady contacted the Disability Services Office of her school.

Since my son, Morgan, is now 17 years old and a junior in high school, we have begun the college search in earnest. It is frightening at times how little a college really knows about food allergies. However, colleges and universities need to get ready. There are approximately 15 million Americans with food allergies; and one out of 12 are under age 18. That’s about two in every classroom. Guess where they are going to end up? In college!

I wrote a blog post last year about Food Allergy, College & 504 Plans after attending a talk by a Senior Attorney with the Office of Civil Rights (OCR) in Denver. The OCR Attorney suggests that all students with food allergies should start with the school’s Disabilities Services Office (DSO) rather than go directly to the Dining & Housing Office and ask for assistance. The DSO is more likely to know what is legally required with accommodations to access the curriculum. The problem we found is that if you go to DSO first, prior to being admitted to a university/college, you might find your child not admitted. While this is not supposed to occur, it’s easy to see how it could.

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When I called a ‘certain’ Colorado university last year inquiring about meeting with the DSO when our family was visiting the school, I was told that they wouldn’t meet with us unless their 6 pages of paperwork had been completed AND that an accommodation had been determined to be warranted. I then asked how many students with food allergies the DSO had dealt with. The woman I spoke to had never heard of one student! She did say she was on the job for only a month, but that really didn’t help me feel any better. If this wasn’t part of her training, my son would be in for a long road toward educating the DSO about food allergies and what accommodations could be expected. Additionally, we didn’t want to put a big red “A” (for allergies!) on his application to the engineering program which is a highly competitive program. It would certainly be easy for them to deny my son’s application under the auspices of anything but accommodating for food allergies. (I later learned that the information we had gotten about not meeting with us until paperwork was completed was erroneous. Lesson learned: ALWAYS ASK TO SPEAK WITH THE HIGHEST LEVEL MANAGER IN THE DSO OFFICE!!)

I’ve spoken with the OCR Senior Attorney several times through the last year about numerous situations in schools where food allergies are concerned. One thing to remember is that public K-12 schools are held to the standard of FAPE – Free Appropriate Public Education, while public colleges are held to the standard of “reasonable accommodations.” The attorney prefers to not get hung up on the term ‘reasonable’ and instead to focus on “effective” accommodations for the student. The question becomes – What’s reasonable to accomplish an equal opportunity for the student? The accommodation has to be effective.

The idea is that the DSO of a school and a student should have a continued dialogue to determine what accommodations are necessary. In this interactive process, the school goes back to the student to see what’s working and what isn’t. The student reports back to the DSO with similar information. There aren’t magic solutions or one-size-fits-all. It may take some creativity, and it also varies with each student and each school. While it may be reasonable for a professor to learn how to administer an EpiPen – in a class of 300 students, is it effective? Additionally, this process necessitates that a student have complete understanding about the exact nature of their food allergy. Do they have contact issues? Have they ever had an inhalant reaction? What accommodations will be necessary for the student to have equal access to the curriculum?

There are two affirmative defenses for a college to deny an accommodation request by a student: 1) the accommodation would require a fundamental alteration of an academic program and 2) the accommodation would put an undue financial or administrative burden on the school.

The OCR Attorney told me that food allergies are a new experience for colleges, and neither the OCR nor colleges have come up with solutions. There really is very little that the OCR can do, other than provide guidance at this point since every student and every college is different. I was told that the OCR comes out with “Dear Colleague” letters to colleges on various topics, and such a letter about food allergies is somewhere in the queue. The release date of this has not yet been determined.

 

 

 

 

AllergicChild.com & Food Allergy Mama, Kelly Rudnicki

Kelly Rudnicki

Kelly Rudnicki is the author of the The Food Allergy Mama’s Easy, Fast Family Meals, The Food Allergy Mama’s Baking Book,  and Vegan Baking Classics. She’s also the creator of the award-winning blog Food Allergy Mama. Her blog has twice been named Babble’s Top Food Blog and ranked #6 in Healthiest Eating. She has appeared on The Martha Stewart Show, Windy City Live, WGN News, ABC News as well as in numerous publications including The Wall Street Journal, USA Today, Chicago Tribune, Chicago Sun Times, Parents, Parenting, Shape, Family Fun, Woman’s Day, and others.

As the mother of five young children, one of whom with severe food allergies, Kelly also spends much of her free time advocating for food allergy awareness and improving school nutrition. She volunteers and speaks on behalf of food allergy organizations such as FARE, and helped write the food allergy guidelines for the Chefs Move to Schools Chicago, an initiative launched by First Lady Michelle Obama’s Go for the Gold campaign to promote higher standards for food, fitness and nutrition education. Kelly also serves as a Parent Ambassador for Healthy Child, Healthy World.

She lives in Southern California with her husband and five children.

Kelly, can you please tell us what food allergies you manage in your children and how you found out about them? My 10-year-old son John was diagnosed at age one with severe food allergies to dairy, eggs, peanuts, tree nuts, peas and legumes. The only allergy he outgrew was egg at age three after a successful food challenge confirmation. We found out about John’s allergy like many other parents of food allergic children, a scary reaction. John was nearly a year old and ate one of his first finger foods, a Gerber Veggie cheese wheel which actually contains very little veggies but is coated in cheese powder. He immediately broke out into hives on his face, started coughing and then vomiting. It was a horrifying experience.

Kelly Rudnicki cookbook

What was your inspiration in writing your newest cookbook, “The Food Allergy Mama’s Easy Fast Family Meals“? After the success of my first book The Food Allergy Mama’s Baking Book, many of my blog readers routinely wrote me asking for my favorite family meals that are fast and allergy-friendly. As a busy mom of five, they wanted to know how I get meals on the table day in and out. I realized that there was a real need to have a practical family meal cookbook that is no nonsense, easy to use and produces delicious recipes every time. The bonus of this book is that many non food allergy families love the book just as much!

What meal is your children’s favorite? My family loves pizza night!

Are there any budding cooks in your family? As a mother of four boys I feel it is equally as important to teach them how to cook as much as my daughter. It’s an important life skill that can easily be taught by mastering a few simple cooking techniques and recipes. Cooking is the epitome of inner creativity, and something that should be fun, approachable and not scary. When people say they don’t know how to cook it is usually because they made a recipe that failed them, not the other way around. It’s wonderful to teach our children to feed our bodies good food made from the heart. And in turn they will teach their own children the importance of family mealtime and cooking. The ripple effect is amazing.

With 5 kids, do you make safe meals that everyone can eat? Or do you ‘short order cook’ a safe meal and then a meal for everyone else? If I was a short order cook, I would lose my mind! It’s hard enough as it is to cook one meal on a busy weeknight! I choose to make recipes that aren’t fussy, complicated or require a ton of ingredients. They are crowd pleasers. However, one child absolutely dislikes the main dish I’ve made for dinner, oh well. They eat the sides and move on. Parents shouldn’t feel obligated to make everything perfect for their children, it’s really OK to serve one family meal and be done with it. If anything, it teaches children to “roll with it”.

Since Mother’s Day is this month, can you share with us any special celebrations that your family has for this occasion? I usually take the day to go for a run and reflect on being a mother and what it means to me. The day I became a mother I was forever changed. Having children forced me to get out of my comfort zone and challenge me to be the best person I could be. I wanted them to watch and learn from not only my successes but most importantly my mistakes. There is no greater reward in my life than my children. I also take the day to remember my own mother, who passed away 16 years ago. My heart broke the day she died, and I don’t think you ever fully recover from the death of your mother. But you do learn, grown and become a mirror of what she was to you.

What can you share with us about sending in safe school lunches – anything wonderful and new for kids tired of the same old thing in their lunch bag? I recently discovered the greatest thing about making safe lunches your child will actually eat and enjoy…have them either help or make their own! I admit I stumbled upon this concept out of part desperation, part selfishness. One day I was exhausted, running in a million directions and literally too busy to spend the extra few minutes to make lunches for my four school aged children. My kids were lounging around waiting for me to take them to school and I had an A-ha moment….have THEM make their own lunches. I had rules; make a sandwich or something with protein, a veggie and a fruit. Cracker and snacks were optional. It was a true epiphany! The kids took ownership in their meals, and were proud to make lunches THEY liked. And it was fun for them to be creative in what they packed every day. I do check the end result to make sure there isn’t just frosted flakes packed. But they’ve done a great job and I think they have really learned the value of making your own meals.

Thank you for including me!

Thank You Kelly and Happy Mother’s Day!

 

How Vigilant Is Your Family With Food Allergies?

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Having read about yet another tragic death from food allergies last week – a peanut allergic 11 year old boy in Utah – it reminds me of the discussions we had with other food allergy families about how vigilant they were. Some families didn’t have the benefit of the knowledge about food allergies from an allergist. Some didn’t properly know how to recognize the symptoms of an allergic reaction. Some felt that an overly vigilant lifestyle around food allergies would thwart their child’s ability to enjoy life. Other families were so scared of an allergic reaction that they hovered over their child not allowing them to ever be without parental supervision. We’ve found the more understanding and awareness we have of the potential for an allergic reaction, the more able we are to make an informed decision about  what level of vigilance is needed. With food allergies, once a family figures out how vigilant they need to be, sometimes it’s too late – and that is beyond tragic!

When our son, Morgan, was diagnosed at 18 months old with a severe peanut allergy (and an egg allergy too), he had experienced hives upon touching a peanut butter sandwich. After that, we were in that stage of denial, hoping that the skin prick test was an anomaly. I thought maybe he would outgrow the peanut allergy. He was able to eat eggs baked in foods just fine, so maybe we were over reacting to the food allergy diagnosis.

A year or so later, at the local school playground, I was talking with another Mom whose 8 year old son had a peanut and egg allergy. She told me about how they never tell the school about his food allergies because he only reacts if he eats the food. And according to her, he knows to never eat peanuts or eggs. She also said something like, “Besides we end up in the ER a couple of times a year, but it’s no big deal.” I was horrified and scared! Was that in our future? Was that really the level of vigilance that was acceptable?

Something shook me to the core about that conversation, and I decided that our family wasn’t going to live that way. There had to be a way to stay away from Morgan’s food allergens and to keep him safe. We needed some agreements to keep him safe in all situations. If my husband and I agreed about these when he was a little boy, Morgan could then continue living by these rules when he took on keeping himself safe.

Here were our rules about food:

Eat foods that have an ingredient label

With the labeling laws in existence now, even this can be problematic if a teacher is expected to read an ingredient label and understand that “May contain…” is a voluntary statement on a label. That’s why we needed more rules than just this one! We read the label of every product along with Morgan from his earliest years. I believe Morgan wanted to learn how to read at a very early age to be able to read food labels.

Read every ingredient label every time you purchase a product

Product ingredients change even if the product packaging stays the same. We made this mistake once with a Klondike ice cream bar. We had purchased this product for at least a year and while the packaging stayed the same, the product contained a “may contain peanuts” warning that I didn’t read. He had a horrific stomach ache after eating, and we were able to trace it back to the ice cream bar. We were graced with a warning on this!

Any baked foods that don’t have an ingredient label aren’t allowed

Think about bake sales at school – a disaster waiting to happen!! Another little girl in Morgan’s kindergarten class had a peanut allergy. She had never had a reaction, but since her older brother had a peanut allergy the parents had her tested too. They had an EpiPen for her at school, but they didn’t give her any rules about her peanut allergies other than “don’t eat peanuts.” Therefore, she would ask another child at a bake sale, “Does this have peanuts in it?” I cringed when I heard this. Thankfully, she outgrew her peanut allergy and nothing bad happened along the way. This situation could have easily turned out otherwise.

Eat only foods that Mom & Dad give you or approve

When Morgan would go to a birthday party, I would either prepare a safe snack for him OR he would decide to not eat OR on the rare occasion that the food was safe, I would have read the label and approve it for him. Usually this was with ice cream. Morgan has brought his lunch to school every day. While the school is required to provide a safe meal for him, we were able to provide a safe lunch for him and did so. It was one less worry for us.

– Carry a Chef Card for Restaurant eating

Eating at a restaurant with food allergies is a big deal. Carrying a Chef Card really helps to let the wait staff and the Chef know EXACTLY what your child is allergic to. Better yet, speak with the chef about cross contamination and how to keep your child safe. Have your child practice giving the information to the wait staff when they get older so that they will be able to do so alone when they are a teenager.

Carry Your EpiPen AT ALL TIMES

There will be mistakes with food allergies. Having two EpiPens with you at all times will ensure that when there is a mistake, you have this life saving medicine within arm’s reach. Additionally, keeping an EpiPen in the car will ruin the medication (too hot) or the injector device (too cold).

Don’t make food allergies the center of your child’s life

Morgan has been able to do so many activities because we look at the opportunity for him to enjoy and experience life first, and then we figure out how to manage his food allergies. He is an intelligent, loving, wonderful son who happens to have food allergies.

AT 17 years old, Morgan now is responsible for caring for himself when it comes to food allergies. He’s very cautious and makes good decisions. And he ALWAYS carries his EpiPens. Yep, you’re reading a little Mother Pride on that one!!

Have You Become a Food Allergy Detective?

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When my son, Morgan, was little we were constantly trying to figure out what caused his red, weeping eyes. Or his runny nose. Or his bad eczema. Or his hives. It was a daily battle in becoming what I now call a “Food Allergy Detective.”

Truly, it was frightening to not know why he was reacting when we went to the library, for example. We’d bring home several books. I’d look over at Morgan and he would be a mucousy mess. We never quite figured out that reaction for sure. It was probably a combination of the fact that the library had a “Paws to Read” program where they brought a dog into the library on a weekly basis to listen as kids read. Morgan had bad dog allergies, but at the time I didn’t understand that the dog hairs left behind could be enough to cause a reaction for him. It could have been the various pollens, dust, smoke, peanut dust and dander on the books themselves. Or it could have been something that we never thought about.

All one summer, Morgan had horrific eczema. We thought it must have been the sunscreen we were using. I continued to purchase new and different products in an attempt to find the mysterious cause. It took years to figure out that it was the ‘kid foods’ at the pool where we frequented. Kid foods have lots of food dyes in them. Turns out that Morgan got eczema from all food dyes. We found this out when we eliminated food dyes from his diet, at the suggestion of our allergist. So the Popsicles he was eating daily at the pool helped to exacerbate his eczema. What a relief it was to come to that realization!

After Morgan had an anaphylactic episode to fish on a camping trip, we thought we could still grill fish at home. We’d grill it outside our house on the deck, use a special grilling ‘cage’ for the fish, clean up scrupulously afterward – and all would be fine. This worked for a few months. Then, one morning we weren’t so lucky. We had eaten fish the night before, and Morgan had been fine. But the next morning, his eyes swelled shut and then began bulging. We dosed him with steroid eye drops, Benadryl and raced off to the allergist. Our doctor determined that Morgan had touched the fish that probably wasn’t cleaned entirely off the countertops or some surface inside our house. He had likely then wiped his eyes. That was a frightening experience! We determined then that it’s not worth eating fish even with preparing it outside on the grill. We just aren’t able to be careful enough to ensure his safety.

All this detective work has been necessary to try to have some control over Morgan’s environment. Ultimately it’s helped him to gauge whether a situation is safe for him. We talked through many situations with him as he was growing up to determine what might happen based upon past experience. He is one of the most sensitive food allergic children that I know. We learned though how to keep him safe. We’ve found that it’s REALLY necessary to have a safe home. It allows his immune system to be on ‘pause’ while he’s sleeping.

As for Mom here – I’m sure the local police force would appreciate my detective abilities. I’ve honed them well through the years!

Growing Up With Food Allergies

In December of 2005, when my now 17 year old son, Morgan, was just 9 years old, I asked him if he’d be willing to start writing a column for my AllergicChild.com Newsletter (which has since become our Blog). We decided to call it Morgan’s Corner.  This was before he’d had anaphylaxis to fish on that fateful camping trip. He was still in elementary school, and wasn’t yet allowed to self-carry his EpiPen since the law in Colorado was yet to be passed.

However he was certainly knowledgeable about his food allergies! He’d experienced teasing/bullying on the playground, been left out of activities at school (even with a 504 Plan in place!) and gotten to self-advocate with a teacher. The life of a child with food allergies is filled with lessons. If you ask your child the questions below, do you know what answers you would get?

A trip down memory lane found Morgan’s original column:

 

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How old are you Morgan?
I’m 9 years old and in the 4th grade.

What are you allergic to?
Peanuts, Tree Nuts, Shellfish, and Sesame. I’m also allergic to Dogs and Cats, although it’s mostly anything that’s alive with fur on it. Although those are but a few what I am really allergic to, those are my main.

Do you ever remember not having allergies?
No, I do not remember not having food allergies. I was really young when we found out, so I don’t remember.

What’s the worst part of your allergies? In other words, what do you wish you could change?
I don’t know really what the worst part is. It’s either not going over to a friend’s house or I can’t eat something. I also wish that I did not have dog allergies just because a lot of my friends have dogs, so they have to come over to my house instead of me going over to theirs.

Have you ever been teased because of your allergies?
Well, twice actually. Once, a friend of mine went running around the playground, of course chasing me, holding a peanut butter cracker and yelling “Eat it Morgan! Eat it!” Another time is when another one of my friends actually went around chasing me pretending to be a peanut butter sandwich. All these times, I went and told the teacher and they did get in to trouble. We’re friends now, and I don’t think about it much anymore.

Have you ever been left out of activities because of your allergies? If so, what? How did that feel?
Food Fights, Food Fights, and more Food Fights. Seriously, I have to either not participate, or check the labels on all foods at a party at school. That usually takes a long time though. It sometimes felt great that I’m safe, but I also want to participate. I have also been left out when my 1st grade classroom went next door and I couldn’t go in. The classroom wasn’t peanut free. I told my teacher how it felt to be left out. She cried, and it didn’t happen again.

Food Allergies, Mast Cells & Hitting Your Threshold

Food Allergies, Eosinophilic Esophagitis (EoE), Autism, Asthma, Celiac Disease and Eczema all have mast cell issues in common. There is a huge need for research into food allergy and its relationship with these other diseases. You have probably heard of most of these diagnoses except for maybe a new diagnosis called Mast Cell Disorder.

My daughter’s and my diagnosis with a Mast Cell Disorder has lead me to do some research into mast cell disorders and how they relate to these other diseases, especially since my daughter also has tree allergies, celiac disease and ADHD; I have EoE, environmental and other severe food allergies; and my son has a diagnosis of multiple life threatening food allergies, eczema, environmental allergies and asthma. I believe there’s a huge opportunity to find a cure for these diseases by combining research efforts.

I’ve heard from so many families who have one child with celiac disease and one with food allergies; or some other combination of the issues above that there seems to be a link between these conditions. And as far as I know, no research has been done to look at a ‘main cause’ of all these diagnoses. Yet, all are on the rise in our children.

Additionally, with the Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) research that’s currently being done in an attempt to find a cure for food allergies, it concerns me greatly that children participating in a research study may not be aware that they might be trading one disease for another. They may be getting rid of their food allergies, and end up being diagnosed with EoE or a mast cell disorder somewhere in their future.

In fact, some children have to cease participation in a research study because of a diagnosis with EoE, that later resolved after ending peanut desensitization. Research on milk OIT was reported at the recent AAAAI meeting where patients were found to become more reactive to milk after three to five years of desensitization. I’m wondering if this is because a threshold has been reached where their immune system has gone into a constant state of reaction – another way of explaining a mast cell disorder.

So much isn’t known about how the immune system functions, and approximately 75% of our immune system is in our gut. It’s quite a gamble in an attempt to find a cure for food allergies!

The Allergic Response

I’m not a medical doctor nor an allergist, but this is what I understand occurs in our body when the body senses an invader, or foreign substance, and the immune system is triggered. An allergy is an overcompensation of the body’s immune system when confronted with the protein of a food, a drug (such as penicillin), a bee sting or an airborne pollen that the body views as an invader. The body releases an overload of histamines in response to the attacker substance, which can create symptoms such as a runny nose all the way to the extreme of anaphylaxis.

The immune system normally protects the body from harmful items such as bacteria or viruses. In the case of allergies, the immune system has a hypersensitivity or an allergic reaction. During an exposure to an allergen, B cells are alerted and turned into plasma cells which produce IgE (immunoglobulin E) antibodies to fight the “invader.” These antibodies travel through the body until they come into contact with the immune cells called mast cells.

mast cell

Mast cells are present in the skin, respiratory system and the gut and are important to keep us healthy by fighting off  viruses, etc. The antibodies attach themselves to the mast cells via a receptor on the surface and remain attached. That way the next time the immune system meets up with the same invader, the system is primed to react again.

Eosinophils are white blood cells that are one of the immune system components responsible for combating parasites and certain infections. IgE, mast cells, basophils, and eosinophils are essential components of allergic inflammation. Mast cells are tissue resident cells and uniquely required for immediate hypersensitivity. Basophils are largely circulating cells, but home to areas of allergic inflammation during the late phase response. Eosinophils are resident to the GI tract, but also home to allergic inflammatory sites.

Patients with EoE have a high level of white blood cells, or eosinophils, in their esophagus. Research has shown the relationship between high eosinophils and high mast cells.  Dr. T. C. Theoharides of Tufts University has found that children with autism have high mast cells, which he postulates causes the severe form of “brain fog” that these patients experience. The brain-blood barrier is compromised and affected by high mast cells. Research has found that patients with untreated Celiac disease have depressed levels of mast cells, as do patients with eczema in different recent research.

Patients with mast cell disorders may or may not have true IgE food allergies; however most of these patients are triggered by high histamine foods. Many are triggered by pollen allergies, and/or certain drugs that increase mast cells. Some, like myself, are so sensitive that food dyes in medications can cause a reaction. It’s interesting that all of these conditions involve mast cells not being “normal.”

A Little History

Since my diagnosis of a mast cell disorder in 2010, I realized how long I have suffered from other allergic issues. I had severe environmental and pollen allergies as a child; got diagnosed with several food allergies in 1993, three years after my daughter was born; and continued to have more and more stomach aches after my son was born in 1996. I got stung by a wasp in 2006, which put my body ‘over the threshold.’

It took 4 years before I got a diagnosis of a Mast Cell Disorder from Dr. Philip Miner, a gastroenterologist with the Oklahoma Foundation for Digestive Research in Oklahoma City, OK. I later found out that Dr. Miner has been researching mast cell disorders since 1988, and only recently has his work been incorporated into medical literature. More and more patients are being diagnosed with mast cell disorders since Dr. Miner has developed the various criteria to review. There are only a few research centers in the USA that have knowledge about mast cell disorders. You can find a listing of these here. Dr. Miner has trained several of these physicians. He is the ultimate researcher, and tells his patients to ‘never give up hope’ that he can help you feel better.

Mast Cell Disorders

You may have heard of systemic mastocytosis or urticaria pigmentosa (also called cutaneous mastocytosis); however Dr. Miner found that there is a spectrum of mast cell disorders that don’t necessarily biopsy in the bone marrow or the skin. One can have a pooling of mast cells in any organ, and my daughter and I have such a pooling in our gut. Patients diagnosed with systemic mastocytosis or urticaria pigmentosa also frequently have stomach aches, since the high mast cell count is not only in their bone marrow or skin, but also frequently found in their stomach.

I’ve learned from Dr. Miner that those of us with mast cell issues have a threshold over which we begin to react. This is true with most of the allergic issues. A high pollen day along with a virus can send your child’s immune system over the edge to where they break out in hives for no apparent reason. Yet what’s really going on is an onslaught of mast cell activity that has made it appear that your child can no longer tolerate certain foods, for example. Or it appears they are having inhalant reactions; or suffering from stomach aches during the Spring and Fall when pollen season is high. Too many mast cells in the body react, and the child goes over a threshold, and begins to react to virtually everything.

The high mast cells in our gut affect the mucosal barrier in our stomach and intestines leading us to ‘leaky gut’ syndrome. This allows even more food proteins to pass into our blood stream causing more food allergies and more reactive issues. My daughter’s leaky gut was exacerbated/created by her celiac disease which she had for 10 years prior to a diagnosis.

The immune system threshold may be reached by a virus, a fragrance, pollen in the air, a drug or a high histamine food. If a patient with a mast cell disorder is skin prick tested or blood tested for an allergy, there may not be a true IgE allergy to the “invader.” The mast cells are just twitchy and ready to react to anything and everything. These reactions can be in the form of hives, stomach aches or life threatening anaphylaxis.

Patients with mast cell issues may be diagnosed with celiac disease yet find their stomach aches continue even on a gluten-free diet. Or the patient may be diagnosed with Irritable Bowel Syndrome, without any biopsy completed to check for high mast cells in the stomach or intestines. Information about mast cell issues is not in abundance on the Internet. Some information about Mast Cell Disease can be found at www.tmsforacure.org and emergency care can be found here.

Published research can be found here. Most of this information is about the systemic form of the disease.

Mast Cells, Histamines, Drugs and Foods

If you believe that you and/or your child is having some mast cell issues and going ‘over the threshold’ on a regular basis, what can you do? Dr. Miner has stated that there are 7 deadly sins for mast cell patients to eat: beef, pork, onions, tomatoes, wheat, oranges, and chocolate. These foods are all high in histamine and his research has shown that mast cell patients can clear up a lot of stomach issues by ceasing to eat these foods. If your child is suddenly “over their threshold” and seemingly reacting to everything, try removing these foods from their diet and see if their system calms down.

Additionally, bananas hold histamine in the body. You may not have an allergy to them, but can still experience symptoms, like hives, if you eat them.

My daughter and I are currently on a very limited diet of foods to try to calm down our mast cell activity. We eat completely organic currently and it’s working! We never had to go on a feeding tube (which many mast cell patients have to do to give their gut a rest), for which we are very grateful. It’s really hard to eat very few foods every day diligently. But constant stomach aches and hives are no fun, so there’s a lot of willingness that we both have to feel better.

If you remove preservatives, GMOs, food dyes and packaged foods from your child’s diet – even if you don’t go completely organic – you might find that your child begins to feel better. That has been our experience.

There are certain drugs that also increase mast cell degranulation. They are:

Aspirin
NSAID’s (Ibuprofen, Motrin, Aleve)
Morphine
Iodine
d-tubocurarine (used in anesthesia)
polymixins (in over the counter bacitracin)
decamethonium
alcohol (if it makes symptoms worse)
Taking even one Ibuprofen pill can affect my stomach. I’ve learned a lot of other ways to get pain relief for muscle aches!

Mast Cell Drug Regimen

There is a drug regimen that is necessary to stabilize the mast cell. Zyrtec and Zantac are used for H1 and H2 histamine blockers. Additionally, to stabilize the mast cell, Gastrocrom (Cromolyn Sodium) is often prescribed, but neither my daughter nor I could tolerate this. Instead, we are on Ketotifen in pill form, which we obtain from a compounding pharmacy since it isn’t formally FDA approved in the USA. Patients may also benefit from Budesonide, a corticosteroid, especially if EoE is also diagnosed.

For those of you with children diagnosed with EoE, you probably notice that many of these drugs are also prescribed to manage Eosinophilic Esophagitis.

In order for mast cell patients to get better, their food, drugs and environment all need to be managed. If a patient is constantly ‘bumping up’ to their threshold, the immune system is constantly firing. And likely they are miserable with stomach aches, nausea, hives, nasal congestion, etc. Eating a low histamine diet, taking all prescribed medications, and watching for individual triggers are necessary to begin the long road to feeling better.

Mast cell disorders are a chronic disorder, and one that will not be outgrown. A patient can go into remission, but it’s very difficult to get to that point if you have been suffering for years with a high mast cell count. It can take months and even years for mast cells in the gut to normalize.

Food Allergy Research & Mast Cells

I have read a lot about the research utilizing Oral Immunotherapy (OIT) and Sublingual Immunotherapy (SLIT) for a cure to food allergies. These desensitization protocols concern me greatly because of the mast cell involvement with food allergies. I’ve yet to see one research study wherein patients are first put through a biopsy of their esophagus, stomach and intestines to get a baseline of their mast cell count at the onset of the study. In my mind, this would give researchers a better idea of which patients are more likely to go over their threshold if their gut mast cell count is already high. I have queried this idea with a leading food allergy research doctor in the USA. His response was that it’s so difficult to get patients to enter into research trials, that asking for a child to have an endoscopy would likely have more parents decline to participate.

Ingesting small amounts of allergens is certain to increase the mast cell count in the gut, and the result could be mast cell issues in years to come. We just don’t have enough research to know what is going to happen to these study participants 10 or 20 years down the road. I say this because of the history of what has happened to me. A child with multiple food allergies may not be able to eat 4 or 5 foods. An adult with a mast cell disorder may only be able to eat 4 or 5 foods!

I receive dozens of emails from families whose children have been diagnosed with EoE, yet most have never heard of a possible mast cell involvement with their child’s EoE. Some GI docs are doing biopsies for mast cells in addition to eosinophils, yet they aren’t using the Alcian Blue 3 stain, which is the only staining that effectively picks up the true level of mast cells according to Dr. Miner. So the GI doc isn’t getting the correct information to properly diagnose the problem.

I’ve also had many discussions with parents who believe that their children have an inhalant allergy to a food. They tell me these stories that are heart wrenching about their children suddenly reacting to peanuts on someone’s breath or something similar. The reactions are frequently quite severe. Inevitably, years down the road I hear from the parent that the child has been diagnosed with EoE. This makes sense in light of the mast cell involvement. If a child has a diagnosed food allergy to peanuts, for example, that may be only part of the story. The child may also have a high mast cell count that manifests into a diagnosis of EoE. Wouldn’t it be nice if the allergist who hears a story of a child having inhalant food reactions could/would send the child to a GI doc for a mast cell disorder check up?

I wish there was more shared research on these various disorders so that children wouldn’t have to suffer needlessly without a proper diagnosis. There is still so much to learn, but I hope that my diagnosis with a mast cell disorder might help others who are suffering recognize some similar symptoms and get help!

I wish that we knew more about the workings of the immune system so that not only could we find a cure for food allergies, but also a cure for EoE, mast cell disorders, autism – the list goes on and on.

I wish that the research of all these conditions were more easily shared with all the various doctors (allergists, pediatricians, GI docs) so that patients didn’t suffer for years before getting a diagnosis.

In the meantime, our family is going to be cautious about what we eat to ensure that we do our part to cease adding diagnoses to our long list!

 

 

Food Allergies in School: 3 Allergists Answer questions

Our School District’s Food Allergy Task Force wanted to find out what several allergists thought about managing food allergies at school. I sent these three allergists several questions:

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Daniel F. Soteres, MD MPH is a Board-Certified allergy/immunology physician with offices in Colorado Springs and Pueblo. He has been in private practice at Asthma and Allergy Associates and Research Center since 2005.

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Todd Mahr, MD, is a Board Certified director of pediatric allergy/immunology at Gundersen LutheranMedical Center in La Crosse, Wisconsin.

Bonnie Baswell

Bonnie B. Baswell, MD, FACAAI is a Board Certified Allergy & Immunology physician in Colorado Springs. She has been in Colorado Springs since 1984 and in practice at Colorado Springs Allergy & Asthma Clinic.

Each allergist was asked the same questions, and their responses are copied exactly as they responded. The hope was that we would be able to better manage some of the nuances of food allergies in the school classroom.

