I have recently been hearing from numerous people asking me how to obtain a mast cell activation diagnosis. What kind of doctor should I see? What kind of tests should I have done? Is there a blood test for it?
I share what I had to go through for 5 years before getting a diagnosis. I saw numerous different doctors – a primary care medical doctor, a D.O. primary care doctor, a private practice allergist, a private practice gastrointestinal doctor, an allergist and a GI doctor in a medical research facility…the list goes on and on. While I had numerous blood, urine, skin prick and food allergy tests, endoscopy and colonoscopy tests, no one could figure out why my stomach hurt 24 hours a day and I was continually losing foods in my diet. Everything came out “normal” in these tests; however, no doctor was actually biopsy testing for mast cells.
The food allergy and skin prick tests showed that I had some food allergies, but I wasn’t able to eat the foods that I wasn’t allergic to without severe gut distress. In other words, I was still reacting to foods that I wasn’t allergic to, and this was baffling for my allergist. This is a common refrain of those with mast cell issues. When I read online about someone who says that they are down to only tolerating a few foods, I ask the question, “Has anyone mentioned a mast cell activation disorder to you?”
Sadly, at this point, there is no blood test to determine a mast cell activation disorder. I got a diagnosis of a mast cell activation disorder when I saw a GI doctor who sent out my endoscopy lab biopsies to be stained for mast cells and tryptase. He also stained for eosinophils, and there were plenty of those in my esophagus and intestines also. By the time I finally saw a doctor who knew what to look for and how to accurately test me, my mast cell count was 30-40 per high powered field, and my eosinophils were 80-90. Most doctors agree that you want these counts below 15 per high powered field. Finally, I knew why I was feeling so terribly!
What I found is that medical doctors know a protocol to test for systemic mastocytosis, and they are more than willing to do that. I had one doctor who wanted to do a bone marrow biopsy on me. Thankfully I knew that I didn’t want that type of an invasive test. I had read enough about the systemic form to know that I didn’t have those symptoms.
There’s a great write up on diagnosing all types of mastocytosis and mast cell activation syndromes on The Mastocytosis Society website here. The interesting item to point out when it comes to mast cell activation disorders is that one of the criteria for diagnosing it is to put the patient on H1 and H2 inhibitor medications (generally Zyrtec and Zantac) to see if they feel better. If the patient feels better, then it must be a mast cell disorder! Backwards logic.
Most people seeking a diagnosis have been dealing with all kinds of odd manifestations of mast cells for years before they get to a breaking point and decide they need to get a diagnosis. Most mast cell activation issues manifest with gut involvement. A person’s bladder may be affected (a diagnosis of Interstitial Cystitis involves mast cells), but they also have gut issues. The good news about the gut involvement is that an endoscopy can be completed and biopsies can be stained to determine if mast cells are proliferating.
So, first thing I suggest to people is to have a food allergy testing to see if there are foods to which they have a true allergy. The second testing I suggest is to get an endoscopy and have the biopsies stained for mast cells.
If you do receive a mast cell activation diagnosis, you want to get on some type of antihistamine (and maybe even a mast cell stabilizing medication) as soon as possible. The longer that a person delays, the longer that mast cells will be activating, and the worse you will feel. This activation can create havoc on organs, and the cycle only gets worse. Soon it’s not only your gut that is affected, but the mast cells are proliferating at such a high rate that they can even move into your brain. You then begin to experience “brain fog.” This is a neurological issue where it’s difficult to concentrate, to remember things and to follow conversations. This cognitive dysfunction can affect people of all ages when there is mast cell involvement. I’ve experienced it myself when I was the sickest. Thankfully, by getting on a cocktail of antihistamines, a steroid, and a mast cell stabilizer for a few years, I was able to come back to my body. From there, I’ve done many other non-Western modalities to help my body heal.
I don’t know of one person who was suddenly able to get better without any type of medical intervention when it comes to a mast cell activation disorder. But you can get better! I am living proof of that.
Mast cell issues are increasing at a phenomenal rate currently. Ask any allergist if they have mast cell patients, and virtually every one will say yes. They will also probably say that they are some of the sickest patients they have, with so many symptoms it’s difficult to know where to begin to help them!
As a patient, we need to advocate for ourselves. Listen to your intuition. If a test doesn’t seem appropriate for you because of the cost or because it’s too invasive, speak up.
Our son, Morgan, was 10 years old when he originally wrote the answers to these questions in April of 2006. This article appeared in a newsletter that we published, long before there were blogs
He was anaphylactic to peanuts, tree nuts, sesame and shellfish, and severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees. At 22 years old now, he still has all of these allergies, plus he added fish to his anaphylactic food allergies.
Now that you’re getting older, do you ever go on school field trips without a parent joining in?
Only once so far. It was to a mining museum. I brought along my Epi Pens and Benadryl just in case if something happens. I have chosen on my next field trip, to Bent’s Old Fort in Eastern Colorado, to go with neither of my parents joining.
What do you have to bring in order to be safe?
I have to bring safe snacks, my own lunch, and of course my Epi Pen. I also bring Benadryl just if I get itchy eyes or something that is mild. I also make sure to have a friend nearby so that he knows what is happening and can tell my teacher to give me my Epi Pen if that would ever be necessary.
What did you experience on a recent field trip that could have been unsafe?
At the mining museum, we panned for gold. I did not participate because from an experience at the Denver Museum of Nature & Science. They had a little exploration box where you could dig for dinosaur bones. I could have done it, but on the sign, it said: Sand is made from Walnut Dust. I never did go do that again! At the Mining Museum, there was dirt and things at the bottom, along with gold flakes. I did not want to take risks just in case if the water was some type of oil, or whatever.
Did you feel left out not being able to participate in that?
Actually not. I have to be able to cooperate with my allergies and my life.
What do you plan on doing on your next field trip that goes all day and is 2 ½ hours away by bus to Bent’s Old Fort?
I plan to bring the same things as the Mining Museum trip – snacks, lunch, and my Epi kit which includes all my medicine. I also planned with my teacher that everyone will bring a safe snack and lunch, plus safe things to do, like not trade food things.
Are there any field trips that you wouldn’t want to participate in?
Yes, quite a few. The petting zoo, the cookie factory (if we ever went there), and a lot of other things that wouldn’t be safe for me if they were one of my allergens.
Our son, Morgan, was 10 years old when he originally wrote the answers to these questions in March of 2006. This article appeared in a newsletter that we published, long before there were blogs
He was anaphylactic to peanuts, tree nuts, sesame and shellfish, and severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees. At 22 years old now, he still has all of these allergies, plus he added fish to his anaphylactic food allergies.
What would you do if someone brought peanuts or nuts into your nut-free classroom at school?
I would just say, ‘I’m severely allergic to nuts. You can’t bring these into the classroom. Maybe could you bring in something else that is safe?’
Has this ever happened?
Once. One of my friends brought in cooked nuts with sesame seed on top for Chinese New Year. He said all right, but I don’t think necessarily he understood. He was from China.
What precautions are required for you to go on a field trip? Who carries your medications? You need to make sure that you are going somewhere that is safe for you. K-3 should have a parent/guardian that understands your food allergies and that can administer your Epi-Pen or other medications that are necessary. 4th and 5th graders should be responsible by now to carry their own medication and travel by their selves unless your parents do not feel comfortable with it.
Do you have a full time nurse at your school?
No, I don’t. She usually at most comes in once a week because she works at 4 different schools. She helps write up my Health Care Plan.
Do you participate in meetings to plan your 504 Plan and your Health Care Plan? Why do you think it’s important for you to be there? Yes, I do. Why? Well, so that I know my future teacher knows what I’m allergic to, and can also handle it. I think it’s important for me to be there because so that they get to know me, and actually understand what can happen if I go into anaphylactic shock. Also, I think I should be there so that I get know them and how it will work out with the classroom rules.
Morgan was 10 years old the end of January 2006 when this article was written originally for our February newsletter. He was then anaphylactic to peanuts, tree nuts, sesame and shellfish. He is severely allergic to dogs, cats and other furry animals. He gets eczema from food dyes, has mild asthma and is allergic to grasses, weeds and trees.
Where are your EpiPens® kept at school?
Just in case if I have an allergic reaction at school, I can use them. They are not by my side in the school. Two are in the office – one to stay there and one to go out to the playground with the monitor. I don’t think that is the greatest place to put them though because they are locked away. I also have one in each of my classrooms. (Mom’s note: in 2006, it was not legal for Morgan to self-carry his EpiPens, therefore other arrangements had to be made. It wasn’t until 2007 that he began to self-carry).
Do you trust that your teacher would know what to do if you were to have an allergic reaction?
Yes I do.
Do you trust the office staff to know what to do?
Not really. We had a boy a little older than me that had an allergic reaction and they did not use his epinephrine. They thought he had the flu. He did not die thankfully.
When you get older, do you plan on teaching your friends how to administer an EpiPen®?
YES I do! So they know what is happening when I’m in shock and what to do. Usually one of my friends is close by at all times.
What did you teach your Cub Scout Den about emergencies and food allergies?
I taught them how to use the EpiPen® and when to use it. I taught them the process which is put the EpiPen® in my thigh, call 911.
With the recent death of a girl dying after kissing a boy who had eaten peanut butter, what different behavior will you practice when you get older?
I’m never going to date a girl who eats peanut butter all the time. It is just too dangerous.
Will it be difficult to tell a girl what she can eat?
No. Not necessarily. It won’t be that hard just because it is a situation between life and death. I don’t want to risk my life.
When our son, Morgan, was young we were always SO careful to protect him from dogs and cats because of his severe allergies, diagnosed from a skin prick test, and confirmed with a few disastrous exposures. Prior to him receiving allergy shots, if he was in a house where a dog or cat had ever lived, his eyes would swell shut within 10 minutes. After receiving allergy shots, he wouldn’t have such a severe reaction, but was still subject to some asthma issues.
I have also been skin prick tested for allergies to dogs and cats, and have a severe cat allergy, and supposedly no dog allergy. However, I have been in homes with a dog and experienced a runny nose and cough, so there must be some dogs that bother me. (I’ve yet to figure out which breeds bother me, and which don’t.)
A few weeks ago, my husband and I went to Winter Park, Colorado, to stay in a condo owned by his brother. We were told that the property is “pet free,” and that they don’t allow anyone to bring in pets, which was a welcome relief. We packed up for a 4 day/3 night stay looking forward to rest and relaxation in the beauty of the Colorado Rockies.
When we got there, we noticed that there were dog hairs on the couch. We knew that his brother’s family owned a dog, and figured that the dog must have come to the condo with them at some point. I wasn’t too concerned since I have only ever had issues when the dog is in the room with me, and then only with a few dogs.
We bought a lint roller at a local hardware store and gathered up all the dog hairs we could. I wasn’t having any of my traditional runny nose or cough, so I thought I was doing fine with the dog hairs. And the condo was basically clean, with no dog hairs on the carpet, so we proceeded to stay the entire weekend having a great time.
I did notice while we were there, that during the night, around 3am, I kept waking up with an acid feeling and stomach ache. This isn’t unusual for me since I have a diagnosis of Eosinophilic Esophagitis (EoE), and I chalked it up to not taking enough acid medication.
By the time we got home, I realized that more acid medication wasn’t helping to mitigate my symptoms, and that my EoE had really flared. In Winter Park, it was snowing the entire time we were there, so there were no pollens in the air, which is my usual trigger. The only thing that could have triggered an EoE flare was the dog hair! That was a new experience for me.
I haven’t been in a house with dogs in several years, and it has been decades since I stayed overnight in a room where a dog has been. I now know that “pet free” to some people means that they don’t allow OTHER people to bring pets to their rental property. It doesn’t mean that they don’t bring their own pets!
When we have booked a condo through AirBnB, I always inquire with the owner whether pets have EVER been in a property, yet with my own brother-in-law I neglected to do this.
Recently, my son, Morgan, and I spoke at a FARE Community Engagement Council event in Denver on “Preparing for and Going to College with Food Allergies.” It was a wonderful event with dozens of attendees – both parents and teens – managing food allergies.
We shared first about what parents can do to prepare their child for college during grades K-12. You can read that blog post here.
Then, we spoke about how to go to college with food allergies, and the necessary steps to find out the information about food allergy awareness at a school.
I am frequently asked how to begin searching for a safe college when you/your child has food allergies and/or asthma. What questions do you ask when you visit a college? When should you ask these questions?
It was very important for me to remember that my son was the one going to college, so he and I had several conversations prior to visiting any college about what he wanted to learn during a college visit. I asked him to develop a list of questions that he had for college officials about living arrangements, eating in the cafeteria and academic interests. We then compared our lists and came up with the following questions pertaining to the food allergies and asthma. Your list may also include specific academic interests.
Here’s a list of questions on food allergies and asthma that are useful when visiting a college:
Are ingredients listed on all foods served in the cafeteria? If not, is there an app or a website that will have the ingredients?
Is there a chef on site to take special orders?
Are the cafeteria workers trained on food cross-contact?
How many of your child’s allergens are regularly served?
Can my child and I speak with a dining manager about my child’s needs?
How old are the dorm buildings and cafeteria facilities?
Has there been any water damage or flooding in the past?
Are the dorms air-conditioned? (If not, what documentation will be necessary to submit for a medical necessity to live in air-conditioning?)
Are pets (such as dogs and cats or other emotional support animals) allowed in the dorms?
Can the resident adviser be trained on the administration of an epinephrine auto-injector?
Is stock epinephrine carried by security personnel on campus?
Can roommates be selected to ensure no food allergens are in the dorm room?
How is a 911 call handled on campus?
Is food allowed in classrooms and lecture halls?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office to provide accommodations?
Yes, this is a long list of questions, yet you may have more depending upon your child’s allergies and needs.
When do you ask these questions?
I’d suggest first starting with the college website. If you go to the Dining Services page on the college’s website and find NOTHING about food allergies, that is your first clue that you may have an uphill battle. Schools that are aware of food allergies put that information on their website along with who to contact to ask questions.
The Housing page on a college website will generally not have any information about food allergies, but will likely have a contact person for questions.
We found that Disability Services website pages are usually geared more toward those with learning disabilities; however a few schools are starting to incorporate information about food allergies and what paperwork will be necessary. We waited until our son was accepted into his school of choice to begin specific conversations with Disability Services about our son’s situation. While a school should not deny admittance because of a disability, there’s no reason to give too much information prior to acceptance.
We found it best to have specific appointments set up with the Housing Office and with Chefs in the Dining Hall when we visited a campus to learn more about how they managed students with food allergies. Prior to him being accepted, we only asked general questions about what accommodations could be expected for a student with food allergies and/or asthma.
As for the Disability Services Office, we visited with a representative after my son was accepted to the school. We asked very specific questions about paperwork necessary for our son to receive accommodations. We found out that many schools will require that your child have recent testing confirming food allergies and asthma if specific accommodations are being requested. In other words, a skin prick test from 10 years ago was not going to suffice. A letter from our allergist delineated the specifics of what Morgan was going to need to safely attend college. The Disability Services office paperwork is best completed in the summer prior to the school year starting so that everything will be established once school starts. And remember that everything is completed and driven by your child once they are 18 years old. Schools expect your child to advocate for themselves.
Most colleges in today’s environment have managed students with food allergies. That can be a good thing if your child expects to eat in the cafeteria. It can be a negative thing if the college expects your child to have allergies similar to other students they’ve encountered, and you want a different accommodation.
There are several other lists of colleges and their accommodations for students with celiac and/or food allergies that might be helpful. Of course, it’s always preferable to use these lists as a guide and to visit the college yourself to ask questions specific to your child’s needs.
Recently, my son, Morgan, and I spoke at a FARE Community Engagement Council event in Denver on “Preparing for and Going to College with Food Allergies.” It was a wonderful event with dozens of attendees – both parents and teens – managing food allergies.
During the presentation, the first thing we discussed was what parents can do to prepare their children in grades K-12 for college.After all, going to college is something that requires planning! And for children with food allergies, more planning is required. Also, more skills are required to be able to safely attend college.
Here was the list we shared that outlines what your child SHOULD be doing, or is able to do, before leaving for college.
Always carries epinephrine autoinjector – If your 18 year old is heading off to college and Mom or Dad is still reminding them to carry their autoinjector, there’s the potential for a very hazardous situation to occur. Parents aren’t going to be able to ensure that an EpiPen or Auvi-Q is being carried every time a child leaves their dorm room. Carrying epinephrine in a fanny pack or other bag can begin as early as four or five years old so that a child begins to understand that anywhere he/she goes the epi comes too!
Able to order food at a restaurant – This is a learned skill and one that took our family years to perfect. We had a chef card we created that explained Morgan’s allergies, but we also allowed him to begin to practice ordering his food at about age 10. If he forgot to mention something, we were there to assist. As he moved into high school and attended meals without us, we felt confident he knew how to explain his food allergies and cross contact to the wait staff and/or chef.
Can effectively read product ingredient labels – For Morgan, he does not eat any food that is labeled “may contain,”so he needs to be especially careful to accurately read every piece of text on a label. Learning how to read can become fun in looking for food allergens listed on a label, and we began that in kindergarten. It’s also important to know when to call the customer service telephone number for a product to determine whether the product is safe or not. Morgan continues to pick up the phone to call a company now that he’s an adult to provide for an extra layer of comfort.
Can identify an allergic reaction and/or anaphylaxis – This is more difficult if your child hasn’t had anaphylaxis since they were a baby, where they may not remember the symptoms. A discussion with your allergist can assist with your child being able to list symptoms and know when it’s time to administer an autoinjector or an antihistamine.
Can train friends and others about allergic reactions and epinephrine administration – This is especially important in the college setting, because there is no school nurse who is going to be training friends, Resident Assistants or professors. Practicing at home with expired autoinjectors, injecting them into oranges, helps your child know how to explain administration to friends. The Auvi-Q device was great fun for Morgan’s college friends to learn since it talked them through how to administer!
Is comfortable making appointments and speaking with a doctor – We had Morgan begin to complete all the pre-appointment paperwork for an allergist’s appointment beginning in late middle school. He needed to know what the names of his medications were and what dose he took. Then we transitioned to him discussing his concerns with the allergist at appointments, with Mom also in the room. Finally, he began to make his own appointments with the allergist and to go by himself. This was necessary before he went to college, because Mom or Dad wouldn’t be able to be with him at every doctor’s appointment.
Remembers to take medications for pollen allergies and/or asthma – This is a difficult skill, and will probably need plenty of parental supervision. There are also apps, alarms and other technological advances that can help with this. This skill comes in late high school or even later depending upon your child.
Can advocate with teachers, the Disability Services Office, chefs and employers – A college is going to view your child at 18 years old as an adult, capable of completing their own paperwork. Practicing this skill beforehand is vital for good outcomes in college. Advocating with teachers can begin in elementary school. If Mom/Dad resolve every issue, children don’t learn how to advocate for themselves. Talking through a situation, at home, with your child can help them to gain the courage to handle the situation at school. Of course, there are some situations that still need Mom/Dad to guide, but learning how to speak up early in life helps strengthen the advocacy muscle. Talking with an employer about food allergies is a life skill that your child needs to learn, unless they plan on being independently wealthy!
Able to shop for groceries and cook for oneself – Learning how to cook is great fun and can be a family activity starting in the toddler years. Label reading at the grocery store can start once your child can read. Both of these skills are so helpful for college students to keep themselves safe and well fed.
I imagine that no child with food allergies is perfect at all of these activities; however, knowing that your child can manage the most important skills will allow you, as the parent, to support your child heading off to college!
This newsletter interview of my son, Morgan, occurred in January of 2006. I will be continuing to add these “old” interviews to this blog.
Morgan became 10 years old the end of that January. At the time, he was anaphylactic to peanuts, tree nuts, sesame and shellfish. He was severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees.
If you were suddenly not allergic to peanuts, would you want to eat them?
No actually. I would not. I don’t really know why, but it just seems that I don’t like them, even if some day I’m not allergic to them.
If someone comes up to you in the lunchroom with peanut butter and jelly and wants to sit next to you, what do you tell them?
I tell them, “Can you please move away, I’m severely allergic to peanut butter.” Usually, that doesn’t happen very often because my friends literally swarm upon me protecting me. If that doesn’t work, I go tell the lunchroom monitor, or my Vice Principal, who usually walks around the tables.
When you go to birthday parties, what do you do to keep yourself safe?
I bring my own snacks to birthday parties, actually. Just to be safe, I check the ingredients on everything they serve, but if really nothing’s safe, I just eat what I brought.
Do you ever go on sleepovers? What has to be done for you to be able to attend?
If I ever go to a sleepover, I only go to a dog and cat free house, and I make sure they’re not having peanut butter and jelly sandwiches for dinner with sesame buns! I bring my own food for a sleep over, so really, I bring everything from home that is safe for me.
What do you fear most around your allergies?
I fear most that I will have an allergic reaction eating something that the label did not say something that I was allergic to was in it, and end up in the hospital.
Have you ever had to use your epinephrine kit?
No. I have not. I have had to go on Prednisone steroid a few times after a bad allergic reaction to something we never figured out. And I’ve taken Benedryl lots of times after a dog licked me and after eating eggs, which I used to be allergic to.
Do you think you could give yourself the epinephrine shot if you had to?
Yes. Only if it was right in the beginning of the shock, so I could still use my hands and not feel paralyzed.
What can you tell other children who have food allergies to give them help and hope?
I always tell them to stick up for them selves and always read labels. Those are what I mainly say, although I also give other advice. Also, besides reading labels and sticking up for your food allergies, just bring your own stuff everywhere if it’s out of your house just to be safe. If you go into anaphylaxis, have people know what to do if it ever happens. Have them know where your Epi Pen is and other medicine is. Don’t have them not know what is happening if you do go into anaphylaxis.
For those of you who manage mast cell activation issues, you know how things can go great and then reverse direction within a day! Mast cells can be triggered by foods, chemicals or scents, and by environmental triggers and seemingly by 100 other items where we’re constantly playing detective. I work hard to keep my diet completely organic and to stay away from foods I’m allergic to; to not be exposed to any chemicals (such as hair dye or cleaning solvents) and to mitigate dust, pet and other pollen exposure. That has helped me to progress tremendously since my activation issues began 12 years ago. I’ve also found a few new areas that create setbacks, which I’ll share below.
My daughter, Michaela, and I have both been on Dr. Xiu-Min Li’s protocol of Traditional Chinese Medicine herbs to assist with calming down the inflammation in our bodies from mast cell activation. We both use the herbs topically only, as neither of us is able to tolerate swallowing the herbs for consecutive days or periods of time. Dr. Li has been especially helpful in assisting each of us to feel better with an herb paste that we put on the bottom of our feet overnight. These specific herbs help with acid reflux and calming the gut. I also use a special cream on my entire body that helps to calm down the mast cells throughout my body – skin, gut, nasal passages, etc.
I’ve been on this protocol for 3 years; Michaela for 1 year. Each of us would love to be able to increase the foods that we are able to eat AND to have no stomach issues. We’re moving in the right direction, which is really wonderful.
Both Michaela and I also see a chiropractor in Denver who specializes in Network Spinal Analysis (NSA). This has helped our energy levels to increase and to balance out energy in our bodies. Mast cell activation can affect sleep patterns and also can affect how energy flows through the nervous system creating pain in the back especially. It’s not unusual for me to have hot flashes and awaken in an anxious state scratching an itch that isn’t prevalent during the day! NSA helps me to get better sleep, and has also helped me to be able to exercise again without extreme pain.
In May of this year I fell on gravel after tripping over a 3 inch lip in a trail. Not only did I cut up my hands and knees, but I also sprained my ankle and pulled muscles in my chest. My entire body went into a nervous overdrive. Within a few hours of the fall, my mast cells began going crazy causing me to feel nauseous and dizzy. I knew a mast cell degranulation was occurring because I’ve experienced it frequently enough in the past. I choked a few bites of food down and took an antihistamine along with extra Ketotifen (a mast cell stabilizer) to begin to calm my body. While it took a good month for me to be able to walk on my ankle, it took only a few days for my mast cells to calm back down. However, for those few days, I was so tired and nauseous it was reminiscent of years ago when I felt like that every day! Now, it was a minor setback. I learned that stress to the body (or to the mind) can have big ramifications for mast cells.
I also wrote about my bee sting that occurred in the summer here, which was also a minor setback. Thankfully, I know to respond quickly to bee stings and to get on Prednisone as soon as possible!
Michaela also experienced a strange reaction during this past summer. She began experiencing what she thought was a mast cell reaction at a house she was staying at taking care of the owner’s dogs. She felt dizzy, nauseous and began having the shakes – classic signs for her of a mast cell reaction. She took Benadryl and an extra Ketotifen, and felt only slightly better. The next day she began getting a terrible cold virus, and chalked up the entire situation to getting sick. After three days, at the end of the job, she returned home and then went to our NSA chiropractor. He immediately asked her how she came into contact with chemicals. He stated that the cold she had was from an overload of chemicals running through her body. He could feel her body’s negative response the minute he began working on her. She called the home owner and found out that they had just had their floors redone! The off gassing from the renovation had created organic compounds to be trapped in the house, and she reacted violently. She has now learned to ask home owners where she will be staying overnight if they’ve had any recent renovations! The good news is that she has learned to ask more questions about her environment when she is staying somewhere other than home.
Mast cells activation issues require constant vigilance and awareness of one’s environment. Injury and chemicals stress the body. Mast cells are only trying to protect, but with an activation disorder they end up hurting the body!
Back in December of 2005, I began sending out a monthly newsletter from me/AllergicChild. This was long before blogs came into being!
I created a Morgan’s Corner in the newsletter for our then 9-year- old son to answer questions about living with food allergies. Morgan is now 22 years old and a college graduate! Yet, many of these memories from these interviews are worth saving on the blog and sharing with you.
You will notice in the interview below that Morgan doesn’t list Fish as an allergy. He had yet to experience anaphylaxis on a camping trip to trout that illuminated the allergy!
I’m sure many of you will relate to his successes and challenges as I continue to add these to the blog and share them.
How old are you Morgan?
I’m 9 years old and in the 4th grade.
What are you allergic to?
Peanuts, Tree Nuts, Shellfish, and Sesame. I’m also allergic to Dogs and Cats, although it’s mostly anything that’s alive with fur on it. Although those are but a few what I am really allergic to, those are my main.
Do you ever remember not having allergies?
No, I do not remember not having food allergies. I was really young when we found out, so I don’t remember.
What’s the worst part of your allergies? In other words, what do you wish you could change?
I don’t know really what the worst part is. It’s either not going over to a friend’s house or I can’t eat something. I also wish that I did not have dog allergies just because a lot of my friends have dogs, so they have to come over to my house instead of me going over to theirs.
Have you ever been teased because of your allergies?
Well, twice actually. Once, a friend of mine went running around the playground, of course chasing me, holding a peanut butter cracker and yelling “Eat it Morgan! Eat it!” Another time is when another one of my friends actually went around chasing me pretending to be a peanut butter sandwich. All these times, I went and told the teacher and they did get in to trouble. We’re friends now, and I don’t think about it much anymore.
Have you ever been left out of activities because of your allergies? If so, what? How did that feel?
Food Fights, Food Fights, and more Food Fights. Seriously, I have to either not participate, or check the labels on all foods at a party at school. That usually takes a long time though. It sometimes felt great that I’m safe, but I also want to participate. I have also been left out when my 1st grade classroom went next door and I couldn’t go in. The classroom wasn’t peanut free. I told my teacher how it felt to be left out. She cried, and it didn’t happen again.
There are many people who suffer from a bee sting allergy, and most don’t have any food allergies. Thankfully, so far, neither of my grown children – Morgan and Michaela – have experienced any reaction to the bee stings that they have received.
It’s a different story for me. As a child and into my early 20’s, I received several bee and wasp stings without any issues other than a little discomfort. That all changed in 2006 when I was stung by a wasp on the back of my thigh. That was the beginning of my entire immune system going on “tilt”. I was later diagnosed with a mast cell disorder, which honestly could have been active for years prior to this bee sting. And the reaction to the sting brought my system over a threshold from which it hasn’t yet recovered.
The wasp sting reaction lasted for 3 weeks with hives on my thigh and itching. I didn’t realize then that I should have gone to the doctor and gotten steroids or some other treatment. Foolishly, I toughed it out.
I did tell my allergist at our next visit, and she gave me a prescription for an epinephrine autoinjector because of the severity and length of my reaction. I never experienced any breathing issues, which I’m grateful for. However, as with any type of allergic reaction, you never know what the next one could bring.
This past week, I was stung by a bee while out walking in my neighborhood. I sustained the sting on my left pointer finger right below the knuckle. I pulled out the stinger immediately and headed home to put on ice. I truly didn’t think I’d have a reaction this time since my mast cell disorder is better maintained with antihistamines and mast cell stabilizers, and I’ve never reacted to previous bee stings. Yet, the swelling began the next day.
By a day and a half after having the sting, my hand looked more like the Incredible Hulk’s than my own! It was itchy, and the swelling was so bad that I had to hold my hand above my head to keep it from throbbing. Again, I had no breathing issues thankfully, but the swelling was getting to the point that I was concerned that the skin on my pointer finger was going to burst.
