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

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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.

Boy Scouts Camp A 2007 004A
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.

DSC03557
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.

Lauren robot

 

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!

Scholastic News also ran an article on Melissa and her robot. You can read that article here.

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!