When you  are asked to write a letter outlining school accommodations for a severely food allergic child, do you always suggest an allergen-free classroom(s) for the child? Or does this depend upon age or previous allergic reactions of the child?

Dr Soteres: No, in general, I do not suggest and allergen-free classroom.  However, I do make exceptions depending on the history and testing information.  Multiple factors contribute to the decision.  There are objective criteria like skin test and blood test results and subjective issues like the history of reactions and their severity, student and parent anxiety, as well as the school’s (administration and teacher’s)  responses to these issues.

Dr Mahr: Personally for me, it depends on the age of the child. As they get into 4th grade or older, I try and include the child in the recommendation as they often do not like to be singled out. However, safety is always first. We try and recommend no food in the classroom.

Dr Baswell: I would recommend an allergen free classroom for peanuts and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut, this would have to be addressed on an individual basis.

As an allergist, if you suggest an allergen-free zone in a classroom, are you also concerned about foods containing an ingredient label stating “may contain…” being in the classroom? Or are you only concerned about products that actually include the child’s allergen? 

Dr Soteres: This is variable.  A few kids are so sensitized to their allergens that the “may contain.” label may be a threat.  For most, this is not a threat.

Dr Mahr:   We try and concentrate mostly on the labeled allergens, and this is difficult as with the labeling act, so many foods have had the “processed in..” it is hard for schools to operate in this gray zone. So with that, we usually have them acknowledge the labels.

Dr Baswell: I would recommend an allergen free classroom for peanut and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut this would have to be addressed on an individual basis.

In a school setting, would you be concerned about a peanut allergic child touching a food that had a label stating “may contain peanuts”? 

Dr Soteres: In general ,“no”.  Of course there are exceptions.

Dr Mahr: Age dependent again, but indeed the younger the child, the greater the risk of that contact getting into a mucous membrane (mouth or eye).

Dr Baswell: Yes, I would be concerned about contact reactions even if it was the ” may contain” labeling.

In the school environment, is there an age or a level of ‘milder allergy’ where you feel comfortable with a patient of yours being in a classroom with their allergen being eaten or being used in an art project or science experiment? 

Dr Soteres: As kids get older I expect them to be less messy with their foods and kids with food allergies become more savvy and better self-advocates. The art projects and science experiments make me a little more concerned.  In the past year there have been some nice studies that show some younger kids with allergy to say milk or egg seem to have a better chance of outgrowing their allergens if they tolerate the allergen in baked products AND continue to consume those products.

Dr Mahr: Art projects generally not until middle school, but even then I prefer no food allergen in an art project, even at that age, but again we try and not have food in the classroom.

Dr Baswell: I do have patients with milder food allergies that are manifested only by eczema on ingestion that I do not feel are at risk in a regular classroom. I would not want them to have contact with the offending food such as peanut butter in a science or art project so I would exempt them from this.

If a parent tells you that their child has had inhalant reactions to an allergen, is there any way for you to test for this level of an allergic reaction? For example, does a higher IgE to an allergen signify a higher likelihood of an inhalant reaction? 

Dr Soteres: There are not good studies or any test to really back up the claim that a child has had an inhalant reaction or that they are at risk for one.  We try to trust the parents’ judgment on this.  When the lab tests are high, then it supports the history as well.

Dr Mahr: Unfortunately IgE level does not correlate with sensitivity.

Dr Baswell: In general, this is rare and the usual cases are of reactions to aerosolized fish or shellfish at home or in a restaurant. I would expect their specific IgE to be significantly high. I   don’t do bronchial challenges for foods but there is some research on this. I would rely on their history of inhalant reactions and if this exists, their individualized health care plans would need to address this to prevent accidental exposures and to provide immediate treatment with EpiPens .

What have you suggested for school accommodations for your patients with reported inhalant reactions?   

Dr Soteres: We have a few situations where we have suggested an allergen free classroom.  My concern is that this can lead to a false sense of security. The main accommodation is to avoid contact and be prepared for a reaction when/if it occurs.

Dr Mahr: I think this is an area where a more personal directive is needed, rather than a global policy, as they are all so unique.

Dr Baswell: Avoidance!

Thank you to these three doctors who took their time for our Task Force. After extensive discussion about the responses, the Task Force decided that every child with food allergies needs to be looked at individually for the accommodations necessary for the child to enjoy equal access to the curriculum. It was certainly helpful to be aided by the medical standpoint however!

Food Allergies & Dating with Sloane Miller

Author Sloane Miller

Sloane Miller, food allergy advocate, author and life coach, is founder and President of Allergic Girl Resources, Inc., a consultancy devoted to food allergy awareness.  She consults with private clients, the healthcare, food and hospitality industries, government and not-for-profit advocacy organizations. Ms. Miller earned her Master of Social Work at the New York University’s Silver School of Social Work and her Master of Fine Arts in Writing and Literature at Bennington College. In 2006 she started Please Don’t Pass the Nuts, an award-winning blog for and about people affected by food allergies. In 2011, John Wiley & Sons published Ms. Miller’s first book, Allergic Girl: Adventures in Living Well With Food Allergies, the definitive how-to guide. Ms. Miller combines a lifetime of personal experience and passion with professional expertise to connect with people about how to live safely, effectively, and joyously with food allergies. You can find her at www.allergicgirl.com.

Sloane, can you please tell us what food allergies you manage and when you were diagnosed?

I have always been an allergic girl.  I have had food allergies since birth and I developed environmental allergies, eczema and asthma in early childhood.  I am also a social worker and writer.  In 2006, I became “Allergic Girl” and started the award-winning blog, Please Don’t Pass the Nuts, as a way to talk about food allergies.  I wanted to share my experience and connect with other people with food allergies; talk about what I was going through dining out, traveling, dating and working and the things I learned.

My work as a food allergy advocate—“Allergic Girl”—combines my commitment to helping people with my personal experience as someone with food allergies and my professional expertise as a social worker and writer.

What is your most recent experience with food allergen-related anaphylaxis? What were the circumstances and what did you learn from the experience?

My most recent anaphylactic experience was in 2009 after kissing a man I had been dating. Earlier that evening, we had gone over my allergens, my anaphylaxis action plan and where I kept my emergency medications. This was prescient. Later that evening, while kissing, I broke out in intense hives and started wheezing. He had eaten cashews earlier that day and, even though he had no proteins in his saliva, he had cashew nut dust in his beard. My reaction to that nut dust was swift and severe, but because we had discussed what we needed to do in an emergency, I were able to take care of the symptoms with his support and without further escalation.

The experience underscored that how vital is it to have and to know your anaphylaxis action plan, to have your emergency medications on hand in all circumstances and to communicate your needs clearly and concisely to others around you so they can support you.

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I love your book, “Allergic Girl: Adventures in Living Well with Food Allergies” especially the chapters about dating. What can you suggest to teenage girls and boys about how do you say “No” at that age to a good night kiss from a date who ate your allergen?!

Thank you! No one ever talks about food allergies and dating so I devoted a whole chapter just on that topic.

Truly, the best defense, as they say, is a good offense. Don’t wait and watch while someone you want to kiss eats your allergen then goes in for a big smooch! As difficult as it may be, speak up about what your needs are in a clear and factual way to your potential kissing partner. The last thing they’d want to do is hurt you!

Extra credit homework: It really helps to practice having this conversation. So, enlist a safe friend or parent to practice how to talk to your date about food allergies, your anaphylaxis plan, where your medications are and what you need to smooch safely.

As kids grow, they become involved with activities where the parents are no longer involved. How can parents prepare their teens and preteens for handling food allergies while away from home? Are there some ‘absolutes’ in terms of “You Must Do This…”?

Teaching a child learn self-advocacy skills can never start too early; alternatively it’s also never too late! Ideally, once your child has been diagnosed with food allergies, engage them with age-appropriate advocacy skill sets. For example, n=knowing exactly what their allergens are, how to speak up about their food allergy needs to an appropriate adult, identifying allergens, how to read labels and that you have to do it every time and most essential: knowing their personal anaphylaxis action plan and having access to emergency medications at all times.

As every child is different, go where your child is; for example, a shy child will advocate differently than a bold one.

How can parents prepare a child with food allergies with the steps to take in an ‘emergency’?

Once your child has been diagnosed with food allergies and you receive an anaphylaxis action plan from your board certified allergist, think of it as the beginning of an ongoing process and conversation. Like a fire drill, run through the steps of that anaphylaxis action plan and equally important, engage your child about what an “emergency” means. Explore with your child the possible scenarios, solutions and outcomes as well as their feelings, fears and concerns. With younger children, this conversation can happen with play or through art; with middle school and high school children let them lead you to the emotional place they need to go.

And keep practicing. At different life stages, fears, concerns, worries as well as strengths and accomplishments change. Remember, an anaphylaxis action plan is a live document and what constitutes an emergency is living conversation.

What are the key tools/rules you use to keep yourself safe?

I find for myself, my readers and my coaching clients that the best tool to create a safe environment where ever you are is to take your food allergies seriously and manage risk. What does this mean? See a board-certified allergist. Ask a lot of questions of your allergist so you will fully understand your diagnosis. Fill your prescriptions and always carry them with you; also know your anaphylaxis action plan. Communicate your food allergy needs to those a round you so they can help and support you. And, be patient with yourself. There will be mistakes.  Being prepared will help.

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Yep, that’s Morgan and Nicole with Sloane, whom we met in Chicago at last year’s FAAN conference in March 2012

Sloane and Morgan hit it off right away. It takes a food “allergic girl” to really understand a food “allergic boy”! They shared stories about managing food allergies in restaurants and school and more. It’s so wonderful for our kids to have great mentors like Sloane.

You’re probably also wondering…just how tall are Morgan and Nicole? Or is Sloane just a tiny little thing?! She is a ball of energy…and a tiny little thing next to the two of us!

Food Free Classrooms – Can You Imagine?

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Wouldn’t it be amazing if your child’s school removed all food from the classroom? Imagine what that would be like for those students with food allergies! You wouldn’t have to worry about a safe snack box; you wouldn’t have to worry about snacks at all! No birthday celebrations of cupcakes, no holiday celebrations of buffets of sweets, cookies and candies – no food at all!

There was a time, when my son was in elementary school, that such a thought was a pipe dream. Yet, there were other parents even then – 10 years ago – who thought like I did. Why is there so much food in school these days? When I was in school (back when the dinosaurs roamed, as my kids remind me), we ate at lunch time in the cafeteria. That was the only time food was allowed. Now, children get morning snacks in kindergarten. And they are only at school for 2 1/2 hours! How hungry can a child get in that amount of time? In my son’s high school, students can eat anything, anywhere, anytime. And they do! They eat and eat and eat. And sadly, most of the time, they don’t clean up after themselves, which causes even more issues for students with food allergies to have to deal with the mess that’s left over.

In 2006, as part of federal and state initiatives, our school district formed a wellness committee that looked at how much food is offered in school. We also looked at what kind of food was offered. Many of the teachers who were on the committee were blind to the fact that they gave candy as a reward for good behavior. Additionally, they used M&M’s or Skittles for counting and grouping in math. Food was used in science to “examine the chocolate chip cookie.” In art students would draw a box of Captain Crunch and then eat it. It became apparent to me why we have such an issue with obesity in this country! Food – and mainly unhealthy food – was being offered to my kids every day at school.

Getting food out of the classroom will assist with not only obesity, but also with the many medical conditions that students manage. A child with diabetes has to monitor their carbohydrate intake, and doesn’t need the constant barrage of candy that many teachers use to reward good behavior. Parents of children with ADHD, Crohn’s, and autism also wanted to have food removed from lessons. Additionally, parents made choices of their children being a vegan or vegetarian, and I found parents of these children to be of a similar mind to mine. Get food out of the classroom!

There are schools that have implemented “No food” rules. Here’s a short list of schools/school districts that have their policies listed on their websites.

Chatham, NJ school district

Guilford, CT public schools

 

Madison, CT public schools:   Go to Section 5120.3.4 called “Managing Food Allergies”. Look for #14 in the School Responsibilities.

Pottsgrove School District, Pottstown, PA

 

Howard County, MD public schools: See page 2 of the School’s responsibilities

Great Neck, NY public schools

Robert C. Hill Elementary School, Romeoville, IL

 

I’m sure there are more out there, but these are the school districts that have it in writing on their website.

I’ve been beating this “No Food in the Classroom” drum for 10 years now. This past Halloween, our school district had two elementary school students, at two different schools, go into anaphylaxis during Halloween parties. Thankfully, both students had EpiPens at school which were administered and they survived. Both incidents involved snacks being brought into the classroom by another well-meaning parent for the party. One snack had “may contain peanuts” written very small – and sadly everyone missed that statement on the label. The other snack was homemade cupcakes and included tiny crumbles of Reeses peanut butter cups on top of the frosting. That mother was supposed to bring in pretzels and thought she was doing a good thing to make homemade cupcakes.

After these two frightening incidents, our school district is progressing toward food free party celebrations. The district has been given the grace of a warning. I really hope they heed the warning and remove food from classroom parties, at the very least. I understand that there are those students who medically need to have snacks during the day and that can certainly be managed on an individual basis. My hope is that one day, schools will move back toward when the dinosaurs were roaming, and all students will eat in the cafeteria ONLY!

Stock Epinephrine bills in many state legislatures!

Many state legislatures are currently hearing testimony about “stock epi” bills, which will benefit school children with diagnosed food allergies, and those who haven’t yet been diagnosed. Several states, including Virginia, California, Georgia, Illinois, Kansas, Missouri, Nebraska, and New York, already have stock epinephrine laws in place.

Colorado HB 13-1171, concerning the use of auto-injectors in emergency situations in school settings, has recently been passed by the House Public Health Care & Human Services Committee  by a vote of 11-2. We have a long way to go to get it through the House and then through the Senate before the legislative year ends in May 2013, but it is a good start!

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More than two dozen states have either introduced legislation or are very close to doing so this year regarding stock epinephrine in schools. Some of the legislation allows for voluntary compliance, while others are mandating stock epinephrine in every school in the state.

What is stock epinephrine? It allows a school (generally defined as K-12, public and private) to have an epinephrine device (either EpiPen or the new Auvi-Q) that is non-student-specific. Stock epinephrine can be used in anaphylactic emergencies at schools for students who do not have epinephrine auto-injectors on campus. A student may have a diagnosed food allergy, or may not.

What are the benefits of this legislation? There have been at least two deaths in the last 18 months where a child had a severe allergic reaction at school and did not have epinephrine prescribed for them. If the school had a stock epinephrine device, these children could have received a dose while 911 was being called. The hope is that a school nurse, or a nurse’s designee, would be able to administer the epinephrine after noting the allergic reaction. In other words, lives would be saved!

Most doctors and allergists that I know are in favor of this legislation, as is the National Association of School Nurses.

What are the potential issues with the legislation? For those states where school nurses are handling thousands of students across several campuses, there are designees  assigned under the nurse’s  license to carry out doctor orders. Therefore, you could have an issue of a non-medically trained school secretary attempting to determine whether a child’s stomach ache is from the flu or the beginning of an allergic reaction. While epinephrine shouldn’t cause any harm to most people, giving the shot unnecessarily certainly isn’t what any school district wants to happen because of potential liability.

The other issue is the cost of the epinephrine devices that generally expire after one year. Most schools are woefully underfunded and spending $250 per 2-pack for an epinephrine auto-injector for every school every year adds up quickly. The expense is the biggest issue I’ve been hearing about in my school district that overall supports the legislation.

The last issue that I heard was brought up by a Colorado parent of two children with food allergies. She was concerned that cash-strapped parents may assume that if this legislation passes in our state that the child’s school will always have an extra epinephrine auto-injector on hand. Therefore, parents may not spend the money to send in an extra EpiPen or Auvi-Q to school with their child, only to find out that the school doesn’t have the money either!

I think a voluntary stock epinephrine law is preferable to a mandatory law because of the current fiscal environment. That will also allow individual school districts and schools to determine what is right for them. Check out your state legislature to see where you can help – testify, send emails, and get involved with this legislation!

 

Should your child’s school district have a Food Allergy Task Force?

We have one, and it’s the greatest group of advocates our school district has ever had to increase education and awareness of food allergies, and to keep children with life-threatening food allergies safe at school.

Life Before the Task Force

Before our task force was created, each parent of a child with food allergies had to train the teacher and school administrators about food allergies and what accommodations would be necessary to keep their individual child safe. In a district of over 23,000 students, we had almost 300 students with food allergies in 2007 when the Task Force was created. Today, in 2013, there are over 600 students with food allergies in our school district. The number continues to increase every year.

Each school was trying to develop its own set of best practices, yet there was no systematic way to share information about successes and challenges from one school in the district to another. Each time a new student with food allergies showed up at a school, there was another reinvention of the wheel.

How the Task Force Came into Existence

Some parents of children with food allergies became frustrated and sent letters and e-mails to the superintendent and school board, asking that a standard set of guidelines be developed to assist every school in our district to appropriately manage food allergies. Our school district, Academy District 20 in Colorado Springs, Colorado, formed a Food Allergy Task Force in response to these concerns. The school district’s superintendent supported and encouraged the group’s work.

Who’s Part of the Task Force?

Founding members included three principals (one from each level), five parents, a school nurse, the food services director, the district Section 504 coordinator, the director for legal relations and the chief operating officer. It was important to include all of these stakeholders to ensure that information was gathered to create complete guidelines for a child in the classroom, on the school bus and in the cafeteria – to name just a few. Since the group formed, others have joined, including a local physician specializing in treating children with severe allergies and asthma, three parents and two more school nurses. Members come and go depending upon new topics that come up in our school district and/or state. More and more school nurses attend the meetings over the years, since they continue to be faced with managing the treatment plans of more and more children with food allergies!

What the Task Force Does

Our Task Force submitted recommendations to the superintendent for policy revisions and guidelines for protecting children with severe allergies. Those guidelines were implemented by all schools in the district the following year. (You can review these guidelines here.)

This implementation effort involved collaboration and cooperation between school administrators and school nurses. Nurses train all district staff (including bus drivers, cafeteria staff, teachers, etc) on how to recognize symptoms of anaphylaxis and how to administer an epinephrine autoinjector.

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The Task Force continues to meet approximately two to three times a year to evaluate how things are going in our schools and to provide support to members. The success of our Task Force in creating guidelines was used as a foundation for The Colorado Schoolchildren’s Asthma and Anaphylaxis Act of 2009. This act requires the Colorado State Board of Education to promulgate rules for the management of food allergies and anaphylaxis among students enrolled in public and charter schools in the state.

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The Task Force hosted a Food Allergy Summit promoting awareness of life-threatening allergies and asthma in both 2010 and again in 2012. The keynote speaker in 2010 was a physician in internal medicine, allergy and immunology, who is also an Anaphylaxis Community Expert (ACE). A panel discussion followed his remarks, providing perspectives from two students, one elementary and one high school, a principal and two teachers, a school nurse, a school attorney, the food services director, and a parent on how to keep severely allergic children safe in school.

More than 120 parents and students attended and the task force is committed to continuing efforts to raise awareness about the need to protect children with severe, life-threatening allergies in our schools.

In 2012, the Food Allergy Summit included information about the psychological impacts of food allergies and helped students with food allergies learn how to self-advocate with a question and answer session for them to practice with difficult situations presented for them to resolve. Students got to meet other kids “just like me” and parents were able to meet with other families facing similar challenges and successes.

Our school district was the first to create a Food Allergy Task Force. Since then, there have been at least two other districts in Colorado that have also created one. The result: more children with life-threatening food allergies are safe at school! Will your district be next?

 

AllergicChild.com & Food Free Valentine’s Day Parties

Valentine’s Day is traditionally a day of chocolates and candies in celebration of the day. Too many of my son, Morgan’s, school parties were laden with treats. I rarely looked forward to helping plan the party.

There are so many ways to celebrate Valentine’s Day without food – or at least with safe foods for everyone! Here’s some ideas to help you plan a great safe party for all kids. Many of these ideas came from readers on our Facebook page here.

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  1. Beading friendship bracelets
  2. Beading keychains
  3. Bingo
  4. Card-making party and exchange
  5. Balloon games (if no latex allergies)
  6. Fruit kabobs (check for allergies first)
  7. Pin the heart on Cupid
  8. Bowling for hearts
  9. Decorate a picture frame for parents
  10. Minute to Win it games
  11. Musical chairs
  12. Freeze dance

Morgan says: Well, Valentine’s Day has been a very interesting experience, especially with school. Let’s go with what worked first. In third grade, my teacher asked that all the Valentine boxes be put in the hallway. That definitely worked, so that there would be no problems with M&M’s and various other candies that were brought in with the Valentine cards. My fourth grade teacher asked that no candy be brought in, and said that she would supply safe candy. This definitely worked. We had a dance that year during the school day and everyone dressed up. It was great!

In fifth grade, my teacher asked that no candy be brought in and she would supply none either. She was tired of all the sweets brought into school.

What didn’t work? In second grade, a kid brought in peanut M&M’s as treats with his cards. That did not go over well. He was Chinese and knew only a little English though so that was technically a misunderstanding. He brought in his cards early, so my teacher was able to send the candy and the cards home and ask his parents to help him bring in something safe.

In 6th grade, I wasn’t in school on Valentine’s Day because it was a teacher workday in our district. Our classrooms didn’t have any parties. Students could sign up for a candy stick to be sent to a ‘special someone.’ I didn’t sign up for one or receive one. In 7th and 8th grade, this candy stick event didn’t go. Nothing really happened for Valentine’s Day, besides a hat day or a fundraising event.

In high school, there are no classroom parties for Valentine’s Day nor is there anything to purchase to send to someone.

Overall, it’s a great opportunity for food allergic children to practice self-advocacy.

Back to Mom:

Isn’t it amazing how many holidays and celebrations involve food? We never realized how much food is a part of the American culture until we had a child with food allergies. With Valentine’s Day we had to always be mindful of the various ways that our son could come in contact with his allergens.

Many children at our son’s elementary school brought in candy along with Valentine’s Day cards. Yearly, we reminded our son and his teacher to watch for unsafe candy coming into the classroom. It’s always best to prepare for such prior to the event occurring and to ensure your child’s teacher knows what to do!

We’ve found that many candies are not safe for the peanut, nut or milk allergic. Reminding teachers to ask students to bring in safe treats, or none at all increases awareness of food allergies when students and parents may not remember. One year when my son was in preschool, a parent was asked by the teacher to please bring in safe candies, upon which she commented, “you mean he’s still allergic?” Yes! Every day of the year, he’s still allergic!

We hope that you can enjoy Valentine’s Day this year safely and maybe without food being part of the celebration at school!

Court cases define Food Allergy as a Disability

Recent court settlements have determined that a child or student’s food allergy is a disability. While I would have cringed several years ago to think that my son has a disability, I now see this as welcome news!

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Here are the details of the first lawsuit: A lawsuit was filed by Shannon Knudson against Tiger Tots Community Care Center after they refused to accept her daughter with tree nut allergies in to their care because they feared liability. Ms. Knudson claimed that the daycare was discriminating against her daughter and should be forced to accommodate her. The ruling won on appeal, overturning a lower court’s opinion which said that the daycare had the right to refuse a child whose care would be extraordinarily burdensome. The Iowa appeals court disagreed. They said the child’s allergy is a disability and must be accommodated under the American Disabilities Act. More information about this ruling can be found here.

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The other settlement was between the Department of Justice and Lesley University, a private non-profit institution of approximately 8,000 students in Cambridge, Massachusetts. The Lesley settlement stemmed from a student complaint in October 2009, which alleged that the university violated ADA (American with Disabilities Act) by neither addressing the needs of students with food allergies nor ensuring them an equivalent dining experience. Under the settlement terms, Lesley – and presumably, other institutions that want to stay in line with ADA – must do more than simply provide gluten- and allergen-free options in its cafeterias. It must also develop individualized meal plans for students with food allergies and allow them to preorder meals; provide a dedicated space in its main dining hall to store and prepare foods to avoid cross-contamination; display notices concerning food allergies and identify foods that contain specific allergens; train food service and staff about food allergies; and try to retain vendors that offer food without allergens. More information about this settlement can be found here.

Both of these institutions – Tiger Tots Community Care Center and  Lesley University – are NOT K-12 schools required to provide FAPE – Free Appropriate Public Education. Therefore, these rulings have really changed the landscape for day care centers and colleges. The fact that Lesley University is a private institution means that the Department of Justice oversees them, rather than the Office of Civil Rights. However, the ADA rules still apply. The rulings have determined that in these cases, food allergies are a disability. Why is that a good thing for your child?

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First let me say that when I look at my son, Morgan, I don’t see a disabled child. I see my wonderful son, who has a hidden disability. The question that has to be answered in regard to a disability is: Does a child’s impairment substantially limit one or more major life activities defined by the ADA Amendments Act of 2008 ? An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. And for school and college, that definition of a ‘disability’ works for us because my son does need accommodations in order to remain safe and to have equal access to the curriculum.

Gone are the days when a child with food allergies is seen as an imposition in a school or day care. It’s not up to parents to beg and plead for a safe classroom, hoping that some kind-hearted administrator will ‘get it.’ We have the law on our side, and it comes in the form of allowing the classification of our children’s life threatening food allergies as a ‘disability.’

 

 

 

Food Allergy Anaphylaxis – A Tragedy

Some children will have mild reactions to eating a food they are allergic to. They may experience watery eyes, a runny nose or hives, and then quickly recover with a dose of Benadryl®. Still others may vomit and immediately feel better. Other children will experience anaphylaxis, the most severe of allergic reactions and end up in the emergency room receiving shots of epinephrine. Tragically, some children will die.

This is a picture of Sabrina Shannon, a 13 year old Canadian girl when she died at school from anaphylaxis to dairy in 2003. Sabrina’s mother, Sara, has become one of the most renowned advocates of food allergy guidelines in schools to help children with food allergies stay safe. I’ve met Sara, and to say that she is wonderful doesn’t begin to explain her fortitude. I can’t imagine becoming an advocate at the level that she has – and she lost her only child. She understands how serious anaphylaxis is. Now, she just needs to impress that upon the rest of the world.

Friends and family couldn’t understand how vigilant we needed to be when our son, Morgan, was diagnosed with food allergies. How can anyone die from eating one bite of a food? Is it really necessary to read EVERY label of EVERY food that is eaten? We heard these questions and more: Why can’t your child eat the cake I made for the birthday party? Won’t he grow out of his severe food allergies?

It is estimated that five Americans die each day from anaphylaxis (from allergic reactions to medicines, food and/or insect stings). Tens of thousands of emergency room visits occur each year from anaphylaxis.

The most recent tragedy involved a 15 year old British boy who died after eating what he thought was a safe carry out meal at a restaurant. You can read about that story here.

Accidents occur, and for the food allergic child, such an accident can cause death. It is the reality of what we live with daily. We try to not focus on this; instead we try to gain an understanding of what we can learn from these tragedies. This is a preventable death, and our family does everything we can to stay safe and enjoy life.

In the April 2007 “Journal of Allergy & Clinical Immunology” research was submitted on the deaths of 31 individuals who suffered fatal anaphylaxis. Peanuts accounted for 17 of the deaths (55%); tree nuts caused 8; milk caused 4; and shrimp 2.  Epinephrine availability is a key factor in the cause of death with only 4 of the fatalities having received epinephrine in a timely fashion.

What can be learned from these tragedies for those of us with food allergic children?

It seems to me that education and awareness are the footwork that is available to us all. The more people are aware that my son has severe, life threatening food allergies, the better the chance that he will not experience anaphylaxis. Telling family members, friends, teachers, etc., about his food allergies is necessary so that they realize what they eat could potentially impact him.

Secondly, my son needs to be his own advocate. I hope that impressing a teenage girl won’t scramble his brain to the point that he forgets what he’s allergic to now that he’s a teenager! Learning at a young age how to advocate for his safety was something we worked on daily. Lastly, our allergist has told us that children with a dual diagnosis of asthma and food allergies have much more likelihood to experience anaphylaxis. For that reason, more precautions will have to be practiced. For better or worse, my son will have to know what his date ate for dinner, and maybe even for lunch!

Dr. David Fleischer, an Allergist & Immunologist at National Jewish Hospital in Denver, told Morgan and I that Morgan could have a reaction to kissing a girl if she ate one of his allergens within the previous 2 hours. She could mitigate this issue by not eating the particular food (best choice!) or by eating some other food or brushing her teeth to remove the allergen.

Various research has shown that teenagers are the highest risk group for fatalities from allergic reactions. Teenagers, in general, tend to believe they are invincible, and are more likely to take risks. When it comes to food allergies, they are less likely to have an EpiPen immediately available, and are no longer under the watchful and careful eye of their parents. Only 61% of teens reported always carrying their EpiPen in a “Risk Taking Study” by Dr. Hugh Sampson of Mt. Sinai Hospital.  In our house, we want 100% compliance with EpiPen carrying!

Food allergy reactions are extremely serious. I want to give my son every chance to learn from others, be a good advocate and enjoy life … while always carrying his two EpiPens!

Marriage, Divorce and Children with Food Allergies

If you have a child with life threatening food allergies, I’m sure you know how stressful daily living can be and how difficult it is to keep your marriage healthy and happy in the middle of all that stress. My husband, Bob, and I wrote about the Emotional Aspects of Food Allergy on Marriage in a previous blog post here.

If you’re beyond the point of staying in your marriage, my interview with Elizabeth Goldenberg is below. Elizabeth Goldenberg is the Founder and President of Onespot Allergy, a blog and retail site dedicated to food allergy safety and legal issues since 2009. She is also President of EpiCenter Medical Inc, co-founded in 2012 with Toronto Allergist Dr. Mark Greenwald, which focuses on access to epinephrine and anaphylaxis first aid training.

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Hello Elizabeth. Not only are you a divorce attorney, but also the Founder of Onespot Allergy. Can you tell us a little information about both of these careers?
I’ve been a divorce lawyer for 20 years, and I’ve practiced as a sole practitioner for my entire career. I’m actually very well suited for that work and extremely effective at it. When my younger son with diagnosed with severe food allergies eight years ago, after I learned how to keep him safe, I had a business idea. I held onto that idea for several years, then finally gave myself permission to start Onespot Allergy. I know too many people who refused business opportunities because they were afraid to take a risk, and I didn’t want to be one of them. I now spend only 20% or my time practising law. In the new year, I may cut back my practice even more because I’ve partnered with a Toronto Allergist, and we’re launching two new allergy safety products.

What food allergies does your son have and how old is he?

I have two sons, Aaron and Jacob. Aaron has no food allergies, and Jacob is severely allergic to peanuts and tree nuts. Jacob is now ten years old, and he’s doing very well.

Not having ever experienced divorce, what issues are you seeing regarding children with food allergies when a divorce occurs?

I’ve represented 817 divorcing spouses (but who’s counting). I ask every parent during the intake interview if their children have any special needs. Given that 1 in 13 children has food allergies, I should have seen over 100 parents of children with food allergies. Until very recently, no one raised food allergies as a concern. I suspect they don’t think of food allergies as a special need, and now that you’ve caused me to reflect on this, I will revise my intake interview to include a more specific question.