I set out for my allergist’s office, ended up seeing a Nurse Practitioner since my allergist wasn’t in the office that day. She sadly had no knowledge of mast cell disorders, and thought a few extra antihistamines would do the trick. I had to beg her for a prescription of Prednisone. She acquiesced and said I should take 20mg of Prednisone each day for 5 days and then stop. I’ve never heard of this, with no titrating off of the drug. I asked her about that, and she said it wasn’t a problem. Again, not what should be done for someone with a mast cell disorder!
When I got to the pharmacy, the pharmacist had thankfully noticed that the 20mg tablets of Prednisone contain dye, which I react to, and asked if I’d prefer the 10mg tablets. I was so thankful that he noticed this! He then told me that she had prescribed two 20mg tablets a day for 5 days. So that’s 40mg of Prednisone a day with no titrating off!
I called the Nurse Practitioner and asked about this mixup and what should I be taking? She said the 40mg was fine. At this point, I knew I’d better get in to see a doctor, and went to my family practice doctor to get everything straightened out.
The doctor put me on a short course of Prednisone, starting at 20mg and titrating off over the next 4 days. The drug quickly began to lessen the itching, pain and swelling.
A few reminder lessens learned:
Past reactions to bee stings/wasp stings don’t indicate current reactions.
With any type of serious reaction, see a doctor! And if you have a mast cell disorder, it’s always better to see one who understands the nuances of reactions with mast cell patients.
Make sure to have any type of dye allergies listed at your pharmacy.
Never go off of a steroid suddenly. Always titrate down!
The first week of June 2018 was a whirlwind of graduation week (from college) for our son, Morgan, and our family. Graduations are an exciting time filled with activities and emotions for every family. And for us, it was a major milestone for Morgan to make it through four years of school with no serious allergic reaction with his allergies to peanuts, tree nuts, sesame, fish and shellfish!
Because Morgan was the Student Body President his senior year, he was the University of Denver student graduation speaker. And yes, that is a Winnie the Pooh bear on the podium with him! He quoted Pooh several times in his speech. Here’s one snippet: “I hope that we all have at least one something that makes saying goodbye hard. It will be something or someone that we cherish deeply. And it doesn’t have to be big either. As Pooh says, ‘sometimes the smallest things take up the most room in your heart.’ Let’s all take the time to express and celebrate that something or someone today.”
Morgan participated in and experienced so many wonderful adventures in 4 years of college: clubs, student government, study abroad, internships, jobs, friendships, roommates, and intimate relationships. Every one of these were affected by his food allergies, and he learned how to become an even better advocate!
The graduation has brought back memories of how far Morgan has come since he began college almost 4 years ago. And Mom has had to do a lot of growing too!
Living with a Roommate in College
When Morgan graduated from high school, (which I wrote about in a blog post here four years ago), we knew he was heading to the University of Denver. He really wanted to live in the dorm with a roommate in the Living and Learning community called the Pioneer Leadership Program.
Over that summer in 2014, Morgan and I had one meeting with the chefs at the school, and he determined that with their training from AllerTrain, and their willingness to continue to learn, it would be safe for him to live in the dorm and eat cafeteria food. We had a single room with a kitchen as a backup, but that would mean he couldn’t live with the Leadership program, which was a major barrier to participation.
He and I had many conversations that summer as I passed the baton, so to speak, to him to determine how he was going to tell his assigned roommate, Thomas, about his food allergies. Truth be told – he did so in a text message after having coffee for 3 hours chatting about how they each wanted their living situation to play out!! That was my first lesson in letting go. I really wanted for him to explain EVERYTHING about food allergies and his asthma to Thomas. And that was the first in a long list of Morgan learning how to take care of himself, in the way HE wanted to create his relationships and his life in college.
Through the years, Thomas was a roommate with Morgan during their first, third and last school years, and he was a travel companion through Europe prior to studying abroad. He now understands everything there is to know about Morgan’s food allergies, recognizing allergic reactions and how to operate Morgan’s Auvi-Q.
When I thanked Thomas for being such a wonderful roommate through all the years, he responded, “If I had to give up peanut butter to get a best friend, it’s a small price to pay!” Truth be known – he gave up a lot more than that, but this is why my son was so adamant to figure out a way to have roommates in college!
Learning How to Advocate Even More
Morgan’s activities in high school included playing piano for the Choir and participating in Speech & Debate, which allowed him to experience overnight trips and roommates. This helped him so much with the college experience, and having to manage food allergies.
I’d really encourage all parents to allow and encourage your children with food allergies to be involved with activities in high school that require them to go on overnight trips; to manage roommates in hotel rooms; to be responsible for carrying their medication(s); to train chaperones and teachers about food allergies; and to be faced with situations that don’t go as planned.
Morgan wrote about a last minute invitation to a business lunch here which offered an opportunity to advocate on the spot while working in college.
He also wrote extensively on his study abroad experience in his junior year at the University of Denver here:
The difference between high school and college really is that we parents have to trust that we’ve done as much as we can do to train our children how to make good choices. While they are still at home, we hear more about what’s going on. Once they go to college, a healthy relationship for my husband and I did not include having our son check in to tell us what he was eating, or to share about every one of his activities.
We did want to keep track of his trips and where he was located, but when he was in Denver, we would frequently hear from him via text every few days or so. And we spoke with him only every few weeks on the telephone. We live an hour away by car from Denver, so he was able to come home to visit (or we would go to DU) every 3-4 weeks.
For me, I was so accustomed to being VERY involved with all of Morgan’s medical issues, it was really difficult to loosen the grip I had on him, and to trust that he knew what to do with his pollen allergies, for example. When to take a Zyrtec for his nasal symptoms, or when his ocular allergies were causing his eyes to swell – he no longer needed me to ask “do you need…..?”
We are still working on me learning how to “zipper my lippers” on his medical needs!
Mom Learning How to Let Go
It truly has been a one day at a time process for me to learn how to let go of my obsession around Morgan’s health, which I wrote about in a blog post here.
Thankfully he never had a serious allergic reaction in college warranting a trip to the ER. He did land there once with a mystery stomach issue, which was enough excitement for us. I credit Morgan’s ability to manage and remain vigilant about his food allergies every where he went.
When he left to travel through Europe before his study abroad in England, I counted the days that he would be gone. It was 140 days. I counted them down every night. It was the longest 140 days of my life! We kept in contact with him more than we ever did when he was just one hour away from us. He managed everything beautifully. I knew then that we had trained him well.
Shortly after he returned he was telling me about how he was going out to dinner with some friends and that he would ensure he ordered a safe meal. I realized that the thought hadn’t even crossed my mind to be concerned. I told him that he’d made it through 9 countries and 33 cities during almost 5 months, and if he could do that without an allergic reaction, I knew he could take care of himself going to a restaurant in Denver!
Morgan grew from a boy into a man during college, which is what we all hope our children will do. He’s ready to step into the work world with his first “real” job as an Economic Development Specialist for the Longmont, Colorado Economic Development Partnership.
I will continue to have to work on letting go of him and his food allergies, asthma and various other medical conditions. I’ll always be a Mom!
Unlike traveling to San Francisco, which I wrote about here, Mexico City had its challenges. I was attending a conference in Mexico City called the Youth Congress for Sustainable Americas, which is organized by a non-profit organization based in Denver. I attended with some other students from the University of Denver, including Darylann who was the Vice President of the Student Body with me as President.
We booked flights on United: it was either United or American Airlines and United’s policy for food allergies is much friendlier. They don’t serve any packaged nuts and I’ve flown United before. I can say I was apprehensive since United isn’t like Southwest, but I actually had zero problems on the flights to and from Mexico City. I had to fly through Houston, so it was a long period of travel each way, but I didn’t have much problem.
This was also my first international trip since going abroad in Fall of 2016, so I was very excited! I brushed up on some key words in Spanish and tried to be as best prepared as possible. We arrived late on Thursday, April 5th and immediately took a taxi to our hotel near the airport. We immediately went to bed. The conference didn’t start until the evening on the Friday the 6th, so we spent the day around the city, mainly in Coyoacán (a borough of the city). We saw the Frida Kahlo Museum and some parts of the city. It was great!
We then went to the conference, beginning with a dinner at a venue in the city (Hotel Carlota)! It was pretty hip venue. I must write and give huge thanks to the conference organizer, Robin. She made sure absolutely everything was safe. She’s also fluent in Spanish, so she could make sure with the service staff that all of it was safe. She was also managing other food restrictions like vegetarian, so she was super cognizant of it all. We had a delicious and safe dinner (I overheard the waiters talking about the “especial” meal for me, so I knew Robin had taken care of everything).
The next day, the conference was in El Club de Banqueros, an event venue in the middle of the city. It was gorgeous! The conference had participants from across the Americas, so we had live translation between English, Spanish, and Portuguese. Mostly, the translation was for us Americans and Canadians who didn’t know Spanish – although most of the folks from Spanish-speaking countries had to use the earpieces for our Portuguese speakers! Robin was coordinating all of the food at the venue. She worked with the staff (in Spanish) to make sure I had safe meals. Truly, she was just tremendous.
Some other conference attendees and myself! Folks from the US, Venezuela, Mexico, and more!
The day was long, but we had an exhilarating dinner that night at a private art venue in the city with a local food crew. They were making tacos that changed my life. They were using all fresh, local ingredients and hand-pressing and heating the tortillas on-site. They made a variety of fillings. Robin helped check which of the fillings were safe with the food crew (again, Robin to the rescue!). I was able to enjoy some incredibly delicious tacos with fresh ingredients.
These were insanely good.
We had one last day of the conference on Sunday, for the morning. After that, five of us from Denver (two staff from the non-profit and three of us from DU) went and adventured around Mexico City for the rest of the day. Darylann and I flew back together on Monday and resumed school!
Now with the sequence of events established, let’s talk health challenges! First, the water. I was careful during the first 36 hours or so. Mexico City does not have great water and I knew that walking in to the weekend. I had bottled water and I knew not to just fill my refillable water bottle at any old water fountain. Then: the hotel we were staying at served (drip) coffee in the morning and while they said that the water they used was filtered, my stomach definitely disagreed. I threw up, recovered quickly, and continued on with the rest of my day. However, it wasn’t a pleasant experience.
The venue we were at for the conference (El Club de Banqueros) actually filtered their water enough: they provided coffee throughout the day and my stomach agreed with that coffee. Lesson learned! I refused to get water or coffee from our hotel for the rest of our time in Mexico City. I exclusively bought bottled water and was much more conscientious about drinking water through the whole weekend.
The second real issue was the smog and pollution. Denver is a pretty clean city so my mild asthma is rarely triggered, even during the springtime season. I’m not consistent with an inhaled steroid (Pulmicort) to help moderate the asthma, especially during the winter, because my lungs are just fine during that time of the year. This was an agreement reached with my doctor, so please talk with your doctor about the best practices to help control asthma if you have it. Anyway, with the spring season only just starting in Denver, I hadn’t really been on Pulmicort, but I brought it anyway, along with all of my other medications, just to have in case anything happened. I’m glad I did! The smog really activated some minor breathing problems the first day I was in Mexico City: essentially, it was just some tightness in the chest. I took Pulmicort regularly through the whole weekend and I didn’t have any further issues (the problems dissipated).
Now, for the weirdest story of the trip! It was our last day and we were adventuring around the city. We went to the Palacio de Bellas Artes, a beautiful cultural center in the center of the city.
Palacio de Bellas Artes
There are gorgeous murals from artists and has some beautiful rotating galleries of contemporary art. Diego Rivera has a very famous mural installed at the Palacio – and after seeing the Frida Kahlo house, I definitely wanted to see some of his art! Everything was going fine for the first fifteen minutes: we dropped off our bags and began wandering around the gallery.
Slowly, my skin became red. It wasn’t blotchy or full of hives either: it just gradually became redder in color. My eyes swelled up and my face turned a nice hue of red as well. My skin was not itchy at all, but my eyes definitely hurt. I had no idea what was going on!! My companions were all very concerned and pointed out my very red skin. I looked like a very sunburned American walking around with very red eyes. However, I had absolutely zero breathing problems and nothing else was happening besides my skin and eyes being very red. Nothing even itched! Such a weird, weird thing.
Anyway, I was wondering if it was something I had eaten for lunch (a delayed reaction, nonetheless, because I had eaten over an hour prior). However, once we grabbed our things and stepped out of the building, I took a Benadryl and my symptoms disappeared within the next fifteen minutes. I still have absolutely no clue what happened, but I’m glad I don’t look like a red alien! If any of those symptoms became progressively worse, or if I had breathing problems, I would’ve immediately asked one of my friends to call emergency services and administer an autoinjector. That would not have been an ideal situation, but it would have been medically necessary.
Other than those three things, the trip was great! Robin was such a huge help in making sure my food was safe for the duration of my trip (she even helped order a dinner at a restaurant our final night there).
The 2018 Youth Congress for Sustainable Americas
The whole experience was amazing, and I loved the city so much! I also loved all of the people I got to meet at the conference and had such a blast. I wish I could’ve stayed even longer, but I had to get back to school.
If you’re looking for more information about traveling with food allergies in general, you should click here. If you’re looking for more information about traveling internationally, you should click here. I’ve had a blast traveling over the past two months and I can’t wait to graduate from college! Happy travels, all!
Over the past two months, I’ve made two incredible trips: one to San Francisco for over a week and one to Mexico City, Mexico (read about that trip here) for four days. It’s rather a busy time for me at the moment (I’m graduating from college in literally two weeks!) so I’ve been meaning to write this post for a while. I figured I’d finally get around to it!
San Francisco (Spring Break 2018)
I went to San Francisco with my two best friends, Thomas and DK. We traveled Europe together and currently live together, so we know each other’s travel rhythms and they are both well acquainted with my food allergies (peanuts, tree nuts, sesame, fish and shellfish), allergic reactions and how to administer my Auvi-Q.
We planned on staying in San Francisco during Spring Break from Friday to the following Sunday (a little over a week). Thomas’ aunt and uncle live in San Francisco and they offered that we stay with them! They didn’t have any dogs or cats, which would have been a deal-breaker for over a week’s stay: I don’t have problems with most dogs or cats for a short period of time due to allergy shots, but over a longer stay I wanted to minimize problems. We affectionately called this trip “Dadcation 2k18” because we joke we’re all a bit like dads.
When initially planning, DK believed he was going to be out in San Francisco before we were for a spiritual retreat (he’s planning to be a Catholic diocesan priest). In the end, the retreat was moved so DK merely booked separate flights. Thomas and I, however, decided to fly Virgin America! It was incredibly cheap ($200 roundtrip versus at least $350 on other airlines) when we were booking flights a couple months out. I double checked their food allergy policy and everything was going to work out just fine! They didn’t serve any peanuts and while I couldn’t get a pre-board, I knew I’d just carry along some sanitary wipes and clean off the seat I was going to sit at.
Note: As of late April 2018, after I flew Virgin America, the airline has been fully integrated into Alaska Airlines. Alaska does have a pre-board option, unlike Virgin.
I try to stick with safe airlines (Southwest being the gold standard), but we were very price conscious since we knew San Francisco was going to be expensive. I felt comfortable with my choice and I had absolutely zero issues with the flight!
We took a short Lyft into the city and met Thomas’ aunt and uncle, Mike and Bette. They were absolutely extraordinary hosts and truly loving, wonderful people. We arrived around 8pm and decided to go for a late dinner at a local pizzeria. I immediately fell into the casual rhythm of travel: go with the flow, deal with any issues as they arise, and make sure I always have a safe option. Pizza felt like a good choice, too, since it’s usually not too crazy. It was more of a craft Italian restaurant, so the meal was delicious and I merely asked the waitress to make sure that the pizza was made safely to keep me safe! Worked great.
Since Thomas and I literally had just finished finals (we’re on the quarter system at the University of Denver), we decided to take the first couple of days pretty easy. We slept in, hung around Mike & Bette’s place, and just enjoyed the area. Mike and Bette had asked if we wanted any food around the place and Thomas had merely requested breakfast food so we could go out and experience the city in during the day and eat as we pleased. They provided so much food.
In all honesty, I have no idea whether Thomas informed them of my food allergies. He’s very cognizant of my food allergies after living together for 3 of 4 years in college. Nonetheless, all of the food Mike and Bette purchased was safe. Of course, breakfast food for us was eggs, sausage, fruit, and vegetables so it was pretty hard to find something unsafe.
Over the course of the next week, we walked around most major parts of the city. We also purchased a week pass for the transit system (the Muni). We walked along the entire Embarcadero and the whole pier, saw Chinatown, went to Alcatraz on a night tour, saw two incredible cathedrals, participated in a civic protest, and enjoyed nights on the pier and in Noe Valley. We ate wondrous food, saw incredible parts of the city, and stayed in on some rainy days. It was a truly fabulous week. I want to highlight a couple of events that I did not anticipate.
Dads take San Francisco (Thomas, DK, Me)
On one day, when we were walking down the Embarcadero, we ended up on the far north side in Ghirardelli Square. Technically, that’s up in Fisherman’s Wharf (an area of the city). My general rule with any chocolate is not to eat it unless I have called and made sure the production process is safe since so much chocolate nowadays includes nuts of some kind. Ghirardelli is not safe for me: some explicitly contain nuts and everything else has a “may contain” or “made in a factory” warning. Nonetheless, we entered into their shop and I mildly perused their offerings, just seeing what was around. Thomas and DK were superbly excited because they love chocolate and Ghirardelli. I waited around while they got a milkshake and purchased a couple gifts.
Obviously, I couldn’t purchase or eat anything. I can’t say I was disappointed about this adventure, because travel is a push & pull between what different people want to see or not. Thomas was all about Ghirardelli. I had a similar experience down on Fisherman’s Wharf walking past Boudin Bakery and some of the local seafood shops. Boudin produces world-famous sourdough bread but it wasn’t particularly safe (due to cross contact) and obviously the local seafood wasn’t safe for me. I wasn’t going to get a bowl of clam chowder with the boys, so we went elsewhere that night (we ventured back to a safe burger place in Noe Valley). I had to make sure I had safe food and DK & Thomas were very accommodating.
However, I wasn’t going to let DK and Thomas leave San Francisco without letting them try their seafood. I knew they wanted to eat some of it. So, we made a night where I would see a friend who was in the city (her name is Melissa) and they would go with Mike & Bette to a delicious seafood place. This worked great! I met Melissa in the Mission and ate some wondrous Cancun-style tacos and they ate seafood. This was essentially how we accommodated each other during our Europe trip: I would make sure I could find safe food and then the boys would be able to eat whatever they pleased.
Mike also took us to his club (it’s at the Presidio Golf Course). Very, very nice! We met up with two University of Denver alumni who live in the city with whom Mike & Bette are friends. We ate a late lunch as a group and I double-checked with the servers that the food would be safe (it was). I ate some short-ribs and had a lovely discussion. However, that afternoon was pretty unplanned: we had absolutely no idea where we were going that evening.
Me, Bette, Mike, Thomas, and DK on our last morning in San Francisco!
As it turns out, we wandered around the Presidio and the area: there is an old military base and some beautiful green lands in the area. We took our time and savored the day. We then walked along the beach all the way back down to Fisherman’s Wharf. By this time, I was getting pretty hungry for dinner: the good news being I remembered there was an In-n-Out at the Wharf that I spied when we were at Ghirardelli earlier in the week. I suggested In-n-Out to the boys and they are 100% on board. It worked out fabulously! In-n-Out is a great safe burger place for me, but I definitely double checked that everything was still safe before paying.
San Francisco was an incredible city and it was so much fun! I am so grateful to Bette and Mike for their hospitality and generosity. It was an amazing week and I will forever cherish that time. I had zero issues during the whole trip and I just can’t speak highly enough of the city and our time.
Both my son and I had a childhood filled with eczema. For me, it was long before anyone knew that eczema was related to the atopic march of allergies and asthma. For my son, Morgan, we learned various ways to combat his eczema and make him more comfortable, which I have written about here.
Through the years, we’ve learned of many more skin issues that can occur related to mast cell issues and environmental allergies, and have found various products that have really helped both of us.
Morgan frequently had itchy skin, and not always from eczema. When he would play outside in the summertime, when the pollens were high, he would frequently itch afterward. We didn’t want to have to give him Benadryl or cover him with steroid cream each time. We found a product called Sarna which really worked. It was steroid-free and you can purchase the “original” or “sensitive” which is fragrance-free. My daughter says the original “smells like my childhood!” because we applied it to Morgan so frequently.
Morgan also has ocular allergies. Sometimes his eyes got so red and puffy we had to resort prescription eye drops and steroids. We tried to not allow it to get to that extreme by using Zaditor eye drops. These drops have Ketotifen as the active ingredient, which is a mast cell stabilizer. With my daughter and I having a mast cell activation diagnosis, we use these drops frequently during tree pollen season and enjoy great relief.
Colorado winters are extremely dry, and everyone in our family has been in need of more skin moisture this past season. We’ve found Vanicream to be an answer to our alligator skin issues, and to ensure that eczema doesn’t flare. It is naturally fragrance free, and can even be applied to facial skin without clogging pores.
My mast cell issues have created another issue on my facial skin – Rosacea. I will react to most makeups by just getting redder skin. I found the company Rosaceacare years ago, and love it! I use the ZincO cream that includes a sun block on my face. I also love the cleanser and moisturizer.
Kiss Freely has great lip balm that my daughter loves, and their body butter is amazing! It really helps dry skin and is free of all allergens and gluten that have caused us to react previously.
Lastly, I have eyelid issues. Specifically, it’s called blepharitis, and is frequently seen in people with mast cell issues and rosacea. My eyelids get red and swollen and need to be cleaned daily. This is important to keep me from having to ingest oral antibiotics or to be putting antibiotic drops in my eyes frequently. I’ve found a product called HypoChlor can be used on gauze to scrub my eyelids and keep them from becoming inflamed.
One last note – I am not being paid to suggest any of these products. They are what works for us, and I hope that if you have similar skin and eye issues, you might find the suggestions helpful!
This is a selection from my new e-book “Studying Abroad with Food Allergies,” available exclusively on Amazon Kindle. I detail all the important things you should think about when planning, traveling, and studying abroad! Buy it here.
Study abroad is centered upon a program in a certain country. Some programs are run by universities, others run by research institutes, and even others run by American organizations in other countries. There are many different configurations for study abroad programs. Here are some typical categories:
University Programs. These programs are like year-long exchange programs where you are considered a normal student at the foreign university. You typically live on (or near) campus in university-provided housing, but homestays might be an option. Depending upon the country or university, classes may be taught in the native language.
Research / Experience Programs. These programs typically integrate a research or internship. Students may take classes and then complete an internship or complete both concurrently. These may be affiliated with universities, but are not always. Housing may be a homestay.
Language Immersion Programs. These programs are usually not affiliated with universities and are instead independent institutes. Housing is typically a homestay and academic curriculum is taught in another language.
Exchange Programs. These are year-long programs where, like university programs, you are considered a normal student at the foreign university. Exchange programs “switch” students from the respective universities: a university in Japan will send two students and receive two students for the whole year.
I have friends that were in each of those different programs. I was on a university program (more on that soon). One of my close friends, Kieran, was in an experience program in Brussels where he lived in a homestay with a local Belgian family, took classes for 5 weeks, and then worked for 5 weeks at a local international security think tank. I have two other friends who were on a university program in southern France, but in a homestay. I have a friend who was on a Mandarin immersion program in Beijing. I also have a friend who was on an exchange program to Japan, and another on an American research program in Chile. There is such a wide variety!
DU partners with programs around the world. One of the reasons we have such a high participation rate is because of these partner programs. DU students pay the university normal tuition, fees, and housing costs and DU helps cover all of the associated costs of registering, applying, and housing costs at partner programs. More importantly, if a student has a 3.0 GPA or higher and studies abroad in their junior or senior year, they qualify for a scholarship program that covers visa fees and flight costs! This scholarship is called the Cherrington Global Scholars Program.
Most universities have an office for study abroad: at DU, ours is the Office of International Education (OIE). OIE has an easily navigable site that lists out all of the available programs and their requirements. Some programs might have a language requirement or minimum GPAs or even certain majors! For example, there is a program in Milan that is specifically for opera majors at DU.
Criteria for Programs
These were some of the criteria I considered when I was selecting my program for study abroad. They at least help narrow down from a wide variety of programs that exist in the world and that DU partners with.
Are you comfortable studying in a country where English an official or primary language? Do you speak a second language?
Are classes taught in English?
Does the program offer credits toward my major or minor?
What kind of housing does the program offer? What kind of housing are you genuinely comfortable living in for at least four months?
Is the local cuisine (relatively) safe?
Is this actually where you want to go?
For me, I immediately knew that I would not be comfortable in a country where English isn’t a primary language. I can butcher some Spanish, but I wasn’t comfortable living in a Spanish-speaking country or communicating in Spanish. Study abroad is supposed to be uncomfortable and it is supposed to stretch your boundaries, but it isn’t supposed to be dangerous. I didn’t feel safe constantly communicating in Spanish or in a Spanish-speaking country since I wasn’t sure if I could constantly maintain food safety for the many months I would be there.
This also relates to another criterion mentioned above: is the local cuisine (relatively) safe? It’s impossible to find any cuisine that won’t contain at least one of my allergens, so I was looking for cultural cuisine that I could, on average, feel comfortable in finding a safe option. This criterion eliminated some English-speaking programs in English-speaking countries like The Gambia because I wasn’t entirely sure if I could consistently have safe food. Even though I wasn’t considering China, Japan, or Thailand by this point, this would also have eliminated those countries from my consideration.
I eventually narrowed down to mostly a few host nations: New Zealand, Australia, the United Kingdom, and Ireland. I also kept the Netherlands, Denmark, and Sweden on my radar because of their high-rate of English proficiency and relatively accessible cuisine.
This narrowing process may be different for you depending upon your food allergies. It might be stricter and you might focus exclusively on European countries (or only one country); it also might be less strict depending upon what you need to manage. Conduct some Google searches to explore different country’s cuisines and their languages. This was immensely useful to me before I started to explore programs in-depth. That way, I didn’t go chasing an impossible program down a rabbit hole.
Most of the programs were university programs and I double checked that they at least offered some classes I could count toward my academic degree. Sometimes, students forget that it is study abroad and not travel abroad. This is still an academic experience and it makes sense to take classes that still count for academic credit since you’re paying the money! OIE made accessing these lists at the various programs very easy, so if your university does not offer such a nice website, you might have to do some digging to figure out their academic offerings!
Want to learn more about housing at study abroad programs, coordinating accommodations, planning international travel, and more? Get my new e-book “Studying Abroad with Food Allergies” now, available exclusively on Amazon Kindle. Buy it here.
I remember the fear I felt when my son was in elementary school around Valentine’s Day school parties. I knew, from my childhood, that candy and food surrounded every party in the classroom. I also knew that it would take preparation and education to ensure that my son’s classroom remained safe during and after any party his class had.
My son started kindergarten in 2001, when food allergy awareness was definitely lacking. My initial thought was to remove all food from the classroom and have a food-free party! I thought it was a brilliant idea – crafts, games and fun. When I shared that with the teachers and the other room parents, you would have thought I suggested we starve the children for the month of February! So, food was very much a part of every year’s school celebration in addition to the kids bringing in Valentine’s Day cards, many of which included candy treats.
For my son’s entire elementary school years (all six of them from K-5), I was a room Mom in charge of planning every party. What a job that was, but I felt it so important to do this for his safety. This certainly helped for me to know what was planned for fun and for food. It also helped to steer the menu away from my son’s allergens – peanuts, tree nuts, sesame, fish and shellfish.
The classroom teacher sent out a reminder the week before Valentine’s Day reminding every family to NOT bring in foods that contained the allergens of any child in the classroom as a candy attached to the Valentine’s card or as food for the party.
Despite this, there were several years where we had issues. One year, a Mom brought in beautifully homemade cupcakes that had peanuts sprinkled on the top. The teacher looked at me when they entered the classroom on party day, and I gave her the evil eye threatening to make a scene if she didn’t handle it right there and then. The cupcakes were removed from the classroom immediately.
Another year, one family who didn’t understand English very well, brought in sesame candy to celebrate the Chinese New Year along with Valentine’s Day and put it into every child’s Valentine’s bag to take home. Many children got into the candy during the school day, and sesame seeds went everywhere. Since this occurred in 3rd grade, the students were much more aware of the issues this posed for my son. The Principal had to get involved with this issue and brought the parents in to explain food allergies and why sesame covered candies can’t be sent in to school. I’m not sure they ever understood the issue!
By 4th grade, my son’s classroom had a dance party with fruit and punch as food and that was it! That was such a wonderful step in the right direction – I was thrilled.
Once my son went to middle school in 6th grade, there were no longer any Valentine’s Day celebrations or parties. I didn’t miss the party at all, and honestly, I don’t think that my son did either.