I was consulted on only one case where a child’s anaphylactic food allergies were the main issue inhibiting access to the child by his father. In that case, the father wanted to take the child on extended trips and to family events, but he’d never learned how to choose or prepare safe food for his son, how to inform caterers and hosts of his son’s special dietary needs, how to avoid accidental exposure, or how to recognize anaphylaxis. He knew how to use an EpiPen, but without avoidance training and the ability to recognize anaphylaxis, that wasn’t satisfactory. During one anaphylactic episode that occurred while he was having access, he left the emergency department and drove his son home while the poor child was still unconscious. Understandably, the mother had deep concerns about his most recent request to travel with the child to attend a wedding and related events. She proposed to escort the child and attend to most of his needs while letting the child attend the events without her, but the father applied to Court, since he wanted his son to make the trip alone.

What can parents who are divorcing do better to take care of their food allergic child?

A certain amount of chaos develops upon separation, as each spouse adjusts to parenting alone. Sometimes the children’s needs aren’t taken care of as effectively, for example, notes from the school don’t get shown to both parents, homework or backpacks might be left at the other parent’s house when needed for school, and permission forms might not get signed. There’s just general confusion as the dust settles.

A child with food allergies can’t afford any mistakes to happen when it comes to his or her allergy management. As much attention as prior to separation needs to be given to his or her food safety, avoidance measures at home and at school, medical forms for the school, training of teachers to recognize and treat anaphylaxis, and having EpiPens always in reach. I recommend that children always wear two EpiPens or at least one in an EpiPen belt, rather than keeping them in a backpack or loose, since they can easily be left behind. That belt must stay on the child and move with the child between each parent’s home and school, since if it’s misplaced and a reaction occurs, there can be deadly consequences. Putting the allergic child’s needs first and staying completely focused on carrying them out during separation and divorce is the key.

In relation to custody issues do the courts view children with food allergies any differently than non-allergic children?

In my jurisdiction, custody and access decisions are based on the “best interests of the child.” You use the facts of a case to make arguments in support of your client’s position, and food allergies could definitely form part of your argument and influence a decision for custody or access to that child.

Having sole custody means that you have sole decision making power. Parents may not be able to make decisions together as joint custodial parents, if one parent is uneducated or negligent about food allergies. Access to a child can be completely unrestricted, have terms attached to it, or even be supervised. If a child were repeatedly exposed to his or her allergen by an access parent, you would want to attach terms to the Order. Examples would be providing that the child must only eat food supplied from the custodial parent’s home, that the child must be in the care of the access parent the entire time (no babysitters or only approved babysitters), that EpiPens must be kept with the child at all times, or that access occur only within a reasonable distance from a major medical center.

Have custody cases been decided based upon which parent understands food allergies better? Or which parent can provide a safer home?

Definitely. The case I described involving a trip for a family event was decided completely upon the father’s lack of understanding of food allergies, and his motion to the Court was unsuccessful. Every custody case is decided upon the child’s best interests, and an aspect of that is which parent can provide a safer home. The facts surrounding each parent’s food allergy management skills would be one factor to be considered.

How is ensuring that your child’s food allergies are properly managed by your ex-spouse different from going to the extreme and being accused of Parental Alienation Syndrome?

Typically for any serious allegation affecting custody or access, like allergy negligence or excessive drinking, the spouse would have documented concerns from prior to separation and there would be ongoing incidents after separation. I would ensure that anything you’re alleging is well documented, preferably by doctors, rather than relatives swearing supporting Affidavits. When there’s a clear trail like that to follow, rather than allegations arising only after separation, a parental alienation argument would not be successful. After so many years of divorce cases, I’ve never had a client accused of parental alienation, so it’s a stretch for me to imagine food allergy concerns being used to support that argument.

Is there anything else you would like to add?

I want to thank you for this opportunity to weave my legal experience into my work as an allergy advocate. I thought my career was taking a 180 degree turn from law when I started Onespot Allergy, and it’s lovely to contribute where law and allergy intersect, bringing my passion for allergy safety full circle into my work as a lawyer.

Thank you Elizabeth!

Pumpkin Bread – Nut, Peanut, Dairy & Soy Free!

This is a food allergy favorite recipe of ours – especially at this time of year! You can also make it egg and/or wheat free by substituting safe egg replacer or a gluten-free flour mix.

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Pumpkin Bread – makes 2 loaves

Grease bottoms only of two 9x5x3 loaf pans with safe butter or our favorite – canola oil.

Mix together:

3 1/2 c. flour

2 teaspoon baking soda

1/2 teaspoon baking powder

1 1/2 teaspoon salt

2 teaspoons pumpkin pie seasoning  – and set aside.

3 cups sugar

1 cup vegetable oil

4 eggs

1-15 ounce can of pumpkin

Directions: Beat eggs. Add sugar and oil and beat.

Add pumpkin to the mixture and beat again. Add dry ingredients. Beat until smooth, not lumpy.

Bake for one hour at 350 degrees. Allow to cool prior to removing from baking pan and slicing.

Eat and enjoy! It’s especially good with a cup of (safe) hot chocolate – with marshmallows of course.

 

AllergicChild & Allergy-Friendly Cook, Cybele Pascal

CYBELE PASCAL is the author of two bestselling cookbooks, The Allergen-Free Baker’s Handbook and The Whole Foods Allergy Cookbook, and the forthcoming Allergy-Free and Easy Cooking (12/4/12). She has appeared on The Martha Stewart Show, the Food Network, the Today show, Good Morning America Health, PBS, and NPR. She is a leading blogger in the field with an award-winning website, and lectures and teaches nationally. Pascal serves as a Celebrity Ambassador Who Cares for FAAN (Food Allergy and Anaphylaxis Network) and is the founder and president of Cybele’s Free-to-Eat, a line of gluten-free foods that are free of the top eight allergens. For more information, visit www.cybelepascal.com

Cybele, what food allergies do you manage for your son?
Both my sons are allergic to shellfish.  My son Lennon also has a tree nut allergy and is allergic to kiwi. Lennon used to be severely allergic to dairy and soy, but outgrew those allergies by the age of 6, thankfully. Monte also used to be allergic to eggs, which he outgrew by one. He also suffers from allergic asthma, and when it flairs, he has to avoid dairy. It should be noted that I also have food allergies.

Did you wake up one morning and say, “I’m going to become a top 8 allergen-free cook!” or has it been a gradual process?
I never planned to be a cookbook author. In hindsight it all makes sense that I’ve ended up here, because I’d actually done a lot to prepare myself for this career, but it wasn’t conscious or planned. I was a professional writer, who’d cooked in restaurants for a living, but I never dreamed of being a culinary professional. It was a survival job, that I also happened to enjoy. I only started writing allergy-friendly recipes out of necessity. and it all came together. It’s been a very serendipitous process. Lennon was diagnosed with multiple food allergies in 2002, I wrote my first cookbook to literally answer our need for top-8-free recipes to keep him nourished and safe, and in the process I discovered how many others out there needed allergen-free recipes. Once I published my first cookbook, the Whole Foods Allergy Cookbook, I realized how extensive the need was, people started asking me for more recipes, to write columns, more books, and I realized I needed to commit myself to helping as many people as possible by providing safe and delicious food for those on restricted diets.

 

Tell us about your new book coming out in December, Allergy-Free and Easy Cooking: 30-Minute Meals without Gluten, Wheat, Dairy, Eggs, Soy, Peanuts, Tree Nuts, Fish, Shellfish, and Sesame
I’m extremely excited about my new book, because it’s a collection of 75 30-minute meals!  “Make it safe, make simple, make it fast” is my new motto! and most of all, make it delicious. I am too busy to spend hours in the kitchen, and I think most of you are too.  so I decided to write a collection of the recipes I wished I had, allergy-free and easy. This book was so fun to write, in part because it saved me so much time making dinner!

What kitchen equipment is a must-have for a family managing food allergies?
Plastic cutting boards that can be washed at high temps in the dishwasher to sanitize them; stainless steel cookware that is non-porous and therefore won’t hold onto traces of food proteins. Depending on the severity of the food allergy within your household, you may need a separate set of cookware, serving utensils, etc so you can avoid cross contact by simply having a designated “safe” set. In terms of items that will simplify your life just to make cooking easier, I highly recommend the Vidalia chop wizard, which is prominently featured in my new cookbook. I have a whole section devoted to recommended kitchen items, so please check it out!

Rumor has it that you are baking cookies that can be purchased in some Kroger stores? Tell us about this wonderful news!
This has been a labor of love that is finally coming to fruition. I’ve been working on launching a line of allergy-friendly foods called Cybele’s free-to-eat for a little over a year. I am starting out with three reader favorites from the Allergen-Free Baker’s Handbook – my three most popular cookies, chocolate chip, oatmeal raisin (gluten-free) and chocolate chunk brownie cookies. They are baked in a dedicated gluten-free allergy-friendly facility, are certified gluten-free, kosher, and vegan, and free of the top 8 allergens. Yes, you have heard right, I’m thrilled to have been picked up by Kroger, and to start out we’ll be available in Ralph’s in Southern CA, Kroger, and King Soopers.

Which food(s) that you make are your sons’ favorites?
They love shepherd’s pie, chicken nuggets, chicken tenders, hot wings with ranch dressing, chicken fried rice, (obviously they love chicken, right?) gnocchi, and Lennon’s favorite recipe in the new book is the chili mac, which I chose to put on the cover.

When I’ve tried baking gluten-free, I make hockey pucks instead of bread! What tips can you give to those of us who don’t have your chef touch?
I think the key is your flour mix. I’m a huge fan of making a flour mix with superfine brown rice flour as the base, at least for more delicate baked goods like cookies and cakes.  Authentic Foods Superfine Brown Rice Flour is really the cream of the crop. For bread, I think the key is using rapid rise yeast. You don’t need conventional yeast with gluten-free bread, because you don’t have any gluten to coax in the multiple rises. One rise with gluten free bread is enough, and rapid rise yeast will do that.

Thank you Cybele! 

What’s Your Family Tree of Allergies?

When our son, Morgan, was first diagnosed with food allergies at 18 months old, we weren’t too surprised given the Family Tree of Allergies that exist in our family. Yet, I hear from some parents who have no one in their family with allergies, and can’t understand where their child’s food allergies come from. There are many more possible causes than just genetics for food allergies, which you can find on our website here.

The Asthma & Allergy Foundation of America (AAFA) states that asthma and allergies affect 1 out of 4 Americans, or 60 million people. Further, they report that allergies have a genetic component. If only one parent has allergies of any type, chances are 1 in 3 that each child will have an allergy. If both parents have allergies, the chances increase to 7 in 10 that their children will have allergies. Dr. Scott Sicherer, in his book, “The Complete Peanut Allergy Handbook” also states that “there is a 7 percent risk, or about ten times higher risk than normal, for developing a peanut allergy if one sibling has a peanut allergy.”

Allergies can be passed from parent to child. Children may inherit the tendency to develop allergies if either parent or any family member suffers from eczema, asthma, or food allergies. The specific allergy is not inherited from the parents, merely the tendency to be allergic. If neither parent is allergic research suggests that there is still a 5-15% chance that the child will develop allergies.

Research has also shown the children who have a genetic predisposition to produce excess IgE are at least 8 times as likely to develop food allergy when delivered by cesarean section. My son wasn’t delivered by C section, but out of four grandparents, one had severe asthma and hayfever, one has cold urticaria and hayfever, one had shellfish allergy as a child and one had no allergies. That’s a lot of genetics to overcome!

Between my husband and I, my husband really doesn’t have any allergies to speak of other than an allergy to cats. Me however, that’s a different story! I’ve been recently diagnosed with a mast cell mediated disorder. In other words, I have an abundance of mast cells in my body, especially in my stomach. I also have multiple IgE food allergies, environmental allergies and cold urticaria. Our college age daughter also has these same issues, so sadly I’ve passed my genetics on to her.

There’s so much more that our family understands now about allergies in the environment, food allergies and cold hives – so I don’t blame myself for my kids getting all these allergic issues. I do hope that someday we’ll find a cure, or at least be able to mitigate the most serious of allergic reactions, anaphylaxis.

In the meantime, at least I know what it’s like to have allergies and I can help my kids to stay safe!

 

Becoming Part of a Food Allergy Support Group

I have found it really helpful to be part of a local support group of food allergy families. Our local group is called MOSAIC – Mothers of Severely Allergic Infants and Children in Colorado Springs, Colorado. There’s a very active MOSAIC group in Denver, Colorado which has been meeting for several years. Our group in Colorado Springs is newer, but we continue to grow and to have great meetings.

It’s great to have other food allergic parents to talk to about schools, local grocery stores and local laws. In fact, our group had a paramedic come to one of our meetings and tell us what would occur should one of our children go into anaphylaxis.

A local allergist and I started the MOSAIC group here by contacting as many people as we knew who have food allergies in their family. Then, he continued to give the information to his patients as they were diagnosed. The group has continued to grow from there. Other allergists in town now participate in the group and give out flyers to their patients. We’ve had several discussions about accommodations for food allergies in school. We’ve also discussed Eosinophilic Esophagitis, nutrition for children with food allergies, the emotional aspects of food allergies – the list goes on and on!

If you are a member of a support group, please let me know and I’ll send you an AllergicChild brochure for FREE via email to pass out to your members. If there’s no support group in your area, maybe you should start one! Speak with your allergist about other families in your area who have food allergic children, and start from there.

Some support groups combine efforts to get legislation passed in their state. The picture above shows several Colorado support group leaders with their children watching while then Colorado Governor Ritter signs into law the COLORADO SCHOOL CHILDREN’S FOOD ALLERGY AND ANAPHYLAXIS MANAGEMENT ACT. Since meeting through the process of getting this legislation signed, the Colorado support group leaders meet once a year to discuss food allergy issues and initiatives in the state. It’s a great group of advocates, and lifelong friendships have transpired.

Our statewide support group leaders also help to run booths at the  FAAN (Food Allergy & Anaphylaxis Network) walk. There’s no end to what several concerned parents can do!

Thanksgiving and Food Allergy Safety

The Thanksgiving holiday is almost upon us, and if you’re like us food allergies can take center stage! This can be a wonderful time of joy and sharing time with friends and extended family members. It can also be a stressful time worrying about what your child eats or what food is being served!

A plan of action before the day is a must.

We have spent Thanksgiving Day at home and at the home of relatives. I’ve found myself being more comfortable in the safety of our home because I know what foods have been made in the kitchen. If your child has pet allergies in addition to food allergies, as our son does, then all celebrations need to occur in a safe location. For years, that was at our house, because all the relatives had dogs or cats.

When we do go out of town, we have rented a condominium that is pet and smoke free, and then we invite the relatives there. If you don’t have these multiple limitations, you can still choose a safe location where the food can be monitored in its preparation. This might end up being at your house to ensure no cross-contamination issues.

Plan for the food.

We have found that it works best if we give our relatives a list of food items that our son cannot eat. We have explained to them the seriousness of the potential reaction, and that he cannot even touch peanuts, tree nuts, sesame seeds, fish and shellfish. I can tell you that the best laid plans still aren’t followed in the cases of some families like ours! At times like this, we’ve found that it’s best to get out of their kitchen, and carefully monitor our son’s whereabouts. If possible, we remove the offending food item, especially if it won’t seriously damage the family relationships.

Make sure that you read all labels of any store-bought products.

Natural flavors can include almost anything. Call the product manufacturer prior to the day of Thanksgiving to ensure the product is safe. Waiting until the day of Thanksgiving will be too late, since most manufacturers are closed for the holiday! For home baked items we’ve found it’s best to make them ourselves. There’s always a chance of a peanut butter sandwich being in the kitchen while the other food items are prepared at someone else’s house. Where we would be careful about such a chance of cross-contact, people unaware and inexperienced with food allergies wouldn’t necessarily take such a precaution.

Traveling with Food Allergies

Traveling by car is easier than traveling by plane, especially if you plan on bringing safe foods from home. We’ve traveled many times by car, and brought a cooler of food. I’ve even heard of some families traveling with a refrigerator and microwave to ensure safe meals for a long road trip! Some airlines will announce a peanut-free flight; however I’ve heard from many families that giving the airlines the information about your child’s peanut allergies at the time of reservations doesn’t necessarily mean the flight will be peanut-free when you arrive at the airport. Various airlines have information on their websites stating they are peanut-free, yet I’ve seen these exact airlines serve nut and peanut products!

Find out what is being served on the flight when you make a reservation and request a peanut-free flight. Then be prepared to speak with the ticket agent and others when you arrive at the airport. Bring hand wipes, and even a twin sized sheet to put on the airline seat to protect your child from having any contact reaction. Traveling in the morning is better because the planes tend to be cleaner. Let the flight attendant know about your child’s food allergies. With so many people bringing food onto airline flights today, there’s a high likelihood that someone will bring on peanuts or nuts to eat while in flight. You may be able to change seats should that someone be seated right next to you! The flight attendant may also be willing to announce a peanut-free flight over the loudspeaker, or provide a 3 row buffer zone in front of and behind you.

My son and I have flown Southwest Airlines for the past several years, and have had very good experiences overall. While other flights are served peanuts, our flight is not. When we purchase the tickets online, there’s an area to mark a disability. Peanut dust allergy is listed in this area. When we arrive at the airport, my son is given a pre-boarding pass which allows us to pre-board the plane, wipe down his seat, tray table and surrounding area. He has never had an issue with any peanut residue left from previous flights, but if your child is HIGHLY sensitive this airline may not be your best choice.

Plan for the fun.

We try to focus as much on non-food fun for our son’s sake so that the entire holiday doesn’t end up being a long list of don’ts. We take a walk, play board games, and play cards. We make sure that every visitor is aware of our son’s allergies so that they can protect him from harm. Morgan’s allergies were better understood by the other children in the family– almost more than the adults – when he was young! The children wanted Morgan to be a part of the fun, so they were careful about their food choices.

We have more information about traveling and eating out with food allergies click here

Let me know what has worked for you on Thanksgiving by emailing me – Nicole at AllergicChild.com .

Traveling to Europe with Food Allergies

Since our family has never been to Europe, I wanted to interview someone in the food allergy world who has and had a great experience! Julie Trone is the CEO of Allergy Free Table, LLC. She has two pocket guide style books on food allergy management. Together with her husband, John, they have created many new resources for families and teachers who manage food allergies. She loves to travel with her husband and twin boys; (one of her boys has multiple food allergies and both have asthma), ski, hike and practice yoga.

What food allergies do you manage in your twin sons and what is their age?

We currently manage peanut, tree nut, dairy, sesame, and sunflower.  Only one of our sons has food allergies. . The boys are 10 years old, soon to be 11.

How did Allergy Free Table come into existence?

About five years ago a neighbor had a 9 month old daughter who was diagnosed with severe multiple food allergies.   After advising her on food allergy management she asked if I would write a book with her on the subject.  I was very interested and came up with the concept of a pocket guide that was a quick reference guide for parents.  Eventually the torch was passed to me to take over the project.    This project led me to developing the pocket guide for educators with another friend, Maria Acebal.  Allergy Free Table is the result of these publications coming to fruition and recognizing the need for practical educational resources on this subject.

You recently went with your family to Europe and England.  What airline did you choose to take and why?

We chose Iceland Air for a few reasons. We all wanted to set foot in Iceland because it is a fascinating island with a unique culture. Iceland Air had the dates, airport locations, and price range we desired as well. We discussed our food allergy needs with a customer service representative upon booking who notated our record but it was not the reason we chose the airline. Even with the notation in place we were unsure how they would actually handle food allergy management until we were seated on the aircraft. We prepared for our flight by packing in our carry-on bag multiple packs of EpiPens and plenty of antihistamine. Our son packed his backpack with sandwiches and snacks to last the entire 10 hours of travel time. Neither the check-in nor boarding gate attendants were aware of the allergy notation and asked us to talk with the flight crew. I was concerned until the gate attendant flagged down the flight crew before they boarded. The flight crew had known about the notation then discussed their food allergy management protocol with us. They made sure they knew who Gavin was, where he was sitting, and that he was not in an aisle seat in order to avoid the possibility of cross contact. After the safety announcement, a food allergy announcement was made in three languages asking passengers to refrain from eating any nut products. They did not allow the sale of their trail mix snack and checked on him periodically. On our return flight I overheard a passenger order the trail mix and the attendant told him that it could not be purchased due to a passenger with nut allergies on board.

Can you tell us about managing food allergies in the various countries?  Were some countries easier than others?

We toured Italy, France, and England. Food is such an important part of the culture in each of these countries and varies by region. The food that is native to the region is generally served more often in restaurants and abundant in grocery stores.  For example; Fontina cheese is made in the Italian Alps where it can be purchased in most markets, cheese shops, and restaurants.
Prior to our trip we researched the location of grocery chain stores, hospitals, and pharmacies.   On our first night we stayed in Dijon, France and knew there was a large grocer in town, ‘Carrefours’.   Since we were traveling by car and had GPS we were able to find the store to shop.  Travelers who use public transportation may want to research what means of public transport will take them to the grocer.  Travelers will find small local markets with fresh produce, eggs, bread, and meat within walking distance in cities and small towns.   The local markets may or may not have GF foods like pasta and bread but carry fresh, local foods and limited packaged food.  Dairy products are very common in Great Britain, France, and Italy however we found safe breads, pastas, meats, and fish for our son.

France was the most difficult country in terms of finding allergen safe restaurants and packaged foods.  When we would find a safe product we would stock up.  Since we had a car it was not too difficult.  In Paris we did not have a car so our son ate a lot of safe cereal and slices of ham during our stay there.

In England packaged foods have the most informative labels I have ever seen.  It was quite refreshing.  Still, we followed our set rule; if you cannot read it don’t eat it (pertaining to food packaging labels).  Being in an English speaking country was  easier however we maintained the same protocol…read the labels each and every time, ask questions, and if uncomfortable trying a food say ‘no thank you’.

Did you go out to eat often?  What did you find to be difficult to manage?

We ate out two to three times a week for dinner and lunch.    When we would ‘shop’ for a safe restaurant we would take the language barrier and ability to understand our needs into account.  We rejected quite a few restaurants and frequented those that were safe.  Eating out was not very difficult as long as we were carrying safe snacks and at least two sandwiches for our son to eat just in case.  He usually ate all of the safe foods we packed and found something safe to eat (like the ham in France) at a restaurant.  Last resort for travelers is to go to an American chain like Burger King or McDonalds; we successfully avoided these restaurants.

Where did you stay – a hotel or a condo with a kitchen?

Mostly we stayed in week-long rental units with kitchens.  The day we arrived at any new location we would unpack then head to the grocery store to stock up on safe foods. In France we stayed in hotels; it was challenging.  London was a great place to stay with many grocers nearby including ‘Whole Foods’ in the Kensington area.

What can you suggest to our readers who want to take their child overseas?  Is there an age of child(ren) you believe works better?

We discovered that the most important task to managing food allergies in countries where the primary language is not English is to prepare in advance.  Order chef cards and emergency care cards in foreign languages; we purchased French and Italian cards.  I brushed up on my foreign language skills and was considered the family translator.   We also made a list of many words translated in French and Italian so we could read labels.  Other important words to translate are; medical assistance needed, where is the pharmacy, call a doctor, this is an emergency, and take me to the hospital.  It is important to learn about medical services available, proximity of the nearest hospital, and program the local emergency number (like our 9-1-1) into your cell phone.   Carry emergency medication with you always.  Even English speaking countries have a different dialect, vocabulary, and emergency number.

Packing is also a key factor.  We packed 2 jars of chocolate soy butter to last the trip and luckily it did.  I highly recommend packing the following;  plastic container, a few zip lock plastic bags, one cloth grocery bag, plastic cutlery, and a few staple foods.

It is important to educate your child before the trip about food choices, what will not be available, and what to expect.   We taught our sons that we were all going to find ‘different’ foods, some similar foods, and mostly to be prepared to try new safe foods.  They knew some sacrifices were necessary.  For instance our son never found a safe dessert, not even popsicles, so when we found Skittles he was allowed to have them.  After 7 weeks he was tired of Skittles but had a great story to tell about how many Skittles he was allowed to have.

I believe parents can bring their children to Europe at any age however the management will be different and possibly more demanding for smaller children.  Our 10 year old sons were great travelers.   Their maturity level was perfect for our long vacation abroad (50 days).  We are proud of our son with food allergies who was very interested in learning how to read a label in French and Italian as well as participate in ordering safe foods, asking questions, and being careful about choices.  He never complained about his food choices so I guess we did a good job preparing him and he was comfortable being flexible. We always had at least two sandwiches with us each day.  Every child is unique so it is not safe to assume your child is a natural traveler, especially children with medical needs.  Preparation is key!

Is there anything else you’d like to share with us?

Focus on the fun, art, history, sport, cultural attributes …anything but food.  It worked beautifully for us.  If someone has more questions have them contact me, julie@allergyfreetable.com .

 

Interview with Susan Weissman, Author of Feeding Eden & her son, Eden

Susan Weissman is the author of Feeding Eden: The Trials and Triumphs of a Food Allergy Family, a mother’s story of her son’s childhood food allergies and the life of her family.  Susan was a middle-school English teacher before turning to writing full-time. She writes for The Huffington Post and Psychology Today, has contributed to Parent & Child, Allergic Living, and various sites on the topic of allergies and parenting. She was a PBS Parent Expert. Susan holds an M.Ed and is committed to strengthening the relationship between teachers and parents, and providing information to expand awareness around an issue that affects so many of us. Her son, Eden, is now almost 10 years old.

Susan, what made you decide to write Feeding Eden: The Trials and Triumphs of a Food Allergy Family?
Like so many other food allergy parents, I felt that with all we had gone through, there had to be a way to make some sense out of what was happening, and maybe help others.  After I started, and I began to achieve some rhythm with the project, I raised my sights a bit.  I decided I wanted food allergies families to know that they were not alone. And I wanted families, teachers, grandparents, even doctors and nurses, to understand what the food allergy life feels like for us.

What I wasn’t quite prepared for after Feeding Eden was published was that so many parents would reach out to tell me that they felt like they were reading the story of their allergic family and their parenting experiences.

For parents reading this interview, what hope or suggestions can you give those newly diagnosed or still struggling to get an accurate diagnosis?
I’d say that parents should have hope and optimism as they help their children navigate their allergic condition but they must have the right doctor and accurate diagnosis. The first step: make sure parents and their doctors are communicating clearly about tests results and what I call “food history.” This is the key to defining an allergic child’s medical needs. In the first chapter of my book, titled Searching For a Savior, I describe how I bounced between specialists like a ping-pong ball, waiting for one of them to “save” Eden from his symptoms. The problem was that I needed to find an allergist whose treatment I could both understand and implement.

You mention in your book attending a support group meeting. Do you still participate in one? What value do you find for parents managing food allergies in attending support groups?
I do still participate because there is always something to learn and share. The great thing about a food allergy support group is that even if you don’t feel like sharing your personal concerns or questions (for example – how your mother-in-law just “doesn’t get it” or how hard it is to convince your teenager to wear their medical ID bracelet) simply listening to the other parents’ stories helps everyone. Time and again, I’ve been in an unfamiliar situation with Eden, and I’ll think back to other parents’ suggestions. It’s a great way to learn about resources in your community, vent frustrations in a safe environment and learn about the latest food allergy research and treatment progress. And it’s a way to “give back” even to people who don’t read the book.

Do you have plans for an additional book?

Right now, my focus is on bringing Feeding Eden into schools and family communities all around the country.

Do you have a blog (or somewhere else on the Internet that you write?)
Yes. I write at www.susanweissman.com On my site, I have a blog where I post on topics of interest to all parents, including allergy friendly recipes and food ideas. I also contribute to The Huffington Post, Psychology Today and a site called Asthma Allergies Children, among others.


Eden, thank you for being willing to answer some questions for our readers.
Are you old enough now to carry your EpiPen at school? What about on the weekends or when you and your family go out – who carries your EpiPen?
No, I don’t carry my EpiPen at school. I have two emergency kits, one is with the teachers and the other one is with the nurse. On the weekends my parents carry it. Or whoever I’m with.

I have a lot of readers who have preschool age children with food allergies. What can you suggest for these kids with food allergies when someone offers them food to eat?
I don’t think I’ve been offered food I’m allergic to at school, even pre-school, really since everybody knows I’m allergic before the school year starts. Once in a after school class a PE teacher told everyone they could have a cookie that I knew wasn’t safe so I just didn’t take one. But if they can maybe they should say, “I have food allergies. Do you know what is in the food?” That’s what I say to anyone who offers me food and I’m not sure. Then I read the label too.

Eden, when you go out Trick-or-Treating for Halloween, how do you manage your food allergies?

I go out Trick-Or-Treating I try to take safe stuff, but there usually isn’t a lot.

Does your family have any “rules” about the candy that’s brought into your home later?

If something isn’t safe in my bag I give it to my sister and my dad. I don’t really care about the candy. It’s gets annoying that I don’t have as much to eat but I just like the fun of trick or treating.

Do you know what you’re going to dress up as this Halloween?

A Dark Sorcerer

Thank you Susan and Eden!

 

 

 

AllergicChild, Halloween Fun & Safety

Managing food allergies and Halloween isn’t always easy, but we have found ways to have fun.  Since it’s a holiday immersed in food, it’s easy to become overwhelmed and want to not participate at all. Our son never allowed the thought of not trick-or-treating to enter his mind! Therefore, we learned how to handle the holiday and keep him safe too. Here are some of our ideas to enjoy Halloween and also to keep it safe:

First, have your child choose a great costume.  The dressing up part was most of the fun for my son.  The candy was an afterthought.  We’ve made costumes and allowed him to be a part of this so that he can get really excited for this part of Halloween.

My son usually had a Halloween/dress up party at preschool and elementary school for which he always brought his own snacks.  Some of these parties were elaborate events with a huge amount of food brought into the classroom. This is where I found that being a Room Mother was vital! I was able to help plan the party and ensure that only safe foods were brought in. Also, I attended the party to ensure that nothing unsafe was brought in. You’d be surprised how many parents have forgotten about nut-free snacks being required in the classroom by the time Halloween comes around. We learned to ask the teacher to send out a reminder notice prior to the party day asking for only nut-free food to be brought in. Letters at the beginning of school regarding a nut-free classroom can be but a memory to parents who don’t deal with food allergies daily.

As my son aged, we found many teachers were no longer willing to have a bunch of sugary snacks brought into the classroom at 9 am for kids to gorge on before lunch. We had many teachers give guidelines for the snacks such as only one sugary treat, and everything else had to be fruits or vegetables! Boy did we love that kind of teacher! I never trusted even the most well-meaning parent to bring in safe food for Morgan. Cross contamination in their kitchen could occur, even if they were supposedly making a safe treat. We always provided Morgan’s food for these events, or I brought the foods for the party and showed him which ones he could eat.

The rest of the class had nut free snacks that another parent provided.  I have brought special treats for my son to pass out to his friends from Vermont Nut Free Chocolates or from one of the other safe allergy food companies listed on our site here. It was very exciting for the class to have candy that he could enjoy too. This especially helped in the preschool years.