If you’re still battling an elementary school with parties, I’m feeling for you! We learned that even with reminders to families about not bringing in food allergens, mistakes can still happen. If at all possible, be in attendance at your child’s school to watch the food. And practice with your child before the day how to respond to food that doesn’t appear safe – tell the teacher, don’t eat it, and make sure to tell Mom/Dad! If you’re school is open to having parties without food, there are so many activities that can be enjoyed.
Here are more links for safe Valentine’s Day Candies, Kissing with Food Allergies and food free treats:
This is a selection from my new e-book “Studying Abroad with Food Allergies,” available exclusively on Amazon Kindle. I detail all the important things you should think about when planning, traveling, and studying abroad! Buy it here. (It’s free with Kindle Unlimited!)
As a part of its study abroad program, The University of Denver (DU), where I attend, offers membership to a service called International SOS. International SOS offers consultation on health and security for individuals traveling abroad. This service was incredibly helpful to me while planning out for study abroad. All DU students are required to have at least one consultation with International SOS (over the phone) before they leave.
I called up International SOS and spoke with two individuals. The first individual was a security and travel expert and she briefed me on the ongoing security situation in all of the countries I was planning on visiting. She gave me a debrief on ongoing developments regarding terrorism and personal safety, as well as general practices as a US citizen abroad. This was great and very useful.
The second individual was a medical doctor. He was incredibly helpful. He had the medical knowledge required to understand my food allergies and the international experience to understand how they could be best managed while I traveled. He made sure I knew how to manage cross contact and how to be careful while purchasing food at restaurants while traveling (a skill I was well versed in!).
He noted that I would be unable to fill a prescription from an American doctor while traveling in other countries; instead, he recommended that I travel with my medicine in their original boxes that have the prescription on them. As such, I planned on carrying all of my medicine, including an extra set of EpiPens, in their original box.
If I needed to get a refill of a certain medicine, I could at least present the doctor in the foreign country my original prescription box to obtain a prescription that would be filled at the local pharmacy. Since different countries set-up their health care systems differently, an American prescription wouldn’t be able to be filled at a foreign pharmacy.
He did not believe there was any required paperwork to carry my medicine (EpiPens, antihistamines, asthma control, etc.) in the countries I was visiting. He recommended that, if it made me feel more comfortable traveling with a doctor’s letter that allowed me to carry my medicine, then I should obtain one. I did.
The US Department of State also offers a service called STEP (Smart Traveler Enrollment Program) that pushes updates to your email on ongoing security alerts in the regions you are traveling in. This also allows the US government to identify that you are in a country in case something happens and get you help. I also enrolled in STEP for my entire time abroad.
Not every school offers a service like International SOS. I think that finding a good resource online is possible. You should conduct thorough research on the countries you are visiting and the rules for bringing in medication. Countries usually have websites that detail these rules. Moreover, you should talk with your doctor about what is necessary to manage your medical conditions.
Want to learn more about other important planning items you need to think about before studying abroad like housing, accommodations, travel, and more? Get my new e-book “Studying Abroad with Food Allergies” now, available exclusively on Amazon Kindle. Buy it here. (It’s free with Kindle Unlimited!)
For the first time in 14 years, our family took a week long vacation with just the 4 of us: my husband, me and our two grown children – Morgan (almost 22 years old) and Michaela (27 years old). We headed to Orlando, Florida for a week’s worth of fun and sun in December. With Morgan on the quarter system for college, and Michaela already working, this was an ideal time to vacation during “low season”.
We flew Southwest Airlines on a non-stop flight from Denver to Orlando. Southwest has worked great for all of us in the past, and has allowed Morgan to preboard and wipe down his area. Traveling to Florida, we were on a brand new plane which was on its first day of flight, which was wonderful! That flight and the flight home worked perfectly – both were mid-morning flights, so not the first flight of the day, but we’ve never required that as part of our travel plans. When we boarded the flight home, the flight attendant told us that the previous flight also had no peanuts served, which made for a nice, clean plane. But we still wiped down the area where Morgan sat.
Traveling and managing Morgan’s food allergies – peanuts, tree nuts, sesame, fish and shellfish – along with his pet and environmental allergies pales in comparison to managing Michaela’s and my mast cell symptoms. She and I both eat only organic foods; however, her diet is vegetables and fruits, while I tolerate only a few foods – chicken breast, turkey breast, frozen Cascadian Farms hash browns and broccoli. My husband, Robert, is on the Whole 30 food plan – so cooking for all of us requires a short order chef!
Actually, we don’t ever eat out because of the organic food requirement, and the mast cell issues require much more vigilance than even food allergies. The type of water that I drink can affect my stomach! Unbelievable, but true. And for those of you with mast cell issues, I’m sure you know what I mean. So, braving a family vacation is a big deal. It also requires a lot of patience on each person’s part since each of us has different needs depending upon the situation. We’ve learned to also have activity days and rest days to keep positive attitudes!
We rented an AirBnB house that guaranteed it was pet and smoke free, and had a full kitchen since we would be cooking every meal. We planned ahead by finding out where the local grocery store (Publix) was, and I special ordered from them a week’s worth of the frozen potatoes that I eat. We also found a Whole Foods for Michaela’s foods, although it was 30 minutes from where we were staying. Morgan and Robert purchased their foods from each of these stores also.
I didn’t bring the organic ground turkey that I usually eat because I had called ahead to Publix and Whole Foods to ensure that they would carry it – plain with no spices added. However, when we arrived neither actually carried it, despite their reassurances that they did. This created a search across Orlando to find such a product. We finally did find a different brand, but I learned to bring it in the future since it’s so difficult to find elsewhere!
In regard to bringing food, we got a letter from our allergist to allow us to bring food onboard the plane through TSA. This letter was never requested, but we had it just in case it was. Also, the allergist’s letter delineated that we would be bringing frozen food in a cooler and checking it through as baggage. This too worked just fine with Southwest Airlines, and they never requested the doctor’s letter.
We found that the home we stayed in wasn’t well equipped with kitchen supplies, so thankfully I had brought a few frying pans and lids in my luggage. I always bring my own yellow colored spatula so that even my family knows which spatula is mine! I also brought my Instant Pot in my luggage. Since Michaela and I are part of Dr. Li’s private practice of Chinese Herbs for Allergies, Dr. Li has asked that I only eat meat cooked in the Instant Pot to help my stomach heal, and purchasing another one in Orlando didn’t make sense. So we brought a second suitcase with all these kitchen supplies!
All the grocery shopping and driving took us half of the first day in Orlando to set ourselves up. Then the fun began!
We went to the Kennedy Space Center and Cape Canaveral for our first outing. We packed our lunches and left them in a cooler in the car while we visited the Cape. We neglected to call ahead to see if a microwave would be available, and later we were told it wasn’t. In fact, they wouldn’t even allow any outside food in the space center, even with a medical condition from what we were told. So we ate our lunch cold (cold potatoes, broccoli and chicken will fill up the stomach, but doesn’t make a tasty meal!) in the car. Not the ideal situation, but we enjoyed each other’s company. And with my husband being a space enthusiast, we had a great time seeing all the exhibits.
We headed down to Cocoa Beach that same day. Being from Colorado, getting to see the ocean is a big deal. We enjoyed it thoroughly, especially since it is “low season” and there was hardly anyone else there, despite what we would call hot weather in December – mid-70’s!
The next day, we went to Disney Animal Kingdom. We wanted to especially see the new Pandora – World of Avatar, and to visit the Tree of Life. Michaela and I had to pre-make our meals the night before so that we would just have to heat them in the park. Morgan and Robert were able to bring salads and sandwiches – no heating required!
We searched online and found that they have lockers near the opening gate, which is where we put all of our lunchboxes plus snacks. Thanks to an inquiry on my AllergicChild Facebook page, I found out that the park does have one microwave for the public in the Baby Center area.
The park doesn’t have a lot of air conditioned locations, and with the temperature in the lower 80’s plus the humidity, our daughter began to have heat issues. You may remember me blogging about this issue here when she ended up hospitalized after having two grand mal seizures.
Thankfully, right next to the Baby Center, there was a First Aid office. She was able to get a bag of ice and sit in air conditioning for a little while to cool off. Twice more during the day, she went to First Aid to get more ice. I can’t say enough nice things about the Disney employees in First Aid – they were just magnificent. Each time she would come in, they provided a large plastic baggie of ice, and remembered her name from the first time. They treated her with such kindness, and we were so grateful for that.
Since the lockers we chose were at the park entrance, and the baby center was in the center, Michaela would walk with her plate of food piled high with cauliflower, carrots and squash nibbling until she got to the microwave. Several times, we had people stop us asking where she got her food! Dozens of people in the locker area brought their own food. Disney asked no questions about the coolers or even the water I brought in, which was wonderful.
The day was really long since we stayed for the River of Lights nighttime show, but it was well worth it.
We had all walked miles, and with feet hurting, we headed back to our AirBnB ready for bed!
We took a rest day the next day, and Michaela and I headed out to visit a Network Spinal Analysis chiropractor in the Orlando area. These doctors are specifically trained in a type of chiropractic work that involves gentle, precise touch to the spine cuing the brain to create new wellness promoting strategies.
We’ve found that part of the mast cell symptoms is extreme back pain, and all the walking we did the previous day was wreaking havoc on our spines. We found a lovely young woman who had recently opened her practice, and got us aligned and ready to walk the next day at Universal Studios Wizarding World of Harry Potter!
This was the big event that we were most looking forward to. Universal also had no issue with us bringing food into the park. And I brought my own water without anyone asking anything about it.
The lockers were once again near the opening gate of the park, however this time the microwave was very close in a “nursing room” in the family center.
We decided to purchase the 2-park pass since Hogsmeade is in one park, and Diagon Alley in another. My husband owns a marketing consulting firm, and he declared that as good marketing! And, of course, much more costly, but well worth it.
The weather was much cooler on this day (mid-60’s), and foggy which made for a great day to visit the magical world of London, feeling it was somewhat realistic to their actual weather.
We next went to Diagon Alley where Morgan got to taste his first Butter Beer.
Morgan had previously emailed Universal to inquire about whether Butter Beer would be safe for him. He listed his food allergens, and got this response:
Hi, in Universal Studios, we have fruit stands in the parks with apples, oranges, grapes, watermelon on them. Also have lemon and strawberry slush carts which will be ok, also have turkey legs on carts that are just smoke plain. We have a full service unit it is Lombard’s landing and Finnegan’s, we have a chef in each unit have the server bring the chef to the table and he can go over all the things he can do for you In Islands of Adventure we have 2 full service units one called Confisco’s and one is Mytho’s, we have Chefs in both of those units, have server bring Chef to table and he can go over the things he can do for you, we have another walk up unit it is Thunder Falls, we have smoke chicken, smoke pork ribs, and roasted corn on cob and roasted potatoes with fresh herbs and salt and pepper, also have French fries all natural cooked in soy blend oil that is the only thing cooked in those fryers too. I will also say no desserts at all from any of the restaurants too.
We also have three broomsticks which have smoked chicken and smoked pork ribs, roasted corn on cob, baked potatoes, roasted potatoes with onions, garlic, salt and pepper, and fresh herbs and some salads too.
The butterbeer is nut free, is made in a separate room. Pretzels and popcorn are ok too. The soft serve is ok at florean ice cream shop, not the hard pack ice cream. The restaurants in citywalk will be able to help you with your allergy all units have 4 chefs in them
If you need any more information or help feel free to give me a call at 321-388-2123, Chef Bob.
We never purchased any food product in the park, but it was lovely to have all this information if we did. There was a lot of fish and chips on the menus in both Diagon Alley and Hogsmeade, but obviously there would have been safe food items if Morgan had wanted to eat.
There were several shops with candies and sweets in them. This is the ingredient label on the back of Chocolate Frogs which states, “Contains Milk and Soy. Allergen information: Shares Equipment With and Produced in a Facility Containing Milk, Egg, Peanuts, Tree Nuts, Wheat and Soy.” We didn’t find one candy that didn’t have this labeling. The candies were great for gifts, but not safe for Morgan to eat.
The Wizarding World overall was superb. If you go, you have to purchase a wand! There is a map of all the locations where the wand will work it’s magic…I’ll leave it at that because that’s part of the fun figuring out how to create the magic!
There were rides and shops throughout both parks, and once again we walked until our feet swelled! We road the train, the Hogwarts Express, in between the two parks.
The next day was a rest day to pack up and get ready to fly home. We realized that we had cooked 21 meals on the 4-burner stove in the Air BnB kitchen, and no one went hungry!
If your family is like ours, and doesn’t or can’t eat out, it’s still possible to have a wonderful vacation and cook every meal yourself. With a lot of pre-planning and preparation, we had the most wonderful, magical vacation!
I had a really unique opportunity last week. As the Student Body President at the University of Denver (DU), I get invited to events and special functions all the time – but this time was particularly special. The Broadway musical Rent was visiting Denver and our Vice Chancellor of Advancement at DU (his name is Armin) invited myself, the Student Body Vice President, and two of our student government representatives to go out to dinner with him and his husband and then see the play! Armin is essentially in charge of fundraising for our university, so this was quite an honor.
We began coordinating a dinner place over email. While the Vice President (Darylann) and I had previously had lunch with Armin, I had no expectation that he would remember my food allergies. He first offered a spicy Chinese restaurant in the area. I counter-offered with two local restaurants I knew would be safe (and not incredibly expensive either). Armin tried to reserve a table at either of those restaurants, but they were all booked up.
Instead, he hired a private chef.
I can say with absolute certainty, I’ve never had an experience quite like this. A private chef? At Armin’s fancy place in downtown Denver? And then a Broadway show?? I was completely blown away. Armin asked us to all send along our food allergies or other requirements so the chef could adequately prepare food.
One of the student government representatives, Jake, has Celiac Disease. Darylann has gastrointestinal issues that prevent her from consuming dairy. And I have my own food allergies to peanuts, tree nuts, sesame, shellfish, and fish. (The other rep, Scott, doesn’t have any intolerances or allergies). Darylann, Jake, and I all were joking the chef was just going to serve us a bowl of rice and call it quits!! We underestimated the chef’s ability severely.
The chef, Megan, was incredible. She prepared a four-part meal: a salad with vinaigrette and watermelon beets, a sautéed butternut squash with spicy vinaigrette and yogurt, baked chicken breast with mushrooms and a delicious creamy sauce, and cherry meringue kisses for dessert. It was all 100% safe. She double checked all of the ingredients, prepared Darylann’s dinner without the yogurt and cream sauce, and accommodated all of my allergies perfectly. It was incredible. She was completely at ease accommodating all of our food allergies and intolerances and double checked with all of us.
The show afterward was fun too!! I was still shaking in my boots by how awesome (and delicious) the dinner was and how successful the chef was in accommodating all of our allergies and intolerances. This just goes to show that multiple different food allergies can and will be accommodated in a professional setting with a caveat – make sure to speak up about your needs! This was an exquisite experience!
At the recent Food Allergy Bloggers Conference, there was an excellent session lead by Dr. Abby Herzig of WeBelay .
Dr. Herzig is a Child and Adult Clinical Psychologist who led one of the best discussions I’ve ever participated in about food allergy anxiety. The best part was the audience participation. So many Moms and Dads shared about their own anxiety, and that of their child. Some shared that their child was way too brazen creating more anxiety for them as the parent, while others were concerned that their child’s recent allergic reactions were affecting their ability to enjoy food and eat.
I had so much anxiety when my son, Morgan, was diagnosed with peanut and egg allergies in 1997 at the age of 18 months old. My anxiety was high because Morgan reacted not only foods, but also to pollens in the environment – dandelions were one of his worst reactions – and to dogs and cats. He also had weeping wounds of eczema all over his body. All of this created a fight or flight response in me every time I took him out of the house. I used to joke that Benadryl was a food group for him.
When children are too young to speak for themselves, it’s the responsibility of the parent to educate others about food allergies – and any other allergies too. And that’s a heavy load at times. How to stand up to extended family was a topic in the conference session, and many different ideas were brought forth.
Having everyone in the family over to our house was how we managed it. We cooked all the food that our son was going to eat, and we asked that none of his allergens – which grew to a list of peanuts, tree nuts, sesame, fish and shellfish – be brought into the house. (He outgrew his egg allergy by middle school.)
For some parents in the session, spending a holiday cooking for other family members wasn’t what they wanted to do. Some had made arrangements to go to other family’s homes with the caveat that none of their child’s food allergens would be served. For us, the biggest issue was the dog and cat allergies, and all of our extended family had one or the other in their homes.
At the conference, we discussed that managing extended family helps our children to learn boundaries as we set those boundaries about what is safe and what isn’t safe for our child. It isn’t easy to stand up to one’s mother-in-law, but showing a child how to do that gives lessons that no amount of talking can provide.
Another great part of the session was the support that everyone gave and received. Too many times on social media, I’ve found that parenting styles can be criticized. Food allergy accommodations are questioned by others as too lenient or too strict. When you’re looking someone in the eye during a conversation, it’s much easier to support them where they’re at, and to see their concern.
For those with children brimming over with anxiety, we spoke about the need for counseling to get underneath where the anxiety is coming from. Some children have stories in their mind about a recent anaphylaxis episode that might not actually be factual. Yet it’s important to discover what the story is, and to mitigate the anxiety.
My son has never shown much anxiety over his food allergies, even when he experienced anaphylaxis during a camping trip. When my husband called me from the ER, he put my son on the phone to let me know he was fine. My son’s first words were, “I’m not coming home.” Of course, I was an anxious mess hearing the harrowing tale of eating his first bite of fish, and I wanted to see him in person to ensure everything was okay. However, I yielded to his sense of himself, and agreed that he could stay with his Dad watching over him cautiously. Not every kid would feel that way after experiencing anaphylaxis, and that’s okay too.
If you or your child are experiencing debilitating food allergy anxiety, where depression is setting in and/or eating is becoming a difficulty for your child, I’d like to suggest: Share your feelings with a professional! You don’t need to suffer, nor does your child. Some of the strongest people I know ask for help.
If you or your child are experiencing food allergy anxiety on a situational basis, there are many articles and research online that might be helpful:
The online food allergy community can be a great resource too. There are Facebook pages for all age ranges, and various combinations of specific food allergies that are managed. Some local communities have in-person support group meetings on a monthly or quarterly basis, where you can meet people face-to-face managing a lifestyle similar to yours.
I’ve found the best anxiety reliever is to talk with an understanding friend…preferably someone who has been there!
I enjoyed another FABulous conference in Denver this past weekend with many of the top food allergy bloggers and consumer advocates.
This conference was the brain child of Jenny Sprague, who continues to run the conference along with Erica Dermer and Keeley McGuire.
My son was diagnosed with food allergies 20 years ago…before Facebook, before the Internet, before there was a support group or any food allergy conference, and before any food labeling law. About the only thing that was around was a very kind allergist who gave me copied materials from a non-profit group called Food Allergy Network (through several name iterations, it has now become FARE – Food Allergy Research & Education). It was a lonely place, and my neighbors certainly didn’t understand what it was like to try to raise a child with food allergies.
Going to the conference this weekend, I was most reminded of how grateful I am that there are so many people in the “food allergy world” now. Bloggers, parents, allergists, dietitians – all shared their experience, their knowledge, the latest research and hope. It’s not a group in which I ever aspired to be a member, but as I continue to walk the road of parenting a child – now a young adult – with food allergies, I am so thankful to be able to do so with a large group of friends.
Zac Chelini, a young adult with multiple food allergies, also spoke about his experience with bullying in grade school and beyond. If you’ve experienced bullying, or know someone who has, you can submit the experience on the website referenced above and help raise awareness of this very important issue.
The expo at the Conference is the best I’ve ever seen. It’s so wonderful to get to sample new products and foods – many of which are top 8 allergen free or more!
Enjoy Life Foods is a regular at expos and conferences, and for good reason. Their foods are free of the top 8 plus they are made without casein, potato, sesame and sulfites.
Kiss Freely is all natural, gluten and allergen free makeup, lip gloss, face paint and body cream. Their products are free of the top 8 allergens plus free of sesame, shea butter, peas, coconut, avocado and sunflower seed. I love the new body butter I discovered at their booth!
Allergy Superheroes empowers and protects allergy kids with their t-shirts, slap bracelets, buttons and Teal Pumpkins. Their focus is consistently positive and creative!
Sit By Me Bakery is a Colorado duo baking without gluten, wheat, dairy, egg, soy, peanut, tree nuts (they do use coconut*), fish, shellfish, seeds, potato, corn, yeast, artificial colors, and preservatives. They provided many of the sweets for the conference. Steve was nice enough to provide a cinnamon roll for my son, Morgan, to try. It was a hit!
The swag bags from the expo are filled with so many wonderful new treats, that I had to stop by my son’s place in Denver to share many of the goodies!
Free2b never allows peanuts, tree nuts, dairy, gluten/wheat, soy, egg, shellfish, fish, coconut, corn, mustard, or sesame in their plant or products. They are also free from artificial sweeteners, flavors, colors, sulphites, GMOs, hydrogenated oils and transfats. David continues to develop new products in an attempt to make them taste even better than their “original” counterparts.
There were probably two dozen more companies and products at the expo, so these are just a sample of a few of them. If you’re in Colorado, you REALLY want to come to this conference to sample all of the exciting new products every year.
For the past two years, Kaleo has been a major sponsor of the Conference. Evan Edwards is not only a founder and executive with Kaleo, he’s also a food allergy patient and parent. Which means that he’s just one of us. He participated in many of the sessions, learning about new research, and sharing his experience. It’s wonderful to have a pharmacy executive who is so down-to-earth. Kaleo has doubled in size as they continue to produce the wonderful Auvi-Q epinephrine autoinjector.
In separate blog posts, I will provide you some information that was shared about recent research and how to manage parental and child anxiety surrounding food allergies. Watch for those soon!
Thank you to everyone in attendance for a wonderful weekend!
The American Academy of Allergy, Asthma & Immunology recently released research on fatal anaphylaxis based upon research of deaths in the UK, France, Canada, Australia and the USA. They looked at fatalities from drug and venom anaphylaxis in addition to food anaphylaxis.
The research found that “Up to 5% of the US population has suffered anaphylaxis.” They found that fatal anaphylaxis is rare, and while drug anaphylaxis is increasing, fatal anaphylaxis to venom and food is stable. The time periods looked at for each country varied, but was at least for a time span of 10 years.
The research found that “infants and young children have the highest reported rates of food-related anaphylaxis and subsequent hospitalization, fatal food anaphylaxis in this age group is very rare indeed.” The highest risk for fatal food anaphylaxis occurs in the second or third decades (10-19 years old; and 20-29 years old). Most of the fatal food anaphylaxis occurred in people with a known food allergy where many of the previous reactions were not severe.
Another risk factor was the delayed use of epinephrine. This risk factor is the easiest to correct. Always carry your epinephrine autoinjector if you have been prescribed one!
Asthma is a risk factor for fatal food anaphylaxis, which was noted in approximately 70 to 75% of fatalities in the UK and Australia data. Yet, the data didn’t distinguish whether poor asthma control was associated with a fatal outcome.
Other risk factors were alcohol, recreations drugs and remaining standing upright in anaphylaxis. The researchers postulated that alcohol “or recreational drugs may, through disinhibition, increase the likelihood of accidental allergen exposure, mask the early warning signs of anaphylaxis, or suppress physiological responses to hypotension.” Also, alcohol can increase the absorption of food allergens into the intestine because of increased permeability.
In this research, which foods caused the fatal anaphylaxis was not reviewed.
What are the takeaways for food allergy families from this research?
Always have an epinephrine autoinjector within arm’s reach!
Be very mindful of teens and young adults and whether they are practicing a vigilant lifestyle around their food allergies. This training starts young, and children watch what we parents do, not what we say.
In our son’s school Health Care Plan, our doctor stipulated that should he experience any type of reaction, he should be laid down flat with his knees bent. She also stated that he should never be sent to the office, walking down the hallway, should he be feeling the beginning of an allergic reaction.
If your child has asthma, we have always been told that it’s important to keep it well managed to afford the best possible outcome if an allergic reaction occurs.
Have a frank, honest talk with your child about alcohol and drugs and the impact on all the areas of their life, but especially the consequences when managing food allergies.
If you’d like to read the full text of the research you can do so here.
At the recent FARE (Food Allergy Research & Education) walk in Denver, my son, Morgan, and I had the opportunity to have a long chat with Dr. David Fleischer of Children’s Hospital of Colorado. The conversation brought up a lot topics around living with severe food allergies.
When Morgan was 14 years old, he was sent by our allergist in Colorado Springs to see Dr. Fleischer, who was then at National Jewish Health in Denver. Morgan was going to have a food challenge to eggs and to pinto beans, and she didn’t want to have the challenge in her office because of Morgan’s past severe reactions and anaphylaxis to foods.
Morgan had to go through a battery of tests – a skin prick test and a blood test to ensure that his levels to both foods was low enough to warrant a food challenge, an asthma FENO (Fractional exhaled nitric oxide) test and numerous other breathing tests – before undergoing the food challenges. I was very impressed with the thoroughness of Dr. Fleischer, and the fact that the hospital prepared all the food to ensure proper dosing for the challenge.
He passed both challenges, which were done on separate days. Now 7 years later, we run into Dr. Fleischer at anything food allergy related in Colorado, and he always remembers Morgan and me. He’s very committed to assisting children with food allergy, eczema, and asthma and their families.
During our conversation at the FARE walk, we covered many topics. The most interesting topic was all of the ongoing research to find a cure for food allergies.
Morgan has never had an interest in participating in any of the studies, and at this point he is likely too old to do so under the guidelines of many research studies. At 21 years old, Morgan is accustomed to living with allergies to peanuts, tree nuts, sesame, fish and shellfish. He’s not interested in eating any of these foods, and he’s definitely not worried about cross contact to the point of limiting his activities. He is appropriately vigilant, and takes the time to prepare for any events that include food, and always carries his Auvi-Q’s.
For other food allergy families, who aren’t interested in trying out treatments, or participating in research studies, our family “gets it”.
Dr. Fleischer had commented that for Morgan, life is easier managing food allergies than being a study participant in the hopes of gaining tolerance. It was nice to get affirmation from Dr. Fleischer that Morgan can live a complete life, with all kinds of opportunities and adventures, managing his food allergies throughout adulthood.
Through the years I’ve shared our stories of managing food allergies (in our now college age son). Rarely have I shared stories about our adult daughter with celiac disease and mast cell issues. This time, I’m going to share about her recent experience, since there are so many things we learned.
Earlier in July, Michaela got overheated while being outside in the Colorado sun enjoying a festival. She was mostly inside a tent, but since there was no electricity, the air was stale and approaching 100 degrees. She estimates she drank 8 bottles of water during 4 hours of being at the festival trying to keep herself hydrated. She knew that she needed to keep pushing the fluids, even if it activated her interstitial cystitis. It’s a constant balancing act for her to drink enough to stay hydrated, but not end up in the bathroom every 30 minutes.
She began to feel drained and went back home and drank more water thinking she was still dehydrated. Her first mistake, we learned, was to not drink fluids with electrolytes. With her mast cell disorder centered in her gut, she is very careful to eat only organic foods and pure water. She doesn’t drink Gatorade because of the coloring in it, but there are electrolyte alternatives, we’ve since learned!
A few hours later she began vomiting every few minutes and having diarrhea, and felt thoroughly awful. At that point, I felt she probably needed an IV of saline to help her body get regulated. On a Sunday evening, there wasn’t any choice but to go to the Emergency Room. At the ER, we told them about her mast cell disorder and wondered if she could be triggered by the heat of the day and having a mast cell reaction. The nurse on duty was somewhat aware of mast cell issues, which was nice. They put in an IV, gave her saline, and Zofran (to ease the nausea), and gave her oxygen since her pulseox was low. She still wasn’t feeling great, so they gave her 25 mg of Benadryl with some extra saline so it wouldn’t burn on the way in.
Shortly thereafter, she began saying “I feel so disconnected” over and over again. Then, within a few minutes, she had a grand mal seizure right in front of my husband and me!
We’ve been through a lot of medical issues with our children through the years, but nothing compares to the horror of observing a seizure of this magnitude. It lasted for about 20 seconds, which seemed like 20 years. She was frothing at the mouth, with a horrible guttural sound emanating. Her arms were drawn up to her chin, wrists bent, while her face and chest turned beet red. Her eyes rolled back into her head and she became unconscious. We screamed for help and the medical staff came running and gave her 2 mg of Ativan.
Once the seizure stopped, they took her in for a CT scan of her brain to see if there was something occurring there, and she had another seizure, from what we were told, during the scan and received another 2 mg of Ativan.
Since we were at an Urgent Care Facility that transforms to an ER in the after hours, they needed to get her to a hospital for observation overnight. She was transported by ambulance to St. Francis Hospital, and my husband joined her for the ride while I drove behind in the car. She was completely unable to respond to any commands during the ride to the hospital. My husband said that the EMTs kept talking to her trying to get her to squeeze a hand or say something. There was no sign of any cognition or awareness at that point.
I called our son, Morgan, during my drive to let him know what was occurring. He is in Denver working this summer, and by this point it was 10 pm. He jumped into his car to make the hour drive to the hospital.
By the time I arrived, she was processed into a room. We were told there was nothing on the CT scan that would indicate it was a brain disorder causing the seizure. The hospital doctor thought that it was too much water, and not enough electrolytes since her sodium count was at 126. (Her normal sodium count is 140 from previous blood tests).
Morgan arrived by 11:30 pm and walked into the room, got really close to Michaela’s face and called out her name. It was the first sign of any recognition or response when she mumbled “back hurts” and then a tear rolled down her cheek when he was talking with her.
She slowly was able to respond to commands, but was completely confused as to where she was and why. We would go through the entire story, and 15 minutes later, she would ask again, “Where am I?” It was frightening, and we worked on not jumping to conclusions.
My husband remained in the hospital overnight with her, while Morgan and I went home to catch a few hours of sleep. All night she was writhing in back pain as the doctor and nurses tried to figure out why. They took an x-ray, which showed nothing broken in her back, and they summarized it as muscle spasms from the seizures.
The next day Michaela was sent home with instructions to do a follow up with a neurologist and her primary care doctor. The chest x-ray showed no issues of aspiration, so we felt she’d do better at home getting some sleep. She had virtually no short term memory though. We were frightened that there was a serious cognitive issue occurring, and spent a lot of time Googling seizure side effects and the aftermath.
Within 24 hours of her release, she was running a 103 temperature, and back to the emergency room we went – this time to the ER attached to St. Francis hospital. The ER doctor was concerned about meningitis, so a spinal tap was ordered in the ER. It thankfully showed negative. Then the chest x-ray came back and showed that she had aspiration pneumonia. She was hooked up to an IV for saline, and put back on oxygen because her oxygen percentage was plummeting into the low 80’s.
There wasn’t one doctor or nurse who was aware of mast cell activation disorders, so we were explaining over and over again what medicine to give her and what not to give her. Thankfully, each person was receptive enough to listen and to learn.
She was put into the hospital overnight again. She began receiving IV antibiotics immediately. She cannot tolerate Tylenol or any NSAIDS (NSAIDS are a mast cell degranulator and not recommended for those with mast cell issues). Therefore, the nurses brought cool cloths and ice packs to bring her temperature down.
Her back pain was still horrific, so she was started on an IV pump of Fentanyl, the only pain medication suggested for mast cell patients, other than Tramadol. That began to help the pain subside, and to allow her to rest.
The neurological tests were ordered while she was in the hospital. She had an MRI and an EEG of the brain. Nothing appeared to be abnormal, which was an incredible gift. The short term memory loss, we were told, was a normal by product of the seizures and should get better over time.
An MRI of her lumbar spine showed two bulging disks, which were the source of all her back pain. It was postulated that the seizure caused these, which is amazing that the body can hurt itself so badly!
Since Michaela owns a pet sitting and dog walking business, she was trying to keep up with everything while in the hospital. The short term memory loss made for some interesting issues as I tried to work her phone and to ensure all the dogs, cats, and pet sitters were taken care of! At one point, I had to ban her from being on the phone unless I was there to ensure she didn’t schedule something and then forget!
While she was in the hospital, my husband and I were running home to cook her safe foods to eat and then transporting them to her room. There was nothing on the hospital menu that was organic. And the hospital had no refrigeration that we could use, so we were bringing coolers from home or getting ice from the nurse’s station and adding it to mini tubs in the room to keep her food refrigerated.
It was a very long week. By Friday, we were both so exhausted from tag teaming. I slept in the hospital for 3 nights (if you’d call 3 hours of interrupted sleep really sleeping!) and then went home for a short nap. After that I monitored her pet sitters and her business during the day. My husband slept at home and then cooked safe food for her. He worked from her bedside during the day, and continued to train doctors, nurses and CNA’s about mast cell issues and celiac disease.
The infectious disease doctor wanted to release her with oral antibiotics since she’d had 3 days of IV antibiotics by the time she was being discharged. We nixed that idea since she has had so many gut issues with antibiotics, and were thrilled that she was tolerating the medication as well as she was. The doctor agreed to have a PICC (peripherally inserted central catheter) inserted into her arm to her heart, and to have her Dad and I taught by a home healthcare nurse how to administer the antibiotic every 6 hours around the clock for another 5 days.
In the almost 4 days she was in the hospital on the second round, we ran into only one CNA who had heard of mast cell activation. She had just taken a biochemistry class in school where it had been discussed. There were so many conversations where we had to explain what could occur if she was triggered by, for example, contrast dye in an MRI. There is so much need for the medical community to be trained on Mast Cell Activation!
Once home, we began the around the clock antibiotic administration. It was almost like a feeding schedule of a newborn baby.
After being on antibiotics for a few days at home, she began to experience burning mouth – a sign of oral thrush. We then added Fluconazole to her list of drugs administered through her PICC line.
When she visited her primary care doctor, as a follow up to the hospital visit, he thought that the heat had triggered a mast cell “event” creating the massive purge of vomiting and diarrhea that she experienced. On top of that, her not drinking electrolyte water created a sodium imbalance. The two issues combined to drop her sodium suddenly, creating the seizure. That was his best guess as to the cause of the seizures. We may never know for sure. However, we’re very grateful that it doesn’t appear to be anything related to her brain function.
She visited a wonderful chiropractor that has helped to re-align her back so that the 2 bulging disks are slowly dissipating.
With mast cell issues, and the various autoimmune diagnoses that she has, keeping her body in balance is a daily struggle. She has learned that she’s going to have to be FAR more careful about being in high temperatures and getting overheated. She’s also discovering many electrolyte drinks to enjoy.
It’s amazing what the body can go through, and that it can heal! We so appreciate all the love and prayers you have provided to her and to our family through this harrowing episode.
If you’re like me you’re prepared for an ER visit for an accidental food allergy exposure – even if you hope it never happens! However, when there’s an ER visit for a non-food allergy related event, different issues can come up in the hospital, and it’s vitally important for our grown children to know medical details about themselves. We learned and confirmed this firsthand this past weekend.
My college age son is working and living in Denver this summer. He awoke last Saturday morning feeling like he was catching a cold. Within a few hours, this turned into severe stomach pains above and around his navel, especially on the lower right side. After 7 hours of feeling worse and worse, with oncoming rounds of nausea, he called my husband and I via Facebook messenger (more on that detail below!) We went through the usual questions of “did you eat anything new?” and “what are your symptoms?”
After listening to his complaints and the severity, we were concerned about an appendicitis or a gallbladder attack (since gallbladder removal is common in my family). He hadn’t eaten anything new, and didn’t feel like he was dealing with anaphylaxis presenting itself differently. We felt he needed to get to the ER to be seen by a doctor and to have tests run. We have learned to not mess around with medical issues with Morgan, with his past history of anaphylaxis and other illnesses in college.
After learning that he was alone in his apartment – all 3 roommates were out of town – we needed to figure out what to do at 8pm on a Saturday evening to get him to be seen by a doctor. He was feeling so awful that he didn’t feel like he could drive, and didn’t want to wait an hour for us to drive to Denver to pick him up. After several text messages, he was able to find a friend in Denver willing to come pick him up and take him to the ER at Swedish Medical Center, which is less than 2 miles from his apartment.
His phone battery had been ceasing to stay charged, along with the phone having a shattered screen, so everything was being coordinated on an iPad with no data plan utilizing Facebook messenger on wifi, and texting, with no “regular” phone voice communication . Oy!
Morgan was picked up by his friend within 10 minutes, and we jumped in the car for the one hour drive to Denver. Thankfully that late at night there was less traffic. The same route during the day could take twice as long, and believe me every minute feels like an hour when you’re trying to get to your child in the ER.
Once we arrived, Morgan had already met with the physician’s assistant, reviewed his food allergies, and explained that he has had adverse reactions to pain meds (vomiting) when she offered him some pain relief. The PA ordered a blood draw, an IV saline drip, and a CT scan of his abdomen. When she heard that Morgan was allergic to shellfish, she wanted to ensure that the iodine dye in the CT scan was going to be safe. (Note: this is an old allergy myth that those allergic to shellfish will be allergic to iodine. The proteins are not the same, and therefore there is no risk. However, you can be allergic to iodine, and those with mast cell issues can have severe reactions to contrast dyes.)
We were very impressed with the thoroughness of Swedish Medical staff – physician, physician’s assistant and registered nurse – and their attention to the details of Morgan’s allergies and allergy history. I’d rather they be extra cautious about his food allergies than to blow past the long list of food allergies that he has (peanuts, tree nuts, sesame, fish and shellfish). They also listened to his history of pain medication issues, and honored his wishes to not take any of these medications.
This was the first time that he’s been over 21 years old at an ER. My husband and I were basically observers. All forms were signed by him, and all medical questions were answered by him. Of course, the required copayment was paid by us, since as a student, he is still on our insurance!
It took only a little over 90 minutes from the time he entered the ER to receive results of the blood tests and CT scan. Very impressive for a Saturday night! The CT scan showed no stones in the gallbladder, and the appendix appeared to be fine. Therefore, the stomach cramps could be from the virus he had, from an ulcer, or the start of some issue much larger – like the gallbladder or appendix – and it was too early for them to see anything on the scan. Who knows exactly what it could have been, in other words!
We rang in Father’s Day at midnight waiting for a little medication to be delivered. The IV saline drip was definitely helping Morgan feel better, even though he didn’t believe he was dehydrated. The doctor gave him a ” digestive cocktail” of Pepcid, Maalox, Lidocaine and Benadryl, which tasted awful but helped the stomach and intestinal cramping tremendously. He also walked out of the ER with prescriptions for more Pepcid and Zofran, an anti-nausea drug.
One of Morgan’s roommates had arrived back at their apartment while he was at the ER and was willing to be ‘on call’ should anything happen overnight necessitating assistance. As a Mom, this was a hard one – to let him go back to his apartment instead of coming home with his Dad and me. He’s a young man now, and he believed this was the best choice for him.
At the time of this writing, he is feeling much better and we’ve chalked up the ER visit to “who knows”! We’re very grateful Morgan knew to not wait until the middle of the night to ask for help. And we’re also grateful for the staff at Swedish Medical who treated him with utmost care and respect toward his food allergies and his wishes.
It is vital for our children with food allergies to know the details of their food allergies and medical history. I’ve written a blog post here about what we ensured Morgan knew before he went to college. Morgan’s previous issues with pain medications aren’t considered an allergy, but they are definitely pertinent for him to share with a doctor.
My husband and I enjoyed a traffic-free drive home to Colorado Springs in the early morning hours of Father’s Day grateful that no surgery is in Morgan’s immediate future. And hoping that he gets his phone fixed this week!
Food Equality Initiative (FEI), based in Kansas City, Kansas, provides hunger relief for those with celiac disease and/or food allergies through its pantry of safe foods for families in need. As its website states, “Food Equality Initiative, Inc. (FEI) is a recognized non-profit, public benefit corporation established in 2014 by Emily Brown and Amy Goode, to support the low-income food allergy and Celiac communities by providing safe, healthy gluten free and allergy friendly food, nutrition education and advocacy.”
For those of us managing either food allergy or celiac disease, we know how expensive it is to purchase safe foods. Yet, imagine if you couldn’t afford to purchase safe foods for your child! And to make matters worse, when you went to a food bank, there were no safe foods for you to obtain. Or imagine if you applied for WIC (Women Infants & Children) only to find out that there are no substitutions for peanut butter, milk or whole wheat bread. This is why FEI was created.
FEI is advocating for WIC substitutions in addition to the following, as quoted from their website:
Establish best practices for the charitable food system to identify, sort, store, and distribute special diet foods
Establish nutrition policies that reflects the needs of food insecure individuals with special diets in school and community settings.
Push for legislation that provides Insurance coverage of gluten free and allergy friendly foods for a medically necessary diet.
The amazing part of FEI is that not only do they have a pantry in Kansas City for families with food allergies & celiac disease to shop in. They could also box and ship safe foods to families requesting such from around the USA if they had more funding. This all costs A LOT of money!
This is where FEI could really use the assistance of the food allergy community. There are many areas of the USA where families are in need of having a pantry of safe foods set up, similar to what FEI has created in Kansas City. If you have the desire to create this in your community, please contact FEI through their website here.
Donations of money are always appreciated. You can donate directly to FEI on their website here.
If you’re reading this blog post and need assistance in affording safe food, please click here for more information about qualifications.
I applaud Emily Brown and Amy Goode on creating this wonderful organization, and I encourage each of you to support families in our community that can’t afford to provide safe foods for their children by donating your time or money to FEI.
Food Allergy Awareness Week is May 14-20 this year. Several of the food allergy non-profit groups have resources and suggestions for you to increase food allergy education and awareness in your community.
FARE (Food Allergy Research and Education) has resources and links here. FAACT (Food Allergy & Anaphylaxis Connection Team) has ideas of activities here. Kids with Food Allergies has social media awareness tools here. Turn It Teal has a listing, and an ability for you to suggest a location, of all buildings lit in teal (the food allergy awareness color) during the week here.
There has been a big push to get elected officials to declare the week with a proclamation. I’ve always felt that unless this is followed by specific education, and awareness information disseminated to the public about food allergies, or a food allergy awareness event, there is little gain for the food allergy community with a piece of paper.
When my son was in school at a public K-12 school district, our Food Allergy Task Force would create a press release for each of the 30 schools in the district (elementary, middle and high school) detailing information about food allergies – how many children have food allergies, what the symptoms of an allergic reaction are, and how to have fun without food! These public service announcements were very valuable and generated discussions for families, teachers and administrators. This Task Force is celebrating 10 years of existence this spring, and continues to create more food allergy awareness throughout the school year.
For May 14-20 of this year, create some food allergy awareness in your family, with friends and/or in your community! It may save a life.
Betsy Craig and her husband, Rocky, started AllerTrain, an ANSI accredited food allergy and gluten-free training course offered by MenuTrinfo (which, according to their website is “dedicated to bettering the food-service industry by providing two major services: Certified Nutritionals and food allergy/ gluten-free identification and education”.) The course teaches foodservice professionals about the top foods causing food allergies, proper protocol for preparing food so to avoid cross-contact and to how better serve diners with special dietary needs. This will help restaurants avoid food allergy related incidents, and prepare them to handle such incidents, should they occur.
Where did the idea of AllerTrain originate and how long have you been in business?
AllerTrain was born out of my original business MenuTrinfo (mash-up of the words menu – nutrition – information). Once we set up our company nutritional software for industry in 2010 my husband realized he could tag allergens in menu items for the restaurants we provide nutritional service for. I knew that in order for it to help those with food allergies, and this new movement of gluten-free, that training needed to be in place to make a difference. Having food allergy friendly food was only step one in keeping diners safe and meeting special dietary needs.
I reached out to others in the food safety, restaurant, food nutrition, and training space to begin to build a training program I called AllerTrain. This was October 2010.
Can you explain AllerSTAR and MenuTrinfo?
AllerSTAR takes learning objectives taught in the AllerTrain educational programs and makes them singular training points taught through a monthly poster and toolkit program. This is to enhance the learning in AllerTrain and also to keep the topics of food allergies, gluten free and proper standard operating procedures on top of mind. This poster training program is for all employed at a restaurant or college who does the month AllerSTAR program. Teach, test and sign off on the learning object creates ownership with the industry and staff at any food location that takes part in AllerSTAR.
I’ve seen that you’re training many chefs in colleges who have Sodexo. What other groups are you training?
Sodexo was a clear, eager and super helpful early adopter partner for AllerTrain but we have many folks who have trained within AllerTrain courses. Folks at almost all Ivy League schools, key brands like Eat’n Park in PA, Glory Days Grill in the New England area, a part division of Panera Bread in TN, WV and VA, Cattlemen’s Steakhouse in CA, universities and colleges throughout the US (in the FARE college training program and out). College food service management companies like Parkhurst, Culinart, Aramark, and Chartwells. Many different private schools, a number of public K-12 districts, hundreds of schools in Texas, Training centers throughout the country, Amtrak, over 300 health officials in Virginia, over 75 food service professionals that work within the federal prison system, Food service managers at airports in a number of major cities, the head of F&B for the Olympics, and the list goes on and on…..
Can you tell us what is involved with training a chef at a restaurant and the staff?
A combination of training of the disease of food allergies, Celiac and intolerances, best practices for front and back of house, policy and procedure assistance and emergency protocol. Ongoing training is also a major key to keeping folks trained and confident.
Does your training cover cross contact?
Yes there is a great deal of focus on cross contact. It is key to successful food prep, cooking, delivery and satisfaction.
Do you suggest that restaurants and dining halls use separately colored utensils in the preparation of meals for food allergy and/or gluten free customers?
We fully and completely promote this concept and encourage the use of separate colors for food allergies and Gluten-free. We use the same color for both of these special dietary needs, as the method to keep people safe is the same. That is also why we teach both in AllerTrain. The teaching and tools are the same and desperately needed for success.
Do you provide ongoing training for a site and their employees? Or is it just a one time training?
Ongoing training is addressed through the AllerSTAR program. Also many locations and universities have their staff go through AllerTrain once a year despite the fact the certificate is good for 5 years. They want to keep the information top of mind yearly.
Thank you so much Betsy for creating this wonderful program to keep those with food allergy safe when dining out or in college!
When my son, Morgan, started kindergarten in the Fall of 2001, we had already experienced every private preschool in our city denying my son entry. There was minimal food allergy awareness at that time, and no one had heard of a child reacting to touching peanuts! Preschool teachers and administrators were afraid to learn how to administer the EpiPen and didn’t want to take on the liability OR they didn’t want to provide an allergen free classroom. Therefore, they said they didn’t want him as a student.
This was heartbreaking to my husband and I. We had no idea what it felt like to be denied schooling for our child. I had big thoughts about filing a lawsuit against the various preschools, however I soon realized that I didn’t want to fight for Morgan to be admitted to a school that didn’t want to take proper care of him.
I continued my search, and my son finally landed in a public preschool within our school district, where the teachers were more than willing to provide an allergen-free classroom and to learn how to administer the EpiPen should that be needed. Thankfully, he had a wonderful experience, and never had an allergic reaction since they removed all of his allergens (peanuts, tree nuts, sesame, fish and shellfish) from the classroom.
Once he started kindergarten, the elementary school counselor had the foresight to put Morgan on a 504 Plan. She had already met with the school district 504 Coordinator prior to the start of the school year, and had received approval. This provided accommodations for him to have equal access to the curriculum. The Plan was pages long outlining classroom safety, EpiPen training, field trips, playground monitoring, and stipulations for all the other classrooms he would visit in a school day being allergen-free in addition to many other items.
This was long before the ADA Amendments Act of 2008 when eating was added as a “major life activity”, so the school district was really stepping out to put Morgan on a 504 Plan, (which he kept from kindergarten through 12th grade). I know many of you reading this are likely still fighting for all the 504 accommodations you believe your child needs. We were completely blessed with a school district who not only understood the law, but also were child-centered and wanted to create a safe, educational environment in which every child can learn.
Parents of other children in the classroom (and the school!) weren’t happy about the accommodations, especially if it meant that their child couldn’t eat a Snickers bar for snack. The school Principal kept a strong backbone, and stood up for Morgan (and me!) more times than I can count. She knew the law, and she knew what was right and what was necessary for Morgan to be in school safely.
If you’ve been reading my blog (and newsletter before that), you know that we had many ups and downs through the years battling other parents bullying and ignorant teachers. Yet overall, our experience was good, because 1) Morgan never did experience an allergic reaction and 2) if there was ever a question that the 504 Plan wasn’t being followed, a Team meeting was immediately called and the Plan prevailed.
During Morgan’ senior year of high school, he applied for and received the Boettcher Scholarship, a 4-year, full ride scholarship (available only to Colorado high school seniors) to any Colorado college of his choice. Only 40 scholarships were given his graduation year, which makes it the biggest honor of any Colorado senior. This is what equal access to the curriculum can yield from a Free Appropriate Public Education.
With all of our experience as a backdrop, when I read about the confirmation of Betsy DeVos as the Secretary for the Department of Education, after a hearing in which she, at best, is confused about the IDEA, and at worst, doesn’t realize it is a Federal law, I think of my son. What would have happened to his education had he not been admitted to an elementary school because of his food allergies? Or if he had been admitted, but had to worry every day about allergens in his classroom? You can’t learn in those situations. And it’s why we food allergy parents need to ensure that the IDEA remains in the forefront of Ms. DeVos’ mind as she seeks to revamp the entire public education system.
I’d like to introduce you to Steve & Angie of Sit By Me Bakery, a Branson, Missouri based company that creates wonderful cakes, pies, bundtlettes, cupcakes and cinnamon rolls that are baked without wheat, dairy, egg, soy, peanuts, tree nuts, fish, shellfish, seeds, potato, corn, and yeast! And they deliver!
For those of you who have attended the Food Allergy Bloggers Conference in Denver, you got to taste these wonderful treats! Not only are they delicious, they are also beautiful!
Hello Steve & Angie! Could you please share with us what food allergies your family manages?
Hi! Thank you for interviewing us! I (Angie) am allergic to milk, tree nuts, lettuce, and yeast. Steve is allergic to eggs, soy, and corn, and lives with Celiac Disease. Our oldest son is allergic to tree nuts. Our youngest son is allergic to tree nuts, soy, shellfish, and a long list of seeds.
How did Sit By Me Bakering come into being?
I write a blog about mental health and chronic pain issues, and Steve is an environmental scientist.
A year ago while at Enchanted Grounds, a coffee shop that sells board games, and hosts gaming meet-ups, I turned to Steve and asked if he thought we could open a similar establishment, geared toward the food allergy community. He said yes! That’s how Sit By Me Bakery was born.
Are your children part of the baking process? What do they think about this wonderful business?
While they do cook and bake, our sons do not help with business baking. They are, however, willing to be taste-testers, which seems like a great job, but actually requires a good measure of courage! They are excited about our business and we’re grateful for their interest and encouragement.
How did you find yummy recipes for cinnamon rolls, cakes, bundtlettes, pies and cupcakes without the top 8 plus without yeast, corn, seeds, potato and corn?
We started by converting old, basic recipes from the Betty Crocker Cookbook, but it didn’t go well. We read a lot, studied ratios, and began building recipes from scratch. Our current bakes are the culmination of five years, countless tears, and many, MANY experiments in the trash! Remember those taste-testers I mentioned? You can thank them for our delicious bakes! They worked very hard!
What is your best selling item?
When we first began, people mainly purchased cupcakes, but now cinnamon rolls are the clear winner! We often hear, “it’s been years since I had a cinnamon roll!” or even more touching, “my child has never had a cinnamon roll, and now they can!”
Do you plan on having a store front in the future?
Our vision is a commercial space where we serve desserts and coffee, and host meet-ups for food allergy individuals and families. It would also be great to meet the needs of more people by shipping bakes and getting our mixes onto market shelves.
Is there anything else you’d like to share?
Thank You to Colorado’s food allergy, Celiac Disease, and EoE community! We look forward to growing into a bakery that not only delivers your birthday cakes, but also invites you into a safe space for a slice of pie and a coffee.
Thank you Steve & Angie!
Nicole’s Note: I ordered a cake from Sit By Me Bakery for my son’s 21st Birthday to be delivered to his apartment near the University of Denver (when the company was still located in Denver) to surprise him. I’ve always had to bake cakes for him because of the cross contact issues in all the bakeries near our home in Colorado Springs.
My son said the cake was absolutely delicious – it’s the chocolate cake with vanilla frosting and ganache on the top – and a wonderful way to celebrate his birthday with his 3 roommates!
*** UPDATE ***
Angie and Steve experienced a sudden change of circumstances and subsequently moved their family and business back to their previous home of Branson, Missouri in January 2018. Their storefront bakery will open in Historic Downtown Branson in May 2018, and they look forward to serving both the local community and tourists. They visit Denver frequently, and have plans to make deliveries a part of those trips. In addition, some Sit By Me Bakery treats will soon be available for mail order! Angie and Steve thank the food allergy community for their continued support.
Kiss Freely products are free of the 8 major allergens and then some! They avoid the use of other potential allergens such as sesame, shea butter, peas,coconut, avocado and sunflower seed. Below is an interview with Jennifer Kurko, the Founder of Kiss Freely, to find out about these wonderful products.
Hello Jennifer. Can you tell us how you thought of creating Kiss Freely?
My oldest daughter was diagnosed with multiple food allergies when she was 9 months old. I really thought we were beginning to navigate life with food allergies pretty well. Until one night when I kissed my daughter on the cheek and she broke out in horrible hives. I knew it was not from the food I had eaten because we keep a house that is free from her allergens.
It actually wasn’t until a few days later that I realized it was my lip balm. It contained almond oil, Up until that moment, I had not thought to look at what was in personal care products. I went through everything in the house and threw out almost all our lotions and lip balms. All my makeup. I wasn’t able to find a safe line of products and as most food allergy moms know, you are already making a ton of food so making my own lip balm didn’t seem like too much of a stretch!
From there I began making body butter and make up. Friends began asking me to make them products. My daughter one night at dinner said, “I can’t be the only one who needs special lip balm. You should sell them.” We formed Kiss Freely so that people who did need “special” lip balm and other products would have those options.
What allergies do you manage in your household?
My oldest daughter is allergic to dairy, eggs, tree nuts, peanuts, sunflower seeds, flaxseeds, beef and sesame. My youngest daughter is allergic to eggs and is in the process of being tested for EoE and celiac disease.
What makes Kiss Freely so special for the allergy community?
Kiss Freely is unique in that it is the only cosmetics and personal care items to cater to the food allergy community. It is top 8 free. I also took great care to make sure we did not include other highly allergic ingredients so we are free from a lot of thing such as coconut, sunflower, corn.
I completely understand cross contamination. Our workshop is top 8 free. We use dedicated equipment for all our products.
I also wanted the products to be as natural and environmentally friendly as possible, so all our products are vegan. We use organic ingredients whenever possible.
I also take custom orders. They are my favorite because I know someone is able to participate fully in an activity or finally wear their favorite color lipstick after years of being allergic to it. I make a ton of custom dance orders and I am in the process of making the black under eye color for a young baseball player. I cry every time I get a picture of the person wearing our products.
What is your top selling product(s)?
Orange lip balm is our best seller. Our face paint is a close second though!
I love the face paint that you sell. Have you had any customers that can’t tolerate this product?
It was so nice to see so many kids get to use face paint for the first time! We have not had any customers who could not tolerate it. I try to use the least amount of ingredients as possible in every product. The products are simple, natural and that really helps most people be able to tolerate the ingredients.
I see that a portion of your income goes back to food allergy organizations. Which non-profits do you support?
We have supported FARE and FACCT both locally and nationally. We also really like to be involved with supporting local allergy and advocacy groups. That’s the wonderful part of growing as a business is being able to give more back and be able to make a bigger impact in the food allergy community.
Is there anything else you’d like to share with us?
We are always looking to create new products. We hope to have shampoo and mascara in the next few months. Longer term, we hope to create a safe sunscreen.
Thanks so much Jennifer!
Note from Nicole: My daughter, who has celiac disease and a mast cell disorder loves these products. She too has had multiple reactions to other makeup and has thoroughly enjoyed the products made by Kiss Freely.
There will be 3 epinephrine autoinjectors on the market effective February 14, 2017: the EpiPen, Adrenaclick and the Auvi-Q. All three devices are available in a Junior strength for children, and an adult strength.
Listed below are the pros and cons of each of these devices based upon my experience and upon the information available on their websites:
The EpiPen has been around since 1977, and owned by Mylan since 2007. There has only been one recall that I’m aware of, which was in 1998 when Meridian Medical Technologies manufactured the device. Almost 1 million devices were recalled since they weren’t providing effective doses of the medication.
The Adrenaclick has been on the market since mid-2013. The training video states that it needs to be held for 10 seconds after administration.
The cost at CVS pharmacies. With a $100 coupon, the cash price is $9.99.
The lifespan. Adrenaclick’s have an expiration date at least 24 months out.
Less bulky than the EpiPen.
No trainer comes with the package. You will need to contact the company and request to have a trainer sent to you. You can do so here.
Fewer people have been trained on the Adrenaclick in school systems and elsewhere. This may change as more people purchase the device and bring it to school, etc.
The cost at approximately $400 with high deductible policies if you don’t purchase the device at CVS.
The needle is exposed after use.
You need to pull both tabs off of both ends of the device before administering it. This can make for confusion as to which end to use for injection, even though it has a red tip. Seconds count in an emergency, and a layperson may have more difficulty with this.
The Auvi-Q was originally manufactured by Sanofi, and was introduced in January of 2013. A recall of all devices occurred in October of 2015 when two dozen of the devices were suspected to have not administered the correct amount of medication. Sanofi no longer manufactures Auvi-Q. Instead Eric and Evan Edwards, the inventors of the Auvi-Q, brought the manufacturing back to their company, Kaleo Pharmaceuticals. Both Eric and Evan, and their children, have life threatening food allergies.
The Auvi-Q training video states that the device needs to be held for 5 seconds after use.
The device can talk anyone through the administration of epinephrine.
A trainer comes with a prescription.