For Trick or Treating, we purchase only food that he can eat to give out at our door or we give out mini-Play-Doh or plastic rings and spiders.  When he was younger, and we would go out Trick-or-Treating through our neighborhood, he would occasionally ask for a nut free snack from a neighbor!  Most of the time people thought that was cute, and didn’t really understand.  We’ve asked him to just say thank you regardless of the food he receives. Our agreement has always been to not eat ANYTHING until we get home! I know of some food allergic families who will give out safe candies to their neighbors and tell them what costume their child will be wearing so that only safe foods will be brought home. This can work great especially if you know your neighbors well!

Once home, we pore over the candy he receives and begin to put it into piles.  The candy that we know has nuts in it goes into the pile to give out to other trick-or-treaters coming to the door.  In this way, this candy doesn’t stay in the house where an accidental mix up can occur.  Added to this pile is candy that he doesn’t like, and candy that doesn’t have a label on it.  If we don’t know the candy and it doesn’t have a label on it, we don’t allow our son to eat it.  What is left over is the candy he can eat.  This is candy or treats that we know are safe.  Raisins and Dum Dum lollipops were some of his favorites as a little boy.  There usually isn’t much candy in this “safe” pile, so I allow him to exchange some of his candy for safe treats or pennies/nickels/dimes that I have on hand. Be especially careful to read labels on all candies. Some ‘regular’ size candy bars are safe, but the Halloween size ones are manufactured in a different facility and therefore may not be safe.

My daughter doesn’t have peanut allergies; however most years she gave away her peanut candy also.  She felt better doing this, and we allowed her to make her own decision.  We kept her candy separate, with her name on it in a separate cabinet from my son’s candy.  For any candy that she kept that could cross with peanuts in the manufacturing process (such as M&M’s), we ensured that she ate these outside of the house.

This year, with Morgan a junior in high school, there won’t be any Halloween parties at school and therefore no extra foods brought in. The kids are allowed to wear costumes, but the day isn’t centered on parties. I must say it’s a welcomed relief to have him in high school!

Remember that Halloween is just one day, but vigilance is required. Make sure to discuss with your child what your expectations are about foods brought into his/her classroom. Discuss a plan for the day and what you expect in terms of your child eating safe foods at school parties. We found that talking about scenarios prior to the day helped Morgan to deal with the unexpected like unsafe foods brought into the classroom.

I also had already cleared with the teacher that if an unsafe food was brought into the classroom that he/she would deal with the parent and ask that the food be taken back home. A parent’s hurt feelings are preferable to a child going into anaphylactic shock.

Overall, try to have a fun day!

Parents Who Bully about Food Allergies

As a follow up to last month’s article about Managing Food Allergy Bullies I received many requests to write more about our experience with other parents who have bullied me and/or my husband about our son’s food allergies. It isn’t easy to manage the fears that come with sending our children off to school and then to add other parents and their issues really can push us to our limits of civility!

It was a very difficult time when our now 16 year old son, Morgan, was in kindergarten and first grade. The elementary school had never had a child with food allergies as severe as Morgan’s. And he was the first student to receive a 504 Plan for his food allergies. I had been friends with a group of three other women prior to Morgan starting elementary school who had heard me talking about Morgan’s food allergies around the neighborhood at birthday parties and soccer practices. Two of these women had children Morgan’s age, and they experienced firsthand the changes in the curriculum that had to occur in kindergarten to keep Morgan safe. And boy did they have an opinion about it!

On one occasion, the kindergarten classroom had a ‘restaurant’ for parents to come in during lunch. Peanut butter and jelly sandwiches had always been the menu item. Instead of this item, cheese sandwiches were served. I heard about it from one Mom who told me that pb&j sandwiches sure did taste better! I realized later that I expected my friends to understand my child’s food allergies and to provide support. In the end, that was too high of an expectation.

Another Mom told me that she hoped her daughter wouldn’t be in Morgan’s classroom the next year because she was tired of all the changes in regard to food. That really hurt my feelings. Sadly, things only got worse with these parents; however the school principal and teachers were very supportive and followed Morgan’s 504 Plan which required an allergen free classroom. The school staff was responsible to keep Morgan safe and that’s what was most important to me.

My friendship with these Moms deteriorated. I couldn’t seem to find the right words to express my upset with them, and therefore stayed silent and distant. The school continued to follow Morgan’s 504 Plan and kept him safe in his allergen free zones in the classrooms and lunchroom. They also made sure Morgan was emotionally supported as well. A few years later, the top blew off the situation.

One Mom announced at a PTO meeting that she was done following “all the no peanuts rules” and was bringing peanut butter cookies to Field Day for all the students. However a parent whose son was in our Cub Scout Den spoke up that she wasn’t willing to support that and children with peanut allergies deserve to be safe. I was so proud of this Mom! And it felt so good for someone to stand up for Morgan and for ALL the kids with peanut allergies especially when her children didn’t have any. For some reason, my former friends thought that my son was the only one with food allergies. I always got the sense that they thought we had manufactured his allergies for him to get more attention.

I spoke to the principal of the school after that PTO fiasco and learned that she had been dealing with this Mom for years with multiple issues around food. There had been demands that her son needed protein in the form of a Snickers bar in the classroom for a snack. Thankfully, the principal had stated that a different form of protein would be necessary. There had been threats by the Mom to bring in peanut butter cookies to a party because that’s what she wanted to bring. The principal told me that she said, “then the cookies will be immediately removed from the classroom and sent home.” I am so grateful that the principal had such a backbone, and that she stood up for Morgan’s safety.

My husband, Bob, got to experience an upsetting situation after we received a phone call from the principal one day when Morgan was in 5th grade. We learned that another Cub Scout from our Den decided to sit in the peanut-free zone at school eating a Butterfinger bar. When Morgan couldn’t get the child to move, he went to the principal to help him. The boy was promptly removed from the table and his father was called. The principal also called us immediately to let us know what transpired at school and that the boy had been suspended from school for a day. Since my husband knew this father very well through Cub Scouts, he called him to discuss the situation. The father was irate that Bob would call, and then this Dad decided to come over to our house to yell some more and state that his son would never do what he was accused of. Thankfully, Bob is a patient man and just let this Dad vent before saying that he didn’t appreciate what his son had done and Bob realized this Dad was in complete denial that his son had done anything wrong! Thankfully this never occurred again.

During all these issues, I continued to work with my school and school district to further education and awareness of food allergies. Once Morgan was in 4th grade, the school district added food allergy awareness training to its accreditation model; in 5th grade, Colorado passed a law allowing him to self-carry his EpiPen and the school district started a Food Allergy Task Force to create guidelines to keep children with severe food allergies safe in school. I focused all of my energies on these activities, and kept the school staff focused on my son’s safety. These parents got to throw tantrums and nasty words around, but fewer and fewer people listened to them. Their bark (and their bite!) didn’t arouse any sympathy as more and more children with food allergies came into classrooms.

We have lived in our home for almost 19 years and Morgan has gone to kindergarten on to high school with the same group of kids. We refused to move away or pull him out of school. Instead, we worked within the system which certainly wasn’t easy every day! He’s friends with all the kids whose parents gave us such a hard time, and at least one of the boys is in several classes with Morgan this year. No longer do the parents say anything to me about allergen-free classrooms or allergen-free zones. As my husband says, “Time heals all wounds, and wounds all heels!”

Interview with Disney Star, Kenton Duty, about Managing Food Allergies

Born and raised in Plano, Texas, Kenton discovered his love for acting in the fourth grade when he landed supporting roles in the Dallas Theater Center’s rendition of A Christmas Carole.  It was such an amazing experience for Kenton! He loved being on stage and got great joy from entertaining the audience.  The show did thirty-five performances between Thanksgiving and Christmas Eve, and Kenton relished every single one.  He followed that with a lead role in the production of Ragtime.  The production was seen through the eyes of his character!  The following year, Kenton was asked by his agent in Los Angeles to give California a try.

Kenton Duty can currently be seen as one of the stars on Disney Channel’s hit series “Shake It Up” as the hilarious character of “Gunther.”  Most recently, Kenton wrapped production in a lead role in the indie film Contest (2013). The movie is a story about standing up to bullying.  Kenton is also writing and recording a song for the movie.

Kenton, thank you for ‘speaking’ with me at AllergicChild.com. Can you please tell us how old you are and what food allergies you manage?

I am 17 years old.  I have a chocolate allergy and a wheat allergy.  I outgrew my dairy allergy when I was younger.

Have you ever experienced anaphylaxis or been to the ER with an allergic reaction?

I have never been to the ER or experienced anaphylaxis due to my food allergies.  I have had to go to the doctor several times.

Do you carry an EpiPen? How do you carry it?

I carry an EpiPen with me at all times.  I carry it in my backpack.  It is extremely important to have it with you at all times.  You do not know when you might need it.  I really like to think that it is just another item I carry around like my phone, iPad, sunglasses, etc!

With all your traveling, how do you manage your food allergies to stay safe?

I do several things to make eating a safe, but enjoyable time.  I pack or ship my food to the various locations.  I also bring my food on airplanes.  At some restaurants, it is easy to ask them to prepare my sandwich on the bread I brought in versus their bread.  I definitely explain to restaurants what my allergies are.

What is done for you at Disney and on movie sets to keep you safe?

I have explained to Eric (our on set caterer) what my allergies are, and he is amazing!  He is so thoughtful and encouraging.  He ensures I have healthy food choices to eat every day.  I also supply him with bread and bagels that are gluten free, so he does not have to worry about that.   The producers on the show and movie sets are very supportive too.  It is nice they accommodate my diet.  On the movie set I am currently working on, there has not been one meal where I have not had an option for food!  THANKS guys!!  (I am also a pescatarian, so I do not eat meat other than fish.)

I saw in a recent FAAN newsletter that you went to Capitol Hill to encourage the US Congress to support the School Access to Emergency Epinephrine Act. Can you tell us about this? What was the best part of this experience?

Oh my goodness!  It was amazing.  To be there with FAAN was so much of an honor.  I enjoyed every second of the day having the opportunity to speak with congressmen and senators about how important it is to pass this legislation.  I believe in the Act 200%, and I wanted to convey my thoughts as someone who carries an epinephrine auto injector, is a student in school, and can relate to the situations where an auto injector may not be available at the critical time in which it is needed.  The individuals we were able to meet with were very nice, and I walked away hoping they were a little more enlightened by our meetings.

Do you have any advice for younger kids who manage food allergies?

I know that you can possibly be bullied or made fun of because of your allergies.  I have definitely experienced those things.  I like to encourage kids to not feel weird or different because you have allergies.  It is hard, but if someone is not being nice or bullying you, let your parents or teachers know.  You do not want to let it get out of hand.  One of the lessons we are hoping kids learn in the movie I am currently filming, “Contest”, is that they can stand up to bullies.

I also encourage kids to not eat anything their parents have not let them know is safe.  Whoever cooked the item may have used different ingredients than what you are used to having in the product.  So, always check with your parents!

I definitely want to encourage kids to carry their epinephrine auto injectors with them.  It is just another thing to have in your backpack!  And, it will save your live.

Anything else you’d like to add?

I appreciate you asking me to share in your newsletter.  Your newsletter is very informative and educational.  The more aware of food allergies we can make society, the more safe it will be for those of us living with food allergies!!

Thanks Kenton!

 
 Kenton & Morgan at the 2011 FAAN Teen Summit

Managing Food Allergy Bullies – An Interview with Kristen Kauke, Social Worker

Kristen Kauke is a Licensed Clinical Social Worker who practices in IL.  She was diagnosed with food allergies as an adult and is the mother of two sons with anaphylaxis to peanuts, egg, milk and soy.  She is a regular presenter at Food Allergy & Anaphylaxis Network conferences across the country, and helps individuals cope with anxiety due to severe food allergies.

Kristen, there is such an emotional piece to food allergies. What situations of bullying do you hear children with food allergies share with you?

First, I think it’s important to differentiate between teasing, or “busting chops,” and bullying.  Teasing/busting chops happens frequently, especially among boys.  This is the condescending verbal banter that is a common way boys socialize, even among friends.  Examples might include sarcastic comments such as , “Your food looks sweet.”  Or put downs like “Why can’t you eat anything normal?  It’s like you’re allergic to everything!”  While these types of comments can sting, they aren’t necessarily bullying.

Bullying is the repetition of negative actions on the part of one or more persons against another who has difficulty defending themselves.  Bullying may be perpetrated in the following forms:  physical, verbal, social exclusion, false rumors, threats, or cyberbullying (texting, social media).  When it comes to food allergies, research tells us that most bullying episodes are in the form of verbal taunting.  This might sound like, “I wish you would die.  If I had a peanut right now, I’d throw it at you.”  Physical examples of bullying related to food allergies have included waving, throwing, or touching the victim or their “safe food” with the food allergen.

What can you offer to parents who find out their child has been bullied about food allergies?

First and foremost, parents can LISTEN to their child when they report bullying.  Thank them for sharing and acknowledge the difficulty of sharing such an emotional situation.  Second, acknowledge their feelings and experience.  This might sound like, “I imagine that felt terrible.  I can see how you would feel angry and sad.”  Finally, advise your child to react in the moment vs. later.

As a parent, we want to help our children become stronger and stand up to the bully. What is the best thing and the worst thing for parents to do?

The best thing parents can do to teach their child to react in the moment of verbal bullying is to teach and role play assertive language.  One simple, yet powerful framework is the “I message.”  I feel ____ because ____ and I need.  For example, “I feel mad and unsafe when you wave around peanuts and I need to you take my allergy seriously.”  Take turns acting out potential situations so your child gains comfort and understanding of speaking assertively in appropriate situations.

When it comes to physical bullying, the best thing parents can do is help their child report physical instances of bullying to the adult in charge, such as the school principal.  Parents are wise to keep records of incidents reported and outcome (or lack thereof).  Parents could welcome the idea of change of classroom when applicable.  They can also use the situation to help their child keep perspective on the powerful impact of our words and actions on others (i.e. siblings).  Finally, parents can keep in mind that children can be resilient even in painful situations.  When children learn to seek and accept help, they gain personal power.

Parents want to avoid addressing the parent of the offending child directly, or advising their child to try to make friends with the bully.  “Winning over” the other almost never works.

How about the child – what’s the best thing for he/she to do in the middle of being bullied? And afterward?

When it comes to teasing or “busting chops,”  a child can “tease the tease.”  For example, in response to the previous tease of “Why can’t you eat anything normal?  It’s like you’re allergic to everything,” a child might respond, “I know, right?!  Grrr food allergies.”

When it comes to verbal bullying however, a child should consider the following:  keep a low profile;  avoid the bully;  buddy up, especially in places that are less supervised such as the playground as bullies tend to prey on victims when they are alone and unprotected;  and hang with positive people – find places to belong.  When bullied, it is important for the child to NOT provoke the bully in the following ways:  tease the tease, make fun of the bully, or tattle on the bully for minor offenses, as these might just make the bully more aggressive and seek retaliation.

Regarding physical bullying, a child should always seek help from an adult.  For example, if there is a threat of physical harm or actual injury due to pinching, hitting, kicking, the child should report this to their parent, teacher, principal – anyone in charge who can take charge.

Whether the bullying is verbal or physical, block bullies from social media.

When should a parent seek professional help for their child? Are there certain behaviors to watch for?

Signs that a child’s stress due to bullying has overwhelmed their coping abilities would include:  decline in grades, difficulty falling asleep or sleeping too much, avoidance of friends, loss of interest in former hobbies or lack of participation in activities, irritability, frequent physical complaints (tummy aches, headaches), and a significant change in mood that last longer than 2 weeks.  When a child demonstrates hindered coping, counseling should be considered to support their recovery.

As a parent, I’ve experienced being bullied by other parents in my son’s elementary school who didn’t understand food allergies. It’s very difficult to stand up to another parent, especially when I thought that some of these women were my friends. What can you offer to parents who are being bullied?

Parents can use the same coping techniques for both verbal and physical bullying as noted for the kids.

Such situations cause us grief – there is a loss of friendship and support we thought we could count on.  We experience disbelief, sadness, even anger.  However, in the face of such challenges, sometimes avoidance of the offending parent is the best option vs. continued pressure.  Sadly, sometimes a person just is not interested in the truth.  We need to realistically gauge the situation.  If our conversations and attempts to educate are going nowhere, we are wise to stop and wait it out.

It is said that we are only able to hear what we are ready to take in.  There is nothing we can do to speed this along for others.

Should a parent deal directly with the other parent? Should a school administrator or some other professional get involved? Or should the other parent’s behavior just be ignored?

In my opinion, it is best for parents to deal with school officials regarding instances that concern the health and safety of their child.  Parents should report instances of verbal or physical bullying.  They might consider giving their child’s teacher a “heads up” regarding teasing.

Parents can also know they can control other factors of their child’s environment:  they can avoid situations that tend to result in bullying episodes, they can choose to change teams, request that their teacher limit contact between kids, etc.

Is there anything else you’d like to add?

I think it is helpful to remember that sometimes other’s resistance or anger is more about their own insecurities and fear of change.

We need to put the focus on regulating our own emotions vs. going to war.  We can put our energy into creating conversations with others who ARE open to education and awareness.  We can put our energy into supporting policy that brings more safety for our food allergic kids.  We might explore bringing screenings of bullying documentaries to our school districts/communities.  Some fantastic documentaries include, “Finding Kind” and “Bully.”

For our children, we can seek places for them to feel a sense of belonging – the park district, youth groups, community theater, volunteering, food allergy groups.

Thank you Kristen!

 

Food Allergy, Asthma & Evacuation from Your Home

We have had the opportunity to learn about this subject first hand recently in June 2012. The Waldo Canyon fire in Colorado Springs has been a devastating experience for us but provided experience that we thought would be valuable to everyone managing food allergies and/or asthma when you have to evacuate your home.

On Saturday, June 23, the fire began in a mountainous area near Colorado Springs in a canyon named Waldo Canyon. This is a hiking destination with beautiful views and an abundance of trees. Because of the extremely low precipitation we have received for the last 2 years – only 19% of normal – one cigarette dropped could have caused this entire situation. We also had experienced 100+ degree temperatures which is very unusual for Colorado, especially at this time of year.

Day 1 – the Fire Starts

We live in an area northwest of Colorado Springs in Rockrimmon, which is in the foothills of the Rocky Mountains at 6500 feet above sea level. This pictures shows the smoke from the fire viewed from our home within two hours of the fire being reported.

We immediately turned on the local news which was already beginning to announce voluntary evacuation notices.

We sat down and created a list of what we wanted to take from our home. The news reminded us of the 5 P’s: People, Pets, Papers, Prescriptions and Photos. They were suggesting bringing 3 days worth of items, but we planned on bringing ALL of our prescriptions since we had no idea whether or not our evacuation would last only 3 days or 3 weeks.

At one point, we received information from the local TV news that we were on voluntary evacuation. That’s when we began packing clothes and checking off items from our list. We decided that we would go to my husband’s office if we were evacuated. We couldn’t go to one of the local evacuation centers because of the inability to cook our own food not to mention the potential for coming into contact with Morgan’s allergens: peanuts, tree nuts, sesame, fish, shellfish & pets. And at that time on Saturday, my mother was out of town and we weren’t able to reach her to see if we could go to her house. We also took photos of all of the rooms in our house to include all of our household items. We just had an insurance review with our agent, so we knew our insurance was in good shape. We have “loss of use” in our policy which would allow us to go to a hotel if we were mandatorily evacuated and therefore didn’t have use of our home. We kept this in mind too since a hotel would allow us to be in air conditioning which would also help our son, Morgan, and his asthma.

The voluntary evacuation notice went to a mandatory evacuation reported on the local news and we really jumped into action. Within 10 minutes, the news said they had made a mistake and in fact we weren’t in the evacuation area. We heaved a sigh of relief but continued to watch the news carefully knowing that this fire had already burned 150 acres in just a few hours.

Day 2 – Smoke Haze

We awoke with more smoke in the air and concern for Morgan and his asthma. He kept his inhaler within an arm’s reach, and we insured that his Pulmicort was full. The fires didn’t really impact us that day in terms of growing in our direction, yet we decided to keep our bags packed just in case things changed. We confirmed with my mother that we could evacuate to her house should that become necessary. She lived nowhere near us, so that ensured we wouldn’t have to move again with the growth of the fire.

Day 3 – Complacency

We began to be complacent in our thinking that the fire wasn’t going to get near us. We continued to watch it grow on the news update maps, adding another thousand acres to become a three-headed monster. The picture opportunities were incredible with the blue sky and the plume of smoke in the air going over Colorado Springs. No additional evacuations were given and we went to bed feeling pretty good about the firefighters’ ability to fight this fire. There were smoke jumpers who parachuted into the steep terrain of the Rocky Mountains to sleep near the fire and keep watch on it.

Day 4 – Evacuation

Once again we awoke to a layer of smoke blanketing Colorado Springs. Air quality was abysmal. Morgan stayed inside our air conditioned house enjoying it since once again we were forecast to have 100+ degree temperatures. We could see the fire continue to expand during the day over the front range of the Rocky Mountains. From the city of Colorado Springs, it was apparent that more was burning, but the fire command leaders were assuring us during press conferences that they were aware of the possibility of high winds and had fire lines in place in addition to 1200 firefighters on the front lines. They nor we had any idea what was coming!

Colorado is renowned for dry thunderstorms, and one such storm began in the afternoon with winds whipping in multiple different directions, lightening striking but no rain.

At 4pm, Morgan was home alone watching ash fall from the sky and called both Bob and I to say we better get home soon. The winds were 65 miles per hour and the unbelievable firestorm was raising the temperature near our home by another 10 degrees versus surrounding areas not affected by the fire. We weren’t in the pre-evacuation zone nor the voluntary evacuation area (the level up from pre-evacuation but not yet in the mandatory evacuation zone), but things were changing so quickly that Morgan began to pack in earnest.

Photo Courtesy Unknown

We are on the reverse 911 call list of our local Sheriff’s Office and knew that we would receive the call to leave if we became part of the mandatory evacuation area. My husband got home first after being one of the last people to get gas at the local station. The traffic was horrendous as neighborhoods to the west of us were put on mandatory evacuation. The fire was roaring down the mountain shooting embers 1/2 mile ahead of the main fire creating more spot fires. We later learned that 65% of these embers started new fires. The fire was moving at more than 20 miles per hour. People were panicking because the fire was so close to us and they saw live embers starting small fires in the neighborhood. Some families had only minutes to pack up and get out of the way of the fire.

We received the mandatory evacuation call to our home and cell telephone numbers at 6:30 pm and a text to our cell phones to evacuate immediately. I was just walking in the door having been caught in traffic trying to get back into the neighborhood. We were never on pre-evacuation orders nor on a voluntary evacuation list. We went immediately to a mandatory evacuation.

We packed in expectation that we may never see our home again. My husband turned on the hose with a sprinkler to water the deck. We had heard on the TV that firefighters were turning off the gas and electricity in neighborhoods that were evacuated so we decided to pack up all the food that we could carry in coolers. We figured nothing would be salvageable in the heat without refrigeration for days.

Photo Courtesy Unknown

The smoke cloud was black and so densely thick that we put on breathing masks to protect our lungs while we began to pack the car.  Ash was falling like snow, yet some pieces were the size of my palm. That’s a very difficult assignment to pack the right items when the brain and body are in shock.

We left our house within the hour waiting for some of the traffic to clear and thankful that we weren’t seeing any live embers near our home. The fire had exploded in ways that the experts with over 30 years of experience in Level I firefighting, had never seen before.

Photo Courtesy of The Denver Post

We drove the back route to my mother’s house and looked up at the mountains on fire. This was truly the equivalent of 9/11 for Colorado Springs. Never had I seen such destruction of our beautiful scenery. Watching tendrils of the fire snaking down the mountain I found myself sobbing. I was so grateful that we got out safely, and also so sad that what was left would never look the same in my lifetime.

The news conference later that evening was sobering. The mountains were on fire the likes of which no one in Colorado Springs had ever seen before. It was the worst natural disaster we had ever experienced. Our local neighborhoods were burning and in order to keep the firefighters safe, they were pulled out until their safety could be ensured. The scenes on the TV were surreal. We continued to watch the news coverage into the night at my mother’s house, grateful that we got out safe, and in fact 22,000 people were evacuated within a few hours with no accidents or injuries. That was nothing short of a miracle!

Day 5 – Shock and Evacuee Status

We awoke having barely slept with the adrenaline rush from the night before. My mother’s small 2 bedroom townhome was not air conditioned, and between the heat, the smoke and the shock of the previous day’s events we were exhausted. The reality of our situation was hitting us.

My husband had to go to work in Denver despite everything we had been through the previous day. He was pulled aside by some of his colleagues and told that he smelled like a campfire! We were so accustomed to smelling smoke, we didn’t even realize that our cars, clothing and suitcases were all smoke ridden.

We were going to have to figure out how to keep Morgan’s asthma from flaring since he was no longer in air conditioning full time. By the time we were evacuated all of the hotel rooms in Colorado Springs were booked since 10,000 people had already left their homes before our evacuation notice. And because of Morgan’s food allergies, we needed an extended stay type of arrangement so that we could cook, and this too wasn’t available. With the lack of air conditioning, we wanted to open the windows, but the smoke prohibited that. Morgan remained inside with the windows shut and his inhaler within an arm’s reach. We were too exhausted to go anywhere else.

Smoke covered the city making it smell like a campfire and ash was on our cars even though we were 4 miles from our home. We were now in a group called “evacuee.” It’s a group in which I never wanted to be a member. Yet we were offered showers at the local YMCA or a shampoo and blow dry at local hair salons.

We were told on the local TV stations that the unified command center of the fire would provide representatives in a press conference daily at 8 am and 4 pm. Updates as to the progress of the fire and plans for the day of firefighting would be delineated in addition to information about evacuations. We could watch this press conference on local TV stations. We continued to monitor local TV stations updates on their Facebook pages and watching the Twitter feed for #waldocanyonfire in addition to having the TV on constantly.

We began to learn new firefighting terms such as pyrocumulus clouds, spot fires and containment. Planes continued to fly overhead dropping slurry and water trying to stop the spread of the fire. The number of firefighters ballooned to 1500, coming from across the state and the nation, with the fire becoming the number one priority in the nation. The firefighters, we learned later, pulled 48 hour shifts sleeping for only 3 hours on the pavement in order to save homes in and near our neighborhood.

The 8 am press conference showed horrific progress of the fire on June 26, 2012 – Day 4 in my blog.

The fire had tripled in size to 15,000 acres in one horrific day with only 5% containment. The evacuees numbered 32,500.

From looking at the map we didn’t believe the fire reached our neighborhood. We continued to text, email and call neighbors and friends to ensure their safety. A neighbor told us that as he evacuated he saw a spot fire beginning in a park 1/2 mile from our home. That kept us cautious to hope too much.

While our situation with food allergies and asthma was difficult to manage, we knew of other families with far more onerous circumstances. The 25 year old daughter of one family friend had been hospitalized since March with a traumatic brain injury suffered while skiing. Our friends evacuated their home to go sleep in her hospital room so that at least their family could be together in this difficult time.

Day 6 – Asthma Flare

Morgan awoke with a horribly tight chest and his asthma flaring badly. We had kept the townhouse closed up during the night to keep the smoke out, but the heat in. His rescue inhaler wasn’t providing enough relief. In our quick exit from our house, we neglected to bring his nebulizer which he had needed only once in the previous 14 years.

I called our allergist as soon as her office opened and got an appointment. Morgan was put on oral Prednisone, Symbicort and Albuterol via nebulizer. Our doctor suggested that he needed to be in air conditioning to help his asthma calm down.

I called our insurance company to explain what was occurring and to see how they could help. Given that we were in a mandatory evacuation area under civil authority we were allowed to receive “Loss of Use” compensation for the inability to be in our home. This coverage would have paid for us to be in a hotel if we had the ability to find one and would have paid for meals if we could have eaten out. In our case, the coverage was going to purchase us a room air conditioner!

We learned in the daily news conference that at least 346 homes had burned and an untold number were damaged. The destruction was mind boggling. And this estimate was likely to go higher as people got access to their neighborhood to survey smoke and water damage to the interior of their home.

Photo Courtesy Gazette.com

City officials posted online a list of 34 streets that had burned homes. These homeowners were asked to attend a community meeting to find out the extent of the damage to their home from a street view. Thankfully, our street wasn’t on the list, but many of our friends’ homes were.

The fire was still increasing in size – up to 16,500 acres now but was 15% contained. We watched small fires burning in the hills above the church where Morgan’s Boy Scout Troop meets. We talked about how just a week ago if we would have seen smoke there we would have been so concerned. Today the conversation was more about relief that there were only a few fires burning that appeared to be small.

Some homeowners in evacuation areas to the east of us were allowed to go home at 8 pm. Traffic jams occurred with people wanting to get back home by 8:01! These areas were still on pre-evacuation notice meaning that they needed to be prepared to leave again should the fire flare up. Our street wasn’t on this list either. With estimates from officials that the fire won’t be fully contained until July 16th, being home with the idea that we should be ready to evacuate again didn’t sound great, but it’s always nice to be home!

Day 7 – Recovery

Thankfully all of our actions the previous day helped Morgan to awaken with his asthma doing better and under control. The cooler indoor air along with getting stronger meds on board helped, but most of all the smoke haze had decreased somewhat.

The recovery process was just beginning for people who found out their homes were gone or damaged. We continued to learn about friends whose homes were burned. Other friends whose homes are located in the most severe burn areas are suffering what seems to be survivor’s guilt. Like a tornado, one home was burned to the ground and the home next to it was untouched.

In addition to that,  many friends couldn’t access their home because smoldering fires in the adjacent burned properties continue to burn. Then, to add more insult, gas lines to surviving homes will probably take months to check and repair from the heat damage of the fires.

By the end of the day, at 8 pm, we were allowed to go back home. I can’t tell you how wonderful it felt to drive up our street and see our neighborhood green and untouched by the fire! Neighbors were calling out “Welcome Home” shouting through the dark to each other.  Our home was unscathed by the fire, and thankfully no one looted the home while we were gone – a sad occurrence for some of our neighbors.

The garage smelled like smoke, but we had inadvertently left on the air conditioning which filtered all the smokey air leaving barely a trace of smoke inside.  A fine layer of ash was downstairs in the room closest to the garage, but the rest of the house had hardly any. Our Andersen Windows were worth the investment 10 times over!

The Waldo Canyon Fire was the worst fire in Colorado history, “a firestorm of epic proportions.” In the 40+ years of living on the front range of the Rocky Mountains, we had never been evacuated from our home. Colorado doesn’t have hurricanes or earthquakes, and our area never has tornadoes. We’ve only been affected by fires from a distance when the smoke came into our air. We really weren’t prepared for what befell us.

Now that we’ve had the experience of evacuation, we’d like to share some tips should you ever have to be evacuated with a child with food allergies and/or asthma.

Remember to bring the 5 P’s: People, Pets, Photos, Prescriptions and Papers.  As I wrote above, we took all of our prescriptions, not just a few day’s worth. Some of these prescriptions are very expensive, and we didn’t want to lose this investment! We also grabbed Morgan’s 504 Plan paperwork file and his Allergy Testing history file.  Sure these could be recreated, but what a lot of work that would have been! If your child’s asthma care plan isn’t committed to memory, you might also want to bring that with you.