Size. It’s about the size of a thick credit card, which makes it easy to carry in a front pocket for men.
Cost. Kaleo is promising $0 out of pocket cost, even for those with high deductible insurance!!
The needle is not exposed after use.
The makers of Auvi-Q have food allergies themselves, as do their children. In other words, they are one of us – the food allergy community AND they have a social conscience when it comes to pricing autoinjectors.
The previous recall may be on some people’s minds; however, with the manufacturing moved in-house, I believe this issue has been resolved.
The lifespan of at least 12 months. But if you’re paying $0, I don’t believe that’s as big of an issue!
I was the woman at the end of the video clip who isn’t so thrilled about the Adrenaclick being offered for $109.99, and I’d like to tell you why!
First off, there’s a confusion that the Adrenaclick is the generic EpiPen. This is not true. In fact, a local CVS pharmacy that I called tried to tell me that the Adrenaclick is the generic EpiPen!
(Side note: Mylan is offering the brand name EpiPen as a generic at a $300 price tag for a two-pak. The brand name’s price tag currently runs upward of $600, however there are coupons that can bring the price down by up to $300. Cigna also announced on 1/12/17 that they will no longer be honoring prescriptions for the brand name EpiPen, only the generic.)
If you want your allergist to prescribe an Adrenaclick, you will need to have a prescription specifically written for the medication. And if your allergist is like ours, they may not prescribe it. (More on that later).
Next, to obtain the $9.99 price that’s quoted in the video for an Adrenaclick, you may need to pay out of pocket the $109.99 at CVS, submit a rebate form to the company, and wait for the $100 refund. To me, that’s not the same as a $9.99 price at the pharmacy. And remember you have to purchase the device at CVS in order to get this price.
As I said in the clip, I’ve been trained on the Adrenaclick. It isn’t near as easy as the EpiPen to use, nor is it as easy to train others, (especially since the package DOES NOT come with a trainer). It was for this reason that our allergist was not willing to prescribe Adrenaclick for our son prior to his study abroad in the fall of 2016. With him being in different countries where different languages are spoken, and eating different foods, she didn’t want to exacerbate the issue with him having a new autoinjector that he hadn’t ever used before nor had never trained anyone else how to use.
Many K-12 schools and school nurses are not trained on this device yet. If you plan on purchasing this autoinjector, make sure that everyone who could potentially need to administer it has ample training and feels comfortable using it. What may seem obvious to you or me, as an allergy parent, isn’t so obvious to a school administrator or teacher as far as the difference in this device and the EpiPen.
The Adrenaclick training video states that the device should be held for 10 seconds, instead of the current 3 seconds for an EpiPen. And, if you use the Adrenaclick, the needle remains protruding. I always disliked this about the EpiPen prior to its most recent redesign. I very much like that now the used EpiPen has the needle protected to ensure that no injury occurs after injection.
I am excited for competition in the marketplace, and I’d love nothing more than to have an epinephrine autoinjector cost just next to nothing!
I’m really excited about the reintroduction of the Auvi-Q, which should occur within the next few months. What’s really great about it is that it talks the user through the steps to administering it!
The Adrenaclick is just too similar to the EpiPen to cause enough confusion for the administration of the device to be compromised. It’s not a good alternative for our family.
Shelter in Place requires that you remain in your home or the location where you currently are situated. This can be very problematic if you haven’t stocked up on your child’s safe foods or medications at home; or if you are stuck in a store without an EpiPen!
Here are some of the ways that we have ensured that we are always prepared should a Shelter in Place be activated for our home, or activated when we have left our house:
Discuss with your family every individual’s needs, and have a box, envelope or carrying case for all items listed below.
Always have two unexpired epinephrine autoinjectors on hand. (This means that autoinjectors are always carried, even if eating isn’t planned). At home, we have at least two more as a backup, plus multiple sets of expired EpiPens, just in case!
Have a working nebulizer, along with unexpired medications, and clean apparatus tubing and mouthpieces. This is difficult to keep on your person when leaving your house, so we had an inhaler and spacer with us at all times, when our son was younger and his asthma was more active.
Have extra asthma medications and spacers on hand.
Any other medications that your child may need – Benadryl, Zyrtec, etc. – need to be on hand and within expiration dates. We always keep at least a 30 day supply of all medications.
Keep safe foods in large quantities on hand. Running down to the last slice of safe bread, or allergen-free milk, before re-ordering will make for grumpy children. And it will inevitably occur when you can’t run out to the store, or when Amazon is unable to deliver!
Now is not the time to try out new foods. Sticking with standard favorites, and products that you know are safe will mitigate any cross contact with an allergen.
Always bring a cell phone with you when you leave your home. If you end up sheltered in place, you can contact other family members to let them know where you are.
When our son was younger, we never left the house without safe snacks tucked into my purse.
Many customers in Colorado Springs lost power for hours of the day today. This is a VERY unusual situation in our city; however, if this occurs frequently in your location, be prepared! Obtain a battery operated nebulizer, or if you have to, have a generator on hand.
The key with food allergies and asthma is to ALWAYS be prepared – at home or away from home. Hopefully, you will never experience a shelter in place, but if you plan beforehand, the experience can be a mild inconvenience instead of a tragedy.
Stein & Vargas, LLP, a civil rights firm based in
Washington, D.C. and committed to the principle that all people have full and equal access to all parts of society. Stein & Vargas, LLP has a special interest in the rights of individuals with food
On December 28, 2016, the firm filed a complaint against American Airlines for targeting and discriminating against individuals with peanut and tree nut allergies in violation of the Air Carrier Access Act.
Hello Dean & Eileen! I’m thrilled to be able to interview you today about your company, Allergy Superheroes. I love the empowerment that comes for kids with food allergies being superheroes.
Eileen: Thanks Nicole! We love focusing on the positive too. There’s no better analogy for food allergies than kryptonite. If Superman can have a weakness and still save the day, then our kids can too!
Please tell us how your company came into being.
Dean: When our boys were diagnosed with food allergies, it wasn’t really a life-altering experience like it is for most new families since Eileen has a lifelong experience with it. But when they started school we became acutely aware that the rest of the world doesn’t really get it yet. When we realized the kryptonite analogy, we combined our love of superheroes with that positive message to help get the idea of food allergies across and spread awareness.
I especially loved the teal leaf bags you had available for Halloween. What are your highest selling products?
E: Our teal pumpkin products did really well this past October, especially the candy buckets. In general our slap bracelets do really well (and we’re about to release them in more allergens) and everybody loves our single-dose liquid medicine bottles.
Born out of my desire not to carry a full (not to mention heavy) bottle of liquid Benadryl with me all the time, those have really made my purse lighter and everybody else loves them too. But my personal favorite is our “I have a kid with a food allergy, you bet I’m a SUPERMOM” travel mug.
D: I sometimes wear the slap bracelets even though I don’t have any food allergies. It helps to spread awareness and they’re a lot of fun!
What food allergies do your two boys have?
E: Our older son is allergic to egg and peanut, though he is finally starting to outgrow the egg and he’s been handling it in baked form for a little more than a year. Our younger son is just peanut. Both of them have a big question mark around some of the tree nuts though, because introducing those has been problematic because of my allergy to them.
How do they feel about being a part of your company?
E: They love it! Modeling usually requires bribery of chocolate to get everyone through it, but they love being part of this and they know it’s something special. We have overflowing file folders of the artwork each of them has drawn of our characters.
D: Our boys are really into superheroes, so they love the idea behind the business and our characters. They wear their food allergy superhero shirts a lot and love helping to come up with new ideas on how to spread awareness. It really is a family venture!
Can you share a story of superpower one of them has enjoyed in life?
D: Our oldest is very active and outgoing. He has no issues with talking about his food allergies and spreading awareness about them. When a birthday party comes up, his friends know about his allergies so they make sure their parents talk to us so that their birthday treats will include him! He also loves to draw and we can see him doing a lot of the artwork side of the business when he gets older!
Eileen, you have had food allergies all your life. What was it like growing up in the 1980’s with food allergies?
E: Different, very different. There are times that I look back and just shake my head. I actually wrote a blog post a few months ago about how my “food allergy mom” life is easier than my mother’s was, where I highlight a bunch of resources and improvements. This could really be the subject for a novella since so much has changed, but some major points:
It was harder to get diagnosed and get proper medication–I had an anaphylactic reaction to eggs at 12 months, but the only prescription I received upon leaving the ER was for Benadryl (it wasn’t OTC), and we weren’t sent to an allergist or even told to avoid eggs (my mom avoided them anyway.) I had some smaller reactions and then another anaphylactic one to nuts in the months before my 4th birthday, and then I was finally prescribed epinephrine, but I wasn’t tested for allergies until I was 6. (By then there was no trace of an egg allergy.) And that was the only testing I had done as a child.
Most people hadn’t heard of food allergies. I did a lot of explaining and so did my parents, but it was rare to encounter anyone who had previously heard of allergies or could accommodate them.
There weren’t very many of us. I was unique in my dietary struggles, though I don’t remember feeling down about it very often. I was in middle school before I finally met one other kid who had food allergies. (I think my mom secretly hoped we’d become best friends and look out for each other, but he and I never hit it off.)
Epinephrine was carried in single doses and was basically seen as a last resort. We weren’t told to use it unless things got really bad. The whole concept of always having two doses and using epi “first and fast” is actually a pretty new concept (and one I’ll confess that I struggled with. Benadryl got me through so much in my youth, so the thought of using epi preemptively and then sitting around bored in the ER for 4+ hours was something I did not get behind for a long time.)
We didn’t have the internet. As a result, news of food allergy deaths seldom reached our ears so our perception of the risk was less. That may have put us at greater risk, but probably also reduced our anxiety level. But on the other hand, we didn’t have many resources available to us, either. My mom used to receive a monthly newsletter from a now-defunct allergy and asthma organization, and most of the articles were on asthma. If she’d had access to the community we have today, I’m sure our lives would have been a lot different–certainly a lot less isolated.
D: Nowadays, awareness is growing, but there is so much more work to be done. It’s hard to fathom going through that with virtually no awareness or support at all. The kids and parents of that time period and earlier are real superheroes in my book!
How did you manage to stay safe in school, dating, eating out without the awareness that’s available today?
E: I’m going to start by saying that I was pretty lucky to “only” be allergic to tree nuts. If I’d been allergic to, say, dairy or wheat, or if egg had stayed with me, I’m sure things would’ve been a lot harder, because I would’ve encountered them a lot more. Tree nuts aren’t as widely used, so my life was not as restrictive as it could have been.
My mom considered it a victory to actually get my EpiPen into the nurse’s office, though she has repeatedly expressed doubt that anyone there would’ve known how and when to use it. We put a lot less emphasis on inclusion back then and mainly focused on “do what you need to do to stay safe.” The world isn’t nut free, and my mom wanted to make sure I understood that I couldn’t always participate in shared treats. When foods came into the classroom I would ask questions, and sometimes I would just do without. I don’t think I ever had a backup stash at school. I don’t think that even occurred to my parents.
I think I started self-carrying around 5th grade, which I’m pretty sure made my parents feel safer. I had a fanny pack that year, then somewhere along the line I just switched to carrying it in my backpack. I don’t have very distinct memories of any of that, it just sort of happened when it happened. I got a fairly good handle on what I shouldn’t eat by then, and I can’t recall any school-related reactions beyond early elementary school.
Telling boyfriends about my allergy was definitely a priority. We had a “no kiss” rule growing up if my parents ate something I was allergic to, so that transferred over to dating. Generally, I would tell guys that they shouldn’t eat nuts while we were out. I wasn’t forward enough to add “or you can’t kiss me,” at least not early on, but no one ever challenged my rule, either. I can’t say I put any thought into what they’d eaten previously–but then, the first supposed “peanut butter kiss of death” didn’t happen until I was in my 20s, so that was another danger that I simply wasn’t aware of, nor did I fall victim to it. But I didn’t date a whole lot, either.
(Dean here, she was worth not eating any tree-nuts before or during our dates for that goodnight kiss!)
Something else that is very different today is awareness of cross contamination. Some might argue that cross contamination doesn’t have much awareness, but when I was little there was none–and I mean none. We were never warned against it by our doctors, foods never labeled for it, and the general principle we lived by was “don’t eat anything with nuts actually in it.” We knew you couldn’t pick nuts out, but even the concept that you couldn’t use the same knife was something we learned (painfully) the hard way. There were a handful of reactions from my childhood that we traced to contamination as we struggled to figure out the concept, and some other “mystery” reactions that must have been from CC.
Kissing, cross contact–basically, these things had to happen a few times before doctors, patients, the news, and lawmakers figured out the pattern and started doing something about them.
So when it came to restaurants, we did a lot of educating. It wasn’t uncommon for me (or my parents) to explain what food allergies were to restaurant staff–and after we learned about shared knives and foods touching, we told them not to do that, either. Whether any of them actually took precautions in the back is debatable–but on the other had we were pioneers, laying the foundation policies that restaurants are adopting today. It’s a wonder that we ate out at all–but without the internet shoving food allergy deaths in our faces every few months, the danger of that happening also seemed farther away. At times we coasted through on ignorance and luck.
Is there anything else you’d like to share?
E: It’s been great getting to be part of this community since we started up a few years ago–it’s such a welcoming and positive space. I also blog at www.allergysuperheroesblog.com and I started that up because I wanted to share my perspective of dealing with two generations of food allergies–my outlook is different since I’ve been through it myself, but caring for your allergic child is definitely different than managing your own allergies, too. Most of the time we don’t see the after effects of the things we’ve done, but it’s really all about helping people. On the rare instance that we get feedback that we’ve helped someone, or given good advice, or made someone feel more confident about the future, that’s when we know that we’re doing the right thing. We love all of the connections we’ve made over the past few years!
D: It really is the most fantastic community to be a part of! We’ve met a lot of amazing people and we’re continually inspired by them. And when we get to meet them in person at conferences like FABlogCon, it truly is a SUPER experience.
Hello Mary. It’s wonderful to interview you today. Can you please tell us how you became involved in disability law, especially as it relates to food allergies and anaphylaxis?
I’ve been a disability rights lawyer for almost two decades. I started my career at the National Association of the Deaf doing disability discrimination litigation. When my own child was diagnosed with food allergies and subsequently turned away from a summer camp because of his allergies, my worlds collided. I found myself in the uniquely familiar position of advocating for inclusion but this time I was advocating for my son. I realized that if the child of a disability rights lawyer was denied access because of food allergies, there was work to be done.
What food allergies does your family manage?
I have three boys and only my youngest has food allergies – peanuts, tree nuts and shellfish.
What lawsuit(s) have you litigated that pertain to food allergies and anaphylaxis?
Stein & Vargas, LLP has a special interest in pursuing litigation that will create safe and equal access for people with food allergies. We’ve litigated a number of cases throughout the United States on behalf of people with food allergies who have experienced discrimination whether it be in employment, education, or access to programs and services. Among the complaints we have pending now are a complaint against Young Shakespeare Players East in which the United States Department of Justice has concluded that Young Shakespeare Players East discriminated against my 11 year old client on the basis of his food allergies and retaliated against my 13 year old client for advocating for her friend’s rights. We are also co-counseling on a case with Laurel Francoeur against Panera on behalf of a child who had an anaphylactic reaction after being served a grilled cheese sandwich that contained peanut butter despite notice that the sandwich was for a child with a peanut allergy.
From your experience as an attorney, is there anything that a food allergy family should be aware of or take action on to ensure the safety and inclusion of their child in school?
The most important aspect of safety and inclusion at school for food allergic kids is the development of a strong and positive relationship between the school and the parents. The focus cannot be on highlighting where plans failed, but on building long term trust and commitment. Even the most knowledgeable and well-meaning schools will fall down sometimes.
Allergy Law Project was the brainchild of Laurel Francoeur who approached Homa Woodrum and I two years ago about the need for reliable legal information in the food allergy community. There is incredible power when parents of food allergic kids put their brains together for the good of the community.
I love the blog post called “A Seat at the Table – Bringing Allergy Friendly Food to Restaurants“. You said that’s the question you are asked the most. What can a family do, in the moment, if a restaurant forbids them to bring in outside food? Is it necessary to bring along the state law to reference or is there some other statement that can be used to allow outside food?
Generally, families can ask calmly and respectfully to speak with the manager. Explain to the manager that your party is looking forward to enjoying the food that the restaurant offers but your child cannot safely eat the food. If after calmly talking this through and explaining why it is necessary for your child to bring safe food in order for the rest of the dining part to eat at the restaurant the manager still refuses, you may need to go higher up the chain. You might send a politely worded letter to the restaurant owner to educate them about food allergies.
Many food allergy families are concerned about Donald Trump’s comments about “streamlining” the Department of Education and curbing the role of the Office of Civil Rights. What can food allergy families do to protect their child and do you think that is likely to occur?
I have grave concerns about the impact of the incoming administration on many aspects of the work we do. The Office of Civil Rights within the Department of Education, the Office of Civil Rights within the Department of Health and Human Services, and the Disability Rights Section all have a critical role in ensuring compliance with our federal rights. Significant cuts in staffing could jeopardize the ability of these agencies to safeguard rights and changes in philosophy could undermine enforcement actions throughout the United States. There is so much at risk and already resources are stretched tightly. I’m also concerned about the potential rollback of food safety regulations that has been threatened. My hope is that the allergy community has the potential to speak loudly and in concert to defend important rights.
If someone reading this feels they need legal advice pertaining to a disability law question, how can they contact you? Stein & Vargas, LLP’s website is www.steinvargas.com. Folks are welcome to contact me with questions through the website.
Thank you very much Mary!
Ms. Vargas is committed to ensuring full and equal access for all individuals. She has litigated cases pursuant to the Americans with Disabilities Act and the Rehabilitation Act throughout the United States in federal and state courts.
Ms. Vargas also represents women who are denied access to reproductive care and coverage. She has successfully obtained full coverage of late term abortion claims through insurance appeals. She also speaks nationally on issues including women in law, movement building, discrimination, pain, food allergies and anaphylaxis, and reproductive rights. Ms. Vargas is a co-founder of and blogger for the Allergy Law Project.
Prior to joining Stein & Vargas, LLP, Ms. Vargas was a staff attorney with the National Association of the Deaf. Ms. Vargas was a 1998 Skadden Fellow and a 1994 Truman Scholar. Ms. Vargas was the 2010 recipient of the Advocacy for People with Pain Award from the American Academy of Pain Management. She wrote for the American Bar Association, Mental and Physical Disability Law Reporter.
Ms. Vargas obtained a B.S. in deaf education from the College of New Jersey, and a J.D. from the University of Connecticut, School of Law. While in law school, she was appointed to the Client Advocacy Board and served as student director of the Yale Law School, Advocacy for Persons with Disabilities Clinic.
Ms. Vargas is a member of the bars in Connecticut and Maryland. She associates with local counsel around the country in bringing cases of special importance to individuals with disabilities.
The Food Allergy Bloggers Conference was held in Denver, CO this past weekend, and wow was it fun! The conference is more than just about blogging, there’s also a “disease” track that offers wonderful speakers who spoke about research that their children were involved in; doctors who detailed eosinophilic disorders, parenting tweens/teens with food allergies and much more! There are many gluten-free bloggers who also are a large part of the attendees. And the Expo is amazing – so many new products for food allergy individuals and new foods to sample.
I started off the weekend learning more about Instagram Stories, Facebook Live, Snapchat and more! You can see the proof of my learning Snapchat above!!
Jenny Sprague is the Founder and Manager of the conference. It is a year-long mission to put on this great conference, and every year she does more amazing things.
At the Welcome Dinner, we heard from Eric and Evan Edwards, the Founders and Co-Inventors of the Auvi-Q. They shared their personal experience of having life threatening food allergies – and the fact that their children also have them – hence it is personal for them to bring back the Auvi-Q as soon as possible. And they are planning on doing that before June 2017, at a “very low price” even for those with high deductible insurance policies. I asked them about this price, and it sounds like they are shooting for below $50!! The two met with several of us bloggers to find out more of the issues we’ve had gaining access to epinephrine autoinjectors at a low price. I came away feeling that they really are invested in helping our community, and as they said, “this feels like home” to be with the food allergy world!
Saturday was filled with presentations, not the least of which was my husband, Robert’s, and my presentation on Parenting Your Tween/Teen with Food Allergies.
We shared our experience and stories about raising our son, Morgan, and the various challenges and opportunities we had to empower him as a self-advocate through his tween years of school, campouts, overnight field trips and sleepovers. And through his teen years of homecoming, prom, dating, kissing and alcohol awareness. We had great audience participation and questions.
We were thrilled that our daughter, Michaela, was able to join us for the conference. Also, FAACT was the sponsor of our presentation. Eleanor Garrow, President & CEO of FAACT, is shown above with our family. We were definitely missing our son, Morgan, who is currently studying abroad in England.
One of the best parts of the conference is getting to meet in person bloggers and authors whom I’ve only met online. Above is Cookbook Author Cybele Pascal, on my right, and Allie Bahn, Miss Allergic Reactor, on my left. It’s so great to connect with these wonderful women!
And what would a conference be without a couple of superheroes from Allergy Superheroes? Love these two who marched around the entire conference in capes!
I was able to stay in the Denver Renaissance Hotel, for the first time, because Keith Norman was the first chef willing to take on feeding me! And believe me, that’s no easy feat with my mast cell and eosinophilic esophagitis diagnoses. I have so much appreciation for Keith’s willingness to provide safe food for all attendees.
The conference continued on through Sunday, although our family had other plans, so we had to leave early. It was an amazing weekend, and one that I’m already planning to attend next year!
There is a new issue that I’ve been hearing about frequently on college campuses, and it affects our children with pet allergies: emotional support animals.
For those students who have severe animal allergies (like my son, Morgan) living in the same dorm as these emotional support animals can be hazardous. An emotional support animal differs from a service animal, according to the National Service Animal Registry in that “an Emotional Support Animal (ESA) is an animal that, by its very presence, mitigates the emotional or psychological symptoms associated with a handler’s condition or disorder. The animal does NOT need to be trained to perform a disability-specific task, whereas a service animal does.
All domesticated animals (dogs, cats, birds, reptiles, hedgehogs, rodents, mini-pigs, etc.) may serve as an ESA. The only legal protections an Emotional Support Animal has are 1) to fly with their emotionally or psychologically disabled handler in the cabin of an aircraft and 2) to qualify for no-pet housing. No other public or private entity (motels, restaurants, stores, etc.) is required to allow your ESA to accompany you and in all other instances, your ESA has no more rights than a pet.
You’ll also need to be prepared to present a letter to airlines and property managers from a licensed mental health professional stating that you are emotionally disabled and that he/she prescribes for you an emotional support animal.
My son lived in a college dorm for 2 years, and in that time, there was a HUGE increase in the number of students with emotional support animals. At the University of Denver, they recognize that the needs of a student with severe pet allergies are equal to the needs of a student with an emotional support animal. However, the only way that a school is going to know that your child has severe animal allergies is for the paperwork to be completed and medical documentation provided.
My son was placed in a dorm on one end, and the students with animals were placed on the other end. That way there was no shared ventilation, which could have exacerbated his asthma.
I’ve recently heard of two situations at two different universities where a student brought in an emotional support animal without having paperwork completed until AFTER moving in. In both cases, the roommates were unaware that there would be an animal prior to moving in. And to make matters worse, in each case, at least one of the roommates had severe pet allergies, but had neglected to tell the university of such.
Both situations have caused a large amount of stress for all involved, and the university is caught in the middle of which student needs to move out and which needs to stay.
My suggestion: if your child has severe pet allergies (and this would also include children in K-12) make sure to have the paperwork completed so that the school is aware of these allergies. This will allow for any accommodations needed, such as no contact with the animal, no field trips where the animal is present, and no shared vents with the room where the animal is located. Prior to placing a child with a pet in your child’s classroom, or allowing a college roommate to have a pet, other arrangements can be made.
I have been a patient in Dr. Xiu-Min Li’s private practice for about a year now, and it was time for me to meet her in person. We have been having once a month telephone appointments. Meeting Dr. Li in person was like meeting a rock star! She and I hugged each other like long lost friends, having spoken on the phone for a year.
I have written about Traditional Chinese Medicine (TCM) before, and you can read that blog post here.
Most of Dr Li’s patients travel to New York City to meet with her before they start treatment. However, it is VERY difficult for me to travel, and being an adult, she was willing to consult with me after receiving a battery of blood tests and endoscopy results for my eosinophilic esophagitis and mast cell disorder diagnoses. I also have IgE allergies to several foods – peanuts, onions and corn.
Because of these diagnoses, and gut issues every time I try a new food, I am currently eating just 4 foods: organic chicken breast, organic turkey breast, organic broccoli and Cascadian Farms organic hash browns. (For some reason, those potatoes, having been parboiled to perfection, work for me while homemade hash browns parboiled do not.) Mast cells and eosinophils are crazy!
When I travel I must either bring these foods or be able to purchase them. And because all of these foods are low in calories, I eat 6 times a day, about 2 hours apart. I have to cook all the foods for my stomach to tolerate them – not that I would be eating raw chicken! But even raw broccoli doesn’t work for me currently.
My recent trip to meet Dr. Li felt like a big accomplishment. I was able to stay with a fellow food allergy Mom, and to use her kitchen to cook all my meals. I ordered my food from FreshDirect and had it delivered to her apartment prior to my arrival. What a wonderful service that is in New York City! And what a wonderful friend I have to put up with me cooking non-stop!!
As far as the Traditional Chinese Medicine that I’ve been taking – I’ve been on a cream IIIvb, which looks like avocado dip, and I apply it once a day, every day. I’ve recently begun an herbal foot bath, which is all that I can tolerate currently. Most of Dr. Li’s patients use herbs in a “real” bathtub, however I am currently too sensitive for that. The combination of these two treatments, which permeate the largest organ – the skin – have begun to decrease my body’s sensitivities. I have yet to begin to swallow any TCM treatments. Again, most patients are able to start with this, but my system is still in need of healing more before I will be able to swallow any teas or pills. Dr. Li’s protocol is not something that I could manage myself, and I couldn’t go to a local store to purchase the herbs. I feel very grateful that I have a doctor, with such knowledge, managing my care.
I realized how much better I’m doing when I was asked by Dr. Li to rate my improvement. I’m far less reactive to smells and contact with the environment. I have much more energy. (That’s the real issue with mast cell degranulation for me – it zaps my energy). And I’m far less anxious. I really want to eat different foods, and Dr. Li thinks that’s in my not-too-distant future. She wants to try some Chinese vegetables because it’s something I haven’t ever eaten, so hopefully my mast cells won’t recognize the food as an invader!
For me, TCM is more about how I feel than any blood test result. We aren’t trying to cure any food allergy. I’m willing to not eat a few foods that I’m allergic to…I’d like to be able to eat all those other foods that currently I can’t tolerate because of the mast cell/EoE issues!
Dr. Li suggested that I purchase a pressure cooker to cook the meats that I eat to make them more easily digested. Upon returning home, I immediately purchased an “Instant Pot”. What a wonderful little device! I can cook my chicken in 15 minutes, while my potatoes are cooking on the stove. This allows me to always eat fresh, and to cease microwaving foods to reheat them, which Dr. Li wants me to quit doing – “as much as possible in our busy lives”. She’s always so patient and kind!
I’m continuing to increase the amount of cream that I apply, and to increase the amount of herbs in my daily foot bath. It’s so exciting to feel healing occur in my body.
The various medications that I’ve been on – Ursodiol, Zyrtec, Zantac and Ketotifen – only mitigate symptoms. They do nothing toward a true cure or healing. I’m grateful to have them, and I’ve been able to decrease the amount of medication that I take daily since starting on the TCM protocol.
I’m leaving on Monday, August 1st to study abroad! I’ll be traveling with friends for the entire month of August through Iceland, Spain, France, Italy, and Greece; then, I’ll be in Denmark for a month completing a research project; and then I’ll be at a host university in Lancaster, England from October to mid-December. Crazy times!
I’m beyond excited to embark on this adventure of a lifetime.
The planning for this process admittedly started before my Freshman year at college even began. I was excited! The University of Denver has an incredible set-up: during your junior or senior year, you can study abroad at any partner program or university (they have over 160) in over 80 countries around the world. You pay DU your normal tuition, housing, and fees and they take care of the costs at your host program or university! And, with a 3.0 GPA or higher, DU students can also qualify for the Cherrington Global Scholars program, which helps cover visa fees and flights to and from your program! Truly, DU makes it super easy to study abroad.
I knew from the get-go (as I discussed in a previous post) that I would need to study in an English-speaking country where I would have control of my food intake — so homestay programs and shared kitchen set-ups wouldn’t work. I narrowed it down to a variety of programs in the UK, New Zealand, and Australia, but eventually settled on Lancaster University. It’s quite a good school and has a variety of academic + fun programs I can get involved in!