Have a written list of evacuation items in addition to the 5 P’s. Have everything written on a list of what you would bring should you need to be evacuated. It’s so difficult to think of everything you need to bring in the middle  of a crisis.

Plan for your relocation. Know where you can go and what type of an arrangement you will need. Can you go to a shelter and have your child safely eat their food? Are you comfortable eating out every meal by going to a hotel? If not, what types of condos or extended stay hotels are in your area? Or within 100 miles of your area?

Bring Food with you. If you have ordered special food online, you certainly want to bring it with     you because you likely won’t be able to have it mailed to you in time wherever you are staying. Even businesses, like specific grocery stores, can be in an evacuation zone. So if you get food from just certain stores, keep some on hand at all times.

Be prepared to be gone for more than 72 hours. The officials told everyone here to pack enough clothes and supplies for 72 hours. Obviously those with burned homes won’t be back in a rebuilt home for probably a year or more. And others in the neighborhood won’t be allowed back in for months because of the gas lines needing repairs. Many of them only packed for 72 hours and have had to get clothing, prescriptions and other supplies while they wait to be able to go home.

Bring your nebulizer and peak flow meter even if they haven’t been needed recently. We learned this one the hard way! It would have been much easier to have had these items with us than to have to race off to the doctor’s office. Lesson learned!

Overall, we are so thankful for everyone’s concern during this harrowing time in our city’s history. It’s an event that we will remember for our lifetime. Thank you to so many of you who donated allergy safe food and money to our local Care & Share food bank which has received over one million pounds of food since the start of the fire. We are especially thankful for the firefighter’s resolve to run toward the flames and save so many homes, including our own!

Emotional Aspects of Food Allergies on Marriage

Food allergies comprise much more than just a physical component. The emotional aspects of managing a child’s food allergies challenge even the best of marriages. In this ongoing series about the Emotional Aspects of Food Allergies, this month’s article focuses on the difficulties and the joys of managing your child’s food allergies while supporting your marriage. My husband, Bob, will offer his experience, along with myself and how food allergies have given us opportunities in our marriage to support each other and our son.

Nicole: When our son, Morgan, was 18 months old and diagnosed with multiple food allergies I was a stay-at-home Mom with a 6 year old daughter in first grade. I walked out of the allergist’s office scared and confused and tried to explain to my husband everything that was shared with me about reading ingredient labels, administrating the EpiPen Jr. and purchasing a MedicAlert bracelet. I became the teacher and he became the student. The Internet in 1997 wasn’t populated with the information about food allergies the way it is now, and I’m sure I didn’t get all the information accurate because I was so shocked and saddened by Morgan’s diagnosis. I became the vicious mother bear looking out for my cub against all enemies, and woefully my husband was sometimes viewed as one of those opponents. I monitored what food allergens my husband ate and how well he cleaned up afterward. I used shocking statements like “He could die!” in order to really push the point. I hadn’t learned that my husband and I could unite with the purpose of finding a way to manage Morgan’s food allergies in our household.

Bob: When we first discovered Morgan’s food allergies, my wife was extremely protective, overly so as if I would risk Morgan’s life. I did not fully understand the entire breadth of what a food allergy was, because we were both learning.  Over time I learned how to properly read ingredient labels, I learned about cross contamination, cleaning plates and being very careful with food. I fully understood the ramifications however I am not sure my wife understood that “I got it”. She was amazing however, in getting the right information and I really would listen.  I even searched the Internet on my own to learn more. Regardless, I felt left out at a certain level because it always seemed she always knew more about food allergies than I did and somehow, anything I did was never good enough. That caused some emotional distance and upset.  It never deterred me however, from insuring Morgan stayed safe when we were together in Boy Scouts or on a “Guy” trip, or even camping in the high Rockies. I knew what he could eat and I knew how and when to use the EpiPen. While traveling I knew exactly what to ask restaurants…and when to leave and not take any chances. Over time, Nicole and I have become a united front and we share ideas together as to what works for us.

Nicole: As Morgan aged, I found that I was very apprehensive to let him experience “normal boy” activities. I was overly protective, and Bob and I would have disagreements as to what was safe for Morgan to attend. Birthday parties, sleepovers, Boy Scouts and camping trips consumed our conversations. It was so important to find a balance between being cavalier (making assumptions that everything would be fine) and being unwilling to allow Morgan to attend out of fear.

It was necessary to become prepared by finding out what food would be served, who would be trained on the EpiPen, and how to manage food allergies by a campfire! One teenage boy at the last FAAN Teen Summit said something like, “If I listened to my Dad, I’d be dead today. That’s why I always listen to my Mom.” I want to present a united front about food allergies to Morgan, and it requires that both Bob and I be educated and able to take care of him – in preparation for activities and in case of emergency.

Bob:  I take our kids camping a lot. My wife, Nicole considers camping a Hyatt Regency without room service. So with that being said, I am the parent that does all the outdoor, high adventure fun! On camping trips, we always bring at least 2 EpiPens and Benadryl as a precautionary measure. Six years ago, we were camping near Lake City, CO at about 11,000 feet, when after a full day of fishing, I showed the kids how to cook trout the right way over a campfire. Upon taking a bite of the trout Morgan started to daze off with a glassy eyed look, my daughter Michaela got the Benadryl but to no avail as to any change.  Morgan was starting a severe allergic reaction and complained about having trouble breathing,  even though I knew he had tested negative for fish at the allergist’s office. I knew something was severely wrong as he was quiet so I took his EpiPen and punched it in his upper right thigh…after a yell or two, he then threw up the fish and I got him into the Landcruiser with his sister in the back with him. We raced down a very steep and long 4 wheel drive trail to the Lake City, Colorado Hospital. Thankfully he was fine after the one EpiPen, and we continued our camping for the rest of the week.

My adrenaline was pumping through the whole thing and I managed it as if I had been doing this every day.  I did not lose it till later; realizing just how close having a child with severe food allergies is to death.  Knowing I had the training with the EpiPen, the knowledge it might need to be administered again, and being an avid outdoorsman trained in first aid, I know all helped to keep Morgan safe and alive. We found out through a subsequent allergy test that Morgan is allergic to fish! Needless to say, we found lots of other things to do other than fishing when we go camping.

I’m so grateful that I learned the details about food allergies and what to do to keep Morgan safe in daily activities and also in case of an emergency. Both my wife and I are educated about food allergies; however in many families I have learned, if I just relied on her to take care of things, this situation could have been disastrous.

Nicole: I was home when I received Bob’s call from the Lake City hospital telling me all that transpired. It was really difficult for me to allow them to continue camping, but after talking with Morgan who told me, “I’m fine and I want to stay camping,” I knew there was no other choice but to trust Bob to watch for a biphasic reaction – which thankfully never occurred. Bob did stay up most of the night watching for that reaction after administering Prednisone to Morgan. What a Dad!

When Morgan was 14 years old, he went to the Boy Scout National Jamboree with 42,000 other Boy Scouts in Virginia. Once again, I was challenged to let go and allow him to experience high adventure fun! I’ve learned to view these types of opportunities with an attitude of “how can Morgan participate in this activity?” instead of an immediate “No, you can’t go!” I learned to do that from my husband, who has that positive attitude. Sometimes it is exhausting in trying to control all the aspects of a child’s life to ensure safety with food allergies. And out of that exhaustion I am more apt to decline opportunities. That’s where it’s great to have a spouse who is willing to take on an adventure like this. Bob was willing to travel out to Virginia and rent a hotel with a small kitchen. He shopped and then prepared all of Morgan’s food for the 10 days of the Jamboree. Bob also got to participate in the Jamboree as an adult Scoutmaster, which was a great experience too. Morgan had the time of his life at this event, which made all the work worthwhile!

Had I not learned how to let go and trust my husband, Morgan would have never had this opportunity.

Bob:  As Nicole mentioned earlier, my son Morgan and I attended the 2010 National Boy Scout Jamboree at Fort AP Hill, in Virginia. Before going, I was in contact with the Food Director of the event and we discuss various issues that may arise. He had assured me that I would be able to store safe food for Morgan in their central refrigerator unit they use for the Jamboree adult leadership. He also conveyed to me that all I had to do was call him upon my arrival at Fort AP Hill, in Virginia. I researched for a Condo-hotel that had a full kitchen as I knew I was going to cook Morgan meals for 10 days. I also knew I needed a way to protect the cooked food from cross contamination, knowing it would be stored with others, and to mark it with his name and unit number. I made a complete menu before I left which included breakfast, lunch, dinner and snacks.  Upon my arrival in Virginia, I purchased all the food, Ziploc bags with a white label to mark his name and unit number, ice and purchased a large 30 gallon cooler with wheels, knowing it would take me an hour’s drive to the Jamboree event and an hour to the central refrigeration area. It was 90 degrees outside. I labeled all the bags with a permanent marker, and froze what I knew were his dinners and breakfast. I packed 5 days worth of meals which is all that would fit in a 30 gallon cooler with ice, and took off to the Jamboree.

Imagine my surprise when I arrived at the central refrigeration area and they told me, they had no idea what I was talking about. I was told I could not use their facility as it was against Virginia health laws to place outside food in their facility from a non-certified vendor. I tried to keep my cool, explaining the issues once again that Morgan had to eat safe food and he was arriving tomorrow and was scheduled to be there for 10 days. I was rebuffed once more, this time by the director of food services, with an apology.

Not one to give up easy, I went to the Scoutmasters’ area and explained the situation, and once again was told I needed approval from the Food Director. Imagine the panic I felt, knowing Morgan had to eat safe food, and I had no way to provide him with such. I was preparing to buy a refrigerator. I then called Jamboree Headquarters and ask to speak with the event quarter master, and discovered they had special refrigerator units at each of the campsites that held 3 days of food for 2,000 people. I took off to the campsite that Morgan would be at, and found these huge military walk in refrigerator units in the middle of the woods. I unloaded his first 5 days of food into the unit. As a Scoutmaster, I made friends with the on-site camp quartermaster and explained Morgan’s food allergies in detail and why this was important. I also explained to him that Morgan would know what he was eating and gave the quartermaster a copy of his menus. I also shared with him about Morgan’s scouting achievements. He was very interested in helping.

Even with a 90 degree temperature and 90 percent humidity, I was beyond relief.  I sat down on an old tree stump at the camp and was emotionally spent, but knowing now in my heart that Morgan would be safe and would now be able to have the time of his life, made all the difference in the world. Also knowing I would not give up with a couple of “No’s” along with dealing with a few stubborn people, told me any father dealing with food allergies may face the very same situations and they too need to stand up for the well being of their child. The only way we can do this is to really take the time to understand food allergies and how it impacts our kids, our wife and ourselves. With this knowledge you too will know what to do in any situation and more importantly, why!

Nicole: We talked as a family what it would take for Morgan to attend the Jamboree safely, and what kind of financial commitments we were willing to take on for Bob to attend also to ensure Morgan’s safety. There can be a lot of financial stresses on a marriage with food allergies! And not just the cost of medication and doctor appointments – it’s also the cost of a parent attending events such as this to ensure safety.

It certainly would have caused a lot of embarrassment if I, as Mom, had been the one carting in the food for Morgan. It was okay that it was Dad, and in fact, Bob made so many good looking and tasting meals that other boys lined up to eat any leftovers Morgan had! I was so grateful that in the middle of all the turmoil that Bob was able to resolve any issue that came forward.

We’ve found that it’s really important for parents to present a united front when it comes to any issue – and not just those surrounding food allergies. I’ve had to give up a little of my over-active worrying; and Bob has taken on many of the responsibilities of ensuring safety for Morgan to be able to participate in “normal boy” activities. Together our marriage has grown in a united front to provide as much of a normal childhood for Morgan.

Food Allergy, 504 Plans, Title II and K-12 Schools

I recently attended a presentation by a Senior Attorney for the Office of Civil Rights (OCR) in Denver, about Section 504, Title II and Students with Disabilities in Public Schools. This presentation was made to the MOSAIC support group in Denver, Colorado on  May 7, 2012 in regard to 504 Plans in the K-12 school setting. Information in this blog post should not be used to argue a specific issue that you may have with a school, but is provided here for informational purposes only.

The attorney started the talk with 3 rules:

1.            There are rules about this “stuff”
2.            The rules are your friends
3.            Follow the rules

The presentation covered the following two areas: Section 504 of the Rehabilitation Act that was created in 1973, and Title II of the Americans with Disabilities Act (ADA) created in 1990 which are read together. However Section 504 pertains to those institutions receiving Federal funds, while Title II pertains to all public entities.

OCR is part of the US Department of Education and enforces civil rights laws prohibiting discrimination in education programs on the basis of: race, color, national origin, sex, disability, and age. Religion is not a category. OCR is headquartered in Washington, DC and includes 12 regional offices across the US including the Denver office where the presenting attorney works out of.

Which schools are covered by 504 and Title II? Section 504 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance; while Title II prohibits discrimination against people with disabilities by public schools (including public vocational schools and public charter schools).

OCR enforces compliance to Section 504, but rewards no damages. Section 504 is a civil rights statute and there is no funding for 504 Students. OCR has a database of recipients (schools) of federal funds.

Individuals with Disabilities Education Act (IDEA) is different. Many students are served under another federal law known as IDEA. OCR doesn’t enforce this. There are 13 specific disabilities covered under IDEA and it is a funding statute and not a civil rights statute. IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services.

What do school districts need to know about 504 and Title II?

Every year, each school district must: Identify and locate students with disabilities in the district who are not receiving a public education and notify parents/guardians of children with disabilities of the district’s duties under Section 504. Location is done from parents, teachers, doctors, Child Find, etc. A school district’s Special Education Coordinator is responsible for IDEA enforcement. A school district’s 504 Coordinator is responsible for 504 enforcement. A school district must have 1) a non discrimination statement, 2) a Section 504 coordinator and 3) a grievance procedure. Who the District 504 coordinator is must be published and that person must be adequately trained in 504 procedures.

A school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability.

What does Free and Appropriate mean?

Free means free!  No charging for costs related to disability, but school/district may charge usual fees paid by all students.

Appropriate means regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met. It is equal opportunity for all students, not equal results. It gives students the opportunity to achieve.

Identification and Evaluation of Students

A school district has the unilateral responsibility to get/obtain information on the student’s disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function. There is no cookie cutter approach. Two children both having food allergies and a 504 plan should not have the exact accommodations in a 504 Plan.

The school district must individually evaluate any child who, because of a disability, needs or is believed to need special education or related services.

When must the evaluation occur? Before the child’s initial placement in a regular or special education program. The evaluation is intended to answer two questions: 1) Does the child have a disability under Section 504/Title II? If so 2) What are the child’s individual education needs?

Regarding Question 1 above: does the student have a physical or mental impairment which substantially limits one or more major life activities? The ADA Amendments Act of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities. Some of these are (but are not limited to):

Caring for oneself
Performing manual tasks
Walking
Seeing
Hearing
Speaking
Breathing
Learning
Working
Eating
Sleeping
Standing
Lifting
Bending
Reading
Concentrating
Thinking Communicating

Major life activities also include operation of “major bodily functions” such as:

Functions of the immune system
Normal cell growth
Digestive
Bowel functions
Bladder
Brain
Circulatory
Endocrine
Reproductive
Neurological
Respiratory

What is an impairment? Any physiological condition that affects a bodily system, or any mental or psychological disorder. A 504 Plan doesn’t have to have anything to do with a learning disability if a child has “just” the disability of food allergies. The question is: Does the student’s impairment substantially limit one or more major life activities? A temporary impairment like a broken arm is not a disability. An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. Conditions lasting more than 6 months need to be carefully considered.

Substantial Limitation does not mean severe restriction or inability in performing major life activity. Look to condition, manner and duration. Must consider the individual without mitigating measures such as an EpiPen or insulin to determine disability. The one exception to this is eyeglasses. There is no vision disability if eyeglasses correct the problem.

IDEA vs. Section 504/Title II

IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services. Under Section 504, a qualified student with a disability is protected regardless of whether the student needs special education.

Regarding Question #2 above: What are the child’s individual education needs?

Needs are identified by looking to a variety of evaluation sources, including: aptitude and achievement tests, teacher recommendations, physical condition, social or cultural background and adaptive behavior. Placement of the child must be by a group of knowledgeable persons knowledgeable of the evaluation data, knowledgeable about the child and knowledgeable about the placement options.

The group should answer the question: what is the child’s need related to the disability? (not to the diagnosis). This group should include the 504 coordinator, parent(s), teacher, school psychologist, etc. There are no unilateral decisions in this area. If a parent disagrees with the group/team’s placement then the parent can go to due process. You don’t have to have an attorney for due process (nor does the school district). Due process has to do with the content of the 504. It is a procedural issue if the school is not following the 504 Plan. It is best to use a school district’s grievance procedure first. A parent has 180 days after the last act of discrimination to file with the OCR.

A 504 Plan doesn’t have to even be written, but it is strongly suggested to do so. If a child has no 504 Plan and “just” a Health Care Plan that outlines the accommodations, a parent should make sure to receive procedural safeguards (which outline what to do in case the plan isn’t followed). If there’s a need for accommodations, then you have to have a plan and it’s best to have it written. Call it whatever you like, (as the attorney said, you can call it Fred (!) or a Health Care Plan or a 504 Plan) and include whatever is agreed upon by the group/team. Does every child with food allergies need a 504 Plan? It depends on if the disability limits a major life activity.

Placement is defined as appropriate educational services designed to meet the student’s individual needs. The Team carefully considers evaluation information from a variety of sources and all significant factors affecting the student’s ability to receive a FAPE. The Team documents all the information considered and does not rely on assumptions regarding persons with disabilities or classes of such persons. It’s about the individual!  Food allergic students should be integrated with other students.

Also discussed was the Court Case: U.S. Education Department Reaches Agreement with Memphis City Schools on Aids, Services for Students with Disabilities OCR does investigate complaints but it can also ensure compliance by completing a review which is what they did in Memphis. They screened all health care plan students to see if they were offered 504 Plans for food allergies. You might want to bring this court case to the attention of your school district.

The 504 Plan should be re-evaluated at least every 3 years or before a significant change in placement.

FAPE – Common Compliance Concerns

1)            Making decisions unilaterally instead of by the Team

2)            Making decisions that are not based on evaluation information or child’s needs

3)            Failing to implement IEP or 504 Plan

4)            Not affording parents procedural safeguards (a system regarding identification, evaluation and educational placement). Procedural safeguards include: notice, records review by parent/guardian, due process-impartial hearing with participation by parent and counsel (if desired) and a review procedure.

The term ‘least restrictive environment’ was discussed in the question/answer session. There is a careful balance of confidentiality between the school’s responsibility to implement the plan and the child’s need for privacy. The child’s disability may be announced to keep the child safe in some cases.

Reasonable accommodations is a concept for post-secondary education and employment places. Section 504 requires that the individual education needs of students with disabilities are met as adequately as the needs of students without disabilities. See Question 14 here.

FAPE is regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met.

For children with food allergies going to college, a transition plan in the last two years of high school is suggested.

 

 

Food Allergy, College & 504 Plans

I recently attended a presentation by a Senior Attorney for the Office of Civil Rights (OCR) in Denver, about protections of Section 504, Title II and Students with Disabilities in Public Schools from the American with Disabilities Act . This presentation was made to the MOSAIC support group in Denver, Colorado on  May 7, 2012 in regard to K-12 education and post secondary education.

This write up pertains only to students with food allergies in COLLEGE.

Sending a child with food allergies off to college is a daunting task and there are many ways to prepare for such; information in this blog post should not be used to argue a specific issue that you may have with a college, but is provided here for informational purposes only.

While it might work for some students with food allergies to deal directly with the college cafeteria staff or college housing office to secure accommodations, this may not be the best route to take in the long run. The college will provide information about the approved accommodations to the teachers and/or the cafeteria staff. The idea is to get a college to view our child’s food allergy as a Section 504/Title II issue and not just a dietary issue to be managed in the cafeteria.

For specific information about students with disabilities transitioning from high school to college, you may want to review:  http://www2.ed.gov/about/offices/list/ocr/transitionguide.html.  And for specific information about auxiliary aids and services at the post-secondary level, see:  http://www2.ed.gov/about/offices/list/ocr/docs/auxaids.html.

A student with food allergies heading to college should begin with the school’s Disability Services Office (or whatever the school calls this service) to find out what medical documentation and/or other documentation will be needed for the child and what accommodations are recommended. It is well to do this long before the freshman school year begins.

Most colleges receive some type of financial assistance through the Department of Education and therefore would be subject to Section 504 regulations (34 CFR part 104, subpart E). Schools that are public entities, for example state colleges and universities, are also subject to Title II of the American with Disabilities Act. (28 CFR part 35). Colleges and universities are not required to provide FAPE (Free Appropriate Public Education), but they are required to provide reasonable accommodations for students with disabilities. Not just academic accommodations, but also modifications and adjustments in the school’s programs when necessary to provide the student with an equal opportunity to enjoy the benefits and services of the schools programs. Cafeteria accommodations can be included, such as ingredient listings of foods and staff training on cross contamination.

OCR expects colleges to engage in an interactive process with students to determine the most effective way for the student to have an equal opportunity of an education. And some colleges will be better at managing this process and helping students manage their disability. That’s why it’s important to start with the Disability Services Office. The approval of adjustments may be in writing. And it would certainly benefit your student to obtain any agreements with the Disabilities Service Office in writing.

The Title II regulation does not require a school that is a public entity to take any action that it can demonstrate would result in the fundamental alteration in a program it provides or in an undue financial or administrative burden. The school has the burden of proving  that compliance with the regulation would constitute such an alteration or adminstrative or financial burden. (Such as a business major student saying they have a disability with math and therefore shouldn’t be required to take any math classes to major in business).

OCR doesn’t express opinions about hypothetical cases, particularly where they do not have all the facts and have not been involved in the interactive process with the student and disability services office to consider all the information available and determine what academic adjustments, if any, would be appropriate.  Generally, OCR does not tell schools which accommodations they must or may provide; they examine the process followed to determine what accommodations are or are not provided and whether they satisfy the requirement to ensure an equal opportunity for the student.  There are some considerations to take into account.  First (assuming there is a qualified* student with a disability), the school would be required not to exclude the student from participation in the any of the school’s programs on the basis of the disability.  Then, the school may not provide services in a manner that limits or has the effect of limiting the participation of the student with the disability.  Of course, accommodations requested and provided must be reasonable.  So, depending on circumstances, it may be unreasonable to expect a school to publish all the ingredients of all foods made available through its food services program.  However, it might be reasonable to expect the school to make a number of foods available and identified as “peanut and tree nut free” or “dairy free” or “free of any seafood product” or something similar.  Again, it would depend very much of the facts of an individual case.

*Qualified individual with a disability means an individual with a disability who, with or without reasonable modifications to rules, policies, or practices . . . meets the essential eligibility requirements for the receipt of services or the participation in programs or activities provided by the public entity.  28 C.F.R. § 35.104.

It was suggested, you may want to take a look at the Title II regulations (applicable to public schools and colleges—can be found on the internet):

28 C.F.R. Part 35, §§  35.130, 35.130(b)(1)(ii and iii), 35.130(d), 35.164.  See 34 CFR 104 subpart E. The principles applicable under the Section 504 regulations are fundamentally the same.

I have observed many students don’t start with the school’s Disability Services Office. They usually start with the dietitian and/or cafeteria staff and then if they have problems they just transfer out of the school.  ALWAYS start with the Disability Services Office.

Lastly, once your child is 18 years old, the school’s Disability Services Office might only speak with your child…not with the parent, to develop a plan of reasonable accommodations in order to comply with the laws ensuring the student’s confidentiality. This is one reason students need to learn to advocate for themselves early in their school career!

 

Food Allergy & the School Lunch

The US Department of Agriculture oversees the national school lunch program and has a guidance document here.  On page 25 of this document, it states “The school has the responsibility to provide a safe, non-allergic meal to the child if it is determined that the condition is disabling.” Setting forth this statement is one thing – the application of it depends upon educated cafeteria staff, accurate ingredient listings of foods and in some cases good luck!

There are many ways to deal with the school lunch. We have opted for Morgan to ALWAYS bring his own lunch. We are very mindful of eating nutritious food, and the school lunches in our school district are based on a different idea of nutrition! Additionally, with Morgan’s multiple food allergies it has always seemed too risky to attempt finding a safe school lunch.

However, we are probably among the minority of even food allergic parents in our school district. Many times I receive questions from food allergic parents wondering how to create a safe menu for their child to eat school cafeteria food.

My first question to them is what is the motivation? Is it important to YOU that your child participate by eating a school “hot lunch” or is it important to your child? If it’s important to your child find out why. They may feel more a part of the crowd, and that is certainly important. If your child really isn’t thrilled with the idea, then maybe it’s best to send in a lunch made from home.

If it’s really important to your child, your next step would be to contact the lunchroom staff. Your school district will likely have a supervisor over the cafeteria staff who could obtain ingredient information. You could review safe foods and watch for those as they are available on a monthly menu. If your school doesn’t provide such a menu, then you may need to rethink if it’s safe to send your child in to school to figure out whether a food is safe. Remember, looking at a food to determine its safety generally doesn’t work. And taste testing to see if a reaction ensues is horribly dangerous!

Cafeteria staff will need to be trained to not cross contaminate foods. Picking up different foods with spatulas can cross contaminate the entire kitchen. If peanut butter & jelly sandwiches are made in the kitchen, and your child is allergic to peanuts, you may need to opt out of school lunches on pb&j days.

You will also need to find out how the cafeteria will let you know if a product’s ingredients have changed. The menu may have been safe in September, but by February the safe bread roll may come with sesame seeds, for example. Our school district provides a parent meeting in the beginning of the school year for all families dealing with food allergies. Parents can read all ingredient labels of all foods served. The glitch is that there is no system yet available to tell the parents if the ingredients have changed during the school year. And there have been problems with that for the severely allergic children.

Lastly, the cafeteria staff will need to be trained how to properly clean up. If your child can eat a few menu items, you will be relying upon them to clean up after unsafe foods are made in the kitchen area.

It takes a lot of work, and I’ve known too many food allergic children to have reactions eating cafeteria food. Yet some families have managed to find certain safe foods for their child to eat at school, and all is going well. It’s up to each family to find what works for you. After meeting Sara Shannon whose daughter, Sabrina, died at school after eating cross contaminated cafeteria food, Morgan and I decided his food allergies were too severe to take the risk.

Your state or school district may have guidelines for schools regarding special dietary needs especially for those students with food allergies. Check out the resources available and be cautious!

AllerSchool and Allergen Free Eating at School

AllerSchool is a complete end-to-end solution designed for the management of food allergies in K-12 school systems. It helps food service departments and school dieticians to manage complex issues involved with serving everyday meals to students with varying combinations of food allergies and dietary restrictions. is an interview with one of the two creators of AllerSchool, Mr. Dilip Chopra.

Mr. Chopra, can you tell us how you came up with the idea of AllerSchool? Who or what was your inspiration?

The inspiration behind this project was my daughter, who has had food allergies since she was only a few months old.  When she started school, we quickly realized the absolute need to be able to look into the ingredients of the food items served at the school cafeteria. The process of securing reliable ingredient information was so frustrating. We, as a family, started thinking that there had to be a better way! It is not that the school authorities did not want to cooperate with us, but the process of getting accurate information was just not very organized in general. As the years passed by, we came across other parents in similar situations but with children that had different combinations of food allergies, as well as different levels of allergic severities.

It became clear that there had to be a system that could quickly identify problem ingredients and generate safe food choices without requiring parents to go through the cafeteria’s hundreds of ingredient labels. We also realized the challenge that school food officials were facing by trying to accommodate all of the different combinations of food allergies into their daily menus.

As a result, AllerSchool designed to help students and their parents identify safe meal options, taking into consideration each student’s unique combination, and to help the school districts efficiently manage the complex issue of serving their students safe meals. AllerSchool was made a reality with the help of my friend Atul Ahuja, the other co-founder of AllerSchool and the technology architect behind this effort.

Please tell us about AllerSchool and how it works ‘in action’?

AllerSchool is a comprehensive solution with a lot of ‘bells & whistles’, all aimed at making it easier for students with food allergies, their parents, and the school food services departments to efficiently identify safe food choices from existing meal options at the school cafeteria.

Basically, a parent/guardian registers their student and their food allergy restrictions and based on that unique combination of food allergies, the system securely logs the parents on to a ‘parent portal,’ where they can view safe options for their child from the school’s existing menu. The parents are able to view detailed ingredients and can place direct electronic meal orders with the school cafeterias days, weeks, or months in advance.

AllerSchool aids school’s food services departments by automating the complex process of identifying safe meal choices for their students with allergies. It eliminates the process of manually identifying ingredients, including their many food derivatives. These tasks can only be efficiently carried out with the help of automated systems such as AllerSchool.

What do you hope it will accomplish for school districts?

For school districts, AllerSchool has the potential to increase meal revenues by increasing the number of students purchasing meals at the cafeteria. It also can reduce the risks associated with serving the wrong foods, improve parental involvement, and increase operational efficiencies that come with automation. By simplifying some of the complex issues related to food allergies, we hope schools are able to offer more inclusive meal opportunities for a larger number of students with food allergies.

How many school districts are currently using AllerSchool? What do they think about it? Has there been any upgrades or improvements made based upon user suggestions?

The AllerSchool system made its debut in Colorado Springs District11 last fall. Since most school districts implement new systems at the beginning of the school year, we hope to have more implementations this fall. We are currently talking to several school districts across the country which have expressed an interest in the system.

Both parents and the food services departments have expressed great satisfaction with the system. Improvements based on user requests are an on-going process at AllerSchool. We are continually upgrading, improving, and adding new features to the system.

How do you ensure that if ingredients in a product change that parents and students will know this?

The system is  a web-based, “real-time” system. Ingredient changes need to be communicated from the school food suppliers to the school food services and, if there is a change in ingredients, the district officials must make the change in AllerSchool, which is then instantaneously is reflected in all information that is available to parents. The system is in no way designed to replace manual responsibility and diligence at different levels of the food distribution process. Diligence, therefore, is an essential element of the process.

Does your system address cross contact in the cooking process? If so, how?

The AllerSchool system is designed to identify, detect, and interpret potentially unsafe items for individuals considering their unique set of food restrictions. It is not designed to address the issues related to cross-contamination. That falls within the realm of exercising care and diligence that must be carried out during the cooking and preparing processes.

With the AllerSchool system, is peanut butter still being served in cafeterias with your system?

The AllerSchool system has a unique feature that assigns an “Allergy-Friendly Index” (AFI) ranking to all recipes that are served at a given school district. In a nutshell, this is an index ranking that is computed based on the overall macro-allergy profile of a school district. So if peanut products are on the planned menu for a district with a large number of students with peanut allergies, the school food services will see a very low AFI ranking and a “flag” for menu items with peanuts, peanut by-products, and peanut derivatives. It is then up to the school district to decide if they still want to offer peanut products. AllerSchool provides the tools to make such decisions.

Is there anything else you’d like to add?

We (along with D11) were selected as the semi finalists in the Operator Innovations Awards by the National Restaurant Association yesterday. Here is the news link for their announcement.

It is an honor considering we started as just a small grassroots effort and we were selected under the ‘Food Safety’ category for food allergies management nationally. The award also increases the awareness of the subject in the food services industry in general which can only help the efforts of our entire community including FAAN.


The Tragedy of Peanut Allergy Anaphylaxis

This month’s main article will touch many hearts. Dee Benson, mom to Laura, lost her beautiful 18 year old daughter to peanut-induced anaphylaxis in 2004. She’s never told Laura’s story and wanted to tell all of you about her. It’s heart-wrenching to realize that we really do deal with life and death when managing food allergies.

Dee, tell us about your daughter Laura. What did she like? What were her dreams for the future?


Thanks Nicole for the opportunity to tell Laura’s story.  Laura, like most teenagers, loved being with her friends.  She loved God and was on the worship team at her church.  She had a passion for performing and took every opportunity to sing and dance on stage.  Laura never shied from the spotlight and didn’t mind standing out from the crowd.  Most of her wardrobe consisted of neon colors and clothing she had “improved” with scissors and puffy paint. But above all, Laura cared deeply for people and really invested herself in them. Whether it was staying up all night to make presents for her friends just to show she cared or donating her hair to Locks of Love or pouring her energy into promoting school music programs, she tried to make her little corner of the world a kinder and more beautiful place.

What was your daughter Laura allergic to? How old was she when you found out about her allergies?

Laura had many allergies.  She was allergic to trees and grasses, dogs, cats, dust, and peanuts.  Her peanut allergy was by far the most severe.  When Laura began eating solid foods, my mother gave her part of a peanut butter and honey sandwich, and within minutes her face was hugely swollen.  Later, before Laura turned 2, she had to be rushed to the hospital because she had trouble breathing.  It was at this time that she was also diagnosed with Asthma.

Had she ever eaten peanuts before? Did she experience an allergic reaction then?

Laura had infrequently come into contact with a few peanut products (candy, with peanuts or peanut butter) over the years.  Generally, she would spit them out because she was aware of her allergy and also because she just didn’t like the taste of peanuts.  On those occasions, she would take her inhaler and call me.  I would bring her Benadryl and in a while she would be better.

Did Laura understand about her peanut allergies? Did she carry an EpiPen?

She understood that she had a severe allergy to peanuts, and she took it very seriously.  I did leave an EpiPen with her middle school office, which was never used, but Laura didn’t normally carry an EpiPen.

Tell us about the camp that Laura attended. Had she been there before?

The high school group at her church did a Spring Break service project every year. They went to a camp in Northern California to prepare the camp for summer. They painted and cleaned and had a great time.  Laura had been at this particular camp before and was looking forward to it.

What happened on the day Laura died?

At lunch, one of the camp staff had prepared rice krispie treats with peanut butter, but nobody labeled the snack or informed the kids of the ingredients.  Laura loved rice krispie treats, and it never occurred to her that anyone would make them with peanut butter.  After she ate it, she went to one of her counselors and told him that she believed there were peanuts in the snack and that she was having an allergic reaction.  The counselor told her to go back to her room and lay down for a while.

(Just as a precaution, on the Friday before leaving for camp, I called Laura’s doctor’s office to see if I could get Laura in to renew her EpiPen, which had expired quite a while before this.  The doctor only worked half days on Friday and we were not able to get an appointment, therefore, Laura did not have an EpiPen with her at camp.  She did have her inhaler and I am sure she took that, but she was not given any additional medicine such as Benadryl.)

When she got worse, she went to her counselors again, and that’s when they realized that she needed medical attention.  They called the ambulance, which was several miles away.  Laura died on the way to the hospital.

Is there anything you would have done differently?

Aside from not letting her go at all, I would have required a nurse and EpiPens be available on site.  Laura had filled out her own application for the camp, which stated that she had a peanut allergy (as well as other allergies) and asthma, so the church and the camp were given information on Laura’s condition.

Has the camp done anything differently since Laura’s death in 2004?

I haven’t contacted the camp, but I hope that they would now review all allergies listed on campers’ application forms.

What advice can you offer to other parents of children with food allergies?

Be prepared for emergencies, and enjoy every minute you have with your children.

Thanks,

Dee

Nicole’s Comments: Thank you Dee for sharing this incredibly tragic story. I so appreciate you sharing what happened to your family because it helps those of managing food allergies to learn from you. Dee and I met recently and talked about Laura. Like many teens and children with food allergies,  Laura had never experienced anaphylaxis before this episode. It reminds us all that past allergic reactions are no indicator of future ones and potential severity. From Dee’s comments about what she would have done differently, I’m sure many of us can relate. In the 8 years since Laura has died, there is more education and awareness in many camps, but make sure to have your child’s Health Care Plan/Food Allergy Action Plan in writing; have EpiPens travel with your child always and as Dee said, “enjoy every minute you have with your children.”

Interview with Dr. Hemant Sharma

Dr. Hemant Sharma is the Associate Chief of the Division of Allergy and Immunology at Children’s National Medical Center in Washington, D.C.  He is also the Director of the Food Allergy Program and site director for the National Institutes of Health Allergy and Immunology fellowship program.  Dr. Sharma obtained his medical degree from Columbia University, and completed his pediatric residency and chief residency at Duke University.  He trained in allergy and immunology at Johns Hopkins, where he also completed a degree in clinical epidemiology.  He is a regular contributor to a food allergy column in Allergic Living magazine and recently co-edited the “Food Allergy in Children” series for Pediatric Clinics of North America.

Dr. Sharma, thank you for helping us to learn more about asthma and food allergies. Dr. Ruchi Gupta’s recent research found that nearly 8% of US children under 18 have food allergies. Do you know of recent research that has determined how many children with food allergies also have asthma? In your practice, how many children have both?

Food allergies and asthma often do occur together.  Prior studies suggest that more than a third of children with food allergies also have asthma, and up to 8% of asthmatic children have a food allergy.  It is not uncommon for us to see something called the “atopic (or allergic) march” in children, where they start out in infancy with food allergy and then go on to develop asthma and hay fever later in childhood.

My son had Respiratory Syncytial Virus (RSV) at 3 weeks old. We heard that this would make him more likely to have asthma. Is this true? Is there any relationship between RSV and food allergies?

RSV infection in infancy has been shown to be associated with a higher chance of developing asthma later in childhood.  Interestingly, wheezing with rhinovirus (the common cold virus) in early childhood is actually a much stronger risk factor for later asthma than RSV.  It’s not entirely clear if these viruses cause asthma or are simply predictors of childhood asthma.  There is not any evidence for a connection between RSV and food allergy.

Is asthma the same as “reactive airways”? Is it medicated the same?

The term “reactive airways” is often used by health care providers to describe wheezing in early childhood, when it may not yet be certain whether that wheezing will resolve over time or develop into chronic asthma.  One of the hallmarks of asthma is reactivity or “hyper responsiveness” to triggers, which can lead to tightening around the airways during a flare-up.   Both “reactive airways” and asthma may be treated with the same medications, for example bronchodilators like albuterol, which help relieve this tightening around the airways.

Is there a different protocol for your patients who have just food allergies versus those who have both food allergies and asthma? How about children who have the atopic trifecta: food allergies, asthma and eczema?

The management of food allergies is similar whether a child has food allergies alone, or accompanying asthma and/or eczema.  Food allergen triggers should be avoided, and in some cases, this may help to improve eczema control as well.  In addition, emergency medications to treat food-allergic reactions should be available at all times, including epinephrine, antihistamine, and, if a child has asthma, albuterol.  For children who have both food allergy and asthma, asthma symptoms might certainly be part of a food-allergic reaction, but they are usually not the only symptom observed.

My son has severe peanut & tree nut allergy – among several other foods – and mild asthma. I’ve read that two of the risk factors for fatal anaphylaxis are peanut or tree nut allergy and asthma. (The third being a delay in the administration of epinephrine). Why are peanut/nut allergy and asthma implicated with this higher risk of a fatality? What should my son be doing to mitigate this risk?

Certain foods, like peanuts and tree nuts, have been shown to be associated with a higher risk of fatal reactions.  The reasons are not entirely understood, but likely are related to unique biochemical properties of these allergens.  It is also important to note that fatal reactions have occurred to many foods other than nuts.  Asthma is another risk factor for fatal food allergy reactions.  This might be explained by delayed use of epinephrine since people with asthma might often reach first for their inhaler when they are experiencing breathing difficulty, and overlook other signs of anaphylaxis.  For patients with both food allergy and asthma who develop abrupt respiratory symptoms, it’s advised they assess whether other symptoms of anaphylaxis are being experienced, and if so treat immediately with epinephrine.

For years we thought that my son had outgrown his asthma. When we went to National Jewish Hospital a year ago, he had a Nitric Oxide test that our local allergist wasn’t able to administer in her office. We then found out he had likely had mild asthma all along and had gotten accustomed to a tight feeling in his chest. Our allergist’s testing methods weren’t refined enough to pick up the problem, and my son didn’t know he was having difficulties. Should we parents be looking for certain signs of asthma if our children have other allergy issues?

The most commonly used test to evaluate lung function in asthma is spirometry.  This form of lung function testing measures obstruction to air flow, usually before and after receiving a bronchodilator medicine, like albuterol.  Nitric oxide testing, instead of measuring obstruction, detects airway inflammation, which might be present in uncontrolled asthma.  While this test may provide useful information in some cases, it cannot by itself diagnose asthma, and is not a test that needs to be done for every child with asthma.  In fact, studies have not shown that using nitric oxide testing helps to improve asthma control, beyond relying on a thorough assessment of symptom frequency, need for albuterol and spirometry results.

There is more research recently to find a cure for food allergies. I’ve read that asthma kills 9 persons a day sadly, in the USA alone. What research is there to find a cure for asthma? Do you see any great new asthma medications on the horizon?

Research is also under way to identify new treatments for asthma.  Omalizumab (Xolair) is an example of a new asthma medication that has helped patients with severe allergic asthma, who failed to respond to other asthma treatments.  It functions by blocking the binding of the IgE antibody.  This medication is also being studied for potential use in food allergy.

Thank you Dr. Sharma!

 

 

 

 

 

Food Allergies & Boy Scouts

Our son, Morgan, has been involved with Cub and Boy Scouts since he was a small boy. From the first year he began in Cub Scouts, he wanted to become an Eagle Scout. We knew this would take many years and many camp outs! That meant that food would have to be dealt with at Den meetings, and allergy awareness would have to be raised in the Troop when he crossed over to Boy Scouts.

When my husband, Bob, was a boy he participated in Boy Scouts, and he very much wanted Morgan to have the experience of Scouting.  Bob went to sign Morgan up for Cub Scouts and found out that snacks were a constant part of Den meetings, and most Den meetings in our area occurred in someone’s home. With Morgan’s multiple life threatening food allergies and pet allergies, it wasn’t going to work for him to participate at someone else’s home. Therefore, Bob became a Den Master! Food ceased to be a part of the Den Meetings, and the boys had a great time doing other Scouting activities.

Scouting has been a great bonding time for Bob and Morgan. I’ve done my best to be supportive of the two of them, but I’ve stayed out of any leadership position and never gone on any of the camping trips or “field trips” that the boys have taken.
It helped for Bob to be able to participate in all the activities and continue to increase awareness of food allergies. Many of the boys in the Cub Scout Den crossed over into the Boy Scout Troop. They and their families had heard about food allergies for years, and were so wonderful in helping to keep Morgan safe.

In Boy Scouts, Bob became an Assistant Scoutmaster. Again, this allowed him to participate as an adult leader and to continue to allow Morgan to become self-sufficient around food. Boy Scouts do a lot more activities than Cub Scouts, so the need for food allergy awareness became even greater.

Here’s what Morgan says about preparing his Boy Scout Troop for his food allergies:

The first Troop meeting I went to I presented to our PLC, or the Patrol Leaders’ Council, which is the team of boys that leads the Troop. It took about 15 minutes, and I explained what food allergies are, what my food allergies are, and how the Troop can help keep me safe. I made the same presentation to the entire troop a few meetings later, and they were very accepting. It was awesome!

For every camping trip we have, I sit down with the patrol I will be eating with and we plan a menu as a whole. I then, with my Dad or Mom and perhaps some other scouts, go and shop for the food that is safe for me. People, even though they say they do, don’t understand food allergies and the risk cross-contamination is, especially on a camp out. There has been only one camp out, out of 5 years (almost 40 camping trips), that has been an issue, and it was only a miscommunication with a parent, who went and tried to buy safe food. In that case, I did bring my own, safe food, but I still participated in the camp out just like any other boy.

My husband, Bob, has even more ideas for how to keep your son safe in Boy Scouts:

I hope I can shed some light on managing food allergies from an Assistant Scoutmaster’s perspective. I have been in Boy Scouts for over 5  years and 3 1/2 years in Cub Scouts. I was also a Life Scout as a youth. You will come into challenges as most of the adults do not understand food allergies nor do they understand the true ramifications of what can happen to a Boy Scout if he were to ingest or come near certain allergens.

Every situation is different but my experience is the best tool I have at my disposal,  as well as education. The more educated they are about Food Allergies the more support you will receive. Most Scout parents all want to help, they just don’t know what to do.  I will share my experience as to Troop food from an adult’s perspective.  It is my experience in our Troop, the patrols set their menus. If Morgan happens to be that patrol leader, they are well aware in creating safe menus of no nuts, no peanuts, food made with any sesame, shellfish or fish.  Heck most of them would live on Pop Tarts and Mountain Dew if we let them, but we help them to insure they are making complete balanced meals as outlined in the Boy Scout Handbook.

It helps them attain rank advancement and they are required to plan a meal and cook a meal for their entire patrol. Morgan is the one that usually buys the food for a campout so he can read the labels of the food he is buying for the patrol. (They all pitch in the monies equally) This affords him to feel safe and empowered by being able to advocate for himself with the knowledge that what he is going to eat will be safe.  We make sure he gets to shop or he brings his own food when we backpack. Also even though other parents think they will buy the right foods, the problem is many times we have found that manufacturers change ingredients and do not tell anyone and the food now is not safe.

Other parents’ intentions are right, but their lack of knowledge is something they don’t know. In Scouting nuts can be a big factor because when you are backpacking or camping, most boys bring trail mix. They know not to sit near Morgan when they eat it and to wash their hands after, but they are aware to keep Morgan safe. Most of the boys (50+ in our Troop) are very supportive of Morgan and they work hard on informing him if they are eating nuts or something that he is allergic to. This works well.

Lastly, the only other thing you have to watch for is cross contamination. If you ever looked at a stove when a “Boy Scout” got done cooking, the HazMat team should be called in to clean it! In all seriousness, if someone is using a spatula from one pan and it goes in another, Morgan knows not to eat any of it, unless he knows ALL the food is safe.

Scouts and their parents are very supportive of Morgan with his allergies. It also helps now that Morgan is 16 years old, an Eagle Scout and a junior assistant scoutmaster in addition to being a good leader. They listen to him more. Morgan had always been a good leader in helping younger scouts achieve things, which is why I believe he gets a lot of respect from both the boys and the adult leadership team.

In terms of Boy Scout camps, such as Camp Alexander near us in the Rocky Mountains or the National Jamboree that Morgan attended in 2010 at Fort AP Hill in Virginia, a different set of issues are presented.

Even though Morgan has had contact reactions with his food allergens – especially fish and peanuts – we did not ever ask that none of these foods be served at the Camp. Instead, we figured out a way to prepare safe foods for him to bring with him to camp and made the EMT’s at the camp aware of his severe food allergies. With the great outdoors, he has never had a problem with contact reactions at a Scout Camp.

When Morgan attended Camp Alexander, he did so with his Dad for a few of the campouts. Then, he also attended the Camp on his own for a week. We always prepared all of his food at home and brought it to the Camp either frozen or refrigerated along with a “dry foods” bag. Then, Morgan prepared index cards of each specific item he would eat on each day and each meal. For example,

Monday Breakfast

Waffles & Syrup
Turkey Sausage
Banana
Orange Juice

We would discuss cross contamination and safe food preparation with the kitchen staff when we dropped Morgan off for camp. Most of the time, the camp staff would prepare his meal based upon his index cards, even heating it up in a microwave for him. The only time we ever had an issue was when Morgan ran out of food the night before he was to come home from camp. The chef prepared him more broccoli to eat with dinner, and he soon got a stomach ache after eating it. He was taken to the medic tent who gave him Benadryl because no breathing problems were evident, and he soon got better. We never figured out why broccoli would have made him feel sick, but chalked it up to either nerves on his part or lack or complete cleaning on the part of the kitchen staff. From that time on, I sent WAY more food than I thought he could eat in a week, so we never had to deal with that again!

When Morgan went to the National Jamboree in 2010 along with 42,000 other Boy Scouts and Scout Leaders, the preparation of food was much more difficult. We live in Colorado, and the National Jamboree was in Virginia. It would be impossible to send all the food for 10 days worth of camp prepared at home and shipped across the USA.

This time, my husband went out to Virginia on an airplane, rented a small hotel room with a kitchen, and prepared all of Morgan’s food. He then carted in 5 days worth of the food during the Jamboree, and did so again 5 days later. Their kitchen facilities were accommodating and kept the food refrigerated.
Since Bob was an assistant Scoutmaster, he was allowed to be at the Jamboree to do such. Many of the boys LOVED the food that Morgan ate, and thought it looked much better than the food they were eating! He became very popular during those 10 days for his Dad’s wonderful cooking!!
If your son wants to participate in Boy Scouts, I would encourage parental participation, especially on the part of Dad. It’s a great way to spend time with your son, and it also allows Dad to be part of the food allergy solution without your son feeling you’re hanging over him.

Bob and Morgan hoped to attend Philmont Scout Ranch, a Boy Scout high adventure camp that involves 12 days of backpacking through northern New Mexico. Morgan planned on bringing safe freeze dried food since no refrigeration is possible. However when the Philmont menu came out, it was clear that peanuts and tree nuts were to be served at EVERY meal – in granola, cookies, or just stand alone packets of salted nuts. The fact that every participant would be eating these foods (other than Morgan) made it virtually impossible for Morgan to let down his guard and enjoy the camp. Therefore, Bob and Morgan decided to go on their own, private hiking trip where this issue wasn’t involved!

 

 

 

Food Allergies, School & a Tragedy

Sending your child off to school for the first time is difficult for most parents. When your child has food allergies, there can be even more anxiety. Then, hearing about the death of a 7 year old girl at school in Virginia can tip the anxiety over the top! The details around the sad, tragic death of first grade student, Ammaria Johnson, may never be fully known. (Click here for more info about this tragedy.) What is known is that Ammaria never received epinephrine at her school. Her Mom had authorized an Allergy Action Plan, but it appears to not have been followed. With good preparation and communication, your child with food allergies can be safe at school. As parents, there is a lot we can do to avert such a tragedy.

I’ve heard from many parents after this sad story hit the news. Many were concerned that no school could ever keep their child safe. There’s a lot to be learned from this situation. It’s my experience that children with food allergies can go to school AND can stay safe and be included! Here’s what we have found to work from preschool into high school.

Before the first day of school, every one of our son’s teachers has read his 504 Plan and Health Care Plan. They know what to do to decrease the chances of him coming into contact with his allergens in their classroom and the lunchroom. They also have been trained  how to administer his EpiPen.

  • We provided multiple EpiPens to the school for the classroom, nurse’s office and playground monitor prior to our son being able to self-carry his medicine.
  • We made sure our son, Morgan, knew exactly what he was allergic to. He wears a MedicAlert bracelet that details this also.
  • We had an agreement that he ate only food that Mom or Dad packed for him or brought to school (for a party) when he was in elementary and middle school. He never purchased the school lunch or anything from a vending machine.
  • Morgan, my husband and I educated his friends about his food allergies through classroom presentations and Cub Scout/Boy Scout meetings. Books like Allie the Allergic Elephant were read to the class so that his classmates could learn what an allergic reaction looked like and what symptoms could occur.
  • We keep communicating …with the Principal, teachers, custodians, bus drivers, etc…education about food allergies isn’t a onetime shot. It needs to be brought up over and over again. And when the conversation does occur, we focus on being kind about the message that we all want to keep Morgan safe!

It doesn’t have to be complicated, but that doesn’t mean it’s easy! It does take a lot of preparation and communication with the school to keep your child safe.

Accidents do occur, so talk to your child about what they would do if someone offered them a food. Roll play situations. What would they do if someone sat in their allergen free zone in the cafeteria? Help them with options and solutions. What if someone teased them? Help your child learn how to become a good self-advocate.

Morgan’s friends watched out for him because they knew about his food allergies. We never kept his allergies a secret, and that has continued to work for us as he has aged into a teenager.

For those of you with children entering preschool or kindergarten in the Fall – it’s not too early to begin discussions with the school of your choice. Check out our e-book on Food Allergies & Schools and our Nut Free Zone posters to help raise awareness!

 

Inhalant dairy allergies & a creative solution – a robot!

Below is an interview with Lauren & her Mom, Melissa. Lauren’s inhalant dairy allergies forced a creative solution with going to school!

Lauren – can you tell me how old you are and what your allergies are? 

I am 14 years old and I’m allergic to all forms of dairy including goat milk.

Have you ever gone into anaphylaxis?

I have been in anaphylaxis over 40 times. If my EpiPen wears off I need more EpiPen before I reach the hospital. Sometimes I only need one EpiPen if it’s just a little contamination, but many times I need at least two EpiPens and then more meds at the hospital. If I do not take my EpiPen immediately I get VERY sick. In the last few years I have gotten better about taking my Epi right away and this helps me not get as sick as I used to get.

One time I swallowed a bite of cheese without knowing it was “real” cheese ( I thought it was my soy cheese that I always eat) and my throat hurt immediately, then I got a blister on my lip and then I got red all over my body like a sunburn. I was throwing up and felt very sleepy. I started wheezing. I began getting hives that burned all over. I was screaming that my back burned. All of this happened in minutes, and got worse until we arrived at the hospital. My parents said my eyes rolled in back of my head in the trauma room. They said the doctors were very helpful and knew exactly how to help me. I fell asleep. When I woke up I felt better and we spent two nights in the pediatric intensive care unit.

Tell me about your robot. How does it work? Can you see the students and teachers as you sit at home?

The Vgo works like Skype on wheels. I log on at home and then I drive my Vgo to class from home. I can see the teacher and the students, and can even work on group projects together or with a partner. If I want to raise my hand I press a key on my keyboard and a light on the robot flashes so the teacher can call on me.

How did you feel about your safety at school with your food allergies before getting your robot? And now?

I was always worried about what was going to happen to me that day…would the ambulance have to come to school again? Would I be careful enough? And now that I go to school with this robot I feel safer BUT I still want to go to school.

Do you participate in extra-curricular activities like sports, clubs or dances?

I have done field hockey this year but I have to make sure I’m wiping everything down and I can’t go on the bus to away games and I can’t be around their snacks and I can’t do food events with them. I’m in karate also. I also am involved volunteering at the hospital and other philanthropies around my town that are safe. I also volunteer at our church (but I can only do certain jobs that are safe.)

How do you socialize with your friends?

When my friends come over they need to be sure and wash up and don’t have it on their clothes. When they come in and they don’t eat obvious dairy before they see me (like pizza cheese doodles or Doritos). Sometimes I go to other friends houses if they clean before I come. Sometimes I go places with them if there is a low risk of contamination while I’m at a place. But there is a high risk with most things. I try not to take high risks.

Melissa – when did you know that Lauren was no longer safe at school and that something needed to change?

We knew that Lauren was no longer safe in school when she went to one of her classes and walked into the room after they had a pizza party and her throat began to hurt. The teacher washed down everything correctly but it was still airborne and enough was still around to cause a significant reaction.  She took her EpiPen, the ambulance came and took her to the hospital and she was on steroids for a week that time.

Did Lauren have a 504 Plan and Health Care Plan prior to having the robot?

Yes she did, we felt that it was important to have a 504 & a Health Care Plan , but our needs became above and beyond what the school could handle. To keep her safe at school would mean to eliminate dairy. Also when she has a reaction she needs to take epinephrine immediately or she becomes way too sick. We could not take the chance that she would not get medicine immediately. Also her doctor said we should take her out of school before something happens that we can’t “get back” from.

How did you get the school to pay for the robot?

Lauren’s home bound supervisor was working hard on finding a way for Lauren to attend school safely. This past summer he was reading “Sports Illustrated” and read a story about a boy in Texas who went to school using a robot. He thought that this robot would be the safest way for Lauren to get to go to school. He went to the Asst. Superintendent to ask for her support to let him try this “robot” out with Lauren. He purchased the unit out of his home bound budget. His concern was having Lauren spend her freshman year in school.

What do you hope for Lauren as she ages through high school and goes into college and beyond?

Lauren wants to work, go to college, become a forensic scientist, get married and start her own family. Our hope is to find ways to keep her safe through living out all of her dreams.

Is there any hope for her dairy allergy to lessen?

Our hopes for Lauren is that the Chinese herbal treatment that she is on (from Dr. Li at Mt. Sinai Hospital in NY) will work! First the hope is that she will stop reacting from inhaled dairy, and then of course we wait for the day of the cure. In the mean time we continue to remind her to wash hands, keep her hands out of her mouth, remind others to wash hands, especially when they come in our home. And remind ourselves to  keep our eyes open for hidden dairy, or airborne dairy. Also we need to read labels over and over and find ways to live in a dairy laden world.

Is there anything else you’d like to add?

Dairy is in so many things…and in surprising places. Lauren has been in anaphylaxis so many times because of a combination of factors. First it was hard for our family to understand how sensitive she was….it started with eliminating dairy from my own diet so I could continue to nurse her but it went on to having to eliminate dairy from our home because I would contaminate her from the dishwasher items in addition to cross contamination issues. Dairy has been found in places I never would have thought of. We have had so many mistakes because we could not always grasp the seriousness of invisible dairy and because of human error…like manufacturers that make mistakes in labeling. We now know that more than 20% of medications have dairy. We find out things like that the hard way. Food labeling laws have made life MUCH easier for us. Restaurants like in Disney World makes our life easier when we go there. And people who “get it” also make life easier.

Thanks Lauren & Melissa!

Follow Up interview with College Student, Carlo Steinman

Carlo, when we spoke last year, you were getting ready to attend the University of Chicago. You have allergies to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables. What did you find most difficult with eating in a dorm cafeteria on a daily basis?

What I’ve found most difficult is finding a good variety of protein for me to eat. There hasn’t ever really been a problem with there being food for me to eat, but there have been some difficulties with the variety of food, and I’ve been forced to have the same foods over and over, which although it keeps me fed, is somewhat frustrating. There’s always salads and some vegetables and fruits, but protein is harder to come by.

The dining hall is separated into various stations, each serving a certain type of food. There is a Euro Station–mostly carved meats (but almost always with sauces/dressing) and some sort of vegetables, the Halal Station, the Kosher Station, the Harvest Station that serves vegetarian dishes, the Pasta Station, the Salad Station, the Deli Station, the Pizza Station and the Grill Station. You can go around to any of the stations and take what you want, making a meal out of whatever any of the stations are serving that meal. I have to avoid most of these stations. The Pasta and Pizza Stations I pretty obviously must avoid, and the Halal Station and the Harvest Station frequently serve things I can’t have, because of their restrictions on certain types of foods. The Kosher Station occasionally serves things I can eat. The Deli Station is full of cross-contamination, as is the Salad Station.

The Grill Station is just a grill. It makes hamburger patties (you can add your own bun and toppings later), grilled chicken breast, and grilled cheese (which is prepared on a separate grill from the hamburgers and chicken). It makes these things for lunch and dinner every day, which provides a nice stability to the ever-changing options that the other stations offer.

Did you have any allergic reaction?

Thankfully, I have not had any reactions while at college. I think part of that is because I’ve been extra careful, perhaps even more than I usually am. A large part, though, has to be attributed to the dining staff, because they really are trained about cross-contamination and they are very willing to change gloves or use a separate pan. That said, I try to stay away from stations that could pose any sort of risk.

Did you find any other students dealing with similar allergies?

I haven’t really found anyone else with comparable allergies, both in number and in magnitude. There are a few people with intolerances (lactose intolerant) and maybe one or two people with peanut or tree nut allergies, but there aren’t very many people with allergies or anyone with allergies coming close to how many I have. That said, everyone I’ve met has been knowledgeable about food allergies or very interested in learning about them, so I’ve felt safe among my peers even though they don’t have allergies.

How do you feel about next semester and eating in the dorm cafeteria?

One of the things I’m doing over this break is meeting with my nutritionist at Mt. Sinai’s Jaffe Food Allergy Institute. Hopefully, I’ll be able to work with the nutritionist to develop strategies for me to successfully maintain a healthy diet eating in the dining hall. Then, I’ll take those recommendations and meet with my contacts at school, to work it out. I’m also going to sit down again with the dining hall staff and my contacts in the administration and see if we can’t get some of the things that have been proposed put into action. Other than that, I’m really looking forward to it. I’m excited for my classes and looking forward to Winter Quarter, despite the weather.

For your sophomore year, what living arrangements are you planning?

At the University of Chicago, the dorms work in a house system (kind of like Hogwarts). In your first year, you are placed into a house that contains ~40-100 people, first through fourth years. You can stay in that house for all four years, if you would like, or you can move off campus starting your second year. I’m planning on staying in my house, because I love the people in it and living on campus makes everything significantly easier. I may, however, start going to the grocery store more frequently and making more of my own meals to avoid the dining hall. I would, in that case, change my meal plan from the unlimited (which is mandatory for all first years and really nice) to one that more fits the changed situation.

Did you go hungry on any given day because of a lack of safe food?

Thankfully, since the Grill station is always open and serving plain chicken breast and plain hamburger patties, there was never a day where I went hungry. There were certainly days where the lack of variety was frustrating, or two or three day stretches where the only safe food for me would be from the Grill station, but I was never walking around constantly hungry, except as much as all college students on the go do, but that’s just the nature of dining hall food.

Based upon your experience, what would you tell a current high school senior with food allergies looking at college?

Really, the best thing I can say to a high school senior is that food allergies don’t need to be another thing stressing you out. The entire college process is an arduous one, and you don’t need another stressor. Pick a school that you think is the best fit for you academically and socially. All the schools I considered and all the schools that my friends with food allergies go to have been pretty good about dealing with food allergies. Don’t let food allergies dictate what college you go to. You will be able to work with the dining services staff, or just go around them and provide for yourself, if need be. I’m not going to lie and say it will be a walk in the park, but you can successfully and safely manage your food allergies in college. It isn’t easy, but nothing about living with food allergies is. That doesn’t mean that it isn’t possible, and that especially doesn’t mean that your food allergies will hold you back from having a happy, successful, normal life. Don’t let your food allergies add yet another stress to an already stressful process and don’t let your food allergies stop you from doing what you think is best for you academically and socially.

Again, I hope these help!