I left all of the study abroad stuff on the backburner until this past fall, when all the study abroad applications begin. After investigating all of my options at Lancaster, I decided to pursue independent research. I had no idea (originally) what my research would be about but I knew it sounded cool and I wanted to take advantage of the opportunity of studying abroad. As a Public Policy major, I’m really interested in how different governments structure their economies, health care systems, and other public sector services. I mulled around a bit with the idea of looking into the National Health Service (NHS) in the UK since it’s so different from the US health care system; but, after doing a lot of research and reading (I kid you not I read three PhD dissertations and two books and forty-odd academic journal articles), I settled on conducting research in Denmark on the way they treat small & medium-sized businesses.
I now knew that I would be spending a considerable amount of time in Denmark conducting this research and I would have to do it before my program began. Lancaster’s term starts late (the first few days of October), so I knew I had September to conduct my research.
And then, I decided that traveling with friends sounded like a cool idea — why not? I’m over there already and my flights were paid for by DU. After many months of figuring out immigration issues and friends committing and then finding out they weren’t able to, my two close friends (Thomas, my first year roommate, and Danny — or DK for short) and I decided to travel together for all of August! We didn’t really have much planned until mid-May, but we knew we wanted to see a lot of Italy.
So, the run-down for the next four-and-a-half months came to look like this:
I’ll be traveling with Thomas and DK through Iceland, Spain, France, Italy, and Greece.
I’ll be staying in Copenhagen, Denmark for the full month of September.
I’ll be attending my study abroad program at Lancaster from October to mid-December. I get home December 18th.
I am blessed to have a full-ride scholarship to DU that helps pay for my study abroad experience at Lancaster. I also applied and was awarded grants to help fund my research in Denmark. I started saving over two years ago for my study abroad experience and am also using all my personal savings to help fund my travels and other fun excursions! The point being I started planning for this incredible experience a long time ago, both financially and mentally.
Health & Safety Abroad
This was a top priority for me from the get-go. I knew (from other bloggers and food allergy families) that international travel was completely possible, even if I didn’t speak all of the languages. My Spanish is a little rusty, and I definitely don’t know how to explain anything in French or Greek, so I knew I’d be flying blind. I admit, that’s scary! But, I knew I could prepare successfully for my travels abroad and remain 100% safe.
I downloaded the Google Translate app, which can help translate things on the spot — you can even take a picture of something and it will translate it!
I also downloaded AllergySmartz, an app for my iPhone that allows me to select my food allergens and it churns out a prepared chunk of text describing my food allergies & cross contact issues in multiple different languages to give to a waiter who may not be fully fluent in English. It’s essentially a digital chef card in multiple different languages!
DU also helps its abroad students by automatically getting them membership to International SOS, a company that delivers 24/7 emergency help and advice. They don’t provide health services, but they can call an ambulance or help notify a US Embassy in case of a national security issue. DU requires all of its students call International SOS before they leave to get advice on health & safety while abroad.
My call with International SOS was fantastic. After getting a security overview of all of the countries I was traveling to (and advice to watch out for pickpocketers and such), I got to speak with an actual medical doctor (!) about my food allergies and traveling abroad. He helped clarify that I should carry a doctor’s letter to get my medication through immigration (and what should be in that letter), to always watch out for cross-contact issues in restaurants, and to always carry my EpiPens. It was really great to talk to a doctor who was so knowledgeable on food allergies and travel.
This is, in many regards, the ultimate test of self-advocacy. I’m already really quite good at advocating for myself, but to do it other countries and across languages certainly tests my own limits. My mom helped research potential issues in food overseas by reaching out through her various social media groups to figure out what other things could come up. I found out lupine flour, a flour used a lot in baking across Europe, cross reacts with nuts, and therefore isn’t good for me with peanut and tree nut allergies. Definitely going to avoid that! I have the absolute faith and confidence that I’ll be safe and I know how to take care of myself.
For medication, I’ll be carrying two EpiPens with me at all times, and I’ll have an extra two in my backpack. Because they have become so expensive, I’m traveling with EpiPens that are expiring in August of 2016 (this next month) – these are my two backups. We ordered the two new ones from Canada Drugs and got the MEDA brand, the European drug manufacturer of EpiPens, to make sure I was safe for all of my travels. They cost ~$220. I will be keeping the new ones with me. This is a definite risk, but from conversations with my allergist, the EpiPens won’t become extremely ineffective in the couple months past their expiration date. They may or may not be 100% effective, either, but we simply can’t afford to spend $220+ for a second new pair of EpiPens. I’ll also have other prescribed medication in my backpack at all times.
I researched labeling laws for the EU and the UK. Thankfully, no regulations will be changing due to Brexit in the coming months, so I’m in a sweet spot to come to the UK (especially since the pound sterling is weaker against the dollar)! Over 85% of Danes speak fluent English, so I know I won’t have too many issues communicating in restaurants regarding my food allergies. However, most of their labels are solely in Danish. I’ve become familiar with important words (mainly my food allergies) in Danish to quickly identify those while reading labels in a grocery store.
Traveling & Living
For the next 4+ months, I’ll basically only have a backpack’s worth of belongings. Since I’m traveling for the duration of August, I’ll only be carrying the things I absolutely need. Thomas, DK, and I are traveling mainly by trains, so I can’t be carrying around tons of luggage — it’s inconvenient, heavy, and unnecessary. I’ll have all the necessities, but nothing really more — clothes for different kinds of weather, some hiking shoes, flip flops, swimsuit, my medication, and some electronic & utility stuff, but that’s about it.
For August, we’ll mainly be staying in hostels or AirBnB. We used HostelWorld to find the best hostels (stayed with hostels rated 8.5+ upon the advice of a friend). We were able to check their no pet & no smoking policies, plus cost and living situations. All of our AirBnBs were strategically placed in cities we were staying longer in: for example, we’re spending 5 nights in Rome, so we got an AirBnB so we could cook our own food if we wanted, wash clothes, and so forth. All of the AirBnB’s we chose are non-smoking and pet-free!
In Denmark, I’m renting an AirBnB for the whole month. It’s also pet-free and smoke-free and the owner is even giving me a bicycle to use while I’m there! Truly a wonderful set-up. It has a kitchen and a refrigerator and I get to truly take care of myself for that whole month!
While in Lancaster, I’ll be staying in a studio dorm room. I’ll have a bed and bathroom and a small kitchenette to cook all of my food. I can take a short bus ride into Lancaster whenever I need to buy more food. It is also pet and smoke-free!
I’ve prepared just like any other student studying abroad & traveling internationally — making copies of my credit cards, passport, immigration letters and documents, making sure my housing is set up at Lancaster, booking trains — and I also prepared as someone with food allergies. I’m going to be cautious. I’m not going to be eating crazy dishes without knowing, for certain, what will be in those dishes.
And, I know, I’m going to have the time of my life! I’ll post an update probably once I get to Lancaster in October. Until then!
I want to talk about staying safe at college. For many of you, that’s many years off; for others, it’s right now! College is an exceptionally exciting time. You are free from a parental burden, you are living on your own, figuring out life for yourself, and taking on all of your own responsibilities. You have to figure out when you go to class, if you even want to go to class, when to complete homework, when to eat, when or if to exercise, when to hang out with friends, when to go to bed, and so on. There’s a lot of new personal responsibility!
And to top it off, you have to manage your food allergies. You have to make sure you carry your own epinephrine autoinjectors without a (friendly?) reminder from Mom. You have to ask people about what food they’ve eaten before you kiss them at a party. You have to figure out where you’re going to eat. This can be unbelievably scary for parents since this might be the first time they don’t have supervision of your food intake or at least even a general knowledge of what you’re eating, where you’re eating, if you’re eating, etc.
Then there are questions of accommodations — can you feel safe in your dorm room? Will your roommate be willing to accommodate your food allergies? How about the dining halls? Will you have access to a kitchen, and if so, do you feel safe using it?
Really, the questions are endless. They are so endless, in fact, you can scare yourself out of going to college and living your life. So, for the moment, stop asking yourself all of those questions.
Let’s focus on what you can do: you can advocate for yourself.
This is the fundamental principle of staying safe in college, and in life. You must be able to self-advocate. This also isn’t something you wake up one day and know how to do; it is developed over months and years of practice. Self-advocacy is a skill that every food allergic child must learn. It may be scary for your parent to let you learn how to self-advocate because it requires you to step outside of your comfort zone, learn how to tell people about your food allergies, learn the potential consequences of not telling someone about your food allergies, and get yourself into situations in which you must self-advocate. But, let me tell you something: it’s a lot scarier to go out into the real world and not know how to advocate for yourself.
Self-advocacy, at its core, is made of two main components:
Self-advocacy, and therefore staying safe in college and in life, requires you to speak up. You must be able to tell other people about your food allergies, set boundaries around what is acceptable for your safety, and demand nothing less.
To do that, you first must become comfortable with the idea that you have food allergies. Too often, we become the victims of bullying and indifference. We become identified solely as the “food allergic kid” in the class who forces everyone else not to eat PB&J’s or bring in certain foods. We’re teased for it, and in some cases, our life is threatened simply because other kids don’t understand the severity of our food allergy. I had a young boy chase me around the playground in 1st grade with a peanut butter cracker chanting, “I’m gonna kill you, I’m gonna kill you!” The good news? He and I became really close friends after he better understood why what he did was not only wrong, but dangerous.
Time and time again, we are told that we are different, that food allergies make us different. And it becomes difficult to accept the reality that we do have food allergies, that we are different, that our health and safety is threatened by a plate of fish or that croissant with almonds. And, what I still struggle with, is that I have to make other people live that reality with me. I have to ask my date to not eat any of my allergens just in case we kiss later. I have to ask my friends in the middle of Italy not to eat at this one restaurant even though we are starving after walking for 8 hours straight because most of their menu is seafood and I just don’t feel comfortable eating there.
Your life is too important to not speak up. You have to accept that you have food allergies, that you (may) wear a MedicAlert bracelet, that yes you have to explain to every waiter at every restaurant you eat at that you have food allergies. Because food allergies is not a badge of shame, but a badge of pride. Be proud of your differences. Recognize that everyone has them: you have food allergies, she has two moms, he has Crohn’s, she has dyslexia, he can’t stand horror movies, she’s afraid of heights, he gets cold easily, and so on. The beauty of food allergies is that it adds another dash of diversity to the incredible mixing pot of humanity. You are incredible and never let anyone tell you differently.
So speak up. Especially when it feels like an inconvenience, speak up. The first day I was in Copenhagen, I ate at a local cafe with a friend and ordered a simple sandwich. I was exhausted after a full day of traveling, on and off metro stops, planes, and walking everywhere. I almost didn’t ask, because I thought it might be safe. But I did, because I’ve trained myself time and time again to always ask. And it was a good thing too: the bread on the sandwich contained sesame.
Could you imagine what would have happened if I hadn’t asked? The sandwich would come out. I might recognize that it has some weird seeds in the bread, I might not. If not, I eat the bread and then go into an allergic reaction. And even if I do recognize it, then I have to explain to my waitress about my food allergies and then force them to remake the sandwich. All of that could be avoided in the first place.
Never be afraid to speak up. Always put your safety first and never settle for less.
The second part of self-advocacy provides guidelines around what to do after you speak up. After you explain your food allergies to a waiter, to a friend, or to your roommate, there is an infinite combination of responses. They may be the most accommodating and kind person you ever met; or, the dish you ordered and almost every dish on the menu at the restaurant isn’t safe because of cross contact issues.
Managing risk is the really difficult part of self-advocacy, because it requires you to train your “good judgement” muscle. Like any muscle, you need to work it out for it to strengthen.
I want to give a real-life situation that I encounter at college most days: during lunchtime at the University of Denver, the dining hall has a mix of different stations. There’s a salad bar, a pizza station, a grill station, a soup station, and a variety station that differs everyday. I usually go to the grill station because I know the food selection usually contains safe food.
Why? Because previously in the year, I spoke up. I talked with the head chef in the dining hall and got to understand what food they use and how they prepare their meals. I worked hard to make sure the food I was eating was safe. And, if I have any questions at all, I can go directly to the head chef and ask!
That’s very different than ordering at a restaurant. At a restaurant, especially the ones you’ve never been to before, there’s a high amount of risk on dishes you’ve never eaten before. “Good judgement” says that I need to ask about their food preparation practices for my safety every time. And even if I go back to the same restaurant time and time again, I still speak up.
“Good judgement” is simply following this creed:
Safety is your first priority, so always prioritize your safety. Safety is maximized when there is little to no chance of the food actually containing your allergens and little to no chance of cross contact issues in the food.
Really, there’s not much more to it. You have to learn how safe you feel at restaurants and your parents and doctors can help with that. You probably shouldn’t eat french fries that are cooked in the same oil as their fried shrimp; but, if your chicken is prepared separately from the salmon, you’re far more likely to be safe (if you have shellfish or fish allergies, for example).
There is a lot more personal responsibility in college, from school to friends to sleep. You get to add in managing food allergies into that mix.
I personally know how…intimidating it can feel. I was in a new city, in a new room, with new friends, taking new classes at a new school, and I had to figure out what the heck I was going to eat! But my Mom and Dad helped me from a very young age to understand how to speak up, how to manage risk with good judgement, and how to maximize my safety. That’s all self-advocacy is.
You may have a roommate that isn’t accommodating to your peanut allergies, and you’ll have to set those boundaries, especially if he or she is constantly storing open jars of Nutella in the room fridge. Like, that’s just blatant disrespect. Your safety comes first and never convince yourself otherwise.
I haven’t had an allergic reaction since age 10 (to fish on a camping trip when I really had no idea I was allergic to fish). You should never accept the “reality” that you may have an allergic reaction. If you’re having allergic reactions, minor or major, you may need to work on strengthening that “good judgement” muscle. If you’re constantly in situations where you don’t feel safe, you may need to evaluate how well you speak up about your needs.
Do I go to restaurants where they serve seafood? Obviously, yeah. Do I allow my friends to order seafood? Yeah, nearly all of the time. Do I personally order seafood? Obviously not. Do I go to college parties? Not really. Do I deal with drunk friends? Yes, of course, it’s college. Do I eat out with friends? Absolutely! Do I usually have influence over which restaurant we go to? Yes. And so forth. Those are the boundaries that I have set, through good judgement, as acceptable for my safety. You need to figure out yours.
Self-advocacy assures you are kept safe. Really, college is just like any other area in life where you deal with food allergies. Instead of talking to an airline’s customer service about their peanut policy, you talk with the university’s Disability Services Office, or their Housing department. Instead of training your teacher at a 504 Plan meeting, you train your friends. And so on.
College is such an exciting time. It’s merely one part in a big journey through life and food allergies are simply one small part of that adventure.
You are always welcome to ask me any questions or voice any concerns you have to me. Send me an e-mail at firstname.lastname@example.org!
I’m writing this sitting in Copenhagen, Denmark after traveling for 30 days through 11 cities in 5 countries. I started in Reykjavik, Iceland and ended in Athens, Greece and visited nearly everywhere in between.
Needless to say, I’m a bit tired.
This past month was fantastic. I cannot even begin to explain how much impact this last month has had upon me. I was a bit skeptical when everyone said “travel will change you in unimaginable ways.” Well, I can say with certainty, it does.
This past month has also re-affirmed a sincerely held belief: having food allergies doesn’t limit you from anything. After ordering food in dozens of restaurants across Spain & France, eating gelato from the best shops in Italy, and having authentic Greek food in central Athens, I know that food allergies are simply another part of traveling.
I traveled with Thomas (my first year roommate and best friend #1) and DK (best friend #2) for the month. They were absolutely hilarious to travel with and we had an absolute blast. Both Thomas and DK knew about my food allergies and were incredibly supportive and accommodating. They had been previously trained in how to use an EpiPen and were aware of cross contact issues. Most of the time, they were more worried about me being safe than I was!
It would take too much space to give a detailed play-by-play of each meal in each city, so I will give a review of where I went and what I saw and then move on to the important takeaways and lessons from this amazing travel experience.
Thomas & I flew out on August 1st and did a one-night stopover in Reykjavik, Iceland. It was our first city and it was a wonderful first stop. Even though we only had two full days in the city, we got to experience a very different city (in style and living) than most of Europe. If you have the chance, do a free stopover in Iceland with IcelandAir. They’re an excellent airline! We traveled via regional trains for the remainder of our journey.
We departed in Reykjavik and entered mainland Europe, beginning with Barcelona. We spent three days in Barcelona and got a real taste of what it’s like to live there (hint: most people wake up past noon and stay out late). We got to see La Sagrada Familia, a huge cathedral designed by Antoni Gaudí that is still under construction! It’s world famous. But we also ate at markets, got to see the Mediterranean, and walk around a really great city.
After Barcelona, we left to meet DK in Montpellier, France. With only one night, we only saw the main attractions: a cathedral, a large Arc de Triomphe and attached park, and the great medieval architecture. We got kicked out of our Airbnb (more on that later), so our time was cut a bit short. After Montpellier, we arrived in Marseille, France for two nights. We walked so much in Marseille, but we got see incredible views, churches, and history in France’s 2nd largest city. It was by far my favorite French city. After Marseille, we left for two nights in Nice, France — we mostly slept since we were recovering after Marseille and spent the rest of our day on the world famous beaches. As a note, there were armed French military patrols every 200 meters walking around the streets and along the beach due to their recent terrorist attacks.
After Nice, we arrived in Milan, Italy after a brief 3-hour stopover in Genoa, Italy. We got to see the famous Il Duomo and three other incredibly historical churches, a medieval fortress, a museum, and ate world-famous pizza at Spontini Pizzeria. Our two nights in Milan felt really short but that’s mainly because we walked 12+ miles each day we were there! After Milan, DK went to see his cousin in Cinque Terre, a gorgeous coastal area of Northern Italy near Florence; Thomas and I went to Venice instead. Venice was by far my favorite city from the whole trip: picturesque canals, small shops and churches scattered all over the island, and a ton of history. We spent three nights in Venice.
We met back up with DK in Florence and spent a short three nights in Florence. Florence was the ideal “Tuscan” city: a giant cathedral (the Florence Duomo) surrounded by red tile roofs in a picture-worthy valley. We spent most of our time in art galleries and museums (the Uffizi and the Accademia, where Michaelangelo’s David is held). We could’ve easily spent a week in Florence, partly because we found the best gelato shop in all of Italy!
After Florence, we moved on to Rome. We spent a total of a week in Rome, but stayed in two different areas to add some variety. Our whole group got to see Pope Francis for his Sunday Angelus and now we can claim we have shirts blessed by the Pope! We also got to see all of the Vatican Museums and St. Peter’s Basilica, plus multiple museums and Roman historical sites. I ventured out to Tivoli, Italy by myself for a half-day in Villa D’Este, a 16th century villa with incredible gravity-operated fountains. After 7 days in Rome, we were definitely exhausted.
But no matter! We hopped on a short plane to Athens, Greece (via Aegean Air, another excellent airline) to conclude our trip. By this point, we were pretty darn tired so we split our days between relaxation and seeing historical sights. Still, we got to see a plethora of Ancient Greek history sites and museums.
Upon reflection, Thomas and I realized we kind of moved “backwards” in history — Iceland was the “newest” country, founded in about 800 CE. And we moved all the way back to the cradle of Western civilization in Athens, Greece, which dates as early as 8,000 BCE. It was an incredible journey through history and through Europe!
I think there were a few moments that definitely top the list of “what the [heck] just happened?”
We got kicked out of our Airbnb in Montpellier. This isn’t as bad as it sounds, but it is fun to say. Our host said we needed to be out of the Airbnb before “12am” — knowing that many Europeans (especially those less fluent in English) could mistake 12am with 12pm, I asked him if he meant 12am or noon. He re-affirmed 12am. As it turned out, he meant 12pm. Most of the French (and elsewhere) use 24h time, so time after 12h is expressed as 13h–23h instead of 1pm to 11pm. It was a simple mess-up, but his cleaning lady came a-knocking at 12pm. Luckily, we were there by accident since DK needed to grab his water bottle! Unfortunately, his cleaning lady didn’t speak any English so we roughly communicated through Google Translate to figure out why she was there and how much time we had to leave (about 1 minute). We hastily packed everything and ran out apologizing (Je suis désolé !). We explored Montpellier with all of our stuff on our backs until our train left for Marseille.
We were in a restaurant in Marseille, France and I decided to have a dessert — creme brulee! It’s a classic French dessert and it’s really a set recipe. However, their creme brulee was served with a side of raspberry sauce and almonds. I asked for them to leave off the almonds on the side. Thomas and DK got a separate dessert — but when they came to serve the desserts, they didn’t get Thomas or DK’s right (they served them the wrong dessert) so I had an “OH BOY” kind of moment, waiting for the creme brulee to come out with nuts on the side. They actually first entirely forgot about my dessert for about 5 minutes once they corrected their previous mistake with Thomas and DK, but they eventually got it out and it was completely safe, no nuts anywhere.
We were at a restaurant in Athens, getting a late lunch. Our waiter was an older Greek man and his English wasn’t great — although, on the whole, Greeks in the service industry seem to know more English than the French or Spanish do. I explained to him that I couldn’t do any sesame, and he smiled and nodded his head and put his hand on my shoulder and said “it’s no problem, all safe.” I wasn’t entirely convinced. But he served food that was completely safe, since I found out from another waiter their bread was made in-house and didn’t contain any sesame. (Whew)
Most Successful Moments
Obviously I had a couple run-ins with danger, but there were far more successes.
Every meal I ate while traveling, which meant about 90 meals were entirely safe at a variety of restaurants in a variety of countries, explained to servers who weren’t usually fluent in English. So, I only had two mix-ups out of 90 — that’s a stellar record.
I ordered a a simple peach tart in Nice — basically baked peaches with a peach sauce. The waiter actually double checked with three cooks about the processing of the peaches before he came back to the table and informed me that the peaches have cross contact issues in their kitchen with nuts they use in other dishes. How incredible!
This restaurant in Venice!This restaurant in Rome!
Those are some highlights (and I actually just realized while writing this that all of those moments were from Italy). Every waiter in Europe that I’ve explained my food allergies to completely gets it. They don’t ignore it and they double check with the kitchen on my meals. Really, truly good service even with a slight language barrier.
Lessons & Important Takeaways
There was a lot I knew coming into my travels. I planned for months in advance for which cities we were visiting and where we were staying. I double checked airline policies for serving nuts (Iceland Air and Aegean Air are two fantastic airlines). I knew I would have to avoid chocolate at all costs because chocolate is usually made with nuts across Europe, and I would avoid it even if they told me their chocolate wasn’t. I even checked immigration restrictions on medicine and bringing EpiPens® into different countries.
But there’s so much I simply learned by traveling. In no particular order:
Never, ever, ever believe your food allergies are an inconvenience. Thomas and DK were wonderful companions and always supportive in finding restaurants with safe menus. After walking 10 miles in Venice one day, Thomas and I were famished and we found a good looking restaurant, but about 75% of their menu was solely seafood (which Thomas enjoys). I didn’t feel totally comfortable with the place even though I could eat there, but it was Thomas who was the really uncomfortable one since he didn’t want us eating there for my sake — how’s that for great friends! He decisively said “no, let’s find somewhere else.” We did. Never convince yourself or your friends that it’s okay to put yourself in danger, because it’s not.
Always restate your food allergies to the waiter multiple times while ordering. Before I ordered, I would tell them “I have food allergies. All peanuts and nuts, sesame, shellfish, and fish,” in English. If they looked confused or weren’t totally fluent in English, I’d pull out my phone and show them the list in whatever language they spoke. Then I’d order my food. Then I’d restate my food allergies. By that point, the waiter or waitress was like “yes, yes I got it,” which made me feel even safer!
Carry all your important documentation in one area and have digital copies available. I feel as if this is a good travel tip in general, but especially for those of us with food allergies. I had a bright red folder in my daypack (that I carried on to flights as well) that contained copies of doctor’s letters for immigration that allow me to carry my medicine, my passport, all of my credit cards and ID cards including health insurance, a copy of proof of health insurance, and a copy of bank statements (really for my travels in the UK). I had all of these documents also saved digitally so I could print them out if necessary. I also had printed verifications of everywhere we were going to stay (AirBnB’s and Hostels) along with flight confirmation information. This way, I had any and all information I needed at anytime I needed it on my person. In case it was stolen, I also had digital copies I could print out.
If you want control over your meals, use AirBnB. I should become some sort of brand rep for their company because I absolutely adore AirBnB. Basically, you can “rent” out another person’s apartment or a room in their apartment for as long as you would like. There are hundreds of options in each city. We stayed with top-reviewed places and top-reviewed hosts (called SuperHosts) so we assured our experience would be a good one. Through AirBnB, we stayed in an apartment in a 13th century monastery, a 5th floor apartment with a grand view of Marseille, a first floor apartment with a river view in Florence, a gorgeous apartment near the Vatican, and a top-floor apartment with a rooftop view of Rome. Oh and a spacious apartment in Athens that had a view of the Olympian Temple of Zeus. And for the most part, we didn’t spend more than $30 or $40 per person, per night. When shared between three people, it becomes really quite cheap to travel via AirBnB. Since you have access to a kitchen, you can cook or at least have a place to store food you can eat at anytime. We stayed in our fair share of hostels, but they’re simply not as flexible or easy to use for food.
Bring an emergency supply of snacks. This should be a small bag of some kind of emergency food. I always bring NutriGrain bars, and those staved off hunger on a couple of train rides. You might end up in a situation where you can’t eat safely or you need to catch a train instead of eating due to bad planning (did that one…). It’s always good to have a guaranteed safe option available.
Please always carry your epinephrine autoinjectors. That’s a no brainer.
I could probably write pages and pages more — and I just might eventually! For now, those are the top takeaways.
After Greece, Thomas and DK left for Zurich, Switzerland to meet DK’s family. They’ll be finally settling down in Salzburg, Austria for their study abroad program in the next couple of days. I left for Copenhagen, Denmark where I am now completing a research project on small business performance and growth.
International travel can seem scary, I totally get that. I had a lot of fears about communicating with different people in different languages and still feel that the food served would be “safe.” But, it is entirely possible. You have to plan ahead, of course, but once you’re there, you have to figure it out somehow. If you explain you have food allergies, you may be surprised at how many people are willing to help and make sure the food is going to be safe and delicious. You can always figure a way to make it work!
Simply: Food allergies do not prevent you from doing anything in life, unless you let them.
Questions about travel or study abroad programs? Send me an e-mail at email@example.com. I’d be happy to answer any and all questions you have about my travels or about planning for yours!
Hi everyone! It’s Morgan. I’m currently researching small business growth in Denmark at the moment, but I decided to take a quick reprieve from my research and look into EpiPen® pricing here in this country.
The recent outrage over Mylan’s price increases certainly has made international news. Heather Bresch is now viewed as a challenger to Martin Shkreli as worst CEO of a pharmaceutical company, ever. Good.
Seeing all the news and congressional inquiries started to make me think: why does the US have this problem? Is it only a US issue? Why can Mylan get away with this blatant price gouging?
Doing a full cross-country comparison among developed countries in North America and Europe would take a few weeks, so I decided to examine how Denmark does it.
Denmark has a publicly funded health care system with mixed governance structures: the national government sets health care goals, policies, and tax structures while regional and municipal governments oversee the delivery of health care and process payments and reimbursements.
All Danish citizens qualify to be a part of the health care system and self-identify into two groups:
Group 1. 97% Danes select to be in Group 1. It’s entirely free to visit a general practitioner (GP), but you need to get a recommendation to visit a specialist. If you visit a specialist upon recommendation of your GP, it’s entirely free.
Group 2. 3% Danes select to be in Group 2. You can visit GPs or specialists at your pleasure and don’t need recommendations. All GP visits are free, but there’s only partial coverage of costs for specialists.
Denmark offers on-the-spot reimbursements for pharmaceutical costs (more on that later) and it doesn’t matter if you’re in Group 1 or 2.
Let’s say I’m the CEO of a pharmaceutical company. Let’s call this company Molfyne and say it mainly produces anti-depressants. Let’s also assume that I’m licensed by the Danish government to produce and sell pharmaceuticals in Denmark.
Molfyne would need to apply to the Danish Medicines Agency, a national agency, to have its drug recognized and sold in Denmark. I would need to file an application with the Danish Medicines Agency (DMA) and tell them my selling price of my drug to Danish pharmacies. I also submit documentation regarding the effectiveness, side-effects, and value-added of the drug (among other information) to DMA and wait for their response.
DMA determines whether the drug will be reimbursed or not based on those factors. It’s not entirely clear from my research whether DMA “negotiates” with my company over my price offered, but I suspect there might be a little negotiating.
Then, if approved, my anti-depressants are bought either by Denmark’s hospital drug procurement company (called Amgros) or by private wholesalers who sell to local pharmacies. If a patient is prescribed my drug in a hospital, there’s no co-pay or any payment since any and all pharmaceuticals are provided by the hospital and payed for by taxpayers.
If a patient is prescribed my drug by their GP or specialist and needs to buy it from a local pharmacy, they are reimbursed on-the-spot by the Danish government on a tiered system. This means that if a drug cost $50 and they qualified for a “$10 reimbursement,” they would only pay the pharmacy $40. This tiered reimbursement system is determined by how much you’ve spent on pharmaceuticals this calendar year. These tiers are 2015 numbers and are adjusted annually.