All the best,

Carlo Steinman

 

 

Allergy Aware Colleges

It’s difficult to know where to start when your child with food allergies gets to that age to begin the college search. The good news is that most high schools are well equipped with counselors to help with the college search itself; however it’s up to you and your child to pursue the discussion of food allergies with each individual college or university. We found that high school counselors weren’t educated enough about food allergies to know how to answer any of our questions about a college’s ability to feed our child in a dorm cafeteria.

A university website that states,” We can handle virtually any food allergy” was not sufficient for us to feel comfortable with our child living in the dorm and eating in the cafeteria. We wanted to visit the school, eat in the cafeteria, talk with the dietitian on staff, discuss ingredients being listed for all foods and determine the menu selections for each meal in addition to discussing academics. It takes more effort to find a school that meets your child’s desires for a major and for food allergies, but it’s well worth the time to ensure safety, enjoyment and a career destination.

Finding the “Right College”

Our daughter, Michaela, graduated from high school in 2009. She has celiac disease along with multiple other severe food intolerances (beef, pork and lemon to name a few). She didn’t really know what she wanted to major in, but she had a general idea of a Liberal Arts major, so that helped our search. I suggest looking for colleges with a major in mind, and not with food allergies as #1 on your list of priorities. If your child decides that they want to major in a field that’s not offered at a particular college (that you chose for its food allergy expertise), then you have to start the food allergy education process over with another school when your child transfers. Choose a major and then take a look at the cafeteria!

Michaela knew that she wasn’t interested in moving out of state. If your child does want to go to a school out of state, looking for a local allergist would likely be necessary prior to enrollment. The maturity of your child is a large factor in moving far away and making this a positive experience. Moving a long distance away from family is difficult for children who don’t have food allergies – managing food allergies on top of this big change may be more than what some kids can or want to handle. Asking your child, “What’s the ideal situation for you to go to college?” might yield some very interesting answers!

Visit Colleges and Universities

Michaela  had participated in numerous one week and two week music camps through her high school years at several universities in Colorado. This gave her first hand experience of how the cafeteria works and what living at the school for an entire semester could look like. Sadly, she found that only one school – the University of Denver – was able to cook for her safely. All of the other schools either weren’t able to provide three safe meals per day or weren’t willing to try. One school had a gluten free menu for lunch and dinner, but not for breakfast. Another said, “we can cook anything you need,” and then had a menu of only 3 items – all of which included wheat. She ended up bringing her food for the entire one week camp and keeping it in a refrigerator utilizing a microwave to heat it. This can work for one week, but for an entire semester this would be onerous!

A friend and her gluten-intolerant daughter visited a college campus and asked the cafeteria manager what they do for students with celiac disease. The manager said, “We keep all peanut butter on a separate table!” It can be frightening the lack of understanding about food allergies and celiac disease in a college cafeteria where your child will basically be “eating out” for three meals a day.

We also went on campus visit days to numerous universities across Colorado. In the cafeteria, we searched for ingredient listings, talked with the dietitian on staff, and determined the menu selections for each meal. What we found was that the more expensive the tuition, the more likely a college/university cafeteria was to work with us. A large, public university that feeds 5000 students a day is very unlikely to accommodate a student with food allergies. One such school told Michaela that she was welcome to live in an apartment her freshman year. She gave that some thought, but decided that adjusting to college classes plus having to grocery shop and cook for herself was more than what she wanted to take on at 18 years old.

Many school cafeterias have students on work/study working in the cafeteria and this can make training about food allergies and EpiPens more difficult. Ask about the cafeteria workers when you visit a campus; watch how meals are served (same spatula used for serving all dishes?) and how plates are washed. All of this will help you and your child know where problems could occur.

Food Allergy Aware Colleges

I am currently participating in a committee looking into best practices of food allergy aware colleges for the Food Allergy Initiative (FAI). The University of Michigan (see link here) has probably one of the best systems for food allergy students. This is truly a food allergy aware college!

A food allergy aware school personalizes the experience of dining in the cafeteria; they don’t require living in the dorm freshman year (they allow for apartment living if your child is up for this!); they provide ingredient listings for all foods in the cafeteria; they have an aware chef and they have nearby EMTs and a hospital.

Many Ways to go to College with Food Allergies

Michaela decided to stay home her first year of college and then moved out to rent a room in a house near her school, the University of Colorado at Colorado Springs. This allowed her to get a repertoire of menu items that she learned how to cook, and she adjusted to college slowly. This was the perfect solution for her.

I know of students who went to college and lived in a single dorm room so they at least didn’t have to deal with a roommate bringing in unsafe foods. Others I know brought a microwave and refrigerator and prepared all their meals in their dorm room. Still others worked out safe menu items with the school cafeteria.

In other words, there are many ways to go to college with food allergies!

As a parent, it’s easy to want your child to have the same experience you had with school – maybe join a sport or live in a sorority house. Our suggestion is to allow your child to create his/her own experience. It’s likely to be far different from yours, but that’s okay. And it might have been different even if your child didn’t have food allergies!

 

Interview with Dr. Danny Soteres

 

Daniel F. Soteres is on the clinical faculty of the University of Colorado Health Sciences Center in Denver, and has been in private practice at Asthma and Allergy Associates and Research Center in Colorado Springs and Pueblo since 2005. Dr. Soteres received his medical degree in 1998 from Tulane University School of Medicine in New Orleans. He simultaneously earned a master of public health degree, completed a four-year combined residency in internal medicine and pediatrics, served as chief resident in internal medicine, and completed his fellowship in allergy and immunology.

Dr. Soteres, there are many research studies currently trying to find a cure for food allergies. Which research studies do you feel are most likely to yield a cure?

There are a bunch of great studies going on right now and I believe that the next 10 years will reveal a lot more options for those with food allergies.  Currently food-specific and non-specific therapies are being evaluated.  The therapies that are most promising are a Chinese Herbal formulation, FAHF-2 and Oral Immunotherapy (OIT) protocols that may be given with anti-IgE antibody (aka. Xolair).

FAHF-2 is a mixture of 9 herbs that completely blocked anaphylaxis during a peanut challenge 5 months after therapy.  This has been studied in Phase I clinical trials and was safe and effective.

There were 19 subjects with peanut and tree nut allergy.  Two patients had some mild GI symptoms.  Currently there is a Phase II clinical trial  for safety and efficacy for patients 12-45 years old with peanut, tree nut, fish, sesame, or shellfish allergy.

Let’s define Tolerance versus Desensitization.  Tolerance means that the food can be ingested safely despite long periods of avoidance.  Desensitization means that protection is dependent on regular ingestion of a food allergen.  If dosing is interrupted or discontinued, the protective effect might be lost or decreased.

Oral immunotherapy (OIT) is a desensitization process.  Small amounts of a specific food are mixed in a safe food and ingested in gradually increasing doses.  Dose escalation occurs at a hospital or clinic and then daily regular doses are continued at home.  This desensitization protocol has been successful in patients with milk, egg, fish, peanut and other food allergies.

From the medical literature some patterns have emerged: 10-20% of patients fail the initial build-up phase due to reactions; 10-20% do not achieve the full maintenance dose. So, overall 50-75% achieve and tolerate the recommended maintenance dose.  We do not know if those who use lower maintenance doses will become tolerant over time.

Humanized Monoclonal anti-IgE (Xolair) is currently approved as a treatment option for people with moderate to severe asthma.  It has also been shown to increase tolerance to peanut exposure, but the study was stopped early.

********Despite all the research many questions remain: Using anti-IgE and OIT together has not been studied yet.  Hypothetically, the anti-IgE should reduce the risk of reactions during the OIT procedure.  For OIT more studies are needed to determine the optimal build-up schedule, the optimal maintenance dose, ideal duration, degree of protection, efficacy at different ages, severity and type of food allergies, and the need for patient protection in patients treated at home.

My 15 year old son, Morgan, is currently receiving allergy shots/immunotherapy for his environmental and pet allergies. Would that disqualify him from ever participating in a research study if he were continuing to receive this treatment? Many of the kids (and adults) who are allergic to foods are also allergic to environmental allergens.  I do not think that allergy immunotherapy of environmental allergies will exclude Morgan or anyone from participating in food allergy research studies.

Would children in puberty not be good participants in a research study? Are there other criteria that would automatically disqualify a person? Clinical research trials are designed with specific inclusion and exclusion criteria.  These studies will have to be done in adolescents as well as very young children.  The only pitfall with the adolescent age group that I can think of is the issue of compliance.  If an investigator (the physician in charge of the study at a site) determined that a patient did not have the maturity to take medicines, pursue regular follow up visits and responsibly keep a short daily diary then they may exclude that patient from participating.  However, this is a rare occurrence and I don’t think it will prevent study of food allergy therapies in the adolescent population.

I have heard that 15 to 20% of participants in Wesley Burks’ research study of the ‘peanut flour’ have had to drop out of the research because of severe reactions. And that other children have had to drop out because of the onset of Eosinophilic Esophagitis. This seems frightening to me to subject a child to these possibilities. Yet there are those children who are now eating peanuts or drinking milk, who never thought that would be possible! How does a parent wisely choose whether their child should participate in a research study?

Each parent needs to collect information about the study and discuss it with their child. Next, they should discuss the study with their allergy doctor and the investigators performing the study.  Specific questions should revolve around safety precautions taken during the study especially at times when you or your child may be asked to eat one of your food allergens.  Desensitization protocols are not for everyone.  However, the process of build-up and maintenance dosing to their food allergens can be quite liberating for individuals and families who live in fear of severe reactions.

The complication of Eosinophilic Esophagitis (EoE) has been reported but this has not been a common problem with OIT.

Does your office participate in any of the research? If so which one(s)? We are not currently involved in any of the current research on food allergy.  These studies are limited to large academic centers.  Our research center is ready to go when the academic centers begin preparing some of their treatments for FDA approval and mainstream care.

What is the peanut desensitization protocol that your office is doing?

The peanut desensitization protocol that I am using in my office is based on the current protocols that have been published in peer-reviewed journals like the JACI.  I don’t call it “research-based” because we are not doing this in conjunction with any pharmaceutical companies or with the academic centers that have been doing research on this issue.  To my knowledge there are about half a dozen private practice clinics around the US that are doing the same protocol as I am doing.  Here, we have performed peanut desensitization on about 6 kids and one adult with fairly good success.  One child had a systemic reaction during the build-up phase and they dropped out.  The adult was doing very well, but had a systemic reaction shortly after going on maintenance.  He also decided to stop the procedure.  As I stated earlier, peanut desensitization is NOT for everyone.  I’ve probably talked about a dozen families out of pursuing it.  Recently I advised a family whose child has EoE not to do peanut desensitization due to the risk of  worsening the condition.

Thank you Dr. Danny!

 

Emotional Aspects of Food Allergies and Extended Family

Food allergies comprise much more than just a physical component. The emotional aspects of food allergies continue to rear up with each stage of development in a child’s life. Dealing with extended family members who may not “get it” can create strained relationships. With those family members who do understand, it’s so wonderful to have another advocate on your side! This month, my friend, Jenny Kales, of The Nut-Free Mom Blog and I are discussing our experience with our extended family and food allergies.

Nicole: When my son, Morgan, was diagnosed with food allergies at 18 months old (after having two severe reactions – one to touching peanuts, and one to his MMR shot) I was convinced that no one but me could take care of him! Yet, I quickly learned that my husband needed all the information about Morgan’s food allergies and how to operate the EpiPen. I also learned that our extended families needed to understand the change in food habits that would be required for Morgan to be able to attend family gatherings. My father immediately said that I was overdramatizing my son’s allergies and that I’d make him into an anxiety-ridden child! He began sending me research reports about how it would be good for Morgan to be around cats and dogs (two more of his severe allergens). My father had suffered from asthma as a child, and his own mother had babied him into his adult years. I began to understand where his comments were sourced, yet I didn’t give up on the need for my son to NOT ever be around his food allergens or pets. I continued to try to educate my father about food allergies and what would be necessary for him to do to be around Morgan.

Jenny: One thing I’ve found, both in my own experience, and from the experiences that people share with me, is that some extended family members have the philosophy that  kids can somehow “tough out” a food allergy or that a small amount of a food allergen helps cure the allergy.  You are going to find all sorts of opinions that conflict with what you need to keep your child protected.  I remember one Thanksgiving (at my in-laws) where one of the kids at the table wouldn’t eat the dinner, but wanted a peanut butter granola bar instead. Everyone asked me if that was “OK.” The child in question was sitting right next to my daughter and while I don’t believe that every food allergy risk can be eradicated in life, I believed that my daughter had a right to a comfortable Thanksgiving meal and I said “no, that’s not a good idea.” That was just one incident where I was on the spot and felt that others were humoring me;  they didn’t really believe that food can be a threat to a child.  Over the years, much of this has improved but I still feel that I’m being humored at times, especially when it comes to restaurants or when I don’t allow my daughter to eat baked goods from a bakery. There will always be family members who think you’re limiting your kids unnecessarily.  I’d love it if my daughter could have the freedom to eat whatever she wants but the reality is that she can’t or her health is at risk. You need to develop a thick skin and also a sense of what your bottom line is, i.e. making good choices for your child’s health.

Nicole: Oh those holiday meals! I can remember one Christmas when Morgan was not yet 5 years old and my husband’s entire family had a get together. It was three families, plus my mother-in-law, which totaled 6 kids and 7 adults. I had asked family members to please not bring any of his food allergens to the Christmas Eve dinner, (which at the time were peanuts, tree nuts and shellfish.) The dinner was not at our house. My mother-in-law just couldn’t live without her crab puffs on Christmas Eve, so she said she made them with artificial crab meat! I was very hurt, and couldn’t understand why she wasn’t able to forego her crab puffs just that year. I was still concerned about cross contamination in the manufacturing process, even if it was artificial crab meat! Then a neighbor showed up with nut covered brownies for everyone to share, and while I requested for my husband to deal with this, they still got eaten in our presence. We had prepared Morgan’s food separately, yet we still worried about all the food allergens in the house, and I didn’t feel comfortable causing a scene, packing up and leaving for home. It wasn’t a pleasant Christmas Eve experience for me. From that year on we have always had Christmas dinner at our house where we can monitor and prepare all the foods. It’s a small price to pay for peace of mind. The good news is that now, some 10+ years later, my in-laws are very concerned about food allergies and Morgan’s safety. At my nephew’s high school graduation party last May, I received a phone call from my brother-in-law ensuring that what he was preparing was not going to cause any issues. He knew that Morgan would be bringing his own food, but he wanted to ensure Morgan’s safety to the utmost! Nothing like education and awareness…and patience on our part!!

How do you deal with the preparation of holiday meals? What about location of the festivities?

Jenny: I like to be able to cook for the holiday meals as much as possible and by now, everyone understands this and welcomes it because fortunately, they like my cooking! J When we do eat at someone else’s home, I have a hand in the ingredients and cooking as well. I always bring dessert, too. I have to say I have a very short list of people that I think truly understand how to cook for my daughter. As the years have progressed, I do think that people in my family have gotten used to dealing with food allergies at holiday meals. However, since we are so careful and we have not had a lot of repeat reactions in recent years, sometimes others might think that the risk is somehow lower. They don’t realize how much effort goes into preventing a reaction. When it comes to holiday parties that are not hosted by close family members, all bets are off. We usually just bring something to the party that we know my daughter can eat and sometimes she might eat before or after. It’s really important to keep reiterating to extended family members (or friends) that we don’t think you have an “unclean” kitchen or are deliberately trying to harm anyone.  It’s truly difficult to explain cross contact to people. Another thing is that food is extremely tied to emotion and tradition, and this especially true at the holidays. So I try to understand that not everyone will want to or be able to provide a complete menu that is OK for my daughter’s allergies. We will work around it as best we can because we also try to emphasize that family traditions are not only about food, but about spending time together and other non-food activities. However, if we’re not sure about a food, my daughter doesn’t eat it. That rule stays firm wherever we go.

Nicole: It sounds like you have more comfort with others cooking for your daughter than we have for others to prepare foods for our son. I’m not saying that’s a bad thing at all! I think that’s probably a learned thing for your daughter. Morgan is really uncomfortable with anyone cooking for him in our extended family – and I know he learned that from my husband and me. He’s especially concerned with any foods that he might be allergic to being served because of the chance of a spoon or spatula being used in one of his safe foods. He’s grown accustomed to showing up places with a cooler full of safe foods for himself. There’s several different ways to deal with a child’s food allergies in family gatherings. The best way is what brings safety and security for your child!

Jenny: I am actually really cautious about letting others cook for my daughter and I certainly want everyone reading this to be cautious as well. It’s so important. Let me clarify—when I say a short list of people who we trust, I mean maybe two people. And even for those people, we go over all the steps, cleaning, cross-contact, etc.  Usually I’ve got a hand in at least some of the cooking, so I see what’s going on in the kitchen. These “trusted” people are also not likely to have the allergens in their homes in the first place. For example, my sister (my daughter’s aunt) never buys peanut butter any more.

When I say that we work around it, I mean that we will just bring our child her own meal if there is any risk involved in eating the food. Usually people are very accommodating to us, but ethnic traditions play a role. For instance, one side of my husband’s family is Greek. Nearly every Greek cookie or cake either contains tree nuts or came into contact with tree nuts; baklava is one example. It’s nearly impossible to eliminate these desserts off of a celebration or holiday menu, because of the strong cultural ties. Sometimes we might go to an event but bring Alex a separate meal or side dishes, etc.  You can’t be shy about refusing potentially unsafe foods since avoidance is our best weapon against reactions.  We’ve probably offended some good cooks along the way without meaning to. Certain cultures equate food with love and that is especially true for Mediterranean cultures!

Nicole: Thanks Jenny for sharing your experience with extended families and food allergies. There’s many ways to enjoy the holidays – and enjoyment is the key!

 

Halloween & Food Allergies

Managing food allergies and Halloween isn’t always easy, but we have found ways to have fun. Since it’s a holiday immersed in food, it’s easy to become overwhelmed and want to not participate at all. Our son never allowed the thought of not trick-or-treating to enter his mind! Therefore, we learned how to handle the holiday and keep him safe too. Here are some of our ideas to enjoy Halloween and also to keep it safe!

First, have your child choose a great costume. The dressing up part was most of the fun for my son. The candy was an afterthought. We’ve made costumes and allowed him to be a part of this so that he can get really excited for this part of Halloween.
We have read The Food Allergy & Anaphylaxis Network (FAAN) book, “Alexander Goes Trick-or-Treating” many times. This is a good book to begin discussing ways to deal with Halloween and food allergies. (This book may be purchased online by visiting the FAAN website here.)

My son usually had a Halloween/dress up party at preschool and elementary school for which he always brought his own snacks. Some of these parties were elaborate events with a huge amount of food brought into the classroom. This is where I found that being a Room Mother was vital! I was able to help plan the party and ensure that only safe foods were brought in. Also, I attended the party to ensure that nothing unsafe was brought in. You’d be surprised how many parents have forgotten about nut-free snacks being required in the classroom by the time Halloween comes around. We learned to ask the teacher to send out a reminder notice prior to the party day asking for only nut-free food to be brought in. Letters at the beginning of school regarding a nut-free classroom can be but a memory to parents who don’t deal with food allergies daily.

As my son aged, we found many teachers were no longer willing to have a bunch of sugary snacks brought into the classroom at 9 am for kids to gorge on before lunch. We had many teachers give guidelines for the snacks such as only one sugary treat, and everything else had to be fruits or vegetables! Boy did we love that kind of teacher! I never trusted even the most well-meaning parent to bring in safe food for Morgan. Cross contamination in their kitchen could occur, even if they were supposedly making a safe treat. We always provided Morgan’s food for these events, or I brought the foods for the party and showed him which ones he could eat.

The rest of the class had nut free snacks that another parent provided. I have brought special treats for my son to pass out to his friends from Vermont Nut Free Chocolates or from one of the other safe allergy food companies listed on our site here. It was very exciting for him to have candy that he could enjoy too. This especially helped in the preschool years.

For Trick or Treating, we purchase only food that he can eat to give out at our door or we give out mini-Play-Doh or plastic rings and spiders. When he was younger, and we would go out trick-or-treating through our neighborhood, he would occasionally ask for a nut free snack from a neighbor! Most of the time people thought that was cute, and didn’t really understand. We’ve asked him to just say thank you regardless of the food he receives. Our agreement has always been to not eat ANYTHING until we get home! I know of some food allergic families who will give out safe candies to their neighbors and tell them what costume their child will be wearing so that only safe foods will be brought home. This can work great especially if you know your neighbors well!

Once home, we pore over the candy he receives and begin to put it into piles. The candy that we know has nuts in it goes into the pile to give out to other trick-or-treaters coming to the door. In this way, this candy doesn’t stay in the house where an accidental mix up can occur. Added to this pile is candy that he doesn’t like, and candy that doesn’t have a label on it. If we don’t know the candy and it doesn’t have a label on it, we don’t allow our son to eat it. What is left over is the candy he can eat. This is candy or treats that we know are safe. Raisins and Dum Dum lollipops were some of his favorites as a little boy. There usually isn’t much candy in this “safe” pile, so I allow him to exchange some of his candy for safe treats or pennies/nickels/dimes that I have on hand or other safe candy. Be especially careful to read labels on all candies. Some ‘regular’ size candy bars are safe, but the Halloween size ones are manufactured in a different facility and therefore may not be safe.

My daughter doesn’t have peanut allergies; however most years she gave away her peanut candy also. She felt better doing this, and we allowed her to make her own decision. We kept her candy separate, with her name on it in a separate cabinet from my son’s candy. For any candy that she kept that could cross with peanuts in the manufacturing process (such as M&M’s), we ensured that she ate these outside of the house.

This year, with Morgan in 10th grade, there won’t be any Halloween parties at school and therefore no extra foods brought in. The kids are allowed to wear costumes, but the day isn’t centered on parties. I must say it’s a welcomed relief to have him in high school!

Remember that Halloween is just one day, but vigilance is required. Make sure to discuss with your child what your expectations are about foods brought into his/her classroom. Discuss a plan for the day and what you expect in terms of your child eating safe foods at school parties. We found that talking about scenarios prior to the day helped Morgan to deal with the unexpected like unsafe foods brought into the classroom.

I also had already cleared with the teacher that if an unsafe food was brought into the classroom that he/she would deal with the parent and ask that the food be taken back home. A parent’s hurt feelings are preferable to a child going into anaphylactic shock!

Overall, try to have a fun day!

Emotional Aspects of Food Allergies at School

Food allergies comprise much more than just a physical component. The emotional aspects of food allergies continue to rear up with each stage of development in a child’s life. A child in preschool might not notice receiving a ‘safe snack’ from their snack bin; while an elementary child will wilt at the teacher giving them something different to eat. A middle school child might rebel against food restrictions, while a high school age child may go further and tempt fate by eating one of their food allergens. My friend, Gina Clowes, of AllergyMoms, and I have had multiple conversations about the emotional piece of the food allergy diagnosis. Below is just a piece of what we’ve experienced with our children at school, and our hope that our children can overcome these sometimes difficult situations to better understand their food allergies, yet not be defined by them.

Nicole: When my son, Morgan, started preschool I was pretty emotional about him leaving me for even a few hours twice a week. I’m sure many parents, especially mothers, feel that way if their child hasn’t been in daycare.

Morgan had been at home where I could carefully control his environment and monitor his severe food allergies (peanuts, tree nuts, sesame, fish & shellfish), his eczema, asthma, and severe pet and environmental allergies. I was so upset when looking for a preschool (this was in 1999) that every private preschool that I interviewed in our city (Colorado Springs), wouldn’t admit our son. They either didn’t want the liability of a child with severe food allergies, or they said they weren’t willing to be trained on the EpiPen.

I never thought that I’d receive that response. I figured that if I trained the staff how to administer an EpiPen, and if they kept his allergens out of the classroom, he would be safe at school. I didn’t want to fight for my child to go to a school that didn’t want him to attend. Instead we found a public preschool that provided everything we wanted, and it was a wonderful experience for him and for me. Morgan was always fine to have his own snack that was different from the others in the classroom. He knew it was a safe snack, and he felt included.

I had to mature emotionally in order to advocate for my child – asking for just what he needed and not more.

Gina: The first year my son attended preschool, I did things the way many allergy moms had done before me. I explained my son’s allergies and trained the staff on avoiding, recognizing and treating allergic reactions. He had his own snack every day and for birthday celebrations, the other parents were supposed to let me know a few days in advance of bringing a treat, so that I could bring something similar for my son.

One day, I arrived to pick him up a few minutes early and I peeked inside the classroom. I saw 15 kids laughing and devouring beautifully decorated cupcakes piled high with icing and sprinkles. My son sat there looking forlorn eating wheat-free pretzels and drinking spring water.

Something clicked in me and I wondered how a teacher would think it was okay to serve 15 three year-olds and leave one sitting there.  How can it be a celebration when one child is excluded?

When I talked with other allergy moms, I found out that a lot of them tackled this (birthday exclusion) issue with the “safe snack box”  When I first heard of this, I thought it was an appalling option. I call it the “We’re-planning-ahead-to-exclude-your-child-box.”

It’s one thing for our kids to have to bring their own treat to a friend’s birthday party or to a relative’s house for a holiday. To me, that is understandable. But school is for learning. And if a teacher or school administrator decide to allow children to celebrate birthdays or other holidays at school, I believe these celebrations should be inclusive.

Imagine a video of one allergic child from kindergarten through first grade, second, third, fourth, fifth…dozens of birthdays over the years..where the kids look longingly at the delicious cupcakes being passed around and there is that same child who cannot partake. How can anyone think that is okay?

So, I’ve never sent a safe snack box to school for celebrations, and I feel so grateful that my son has been included in safe celebrations.  However, I have softened my stance over the years and I do realize that what works for my family may not be what  works for others. If parents and their children feel happy with the “Safe Snack Box” option, I’m happy they’ve found something that works.

Nicole: My son never had upset by eating a treat that’s different from everyone else, and I guess I’m lucky that he didn’t!

He has always viewed it that his snack is safe, and that makes it the best food in the world! When he went to camp during his 6th grade school year – a ‘rite of passage’ with all 6th graders in our school district – he brought his own safe food rather than rely on the camp cafeteria to cook for him. So many of his classmates were envious of how wonderful his food looked in comparison to theirs! They begged him to save them just a bite or two!!

Gina: The other issue is that this situation (birthday cupcake celebration), is a school activity regardless of who brings in the treats. Teaches and/or administrators make the call as to whether to serve the food or not.

If I declare the first Tuesday of every month, “Spaghetti and meatball day” and decide to serve that to the class, I think they’d turn me down! lol

We need to get away from the thinking that “we” (allergy moms) have to convince other classroom parents to include our kids or keep them safe.

That may be the case for playdates, but this is school.

Children with food allergies have a right to be included at school.

Most schools have a policy that students can only give out birthday invitations in the classroom, if they are going to invite all of their classmates. Understandably, the teachers don’t want any students to feel excluded.  But clearly, when in-class birthday celebrations occur and everyone is sharing cupcakes except you, you’ll feel left out.

And there are many, many reasons for restricting food or foods from the classroom anyway. We have a nation where 63% of adults and now 35% of American children are overweight or obese. Let’s find a healthier way to celebrate!

Nicole: Another emotional aspect of food allergies at school that we have found is the potential for bullying. It seems that some children are just looking for how to make others feel inferior, and sadly food allergies makes a child such an easy target! And some parents I have dealt with have their own methods of bullying too!

My son’s bullying experiences have been taken very seriously by the school administrator(s) and immediate and decisive responses have been given toward the bully. In fact, the first incident where a child bullied my son was in 1st grade. He threatened Morgan with a peanut butter cracker saying, “I’m going to kill you with this cracker!” Morgan didn’t take the incident very seriously, yet his friend did and reported it to the playground monitor. The offending child was hauled into the Principal’s office, his parents were called and he was suspended for the rest of the day! It was a decisive move, and I really appreciated the Principal taking swift action. The wonderful thing is that today Morgan and this boy are good friends! And they don’t even have to talk about the incident anymore.

I didn’t get into the middle of the incident, and never felt the need to discuss this little boy’s actions with his parents. I allowed the elementary school Principal to do her job, which allowed me to work on forgiveness – which is very difficult when someone threatens your child! And it also allowed me to see how our school district needed guidelines for severely allergic students to assist schools to deal with situations like this.

Gina: Regarding the bullying issue, both of my kids have been bullied at different various times. It’s never fun for a parent to have to deal with this but when you know your child is vulnerable medically, it’s even more disturbing.

I agree with you though that some of this starts with the parents. And that is why I think it is important for allergy parents to really become informed so they can truly advocate for their child. And you can still do this nicely.

A lot of times, teachers will ask the allergy parent to write a letter, or speak in front of the classroom asking them not to send in a particular food or to please consider bringing something safe for the allergic child.

I think this approach sets the wrong tone. It perpetuates the notion that accommodating allergic children is optional or that it is up to the other classroom parents.  This is a potentially life-threatening medical condition and if accommodations are required, they should be implemented. It should never be left to the good nature of other classroom parents.

So before I dismount from the soapbox, let me say that I also really believe in the adage “If it ain’t broke, don’t fix it.” I know parents who have taken a completely different approach from mine, and it’s worked beautifully, and that’s terrific.

Nicole: Thanks Gina for a great conversation about just a few of the  emotional aspects of food allergies in schools. It’s emotional for parents and for children with food allergies. Together we can help our children grow into capable advocates for themselves!

 

The 504 Plan – Is it Necessary?

There are many schools and school districts that have guidelines or policies for severely allergic children. Some states have mandated these policies; other states have provided guidelines for schools to follow. If you’re interested in this type of legislation, please click here. There is a Federal law – the Americans with Disabilities Act – that can provide coverage for your child with life threatening food allergies regardless of where you live in the USA. Every entity that receives public funding (therefore generally not private schools) must adhere to the ADA.

The Asthma and Allergy Foundation of America states,  “The ADA borrows from Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability in employment and education in agencies, programs and services that receive federal money. The ADA extends many of the rights and duties of Section 504 to public accommodations such as restaurants, hotels, theaters, stores, doctors’ offices, museums, private schools and child care programs. They must be readily accessible to and usable by individuals with disabilities. No one can be excluded or denied services just because he/she is disabled or based on ignorance, attitudes or stereotypes.”

The Section 504 Plan in an educational setting stipulates the accommodations your child with food allergies will need in order to safely attend school and participate in activities. This plan will generally be created with a group of administrators and you, the parents, in attendance. Many school districts have 504 administrators who oversee such plans. The school principal, school counselor, teacher and parents are also frequently participants.

This plan is legally binding. Beyond that, having a written plan of accommodations ensures that there is no confusion as to the exact steps that need to be taken to keep your child safe and included in as many school activities as possible.

Some schools will be apprehensive to create a 504 Plan for a food allergic child and will want to only agree to a Health Care Plan. Our experience was that our son was too often asked to not participate in school activities, whether it was in the classroom or a field trip, because of his food allergies when he started elementary school. We wanted to ensure his inclusion in all safe activities, or for the teacher to find an adequate substitute for the entire class. A 504 Plan ensures that a child with a disability is included in the activities as much as possible, whereas a Health Care Plan didn’t cover the exclusion issue. We therefore asked for both a 504 Plan and a Health Care Plan.