(DKK refers to the Danish Krone, their currency; $ is US Dollars)
You pay out of pocket up to DKK 925 ($138)
You get a 50% reimbursement for DKK 925 to DKK 1515 ($138 — $227)
You get a 75% reimbursement for DKK 1515 to DKK 3280 ($227 — $491)
You get an 85% reimbursement for expenses higher than DKK 3280 ($491)
You get a 100% reimbursement for expenses higher than DKK 3830 ($574)
To translate this, if I need to get $200 worth of drugs in February, I pay $138 out of pocket, and get 50% off the remaining $62. But if I need to buy $200 of drugs in June, I get the 50% reimbursement on the leftover of the second tier ($27 worth), and get a 75% reimbursement on the remaining cost. It means the more drugs you need to purchase, the less expensive it gets for you.
There’s only one catch: reimbursements are calculated based on the least expensive generic product. Pharmacies are required to issue the least expensive generic product, unless a doctor says otherwise (this is unusual). So, if your doctors says “not the generic one” you may have to pay a bit more, but it is still heavily reimbursed.
EpiPens in Denmark
Denmark makes it really easy to find out how much drugs cost across the board: they even have a website (http://www.medicinpriser.dk/) you can explore. It is in Danish, but you can select “English” in the upper right to view it in English.
If you search “EpiPen” you get this screen:
Notice that there are three items for 0.3 mg doses (the Stryrke column) from three pharmaceutical companies: 2care4, Orifarm, and Meda (the Firma column). Look at the consumer price (far right column)! 440 DKK is the equivalent of about $66. This means that you would pay $66 for an EpiPen® (a single one, not a two pack). The Meda EpiPen® costs 446.15 DKK, which is about $67. Really not much difference between the companies.
I was blown away seeing this. $66 for one EpiPen is cheap, even though it is an increase from previous years. Furthermore, if I have other drug costs from the year and need to get an EpiPen, this could cost me $33 (50% reimbursement), or ~$16 ($75% reimbursement). That’s quite inexpensive.
Lastly, drug companies are only allowed to adjust prices every other Monday, and they must be publicly recorded with the Danish government. There is also a law-binding agreement between an association of pharmaceutical companies (called Lif) and the Danish Ministry of Health to only raise drug prices ~1.5% every 4 years. Only some companies, like Sanofi and Pfizer, are a part of this association.
What’s the Trade-Off?
Obviously, this lower price for an EpiPen® is not happenstance. But, before we get to taxes, I’d like to note two important changes in the Danish system:
Drugs available to hospitals are negotiated by one sole entity. There is a “monopsony,” a literal single buyer in that market (Amgros). Amgros is the only entity that provides Danish hospitals drugs and therefore drug companies have to negotiate with Amgros to sell their drugs. This means an emergency responder or a hospital does not need to worry about using an EpiPen® since the price is reasonable.
Drug reimbursements are approved by a national health authority, the Danish Medicines Agency. As I clarified earlier, I can’t find too much about the DMA negotiating with drug companies, but I bet they wouldn’t approve reimbursements for drugs that are exorbitantly expensive, which means Danes wouldn’t have access to them by any practical means.
On to taxes.
You pay 8% on all gross income — regular income, wages, pension benefits, and so forth. There are deductions for interest dividends up to about $7,000 a year.
Then, you pay the following national income taxes (2014 rates):
5.83% for incomes between 42,900 DKK to 421,000 DKK ($6,420 to $63,100)
15% for incomes above 421,000 DKK (above $63,100)
You also pay between 23% and 28% to your municipality (averaging about 24% across Denmark). They’re merging their national healthcare contribution tax (3% for 2016) into their national income taxes over the next few years, but you pay that too. In total, you could pay upwards of about 57% of your income to governments of various levels every year. That’s a lot of taxes.
Oh and there’s a 25% value-added tax (kind of like a sales tax) on all goods.
The Danish government provides a lot more than just universal healthcare in exchange for those taxes. There’s extensive unemployment insurance, social security, education (including higher education), job training, and vocation schools. Plus you get the “normal” benefits like paved roads and national security. This kind of system is referred to as the “Scandinavian welfare model.”
Lessons for the United States
Health care is a complicated system. There are pharmacies, health insurance companies, pharmaceutical companies, medical device manufacturers, hospitals, emergency providers, private practices, and so much more. Denmark decided to basically keep most of that private (only doctors at hospitals are “public employees”; most health care providers are private employees) but fund it all publicly. They figured out ways to keep regulatory compliance low and efficient.
It’s also important to note there are a lot of differences between the United States and Denmark. Geographic size, population, and regional inequalities all play a role. If you live in a rural region of Denmark, you’re going to get the same kind of schooling or access to health care as kids in Copenhagen — that’s not necessarily true of Mississippi versus Minnesota. Denmark is only 5 million people large; that’s barely the size of Colorado. And, of course, it’s a tiny maritime nation on the north end of Germany versus half of the North American continent.
Nonetheless, I think there a few key takeaways:
The US needs to get serious about price negotiations. The Economist recently ran an article on EpiPen® pricing and the failures of the US system (note: there might be a paywall). It’s illegal for Medicare, our nation’s largest health insurance entity, to negotiate with drug companies on pricing. Only private health insurance companies can do that and they’re heavily constrained in their negotiating — only in 6 broad categories. The idea behind this choice was that competition would result in lower prices, but it obviously hasn’t worked. From the article: “As a result America spends 44% more on drugs per person than Canada, the next-highest.” That isn’t working. A publicly funded entity like Amgros could help lessen the price of drugs across the board, but it’d be very politically unpopular.
The US needs to get serious about pharmaceutical influence in politics. Denmark spends about 9.8% of its GDP each year on healthcare (12.4% of that total expenditure is on pharmaceuticals) and pharmaceutical companies comprise about 13.5% of its exports. Pharma is big in Denmark. To compare, all machinery exported by US companies comprised 13.7% of our exports. The Danish government has every reason to bolster their pharmaceutical industry and loosen regulations, but they don’t. On the flip side, as the Economist article pointed out, “[Mylan’s] chief executive, Heather Bresch, heads the generic-drugs lobby and is the daughter of an American senator.” There’s some questionable influences in American politics over our regulation of and choices regarding the pharmaceutical industry.
Lastly, the US needs to get serious about insurance reform. Drug companies are notorious about offering coupons and deals for many of their more expensive drugs, especially if your insurance doesn’t cover their drug. They do this so they “look good” and can avoid regulation by Washington. But, they don’t do this for insurance companies. Insurance companies have to pay for the expensive drugs without the deals some consumers gets. In the long-run, that raises insurance prices for everyone. The Affordable Care Act (y’know, Obamacare) only did so much to combat that and, in some cases, ran counter to that goal by causing insurance price increases.
We need some serious healthcare reform. Most of it is going to be opposed because (from the Economist, again) “the only thing that Americans detest more than an expensive drug is a bureaucrat who says they can’t have it.” But, there are obvious lessons from countries around the world who have effectively dealt with price gouging by pharmaceutical companies like Mylan.
It has been a firestorm over the last week with consumers, doctors, and the media calling out Mylan for its price gouging of the life saving medication, EpiPen. While Mylan CEO, Heather Bresch, argued that the problem is with the health care system instead of with Mylan in particular, Mylan did come to the PR table to provide further discounts to consumers.
This is too little and too late, especially for the thousands of consumers who have already scrimped and saved to purchase EpiPen 2-Paks for their children to take to school this year. Nothing monetarily was provided for any family who has already made purchases.
Additionally, this appears to be a public relations tool to not only stabilize their stock price (which has dropped almost 11% over the last three days), but also to quell all the media attention.
What should Mylan REALLY do? Here’s what I’d suggest:
Give Heather Bresch her walking papers. She has been a controversial figure with her MBA credentials having been called into question, and the EpiPen price increases were destined to be an issue if anyone had had the foresight to see the writing on the wall. Let her take the fall for this and wipe the slate clean. She has stated that EpiPen is “her baby,” so she is responsible for the price gouging.
Cut the EpiPen 2-Pak price to $300, the price it was in 2013-14. With their new $0 copay card value of $300, this would allow consumers to pay nothing. It would also be decreasing the cost of the product for insurance companies portion of the prescription – which we consumers are still paying in the form of higher premiums.
Make Anaphylaxis 101 a non-profit. It’s going to be difficult for Mylan to find a spokesperson now that both Sarah Jessica Parker has stepped down and Kelly Rudnicki, a Food Allergy Mama, who is a beloved figure in the food allergy world. Making the website Anaphylaxis101.org would allow for some good to be coming out of Mylan toward the food allergy community. And put a few members of the food allergy community on that non-profit board of directors!
To further that thought, Mylan needs to get a PR makeover. The best way to do that is GIVE, GIVE, GIVE to the allergy community and to apologize for what they’ve done with raising the price of EpiPens beyond what American consumers can afford. Americans love a redemption story, and it’s time for the old Mylan philosophy of greed, corporate tax evasion and executive compensation packages to be burned to the ground. What can rise is a new company, with the philosophy of collaboration and innovation.
Lastly, Mylan needs to take the HUGE amounts of profits that they made from EpiPen sales and put the money into research of an auto-injector product that meets the needs and desires of consumers: small, lightweight and a stable shelf life of 2 years or more.
Mylan could be a hero to the Food Allergy World if they’re willing to make amends and give up their current corporate philosophy. Become the company that our children would want to work for! If not….then I cannot wait for the competition that’s forthcoming in the epinephrine auto-injector market!
I love this idea that Dr. Dave Stukus has for decreasing the cost of EpiPens:
I have been interviewed by numerous news agencies about the high price of EpiPens and I have told each of them that Mylan’s high prices would be better understood IF they were creating a smaller EpiPen and/or if they were working on extending the expiration date of the product to 2 or 3 years from the current 12-24 months. Since neither of these are occurring from every response that Mylan has provided to the media, I can only assume that they are increasing the price to pad their profit while enjoying their monopoly status.
I decided to write my two US Senators and my one US Representative and ask them to request an inquiry into Mylan’s pricing practices. Here is the gist of the letter that I wrote (and please feel free to copy/paste and add your pertinent information):
Hello Senator/Representative ____________________________ You may have seen the recent Denver Post article titled, “Allergy sufferers caught between EpiPen price hike, health plan crunch”. We are very dismayed at the rising cost of the EpiPen for no good reason. There are 15 million Americans with food allergies, and the EpiPen is providing $1 billion in sales for Mylan, the manufacturer of the EpiPen.
Certainly, part of the issue is the changing prescription coverage for those of us with high deductible health plans. Another part of the issue is Mylan who have raised the price of the autoinjector astronomically since 2007 when they purchased the patent.
My recent trip to purchase an EpiPen yielded a price of ________ for a 2-Pak EpiPen prescription for my child. Mylan offers what they call a $0 copay card, which actually maxes out at $100. Therefore, the cost of the prescription would still be ___________ for our family. We could not afford to pay for the medication.
This is lifesaving medication for my child, who has anaphylactic food allergies to _______________.
In the past, we would have purchased four to six 2-Paks of the medication for safety’s sake.Our child will have an expired EpiPen 2-Pak as his backup. This is not ideal, and we are not alone in having to make these difficult financial decisions.
I would like to request an inquiry into Mylan’s practice of huge price increases for this drug, when there have been no improvements at all. Mylan currently has no real competitors other than a generic alternative, Epinephrine USP, which would still cost us $400 with our insurance. Without competition, we consumers have no real hope for change, hence the need to ask for your assistance.
To date, I have received one response from Representative Doug Lamborn:
Plus I received a phone call from Senator Michael Bennet’s office telling me that he has a contact at Mylan that he will speak to regarding this situation.
I just saw this post today from Minnesota Senator Klobuchar:
Please write to your US Representative and Senators! We, the food allergy community, don’t have to accept these price increases.
Many of you have read my son, Morgan’s, recent posts about studying abroad with food allergies. If you’ve missed them, please read them on his Morgan’s New Corner blog here and here. He wrote extensively about the details of what it took for him to be able to study abroad safely. He will be traveling throughout Iceland, Spain, France, Italy & Greece in August; doing research in Copenhagen, Denmark in September, and studying at the University of Lancaster in Britain from October through December 18.
As a parent, it was difficult to wrap my head around him studying abroad when he first brought up the subject prior to leaving for college. At the University of Denver, approximately 70% of the students study abroad – generally in their junior year. There were seminars about studying abroad for parents to attend during the Parent portion of the Freshman Orientation Week. I sat through those discussions and wondered how we, my husband and I, would ever be able to support this endeavor! Yet we both agreed that this was an opportunity not to be missed, if it was possible. It was going to take plenty of preparation, but the good news was – Morgan would be doing that instead of me!!
Over the past 2 years of college, Morgan has shown more maturity in being able to handle the details of his medical care. He has also become far more organized, and took on looking into the schools abroad that could accommodate his needs for safe food. Since middle school, he has been responsible for ALWAYS carrying his EpiPen 2-Pak, which he does ALWAYS. He knows how to recognize an allergic reaction in himself, and how to teach others. He can also teach others how to administer his EpiPen. He has vast experience with traveling by himself, and in groups, and keeping himself safe.
Since he doesn’t speak a second language, we knew that he would need to have an English speaking country for his study abroad, and thankfully he agreed with that wholeheartedly. I remember speaking with a father at a Parent’s Weekend at DU who was telling me that his son went to Australia for study abroad and loved it. He then mentioned that his son has a peanut allergy. I commented that it was probably easier to manage his peanut allergy in an English speaking country. The Dad said that he’d never thought of that! For some parents of children with food allergies, there is a different level of vigilance than what we’ve practiced.
We have chosen the vigilant lifestyle, based upon Morgan’s past allergic reactions. I can’t imagine being cavalier about where Morgan chose to study. It was also important, however, that Morgan take responsibility for ALL parts of the study abroad. This included whether the college/university had classes that would fit into his major; whether he could find a living arrangement that would keep him safe; and which airline he would choose to fly to his various destinations.
There are so many pieces of this puzzle to put together, and we allowed him to be the Project Manager of this adventure. He learned about an app called Trello that he was using with another project at school. This became our go-to place for listing all the details of what needed to be done prior to his departure. He would list various items that he knew he needed to provide to get into the country; and I listed other items important to me. Together we made it happen, and I also had to quit micro-detailing him to death. At 20 years old, he had shown how responsible he was, and I needed to trust that whatever happens abroad is for his highest and best good.
Yesterday, we took him to Denver International Airport. I couldn’t believe that we were at the launch point! The years of teaching him how to be safe with food allergies were going to get the biggest test yet. He has a written plan for the cities he will be visiting detailing where he’s staying, and he’s checked out various markets and restaurants. He’s going to purchase a SIM card in each of the countries he’s visiting to be able to communicate with us and with others. We will be communicating through Skype while he is abroad, however he told me to expect a weekly update – not daily! He will provide a map “touch point” every time he enters into a new city while traveling during August. This will allow us to know he has safely arrived. He also provided us with his detailed itinerary for the month of August, so we know where he’s planning on being. He’s traveling with two DU friends – one of whom flew with him. The other one, they will meet in France.
It’s not easy to allow our children to grow up and participate in college life! I cried many a tear yesterday, and hugged him three different times before he got on the escalator to head to TSA. I’m so excited for this adventure for him. And I’ve already counted the days until his return – 139 to go!
Have you been to the pharmacy recently to purchase an EpiPen 2-Pak? If you have a high deductible policy like our family does, you may need a nitroglycerin pill when paying for the prescription!
We have an Anthem HSA (Health Savings Account) insurance policy with a high deductible. What this means is that we pay $4000 of a deductible before our insurance kicks in to cover any cost of prescriptions. This means that my son’s most recent prescription was going to cost us $600!! Yep, you’re reading that correctly.
I thought this wouldn’t be an issue since Mylan is offering a $0 copay card that’s easy to find all over the Internet.
However, the fine print states that the maximum amount of monetary coverage is $100. Therefore, Morgan’s prescription would still cost us $500. And we generally purchase two 2-Paks, a month apart, so that he always has one 2-Pak on his person, and the other 2-Pak is an extra set for his dorm room in college. That’s $1000 – of very important insurance – but it’s for a purchase that you hope to never have to use. And in fact, in the 19 years of having EpiPen Jr.’s and EpiPen’s prescribed, we’ve only used one autoinjector. It was certainly needed, and we were very grateful to have it. Yet there are many families who cannot afford to purchase even one 2-Pak of this drug at the current costs, and that’s dangerous.
For those of you thinking about a generic alternative, I too looked into that. The generic device is called the Epinephrine USP :
While this may be a wonderfully, cheaper alternative for some (depending upon your insurance coverage), this prescription was quoted by Anthem at $400 for a Two-Pack with our insurance.
As most of you know, there is no other alternative currently since the Auvi-Q has been pulled from the market in a full recall of the device.
We eventually purchased two EpiPen autoinjectors made by Meda (the European based pharmaceutical drug company that Mylan recently acquired) from Canada Drugs for $225. They were shipped to our home in a styrofoam package to ensure temperature stability, and had an expiration date 14 months into the future. Never did I think I’d be happy to purchase 2 EpiPens for such a high cost.
What is going on with the cost of EpiPens?
I’ve done a little research that I’d like to share with you:
As I said before, we’ve been purchasing EpiPens for 19 years. Some years, we’ve had great insurance that covered the entire cost of several EpiPens. Other years, we paid $100 or less. It’s been only in the last few years that the price has been skyrocketing.
Previous to 2011, I was able to purchase just one EpiPen at a time. In fact, it wasn’t until 2011 that Mylan began selling only the 2-Paks when the National Institutes of Health suggested that patients have immediate access to two doses of epinephrine. We always purchased an abundance of extra EpiPens (and Jr’s) to ensure we always had one at arm’s length, and the cost was rarely an issue. But for some people, purchasing just one EpiPen would be preferable to none – yet, this is no longer an option.
The Affordable Care Act has certainly changed the nature of insurance, and thereby the cost of medical care for consumers. Depending upon your insurance company and coverage, you may not even be aware of the increase in the cost of EpiPens…or you may be selling off your couch to afford this vital medicine. From what I’m hearing from our insurance agent, more and more insurance companies are moving toward covering less and less of the costs of prescriptions.
Then, there’s Mylan, the company that makes EpiPens. Mylan purchased the rights to manufacture the EpiPen in 2007 when the device had a wholesale price of $57, and the cost of the epinephrine in the device was about $1. Mylan has increased the wholesale price by 400% since then, while the cost of the epinephrine remains at about $1.
The spokespersons for Mylan will say that they don’t set the retail price, but any college business student can tell you that the higher the wholesale price, the higher the retail price. And if Mylan is counting on their $0 copay card to be the catch all for the price of an EpiPen 2-Pak, then they need to have the copay card be truly worth $600!
For those families who don’t have the money to pay for an autoinjector, they will likely have to rely upon a school’s stock epinephrine. Yet, these cost increases also affect schools and emergency services who cannot afford to purchase the drugs, even if Mylan did give away devices for free in the first years after legislation was passed to allow stock epinephrine in schools.
Marketing the EpiPen autoinjector has been CEO Heather Bresch’s key focus. In terms of market share, she’s basically got a monopoly. I anxiously await a viable competitor, which will hopefully bring the price of epinephrine autoinjectors down. Sadly, there aren’t any contenders on the horizon. I’ve seen several prototypes, but many require assembly, which would be extremely difficult to expect a Good Samaritan to be able to do in the middle of anaphylaxis.
Mylan has not only been increasing the cost of EpiPens, but also several other generic medications that they manufacture. There is a point where the market will not allow this to continue. Congress has stepped in before (remember Martin Shkreli?), so there’s always the option of writing your Congressional Representative and/or Senator to let them know how the price of EpiPens affects your family. I believe we are at a tipping point, but it’s going to take hundreds of thousands of us to make noise to get anything to happen.
It’s amazing how much more food allergy awareness there is in 2016 than there was in 1996 when my son had his first reaction – a contact one at that – to peanuts! Twenty years makes so much difference, yet there is still a long way to go.
Rare is there a preschool that doesn’t have some awareness of food allergies; however, there are so many colleges that need to be educated. Day cares have protocols for children with food allergies, yet employers don’t have any idea what’s coming as our children age and need special accommodations in the workplace!
And don’t get me started on discussing airlines and their needs to serve peanuts, or warm nuts in First Class! We still have a long way to go to create more awareness of our children’s needs and civil rights.
There have been several key items that have occurred in the last 20 years. The main item was the Food Allergen Labeling and Consumer Protection Act which was passed in 2004 and became law on January 1, 2006. The top 8 food allergens must be labeled in words a child can understand as a result of this law. It is so much easier than it used to be to know if a product is safe.
There is now an abundance of ongoing research occurring to find a cure for food allergies. When my son was little, there was nothing, and very little funding for research. The only “cure” was complete avoidance of the offending food.
I’m convinced that in the next 20 years, there will no doubt be a cure. In the meantime, living with food allergies is not as lonely as it used to be – sadly, there are so many more children being diagnosed each day. And the Internet has definitely made the food allergy world bond and be able to reach out to more families.
AllergicChild has been online since January 2000. We’ve been sharing our family’s experience of traveling, sending our son to school, and basically every aspect of our lives as it relates to food allergies. My son, Morgan, has detailed his life since he was 9 years old for the AllergicChild audience.
Morgan has shared his personal experience about preparing for trips alone and with school groups, about college and what it took to find the right school. He also shares all his writing from the age of 9 through the present, and how food allergies have affected his life. I encourage you to visit our blog to read more of his posts. You will see that your child has an amazing future ahead!
Thank you for all your support and encouragement through the years. One day, when we have a cure, we won’t need Food Allergy Awareness Week. In the meantime, let’s continue to trudge this road and support one another!
Planes are the trickiest for those of us with nut allergies. Airlines are not always friendly to nut allergies and it is up to the airline to determine their policy regarding peanuts and other nuts on the airline. You should do a quick Google search for your airline and nut allergies: for example, I’d search “Southwest nut allergies.” Most airlines will have their policies easily accessible on their website grouped in with their “Disability Accommodations” or similar.
All of the airlines will have some kind of disclaimer that reads: “We cannot prevent passengers from bringing products containing nuts or other allergens onboard our flights. Therefore, we are unable to guarantee a nut- or allergen-free flight. Attempting to do this would create a false sense of security for passengers with severe allergies. We encourage passengers who are allergic to nuts to consult with their doctor regarding the safety of air travel.” It’s true that you’ll be stuck in a metal tube with limited ventilation for a few hours while flying and exposure to nuts in flight could cause serious issues, so you will want to consult with your doctor about the safety of air travel. However, this shouldn’t dissuade you from flying, especially because different airlines will have different policies regarding flying.
Most airline websites will have a section devoted to accommodations and there should be a small section about nut allergies. There are a few different kinds of policies airlines have:
They won’t serve nuts if they are given notice.
Southwest is famous for their “Peanut Dust Allergy” document. You’ll mark that you have a disability – a “Peanut Dust Allergy” – when you book your flight online (or you can call Customer Service and they can do this too). When you get your boarding pass, you’ll also have a printed slip that says you have a peanut dust allergy. You present this to the service representative near your gate and they will give you an extra copy and a pre-board slip (see below) that you will give to the crewmember aboard your flight and they will not serve nuts on your flight. This doesn’t mean it will be a nut-free flight as other people could have nuts, but they will usually make an announcement asking passengers to refrain from eating nuts as well. They’re fantastic!
Delta changed their policy a few years ago, so you just need to notify the crewmember that you have a peanut allergy and they won’t serve nuts. It’s very similar to Southwest’s policy, just more informal.
They will allow you to pre-board to help wipe down seats.
Southwest allows you to pre-board if you show you have a Peanut Dust Allergy document to the service desk next to your gate. Basically, this allows you to board before everyone else, find a safe seat, and clean your area before anyone else gets on your flight. I’d highly recommend this if you fly Southwest.
They will give you a “buffer” zone.
This seems to be the predominant policy from airlines that do accommodate allergies in some way. United, AirCanada, JetBlue, Alaska Air, and many other airlines will offer to create a buffer zone of one to three rows on either side of your row. The crewmember will ask all of the people in the buffer zone to not consume any nuts and they won’t serve nuts to those rows, if they serve nuts at all. JetBlue, WestJet, and AirCanda and a couple other airlines don’t serve nuts on their flights but will still offer a buffer zone to prevent other passengers from consuming nuts on the flight. This can be useful to help assure a safe surrounding.
They won’t accommodate at all.
American Airlines is rather infamous for this. They don’t serve peanut products, but they do offer warmed nuts for first class occupants and will not grant buffer zones or even allow you to pre-board to wipe down seats.
Obviously, flying is the most complicated form of travel simply because different companies have different policies regarding food allergies. My best experiences flying have been with Southwest. I know other families have had great experiences with WestJet, JetBlue, and Air Canada as well, but I’ve always flown Southwest. The combination of a pre-board, no nuts served, and relatively inexpensive rates to most places in the country have served me well.
There are a lot of online resources regarding traveling – just do a quick Google search and you’ll find a host of blogs and other resources to help you decide.
The airline is one of the most important considerations when you’re traveling as a group. It’s likely that your teacher or coach will be booking flights without regard to your food allergies or food allergy policies. You must tell them ahead of time if they’re booking on an airline that is not friendly to food allergies and explain why it’s important to have accommodations (at least a buffer zone) on a plane for your food allergies, if you have a nut allergy. If your teacher or coach has already booked flights for the trip, you must decide whether you are comfortable flying the airline and have a thorough conversation with your teacher or coach about other ways you could get to your destination if you’re not comfortable flying the same airline.
Tip #1: Carry your auto-injector (please do this anyway)
Make sure you carry your auto-injector with you all the time. Certainly, you should be doing this anyway whether or not you’re on a date. Make sure you have them on your person: they should be within your arms length whether you carry them on your person or in a bag. A purse could suffice as long as you don’t leave your purse lying around anywhere. Your auto-injector is the single most important thing you need to have just in case something happens (we’ll hope nothing does).
Tip #2: Tell Your Date… Really.
You can’t assure your safety without telling your date about your food allergies. It doesn’t have to be awkward explaining it to them! It could go something like this:
“Hey, so I didn’t know if you knew, but I’m actually really allergic to [x]. I could get really sick – even die – if I eat any of food that has it.” You don’t have to explain that kissing could create a problem (yet) unless they ask. Make sure you clearly list out your allergens and make sure your date knows that you could get really sick and/or die if you make contact with those food allergies like kissing someone. When you make the problem sound serious, your date will take it seriously.
If you’re on a dinner date, then tell them about this on the drive over to the restaurant. Lock the doors so they can’t escape! Just kidding. But really, tell them about your food allergies. If you can choose a place for dinner, make sure you choose a place with lots of safe options for both of you (i.e. Red Lobster may not be the best choice if you have a seafood allergy). If you’re meeting at the restaurant, make sure to tell your date before he or she orders.
Tip #3: Kindly make your date order a safe dish.
Usually, it works really well to immediately follow the “I’m allergic to [x]” with “I’d really appreciate it if you didn’t order anything I am allergic to.” If you’re on a date with someone, hopefully they’ll be super accommodating to your food allergies. If they’re not, you probably shouldn’t date them. Keep an eye and ear open to make sure the food they order is safe.
Tip #4: When explaining food allergies and cross contact issues to the server, make sure to say “we” and not “me.”
As is good practice, you should tell the waiter or waitress about your food allergies when you order food at a restaurant. However, make sure you say “We can’t have any of these foods so if you could mark it on both of our orders.” Whether or not your date actually has food allergies is irrelevant. Making sure the food they order is prepared safely as well mitigates problems that could occur later in the night (like a kiss). If your date asks, explain it like this: “I just wanted to make sure that all of the food on this table was going to be safe.” You don’t have to explain your desire to kiss them to get it past them. They’ll be understanding anyway.
Tip #5: Tell Your Date (Yes, Really, Again).
Have you not told them? Sheesh. You need to tell your date! You must tell them. They can’t keep you safe – heck, you can’t keep you safe – if you don’t tell them about your food allergies! They could have had a plan to take you to Texas Roadhouse but they wouldn’t know that was a bad idea if you didn’t tell them about your peanut allergy (for example).
Tip #6: Making the move: don’t make it too awkward
So it’s time for the kiss. Maybe it’s the end of the first date. Maybe it’s the end of the second. Whenever this time comes, you don’t need to make it awkward. The reason I prefer dinner dates is because I can assure that the hours before a kiss is possible contain safe food. That mitigates problems from the kiss. Hopefully (although this is not guaranteed), they are also hygienic and they brushed their teeth before they went on the date with you. You can’t assure this happens but dinner dates lengthen the time between consuming unsafe food and the ensuing teeth brushing with a potential kiss.