You will want to have the 504 Plan in place BEFORE the school year starts. Ensure that every teacher who will teach your child has read this plan, and is aware of the specific accommodations.

We rewrite the 504 Plan on an annual basis in the spring. This allows next year’s teacher(s) to be brought into the meeting. We review what went well during the school year, what problems we had and what needs to be changed in the 504 Plan for the upcoming school year. Our son always participates in these meetings.

The Americans with Disabilities Act was amended in 2008 to include eating as a major life activity. Therefore, obtaining a 504 Plan for your food allergic child should no longer be as difficult to obtain. You can read the new amendment to this Act here.

Does every child with food allergies need a 504 Plan?    No, not in my opinion.

In our school district of 23,000+ students, there are approximately 600 with life threatening food allergies (indicated by having a prescription for an EpiPen). Only 10 of these students have a 504 Plan. Why is that? Our school district has a policy and procedures for dealing with students with severe food allergies. Additionally, the district has guidelines for the parents, student, teacher, school nurse, administration, transportation and cafeteria to follow. Most students will have all their needs met with these layers of protection. However, for students who have a history of severe reactions and/or contact and inhalant reactions, and/or have severe peanut or tree nut allergies (indicating more likely to experience anaphylaxis), in addition to eczema and/or asthma – an added layer of awareness is necessary. Those are the students who have 504 Plans.

I recognize that our school district is certainly not the “norm.” If your school district does not have any guidelines, policy or procedures for students with food allergies, then you will likely not only want, but need a 504 Plan to ensure your child is included in all activities with the highest level of safety.

In Morgan’s Corner below, Morgan explains his experience with 504 Plan specifics. We feel it is very important to include him in all 504 discussions so that he knows the ‘safe adults’ in the school building. He also knows what is expected to keep him safe, and that has been extremely important in situations where the 504 Plan was not followed – accidentally.

We have never had to involve a lawyer to get our school to provide a 504 Plan. Our allergist listed out what accommodations would be necessary for Morgan to attend school in a letter, and the school district agreed that a 504 Plan was necessary. When there has been an issue about the plan not being followed, we’ve had an immediate meeting with the Principal to discuss what actions should have been taken. The plan has been updated or reiterated, and thankfully no serious allergic reactions have been the result of the error. The 504 Plan has allowed us to separate out the emergency actions, which are iterated in the Health Care Plan – with the accommodations which are listed in the 504 Plan.

We’ve found benefit in having both, and Morgan continues to have both in high school.

Morgan’s Corner: The Importance and ‘Evolution’ of a 504 Plan and Meetings

As school starts, accommodations start entering our minds. Dealing with school and all the food related issues can seem complicated and challenging, but it’s not!

Section 504 of the American Disabilities Act allows people with a disability that can impend on a learning environment (in our case, food allergies) have a plan for accommodations- a ‘504 Plan’. It is not the same as a Health Care Plan – I do have both.

I have had my 504 Plan since Kindergarten. It has helped me stay safe in school- from having staff and kids wash their hands to having a peanut-free zone during lunch. My 504 Plan has helped me stay safe and healthy throughout all of my school years.

A 504 Plan allows you (or your child) to have accommodations in school. This ranges from everything- I’ve had no pet policies, training of the staff on EpiPens, and no-nut zones at lunch and in my classroom(s). Of course, I’ve had help along the way to create guidelines and keep me safe at school.

Over the years, my 504 meetings have changed dramatically. A 504 Meeting is an annual meeting that occurs with your counselor or other staff member (such as your principal), yourself and/or your child. It is required by Section 504, as every year you can revise accommodations placed in your 504 Plan. I’ve always participated in my 504 Meetings, ever since Kindergarten. Back then, I would sit there and listen, and my mom primarily led the meetings.

As I grew older, I started to participate more- adding comments, responding to questions, etc. In 8th grade, I led my first 504 Meeting.

In my case, I have two ‘504 Meetings’- one at the beginning and end of the school year. At the end of the year, I go over (with my mom) the accommodations laid out in my 504 plan with my counselor. We take out some policies, revise some, sometimes even add more- it all depends on what was needed in the past school year and our vision for the future. The one at the beginning of the school year is the more ‘important’ one- I meet with my teachers for the next year, train them on the EpiPen, and discuss policies of food in the classroom.

In 9th grade, all but one of my teachers applied a ‘no-food’ policy- which worked out just fine. Certainly, there were incidents where people brought in food, but for the most part, it didn’t happen. Most of the food brought in anyways was safe for me to be around. Even in the classroom where food was allowed (but not my allergens) worked out fine. Most of my classmates are very aware, so it usually always works out fine.

Over the years, my 504 Plan has been a very important part of my school life. It allowed accommodations to make me feel safe in school. Over the years, it has allowed my self-advocacy to arise, yet still assist me in food-related issues, especially in high school.

Morgan

 

Bullying children with food allergies

In the recent CNN article, Food allergies make kids a target of bullies, statistics were given that about 35% of children over the age of 5 with food allergies have been bullied, teased or harassed. There has been a lot of press on bullying recently, and this particular research published in the Annals of Allergy, Asthma and Immunology brought it closer to home for us.

Our school district defines Bullying in their Policy as follows:  Bullying is defined as any written or verbal expression, physical act or gesture, or a pattern thereof, that is intended to cause distress upon one or more persons in the school environment. Direct bullying can be physical in nature, such as hitting, kicking, pushing, or choking. Or, it can be verbal, such as name-calling, threatening, teasing, etc. Indirect bullying is subtle and may be difficult to detect, such as social isolation, intentional exclusion, making faces, staring, obscene gestures, manipulating friendships, etc. Bullying may include an imbalance of power between the bully and the victim.

Our son was thankfully bullied only a few times in elementary school, and not at all in middle school or high school. I’m sure it has helped that we’ve lived in the same community for 17 years, so Morgan has gone to school with the same children since kindergarten. These kids have been aware of his food allergies for years, and most have been very caring and compassionate about bringing in safe foods.

I feel it’s important to share the specifics of the bullying instances to help other parents be aware what our school district felt was inappropriate behavior that needed to be immediately stopped. The first instance occurred in 1st grade when a little boy chased Morgan around the playground after lunch saying he had a peanut butter cracker and “I’m going to kill you.” Morgan didn’t even take the child seriously because he knew the boy was emotionally immature, and he wasn’t sure the boy even had any food in his hand. A friend took Morgan to the playground monitor to report the other child’s behavior! The playground monitor immediately sent the bullying boy to the office whereupon the Principal called the parents and the child was suspended for the rest of the school day. This impressed upon everyone the seriousness of food allergies and that food should never be used as a weapon. Since Morgan was the first child in the school to have such severe and multiple food allergies, this set the tone for the rest of the families. The good news is that this little boy (who’s now a big boy!) is now very good friends with Morgan. They put this issue aside, and our families have moved on to become good friends too. They are now some of the biggest advocates for keeping Morgan safe in their home!

The second instance of bullying occurred when a child tried the same behavior on the playground, however because of a language barrier his parents didn’t understand the implications. He wasn’t suspended as far as I know. He too had some emotional issues. Later in the school year, his parents brought in sesame snacks to celebrate the Chinese New Year and had to once again be reminded that this was a severe allergy of Morgan’s and the snacks had to be sent home. This boy ended up in my husband’s Cub Scout Den, so the family got a close up lesson about food allergies. We all ended up being friends in the end!

The last instance occurred in 4th grade when a boy sat at the Peanut-Free lunch table at school with a Butterfinger candy bar and wouldn’t move. Morgan tried to get the boy to move to no avail. He then enlisted the Principal to assist him, because she happened to be in the cafeteria at the time. The Principal took the boy to the office and contacted his father. Morgan came home to tell my husband and me about the story, and my husband called the boy’s father to discuss it since the child was in his Cub Scout Den also! The father was furious that his child was being singled out for this behavior and thought that nothing inappropriate had been done! Thankfully, the school had already warned the child that sitting at the Peanut-Free Zone table with non-safe foods wouldn’t be tolerated in the future and it never occurred again.

Since these instances, Morgan has never been bullied again. Morgan is forthright about his allergies when the information would be helpful for others to know. It helps too that he’s very tall and towers over most of his classmates and older students! Regardless, the Principal in each of the situations acted swiftly and decisively which set the tone that bullying behavior with food would never be tolerated.

I believe that most school districts have a bullying policy in place. Read through your school district’s policy! It helps to see what they determine to be inappropriate behavior.

If inappropriate teasing, harassment or bullying does occur, encourage your child to talk with an adult immediately. We’ve continued to have conversations with Morgan about the potential for nasty comments from his classmates, just to keep us in the loop about any issues. He’s been very willing to share with others about his food allergies – not to be called ‘Allergy Boy’ but rather to be a self-advocate to ensure his safety. There’s a fine line between sharing the appropriate information and setting oneself up for teasing. A good school policy helps to support this balance.

 

Food Allergies in Culinary Arts School

Ari, how old are you and what are your allergies?

I am a fair young maiden of twenty-one and a half. Just kidding, that’s super old. Anyways, I’m a legal adult, and I have allergies to peanuts, tree nuts, soy, fish, shellfish, mustard seed, sesame and nigella seed. Whew. I’ve also got a handful of intolerances and sensitivities, like gluten, poultry, eggs, eggplant and milk.

I think I remember reading that your allergies appeared “later” in life. Can you tell me about that?

Oh, geez. Yeah, it all started when I was nineteen. I LOVED nuts. Almond butter, chocolate-covered peanuts, anything amaretto-flavored. I used to eat fruit and nut bars every morning for breakfast. One day, I had a cherry raw bar while waiting for the train to get into Manhattan. By the time I had gone under the East River, I was bright red, covered with hives and couldn’t swallow. Needless to say, I hightailed it to the doctor that day.

From there came every couple of months, a new food allergy or intolerance. Since I’m such a food nerd, I remember each dish that began this discovery of my issues: it was a bagel when I discovered gluten; a shrimp summer roll with seafood; halvah with sesame; quiche for the eggs; Thanksgiving turkey for the poultry; a red curry with all the seeds, and pad Thai with soy. I’ve always been a milktard, though.

It’s kind of weird for me because I still crave these things. I haven’t had sesame chicken or bouillabaisse in three years. But, I don’t let it get me down….I find ways to get around my cravings for things like pasta alfredo and peanut butter fudge. And that’s when you see me doing crazy stuff with nutritional yeast and sunflower seed butter on Food for Dorks.

Have you ever experienced anaphylaxis? If so, what were the circumstances? If not, what type of allergic symptoms have you experienced?

Ahhh! Anaphylaxis is so scary. I’ve definitely gone through it a couple of times. One particular time sticks with me. I was eating lunch on my break at work. A shrimp roll from Dean & Deluca. I’d never ever had a problem with seafood before. About two minutes after eating the whole thing, I threw up all over my co-worker. In the break room. Yeah, I know. Apparently, I turned purple, and my manager had to stab me in the leg with my EpiPen. We have a special bond now. I think. Mostly, I remember fading in and out of sleep at the hospital and waking up with a deflated tongue. No longer was I crimson colored, now I was back to being pale & pasty.

I’ve had other non-anaphylactic reactions, too, though. Standard itchiness, nausea, dizziness, you know, the usual. Boring in comparison to your body throwing a riot over Vietnamese food. But, still annoying.

My son, Morgan, was very impressed that you went to a culinary arts school. Which one did you attend? How did they make accommodations for you?

Tell Morgan thanks for me, will ya? I attend the Institute of Culinary Education in New York City, and graduate in October. The instructors were pretty accommodating, I guess. They don’t force me to do anything I don’t feel comfortable doing. One really cool thing is that the instructors let me use alternatives for allergens, like soy-free margarine, coconut aminos (a soy sauce alternative) and Daiya cheese. I definitely get made fun of whenever I wear my mask during lessons where we cook something I’m allergic to. But, whatever. I don’t let it get to me. At all. I’m there to learn– not only how to cook, but to master gourmet dishes and techniques so that I can provide y’all with tasty treats and recipes! Oh, and I would absolutely recommend that everyone should take a cooking class at least once. It will greatly improve your quality of life.

Please tell me about Food for Dorks. Where is your blog located? Are you on FB, Twitter, elsewhere, etc?

Food for Dorks is my lil’ blog baby. It’s a lot of fun for me. I’m honestly just sharing what I love doing with the rest of the world. Maybe it’s trite, but reinventing cuisine that is all-inclusive is a true art. Food for Dorks has allowed me to share my art.

But yeah, I love being able to share recipes, reviews, articles and general culinary insight to the rest of the glutard and peanutard world.  We’re definitely not hard to find. Pretty much everywhere on the internet. Like us on Facebook, tweet us at @foodfordorks, follow us on tumblr, visit the website.

Are you still in school or out in the work world? How do you manage working with food every day?

Still in school! I was kind of fed up with regular school, and I liked cooking. I’m also an angsty twenty-something. Add those up all together and you get a gap year of culinary school. It’s like a Julia Roberts movie, or something. I also have a job, but it’s in technology. Yep, I’m a full on nerd-dork hybrid. Food isn’t that scary to me; you just gotta know your strengths and your weakness, and most importantly, you have to know yourself. Only then can you proceed with confidence.

Many parents are concerned about their child with food allergies dating. Tell me about how you manage this.

I laugh a little when I think about my dating life. Not just because I’m single. There are issues that I think concern anyone affected by food allergies when dating, and that’s telling your date about them, and then the whole kissing thing. Here’s my advice to your offspring:

On the telling your date about food allergies thing, don’t make it a big, awkward deal. It’s not a big awkward, deal. It’s just who you are. You can’t eat shellfish, so Japanese food is out. Done. Have Tex-Mex instead, or do something without food. Parks, museums, bike riding, there’s a lot out there to do.

If you’re like me, with a bunch of allergies, just own it. If you do go out to eat, and your date orders something you’re allergic to, just remind them politely to wash their hands after. They’ll learn their lesson about eating your no-no food around you when you decline their kisses.

And on that note, the kissing thing.  Oh, my gosh. I had a boyfriend once that forgot to tell me he had a Snickers bar before seeing me. Of course we made out, and then, of course, I promptly broke out in hives.  Besides him being a bonafide idiot, he learned a lesson: be mindful! I made him do my laundry the next day. Don’t worry, I dumped him eventually.

Basically: don’t date dummies, and ask. Don’t ever be afraid to ask your date if they’ve eaten something you’re allergic to. If they can’t remember what they’ve had to eat within the past eight hours…don’t date them. Oh, and one last thing to remind your kid about dating, in general: if someone’s going to be a jerk to you about your food allergies, onto the next one. Seriously. Only date people that care about you. That includes your dietary restrictions.

Is there anything else you’d like to add?

If your child is ever down about their food allergies, wants dating advice, or just wants someone to look up to that understands, please, by all means, don’t hesitate to contact me. I can definitely play pen pal if your kiddo needs a big sister. That’s foodfordorks@gmail.com.

Same goes for you too, Mom and Dad!

And, if you have any requests for cuisine, holla at yo’ girl. I’d be happy whip up something for ya.

Thanks Ari!

 

Eczema: The Itch that Rashes

Living with food allergies and eczema has become quite normal for our family. Our son, Morgan, is now almost 15 years old and has lived with food allergies his entire life; however his eczema is our ongoing battle.
From his first few months, Morgan had severe, weeping eczema across his body. It was everywhere – behind his knees, on his hands and feet, and even behind his earlobes. His skin was constantly infected, and I coated him with lotions and over the counter steroid creams to not much avail.

Morgan’s eczema was helped by using Eucerin® lotion in the paste form, and by sparingly using Elocon® lotion (a steroid) when he was an infant. The Eucerin® is almost the consistency of lard.  Wal-Mart sells a generic brand of this that costs about 1/2 the amount of Eucerin®, and we’ve found it to be equally as good.  We slathered it on him every night.  When he was a baby, we applied it every time we changed his diaper.  The Elocon® lotion is a steroid cream, so we tried to use it only when his eczema got very severe.

The eczema moved around his body as he grew older, but it has never entirely disappeared.  For a while, he had one finger that regularly sported an eczema spot if he ate any food with food dyes!

The use of heat in the winter time dries out his skin, as does swimming in chlorinated water in the summertime.  So, there isn’t a season where he gets a break.  If we forgot to use the Eucerin® paste, his eczema would crack and fissures would form.  He has been put on antibiotics, which ended up curing the fissures.  However, we tried to not allow the eczema to get this out of control.  The Elocon® lotion will sting if put on eczema with fissures.  He would cry in pain which hurt me almost as much as him – and made me more aware of staying ahead of his skin problems.

Morgan’s eczema gets worse when certain foods are added to his diet.  We notice that processed foods with yellow and red dyes made his skin much worse, so we removed these from his diet entirely when he was young.  This helped the eczema to disappear, yet it would amazingly reappear for no apparent reason. When he was a baby he was severely allergic to eggs; when this allergy disappeared, we started feeding him foods containing eggs, only to find that his eczema flared up.

We live in Colorado Springs, which has hot, dry air in the summer.  However, combining the heat with sun lotions is a recipe for disaster.  We use titanium dioxide sun lotions since they seem to be kinder to his skin.  Certain fabrics such as nylon bothered his skin when he was younger, creating eczema-like blotches.  Long ago, I began using laundry soap that is free of all dyes and perfumes.  None of this cures his eczema, but it helps it to not become worse.

Now that he’s a teenager, he’s responsible for taking care of his skin. As with most teenage boys, hygiene is a difficult daily practice! For a while, the prescription medication Singulair® cured his eczema completely. Now it doesn’t work at all. Since he started allergy shots his eczema seems to be worse, yet he is also in the middle of puberty. Our allergist had told us that some patients experience worsening eczema with allergy shots, yet his environmental and pet allergies are much better. It’s a difficult trade off!

When he has a bad eczema breakout, we have begun wet wrapping his skin with CeraVe® moisturizing cream and Fluocinonide steroid cream. (He also takes an antihistamine, such as Xyzal or Zyrtec once a day.) We apply the steroid first, then the moisturizing cream and then hot, wet gauze to wrap his skin sealing in the moisture. Adding socks or ace bandages over the top insures the gauze stays in place. Keeping the wet wraps in place overnight helps the worst eczema spots. Twice a day wet wrap treatments can do wonders for his skin!

There is a prescription drug called Elidel or Protopic that is for severe eczema sufferers.  Our allergist didn’t think that Morgan’s eczema was severe enough to warrant such a treatment.  However, if your child is really suffering – you might want to discuss this with your allergist. There have been FDA warnings regarding this drug that you might want to read here first.

We feel like detectives on most days, attempting to find the cause of the eczema. It might be food related, contact related (such as grass or clothing articles) or none of the above. We would love to find the magical cure to make his eczema disappear. In the meantime, we’ll keep searching for what works for today to ease the itch!

 

 

Interview with Gina Clowes, AllergyMoms

Gina, could you please tell me your practice name, how long you’ve been in business and how a potential client can reach you online or by telephone?

AllergyMoms LLC.  I have been in business since 2006. I can be reached at gclowes@allergymoms.com or (724)432-3811.

I help parents adjust to life with a child who has life-threatening food allergies.

I am a food allergy educator, speaker, certified life coach, and author of the best-selling children’s book “One of the Gang: Nurturing the Souls of Children with Food Allergies”

I write a regular column in Allergic Living Magazine called “The Parenting Coach” where I share my passion for supporting the emotional needs of families with food allergies.

Clients can purchase individual coaching packages here:

http://www.allergymoms.com/modules/xoopsfaq/index.php

My “Ten Things Children with Food Allergies Want You To Know” eBook and Teleseminar Recording is available here:
http://www.allergymoms.com/10things.html

I periodically send information on new group coaching and teleclasses through my newsletter.
Newsletter is available here: http://visitor.r20.constantcontact.com/manage/optin/ea?v=0016DNjNiidDhSvcZnoj1cK5g%3D%3D

What training and/or degrees do you have?

I am a Certified Life Coach and will have Master Coach Certification in July 2011. I have a BA in Liberal Arts and Social and Behavioral Science.

Do you have food allergies or intolerances yourself? Or do you have children who do?

I have two children. My ten year old son has multiple food allergies. (Milk, wheat, egg , peanuts, tree nuts and more.)

What is your “typical client”?

My ideal client is:
The mother of a child who has been recently diagnosed or recently had a reaction and the parent is feeling overwhelmed.

 

 

What do you feel you can offer a client who is suffering from anxiety about their food allergies or celiac disease diagnosis?

The majority of my clients are overwhelmed, scared and depleted. They need support of a person who has been through exactly what they are going through. Our needs are unique and most people don’t understand the tremendous impact that food allergies have on every aspect of life.

I help clients feel calm so that they feel comfortable managing the shopping, cooking, label reading and that they are able to avoid, recognize and treat allergic reactions.

I help clients feel confident by showing them that overwhelm and fear can be part of the process and that we can work through these emotions and get to confidence and competence.

I show clients “how” to explain food allergies to others so they can get the support, care and compliance they need.

Once they have been fully heard, we can look at ways for them to integrate self-care into their daily lives and then everything starts to improve. The joy and the fun of life comes back, many times even more than before.

What type(s) of therapy do you practice?

A life-coach helps a person overcome obstacles to living a full and joyful life.  We do not practice therapy.  Some clients present with therapeutic issues and I refer them to a mental health professional.

Is there anything else you’d like to add?

The parents I work with find tremendous benefits in having their experience validated; opening up to see all of the options available for creating a safe and joyful life, and having someone support them as they begin on this path. It is a different way of life and the adjustment period can be brutal. But it is manageable and there is light at the end of the tunnel. I just point the way!



Interview with Michaela Smith – Age 20

Michaela, what food allergies (and intolerances) do you have and how old are you?

I am twenty years old. I am moderately allergic to wheat and have severe gluten intolerance and other intolerances to beef, pork and lemon. I have not been tested for Celiac disease with a biopsy because I went off of wheat and noticed how much better it made me feel and didn’t want to start eating it again. GI doctors require with celiac tests that I still need to be eating wheat and my doctor suggested that I not do that.

What happens if you get exposed to your allergens?

I only have a reaction when I ingest the foods. My stomach hurts really badly and my intestines are usually unhappy. I can sit in a bakery and have no issues at all.

How did you handle your wheat food allergy and intolerances in high school?

High school was an interesting experience. I was in the high school band for all four years. I kept trying to explain to my band director that it would be great to go to a restaurant that had a huge salad that I could eat and then I would have a few snacks when we got back to the hotel. I would at times sit in an Italian restaurant, because that is what the band director picked, and could not eat anything. I had found that even some Caesar dressings had wheat in them. It was a very frustrating event for me even though I knew I had snacks at the hotel.

Another experience that I had in high school was with the Colorado Springs Youth Symphony’s Pikes Peak Winds. I had the opportunity to go to Japan with them. I was really nervous at first. However, my mom helped me out by finding a translator that made little cards and sheets of paper with all the food that I could and could not eat. I went over there for about 11 days. There were some meals that had an unknown ingredient in them, and I decided that it would be a poor idea to eat it because I did not want to get sick. I brought little snacks in my suitcase so that if I did not eat a meal I could at least have a snack. I brought white rice crackers and apple sauce. Most of the kids on that trip watched out for me and helped me as much as possible. I lost a little bit of weight during the trip, but I was also really busy and had an amazing time. Food for me on that trip was definitely not the sole focus.

What is your experience of colleges’ awareness of food allergies?

Some Colleges’ awareness is surprisingly slim; at least that is what my experience has been. Though the University of Denver did an excellent job with accommodating me when I went to a Music Camp there. It was about a 2 week camp and an amazing experience. My mom got in touch with the head chef at the dining hall that we were going to be eating in. The chef had said that he could cook all of my food and I would not have to bring too much. We gave him a list of the foods I can and cannot eat. I came up with a menu for him to follow so at each mealtime, my meal would be ready. They made some of the best Turkey Burgers I have ever had. And the chef made some amazing sweet potato fries. Man oh man was it good. I did not get sick once, and they were truly very good at accommodating food allergies.

My experience at Colorado State University was a little different. At first they said that they would be able to accommodate my food allergies. Though they sent a menu for the week at band camp, and there truly was no way for that to occur. So I ended up bringing my own food that I had in my dorm room refrigerator. I would do all the band stuff at camp, and then I would come back and eat whatever food I had brought by heating it in the microwave. Many of the students were really jealous of the fact that I had so many different foods in the refrigerator and was wondering if they could have some. I said no, I was not trying to be rude, because I only had a certain amount for the week. Overall that was another good experience with food.

What issues did you run into when looking at colleges in Colorado and their awareness of food allergies?

Well I found a few issues. At the University of Northern Colorado they had said that I could live in an apartment or I could live in the dorm and use the kitchen in the basement area. However there are many people who use that area to cook cookies and cupcakes. The last thing that I wanted was cross contamination within a meal that I was cooking. And there was a significant possibility that not everything is perfectly clean. So as wonderful as that had sounded, that didn’t seem to work for me. The apartment idea felt like too much to take on. It would be cooking and grocery shopping in addition to going to school at the beginning of entering college.

The other school that I was looking at was Colorado State University. They had stated that they could handle everything and anything. Though the more questions that I had asked with my food allergies, the more it became apparent that it might not be the best choice. They demanded that I live in the dorm, and their awareness was more about peanut allergies than celiac disease or other intolerances. They weren’t willing to change their menus for me – they just wanted me to find something to eat that was already on the menu and they weren’t good about listing ingredients in the foods.

Since you didn’t live in a dorm, what did you choose to do for living arrangements your freshman year of college? And now?

I chose for my freshman year to live at home because it seemed like a safe place to be. I was a little nervous moving out because of some of the experience I had in the past with people not necessarily understanding my food allergies. Though today I have moved out and live with one roommate in a house. He and I get along great. I have my food and he has his. I have one pan that I cook most of my food in, and he has his. It has worked out just perfectly.

How do you handle your food allergies now?

Today I eat probably about 99% of my meals at home. Probably about once every six months I will go out to P.F. Chang’s with friends because they have a gluten free menu. Though I know that most people my age have food always surround them. So instead I invite people over to my place and cook them a good meal, and then everyone is happy. Most people are surprised at how good Gluten free food really is.

Do you tell your dates about your food allergies? How do you go about doing that?

I do tell my dates about food allergies. At times they have wanted to go to a certain restaurant that I can’t eat anything at. They wonder why I can’t eat there so I explain what happens to me when I do eat wheat. Most of them understand and just want the best for me. Usually after that they let me pick the restaurant so that I know I am eating at a place that is fun and safe for me. My personal favorite is P.F. Changs!

Thanks Michaela!

Mom’s Comment: We have found that the colleges/universities that cost more in tuition are much more likely to have sound accommodations for students with food allergies. That doesn’t mean that a state university won’t make accommodations – but as in the case of offering an apartment as an alternative to dorm living, the alternative may not be easy for a college freshman to work with!

 

Interview with Carlo Steinman – Age 18

Carlo, how old are you and what are your allergies?

-I am 18 years old. I am allergic to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables.

Have you ever experienced anaphylaxis?

-I have been very fortunate to have not ever experienced anaphylaxis.

Since you haven’t experienced anaphylaxis to your food allergens, how did you find out you were allergic to the foods you listed?

– My pediatrician was very good about food allergies and suggested to my parents that I get tested, when I was just a newborn, because he suspected that I was a person who was likely to have allergies.

What types of symptoms do you experience if you ingest your allergens? Have you ever experienced contact or inhalant reactions to any of the foods?

-I am anaphylactic to Dairy, Eggs, Peanuts, Tree Nuts, Sesame, Fish and Shell Fish. Wheat is a gastro-intestinal reaction. Soy and some fruits and vegetables cause me to develop hives, throw up, feel my throat tingle, wheeze and symptoms such as that. I start to wheeze and cough if I’m in the same room as an egg being cracked. I haven’t had any major contact or inhalant reactions.

Do you still carry an EpiPen or two “just in case” ? How do you carry it?

-Yes, I always carry my EpiPen. It fits right in my pocket, no matter what I’m wearing (and I wear some tight, tight pants), so it’s not really a burden to carry it around.

You’re graduating from high school in a few months. Where do you plan on going to college?

I’ll be attending the University of Chicago next year.

Did your food allergies play a part in your choice of a college?

No, my food allergies didn’t play a part in choosing a college. I applied to the colleges that I wanted to go to and was confident that I could make it work.

How are you planning on managing your food allergies in college? Will you live in the dorm or in another living arrangement?

I’ll be living in a dorm. I’m going to sit down with the Dining Services and talk over my allergies and what they’re capable of doing. When I was touring UChicago I had a meal in the dining room, and they have all the allergens labeled and all the ingredients displayed, for every dish, so I’m confident that I’ll be able to manage my food allergies well and eat in the dining halls.

I’m so impressed that the University of Chicago labels all of their food ingredients in the cafeteria! Did other colleges/universities that you debated attending do the same thing? Or is UChicago special in this way?

-A lot of the schools I considered attending did the same thing, or had something similar. I’ve found that, because there are so many different special diets that people follow, college dining services are very on top of disseminating what goes into their foods and making sure that there isn’t any cross contact–a fact just as important to a strict vegan as someone with major allergies. In the past I’ve attended programs on college campuses and I can say that the dining staffs have been nothing short of great about managing my allergies.

Do you tell your dates about your food allergies? How do you go about doing that?

– I’ve found that being honest and straightforward is the best way to go. A lot of dates/get togethers happen at restaurants or somewhere where there is food anyways, so it’s not as if you can avoid the topic. Mostly, though, people already know, because if you’re friends with me (which comes before dating), you’ve almost certainly been at a meal with me. Normally, when I meet new people and they have a meal with me, I explain it to them, because they get curious after seeing me ask questions to the waiter/chef and have such plain, sparse meals.

Thanks Carlo!

 

Emotional Aspects of Food Allergy

Remember when your child was first diagnosed with a severe, life threatening food allergy? For me, I was in denial for months before I could truly accept what a life-altering event it was. I was beyond scared, and I wasn’t sure I was up for the task.

I felt overwhelmed at the road that lay before me to practice vigilance to ensure my son would never come into contact with his allergens. I had a very difficult time trusting that even my husband could properly take care of our son.

There have been times when I needed not only a friend to talk to, but someone who truly understands food allergies and all the emotional issues that it entails. I see it as a strength when we reach out for help, and admit that we are in need of assistance.

If you are feeling overly anxious and can’t quite find a ‘new normal’ after your child has been diagnosed, you might need some help. If your child is having a difficult time at school learning how to self-advocate, or feeling helpless – then you might want to reach out for some assistance for him/her.

Learning how to manage food allergies is a one day at a time thing for us. As Morgan has grown, he has been able to take on more of the responsibility. That doesn’t mean the transitions are easy though! My husband and I are careful to monitor Morgan’s and our emotional health along with physical health. The last thing we wanted was for Morgan’s food allergies to be a stomping ground for rebellion. It’s normal for a teenager to demand independence, but do so with an EpiPen in your pocket!

We certainly haven’t done everything right through the years, and there have been times when my husband has reminded me that I need to let go more and allow Morgan more space. And I have asked my husband to be more detail oriented with label reading. Communication is key in the family unit, and sometimes that requires an outside source to help the process!