However, if you’re simply seeing them at night after sports practice (for example), you should ask them what they had that day. You wouldn’t want to be kissing them if they just ate a PB&J sandwich with their team for dinner and you’re allergic to peanuts. That’s not a good combination. You need to set that boundary and say, before you kiss them: “Did you eat anything that I’m allergic to today?” It can help if you list off those allergens if they’re unsure. If they just wave it off and say “no, no, I didn’t,” pressure them! Make them confirm. You don’t need to make them list off every item from every meal of the day (unless if you want to), but you do need to make sure they haven’t eaten anything unsafe in the past few hours. I know that this doesn’t keep the “moment” intact, but your life and safety is far more important than kissing someone (even if they are superbly attractive).
If you don’t feel comfortable kissing someone after a dinner date (even if they ate safe food) because you don’t know what they ate earlier in the day, it is completely okay to ask them what they ate throughout the day. It doesn’t have to be an extensive list, but frame it as if you’re concerned and you really want to kiss them but you just want to be safe. Or, you can simply postpone the kiss for another night (even if that isn’t the best solution, it is the one that keeps you safe).
Tip #7: Over for dinner? Come early or be the chef!
Your date has invited you over for dinner – oh no! Even if you’ve told them about your food allergies, you can’t guarantee that they’ll be as good as you reading labels and preparing safe food. You can either come early and read all the labels (explaining to your date that you just want to make sure all the food is safe). Even if your date assures you that all the food is safe, read the labels anyway. Make some excuse about being weird and paranoid and that you just want to make sure the food is safe, even though you trust that they have read it. Also, if you want to be extra safe, make sure they clean pots and pans before they start making dinner. You never know what has been cooked in those pans previously. Personal note: I’ve cooked a balsamic sauce in a pot before and even after three thorough cleanings, I still get a hint of balsamic in anything I cook in that pan. Needless to say, some food can stick around in the pans (especially if they’re poor quality pans like mine are).
Your other option is to be the chef! If your date invites you over for dinner and you don’t/can’t come early, insist on cooking. That way, you can bring all the safe ingredients and tools to make safe food. You can even invite them over to your place for dinner.
Tip #8: Meeting the parents: Go to a safe restaurant or be the chef!
Your boyfriend/girlfriend is now wanting you to meet their parents. That’s intimidating anyway – there’s no need to make it more complicated, confusing, or stressful with your food allergies. Your date’s parents may not fully understand your food allergies, even if it’s been explained it to them multiple times. That means there is a possibility for mistakes – and that’s something you want to avoid.
You can first invite them to a safe restaurant. If there are safe options available, kindly ask your date to order one of those and again use the “we can’t eat any of my allergens” statement from Tip #3. If you wish, you can also ask your date’s parents to order food that couldn’t cause issues. For example, I do ask for them not to eat shrimp pasta since we’re in such close proximity. I’m not going to be partaking in it, but it makes me feel uncomfortable. I’ve never had a negative reaction to this request since they can forgo one night without their shrimp pasta.
You can also be the chef! Offer to bring your food and pans to their house to cook a family meal. You can also invite them over to your house and cook them a meal. That may be a nice meet-and-greet opportunity as well between your parents and theirs.
Tip #9: Know safe “staple” foods and brands for easy shopping and food.
Eventually, you may find yourself in constant company with your boyfriend or girlfriend. It’s important to know go-to brands of food and restaurants. If they become hungry, you can simply say “how about [x restaurant]?” That way, you always have a safe option in the back of your head. This works great especially when you are with friends of your boyfriend or girlfriend; they can all enjoy good food and you can have safe options.
For long-term relationships, knowing safe brands of food means you can answer their parents’ requests about what food you would like. If you find yourself at a grocery store needing food, you automatically know which brands are safe and which aren’t.
Tip #10: Please train them.
Unfortunately, most people don’t know anything about food allergies or how to administer an epinephrine autoinjector. Train them! If you don’t train them about signs of an allergic reaction or how to administer your auto-injector, they cannot help you in times of emergencies. It doesn’t take long and it’s a very important part of keeping safe.
Bonus Tip #1: Long-term relationship tip: give them a toothbrush and toothpaste to store in their car
This may seem like a weird one, but it’s important. Maybe your boyfriend or girlfriend accidentally ate a KIND bar during a break at work and they’re seeing you later that night. You want to mitigate any possibility of having issues from kissing them later that night, so give them a toothbrush and toothpaste to store in the car.
Obviously, it’s preferred if they don’t eat any of your allergens. That sacrifice may be difficult for some and it’s up to you whether that’s a deal-breaker in the relationship. You must determine the boundaries you are willing to live with. Personally, I would prefer them not to eat anything I’m allergic to (and I voice it clearly) but I’m not super strict about it. I understand that they will be eating nuts every once in a while, but I make sure they are fully aware of the consequences. If you’ve been dating a while, it may be time to have a conversation about whether they’d be willing to give up eating a food you’re allergic to – but that’s all up to you.
Bonus Tip #2: Avoid Alcohol
Let’s ignore the fact that underage drinking is illegal. There are two parts to this.
First, alcohol allows you to do stupid things. It hinders your ability to think straight and you could end up accidentally eating something while you’re drunk that you’re not supposed to because you forgot to read the label. Usually when you’re drunk (in high school and college), you’re surrounded by other drunk people. Those drunk people will most likely be unable to help you if you eat something you’re allergic to because either a) they can’t think straight like you, or more likely b) they don’t know how to administer an autoinjector in the first place.
Second, a lot of alcohol contains food allergens and they’re not required to label it. This quite literally means your first drink could be your last. You could be your diligent ol’ self and promise to only have a sip of something even after reading the labels on the alcohol, but you don’t actually know what it is in it because they aren’t required to put it on the label. For example, Bombay Sapphire contains tree nuts and it appears nowhere on the label.
I know alcohol seems enticing and helps you “fit in” with friends. Most people respect your decision if you say “no” to their offer of a drink; however, if they continue to pressure you into drinking even after you’ve said no, then it is time for you to leave the party and maybe even find a different friend. In this instance, your life is on the line and you need to choose responsibly instead of “fitting in.”
Bonus Tip #3: Enjoy your dating life!
Life is too short to take it too serious. You should always try and keep yourself as safe as possible and I hope the above tips help out with that. Remember: you’re on a date! You’re supposed to have fun with this guy or girl who you like and who you think is really attractive. Don’t let food allergies ever stop you from dating. Be yourself and have fun! It’s a date.
Studying Abroad is a rite of passage at the University of Denver, where I attend college. There are numerous steps for every student to prepare appropriately for being in another country for a school quarter or semester. For me, adding food allergies into the mix, generates even more necessary preparation!
The University of Denver (where I attend college) is #1 in the nation for study abroad participation rates. Nearly 3 in 4 students at DU study abroad, typically during the fall of their junior year. I kid you not, it seems like the entire junior class disappears during the fall and magically reappears in the winter. DU makes it excessively easy to study abroad: they partnered with over 130 universities and study abroad programs around the world in dozens upon dozens of different countries. With a good GPA (3.0+), a student is eligible for the Cherrington Global Scholars (CGS) program. If you’re eligible for CGS, you pay DU the normal tuition and housing costs for a quarter; in return, they pay for tuition and housing at your host university abroad and reimburse visa and flight costs (among a few other things). It really makes studying abroad superbly easy (plus, they have an easily searchable database of available programs!)
I knew this coming into freshman year and I’ve spent a long time looking at the programs available. I knew a few things:
Unless I magically became fluent in another language, I would need to go to an English-speaking country. The language barrier present in trying to explain my food allergies to chefs or other people in a country that does not predominantly speak English would be a challenge that puts my life at risk. That was unacceptable so I knew I would have to look at an English-speaking country in which to study abroad.
I could not do a homestay program. This is especially true in non-English speaking countries. In a homestay, I would have little to no control over the food served and thus would be putting myself in danger. I knew a homestay would not work.
Most importantly, I would have to find a university or program that had classes that interested me and was in a country that interested me! I wouldn’t want to study abroad in a country that I didn’t like or at a university/program that offered no classes that interested me. That wouldn’t be fun and I want to have fun while studying abroad.
I found a few programs around the world in the UK, Australia, and Ireland that interested me. After narrowing it down, I found an awesome program at Lancaster University in the United Kingdom. It’s about 3 hours away from London (by train) in rural England and it’s ranked as a pretty good university!
Because I love to plan ahead, I knew this was the program I wanted to attend before I even started school my freshman year (last year). It had all of the academic courses that I desired, and the housing was on the university campus with access to a kitchen.
I did a bit more research into the program at Lancaster during the winter & spring of my freshman year and realized that the dormitory system may throw a wrench in my plans. Lancaster is set-up in a college system. Each college has its own dining hall, common areas, and living spaces. The majority of the dorms were set-up in a shared kitchen style, meaning that food would be stored in a shared refrigerator (or two) and everyone would have access to the same pots and pans to cook. That posed a lot of cross-contact issues both in storing and preparing food. I knew that I could probably buy my own pans and pots while I’m there, but I couldn’t mitigate contact between my food and other people’s in the same refrigerator. I made a judgment call and determined I didn’t feel safe with that option.
I found that some colleges have a “private ensuite” option: I have a kitchen and storage and a bed all to myself in my own self-contained suite. This mitigates a lot of the issues that could arise in a shared kitchen facility. I became really excited since I knew that the option was available! I just had to find out if I could secure a “private ensuite” while I study abroad.
I dug into Lancaster’s website and found their disability office contact. I sent an e-mail with my concerns (explaining my food allergies, their severity, the problems with shared kitchen facilities, and the possibility of a private ensuite). I heard back from the office and they said that it was a definite possibility! They remarked that it wasn’t a preferred set-up for a study abroad student simply because it limited my social interactions with other people, but they said my health always trumps those concerns.
I was really excited. I knew that I could study abroad and find safe housing at my host university. I started to research labeling laws for the UK and got some help from the Anaphylaxis Campaign in the UK in identifying the regulations. Since the UK is a member of the European Union (EU), the EU’s regulations apply to all UK manufacturers and producers.
At the University of Denver, the Office of International Education (OIE) supervises all of the study abroad programs. Students get a study abroad advisor depending upon their country and that advisor helps answer any questions regarding studying abroad and helps coordinate all of the application process.
I told my OIE contact person about my food allergies and why homestay/shared kitchens would not work. I wanted to reconfirm through him and his contacts at Lancaster that a private ensuite option would be available for studying abroad. The staff at Lancaster confirmed this! I would need to submit some medical documentation, coordinate with the disability office, and include the request on my study abroad application, but otherwise, everything was a go!
After spending the last few months coordinating with OIE, my academic advisors, and Lancaster University, I decided to add a month of research in Copenhagen Denmark, prior to the start of the school quarter at Lancaster. The research will be within my two majors: economics and public policy.
Denmark is also, technically, an English-speaking country. 86% of Danes are fluent English speakers, meaning that I won’t have problems assuring my safety in urban areas. I’m still securing a lot of the details around my research since it is a relatively new adventure! I know I’ll be staying in a no-pet and no-smoking Airbnb in Copenhagen for the month, with access to a fully-furnished kitchen. This makes it really easy to make sure I’m safe: I buy all of my own food and cook it myself! I’m still researching labeling laws in Denmark, but given that they are members of the EU as well, I’m sure their regulations are very similar to the UK’s.
I’m so excited to have this opportunity to study abroad, and to do so with my food allergies handled in a way that makes me feel safe!
Now, it’s time for Morgan to move off-campus for his Junior and Senior year. He will be studying abroad for the Fall 2016 quarter in the UK at the University of Lancaster; however, waiting until he returns in December to find a place to live will likely yield him no safe place! Therefore, time is of the essence now, 9 months in advance, to secure housing.
We have lived in our family home for over 22 years. We have ensured that the home is allergy-safe for Morgan. We put in tile floors years ago, and added Air Conditioning, which many people do not have in Colorado. We have HEPA filters on the furnace, and have no pets. Basically, our home is and has been a safe haven for Morgan, and it was the only home he lived in prior to going to college.
I hear from many parents who assume that living off-campus in an apartment is easier for food allergic students than living on campus in a dormitory. That may be true in some cities; however, Denver is seeing a population explosion and rentals are scarce and over-priced. For Morgan, living in a dorm and eating in the cafeteria has worked extremely well, especially since DU Dining Services are well-versed on food allergies. And, on-campus housing is cheaper than any off-campus apartment or shared home.
Food allergies are just one part of the equation for Morgan. He also has mild asthma and pet allergies. Therefore, he has to find a place to live that has central air conditioning, no pets, no smoking, with roommates willing to not eat his allergens, AND come in at a price that’s below his scholarship stipend! That is a difficult combination!
He immediately was able to find the roommates he wanted to live with, and had a discussion about his food allergies to ensure they were okay with his needs. With that hurdle jumped, the real issue began – Denver is big on dogs. And many college students have pets, so about 85% of the available houses and apartments allow for pets in the DU neighborhood. Of the 15% remaining, most do not have air conditioning! That narrowed his selection of available apartments to about 3 buildings.
Thankfully, he started early and has just signed a lease with three other young men to live in a 4-bedroom apartment that has AC, no pets, and no smoking. These transitions are difficult for this Mama to stomach; however, I know that Morgan is making wise decisions of who to live with, and I’m hopeful that this apartment lives up to its promises!
Lauren is now in college at the University of Northern Colorado, and I wanted to interview her, and her mother Melissa, about her experience through the rest of high school. Also, I wanted to see how she is managing in college without having a robot!
Lauren – you were 14 years old when we last interviewed you. How was the rest of high school for you with your dairy allergy? Did you continue to have a robot go to school for you?
The rest of high school was amazing! After using the V-go, my friend had told me about a charter school that was able to accommodate my food allergy. They even banned pizza, and implemented a desk cleaning before each class at the school for me! Everyone was so accepting of my allergy. I still stayed away from food areas and washed my hands often. Except for the occasional hives from dairy contamination, I had no severe reactions while I attended.
Were there any more instances of anaphylaxis during your years in high school?
Not while I was actually at the high school, but during the summer of my junior year I had a really bad one at a women’s retreat that I went to with my mom. There was a miscommunication with the staff that tried accommodating me in terms of food at the camp. I had accidentally eaten a piece of bread with dairy in it. It was a very scary ordeal, considering we were in the mountains & the response time up there is a little longer. I was scared and not sure what was going to happen but after 5 hours, 3 Epipens, 14 times trying to find a place for an IV, 2 Inter muscular injections, a breathing treatment, and lots of prayers the doctors stabilized me! Now I am much more careful and I always make sure my food is extra safe!
How did you prepare for going to college at the University of Northern Colorado?
I set up an appointment to meet with disability services at my school. They were absolutely phenomenal with working with us to make UNC a safe place for me to go. They got me an on campus house where I have a separate, safe apartment. I also took the time to talk to my professors about my allergy.
What made you choose UNC?
I chose UNC because I wanted to go away to college but I knew I really needed to be close to home in case I had a reaction. UNC was a perfect choice because it was only an hour away from my parent’s house. Additionally it had the major I was interested in. Plus, it’s awesome to see family and not have to cook your own food on the weekends!
What is your current living situation at school? How do you ensure that you don’t get near dairy?
I am in a house with a self-contained apartment on campus, I have other girls who live in the same house with me but they are on a totally different side. When I first moved in, I made them all aware of my anaphylaxis, and the severity of it. They are awesome and completely understand the seriousness of my allergy. Whenever I want to hangout in the main house, they make sure to not cook using dairy and they clean the house for me! Two of the girls are from Colorado and two are from Germany, and all have been so supportive and amazing to me, and they are actually some of my best friends now.
What are you planning on majoring in academically?
I am studying Audiology and Speech pathology and I love it! It’ll definitely be awesome to help people with hearing and balance issues one day as an Audiologist.
Have you been able to have a summer job? If so, what “food threats” have you run into with working?
In the past I have lifeguarded during the summer. It was actually a very good fit for me! I have never had a reaction at the pool, and I carry a protective mask in case I ever have to perform CPR. I also talked to my boss about my situation and I let her know that my safety is just as important as the patrons I am guarding, since in order to keep them safe I have to keep myself safe. During my time guarding, there were food parties but I didn’t have to worry about it because the guests couldn’t bring the food near or in the pool. It was definitely an awesome job!
Melissa – when we last interviewed you, Lauren was participating in Dr. Li’s Traditional Chinese Medicine (TCM). Did this treatment help Lauren at all?
Lauren is still taking the herbs. When we started the herbs we simply wanted her to be able to go inside school or the grocery store without having a severe reaction, since there was a time before the treatment that it became impossible to be inside places where food was being warmed up because her body seemed to be even more hyper sensitive then usual. We think this treatment might have helped, since (unlike before the herbs) she has been able to be inside schools, food establishments and other public places without her throat immediately closing. She has no reaction when we simply walk past a pizza place anymore (where as before she would react)
Still, if the dairy is being cooked close enough, she does still react. But at least we are headed in the right direction.
What accommodations did you and Lauren request for her in college?
We asked for them to find a place for her that would be safe from dairy. This was quite the challenge, since we live in a dairy filled world. They came up with a self-contained apartment on campus. Separate from the rest of the house. She is able to cook for herself & steers clear of any areas where pizza or food is served. This has been enough to keep her safe at school.
It was very difficult for me to pass the baton of “health watch” over to my son when he went to college. How have you been able to do that with Lauren’s severe dairy allergy?
Passing the “health watch” baton over to Lauren has to be one of the scariest experiences that we STILL struggle with daily. The good news is that since she’s been gone, she has proven herself to be a good self advocate in keeping herself safe. She did have two anaphylactic episodes since she’s been away (one could have been avoided with better diligence but the other could not) Lauren was in fact able to treat herself immediately with her epinephrine and called 911 for help. Her fast response is always critical in her outcome, and she is well aware of that, she also knows that her body keeps needing more epinephrine after the first one or two shots wear off. For me the scary part lies with the ambulance, and hospital personnel, who seem unaware sometimes how fast her reactions or biphasic reactions change in the blink of an eye. It’s paralyzing for us to think about “what if’s” So this is when we had to put our trust in Lauren & ask God to take over, so we wouldn’t lock her inside our house and never let her out.
Thank you Melissa & Lauren for inspiring hope in all of us!
I received an email today telling me about the new Mylan and Disney digital book, “Show-and-Tell Scout”. The email went on to state, “Mylan and Disney are excited to announce the launch of the “Show-and-Tell Scout” digital book, an educational storybook aimed at raising awareness about anaphylaxis (a life-threatening allergic reaction) in the school setting. An estimated one in 13 children in the U.S. lives with a food allergy, putting them at an increased risk for anaphylaxis. Because anaphylaxis can occur anywhere and at any time, it’s important to educate all families about food allergies – even those not managing a food allergy at home.
“Show-and-Tell Scout” follows the story of Scout, a young fox living with potentially life-threatening (severe) allergies to milk and peanuts. We learn about his severe allergies and the importance of being ready to respond should he experience anaphylaxis.
The “Show-and-Tell Scout” digital book is available exclusively on, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents. The “Show-and-Tell Scout” digital book is available exclusively on MyAllergyKingdom.com, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents.”
I think this is a great idea for these two companies to combine efforts to put out information on food allergies. However, there is a lot of information that I don’t agree with in the text of this book.
Here is the email I sent to the team that emailed me: “Thank you for forwarding the book to me. It’s exciting that Disney and Mylan are launching this book.
I wonder if there’s a possibility of changing the language in this book prior to releasing it to everyone? There are several items in the book that just aren’t correct:
On the page about Mrs. Fox telling the teacher on the first day of school about Scout’s allergies – based upon our experience and thousands of others – no teacher wants to hear about allergies on the first day of school. For the success of a child with food allergies at school, it is ALWAYS recommended to have such discussions months in advance of the school year starting.
Secondly, no parent is going to be allowed to train a teacher how to administer an epinephrine autoinjector. In every public school, it will be the responsibility of the school nurse to do this type of training. I believe it is required by law in our state of Colorado.
This is a somewhat detailed point, however any child who accidentally eats one of their allergens would never walk to the nurse’s office. The nurse would bring the epinephrine autoinjector to the child. It is dangerous for a child in anaphylaxis, or where anaphylaxis is a potential, to remain upright and walking.
Other items that I noticed, and that I believe other food allergy families would notice, is that Scout is sitting with children eating his allergens. This can be a dangerous practice, especially for young children who spill food, and for those exquisitely sensitive to their allergens.
Lastly, many children with severe food allergies will have a 504 Plan in addition to a severe allergy action plan. Of course, this plan would only be available in public schools, but might be worth a mention in the back of the book.”
While I believe the intent of the book is good; I’m not supporting the book as it is currently written. I’m hopeful that an edit will be forthcoming soon.
Many readers suggested that I look into EAT – End Allergies Together – a new non-profit focused solely on funding research, and promising that 100% of net proceeds will go to research. I have communicated with the founders, Kimberly Hall and Elise Bates, via email and was told that they will inevitably have some expenses as they go forward for staffing, etc. and they still promise that at least 80 cents of every dollar will go toward funding research. That is a phenomenal percentage, and well worth looking into if you want to fund food allergy research. Below are their Food Allergy Research Areas. You can make a request for a specific area, such as gut bacteria, for your donation to fund.
I recently wrote about the DBV Technologies Epicutaneous Immunotherapy “Peanut Patch” in my blog post, FOOD ALLERGY RESEARCH & THE PATCH. While DBV does not allow individuals or non-profit food allergy groups to donate to their research, it is available for you/your child to participate in a research study. Information about this participation is detailed in the blog post.
I also recently wrote about Traditional Chinese Medicine in my blog post, FOOD ALLERGY RESEARCH & TRADITIONAL CHINESE MEDICINE. Dr. Xiu-Min Li is the only doctor researcher in the USA practicing both Traditional Chinese Medicine, although her work is confined to immune conditions such as allergies, not the full range treated by other herbalists and acupuncturists, and doing research on TCM to cure food allergies, eczema, asthma, etc. There is information in this blog post about donating directly to her research.
Lastly, some people choose to donate their time and expense to research by becoming involved in a research study. This is a great way to donate to food allergy research. Of course, there are always medical risks with any research participation such as anaphylaxis, eosinophilic esophagitis or other immune system issues. You and your family will have to decide what level of risk you are willing to undertake. There may also be travel costs in order to check in with a doctor on a regular basis. If you’re interested in participating with a research study, ask your allergist whether you and/or your child is a good fit. Many research studies have qualifying criteria to become a part of the study. You can find current research studies at https://www.clinicaltrials.gov/
As Albert Einstein stated, “No problem can be solved from the same level of consciousness that created it.” Therefore, I’d like to present researched treatment which corrects many of the behaviors in the immune system that cause allergies – – Traditional Chinese Medicine (TCM.) And, in my opinion, it has the best chance to truly CURE food allergies.
I have been a patient in Dr. Li’s private practice and am currently using a TCM cream to lower the inflammation in my body to help heal my Eosinophilic Esophagitis and Mast Cell Disorder. I am thrilled with the results so far, and have seen a much higher level of energy for myself and less medication needed to manage my symptoms.
Dr. Xiu-Min Li is the only doctor in the US practicing both Traditional Chinese Medicine, although her work is confined to immune conditions such as allergies, not the full range treated by other herbalists and acupuncturists, and doing research on TCM to cure food allergies, eczema, asthma, etc.
Dr. Li has been involved in the medical field since the late 1970’s when she got an MD in both Chinese and Western medicine at a Chinese medical school in Zhengzhou, China. She went on to study integrative clinical pediatric immunology in Beijing, and then clinical immunology at Johns Hopkins Medical School in the US. It was here that she worked with Dr. Hugh Sampson, a foremost food allergy researcher. Dr. Sampson’s support of Dr. Li’s research has been key in moving it forward.
It is the combination of her knowledge of Chinese medicine and the Western medicine of allergy and immunology that is creating groundbreaking research toward curing food allergies.
There have been multiple research reports regarding Dr. Li’s research in the Journal of Allergy & Clinical Immunology. You can see a partial list of her research here.
In addition to her research, Dr. Li has a private practice with patients, infant to adult, using creams, herbs, and teas, in combination or individually, depending upon the specific allergic issues that are presented. With my sensitive gut, I was not able to tolerate swallowing any teas at first. Therefore I am using a cream, which I apply to my entire body daily. I laugh when I tell people that I am like the witch Elphaba from Wicked – an entire body of green! I will soon graduate to soaking in herbs and then swallowing the tea.
Since my experience with Dr. Li’s protocol is more recent, I’ve interviewed two Moms, Selena Bluntzer and Deirdre Olsen, who discuss why they chose Chinese Herbal Medicine treatment and their daughter’s progress under Dr. Li’s care:
Selena, What made you and your child choose to pursue treatment with Dr. Xiu-Min Li?
My daughter has multiple food allergies, asthma, and eczema. I had researched various treatment options for years, and after a friend of mine made plans to have her children see Dr. Li, I realized it could actually be a reality for us, as well. We live in Texas, so it wasn’t an obvious thought for me to pursue treatment so far away. However, Dr. Li’s research and treatments had been the only ones that gave me a real sense of a possible future cure. There is no other researcher/practitioner in this space, to my knowledge, whose work encompasses the “whole condition” – addressing all of the stages of the “allergic march” – eczema, asthma, allergic rhinitis, food allergies, etc.
My daughter sees Dr. Li in her private practice clinic, which she manages independently of her work at Mt. Sinai. While Dr. Li is a researcher at Mt. Sinai and manages a full scale lab plus a production site for her medicine, she is also the only food allergy researcher that has a clinical practice. Patient data from her clinical care is used to fuel her research endeavors, the same way that other researchers use the findings from their closed clinical studies. She is constantly innovating and refining her numerous treatments. She is able to treat her patients as patients, not as study participants, so she can improve her medicine as she helps us. We are definitely receiving personalized medicine, as our protocol is tailored to my daughter’s specific needs. My daughter likes and trusts Dr. Li, which really helps with the treatment process.
Deirdre, What made you and your child want to participate in the Chinese Medicine research?
Our daughter (now 13) was diagnosed by 24 months with severe food allergies, eczema and asthma. It was very overwhelming. We were constantly going to the dermatologist and pediatrician to keep her skin and lungs under control.
We live in NYC and after seeing a number of dermatologists and allergists we finally met Dr. Paul Ehrlich. During a visit after another skin flare up, he looked at my husband and I and said, “I really would like you to consider seeing Dr. Xiu-Min Li.” We were in a vicious circle of flare up, steroid cream, calm, then it would start all over again. Jaclyn had allergic dark circles under her eyes, and her skin as well as her entire immune system was always “on alert” ready to attack. We spent many years like this.
We met with Dr. Li for two hours on the first visit. We took copious notes and hung on every word she said- and still do! Our daughter (then 9) took to Dr. Li who has a sweet, patient and loving demeanor. After spending so much time with us, we decided to start TCM with Dr. Li.
When did Jaclyn begin using TCM?
Jaclyn started 5 years ago and has had amazing results. Her quality of life has increased immensely. Her once off the charts IgE at 6600 is now hovering just below 800. She is able to eat a number of foods that she couldn’t 5 years ago. She is cleared for food challenges to egg, hazelnut, coconut and brazil nut in the upcoming months. She rarely, if ever, needs a puffer. She rarely gets sick now. Her skin is clear and smooth for 4 1/2 years.
Has Jaclyn had any type of reaction?
Jaclyn has not had any adverse reaction to the herbs. A few times she felt nauseous after a bath or starting a new capsule. In this case we contacted Dr. Li and she dialed back the dose or eliminated it.
Have you noticed any decrease in reactions to her allergens? Or any changes in overall health?
Jaclyn had contact eczema. Everywhere we went we put down a towel or sheet so she would not break out. We have not done this in 4 1/2 years. Where she used to get 4 colds a winter, she is down to 1 a season now. Jaclyn’s seasonal allergies are also much better. She still is allergic to a number of trees and pollen but no where near where she was.
Jaclyn’s overall health is much better. She is rarely sick. She eats well and is comfortable in her own skin.
Thanks Selena and Deirdre for sharing your experience!
If you’re interested in learning more about Traditional Chinese Medicine, please check out the TCM website here. There is also a Facebook page, Chinese Herbs for Allergies for anyone interested in the TCM treatments.
Lastly, if you would like to find out more about Dr. Li’s specific programs and studies currently open to funding, you can speak to either: Susan Weissman, a parent of a patient who volunteers her time as her fundraising coordinator. You can reach her at Susan@SusanWeissman.com; or Erica Edwards at Mount Sinai who can be reached by phone at: 212-659-8500.
For those of you ready to donate to find a cure for food allergies, you can support Dr. Li’s research at Mt. Sinai by making a check payable to the Icahn School of Medicine at Mount Sinai.
In the memo portion, make sure to write Dr. Li – Chinese Medicine for Food in Jaffe
Mail check to the following address:
The Mount Sinai Development Office
Attn: Erica Edwards
One Gustave L. Levy Place, Box 1049
New York, NY 10029-6574
In my quest, I came upon the company DBV Technologies. DBV is the company performing research on the Viaskin electrostatic patch, which administers an allergen directly on the skin.
I spoke with Susanna Mesa, DBV Technologies Vice President of Finance, Investor Relations & Strategy. I inquired whether an individual could donate to the research and was told that DBV does not take donations from any individual nor any food allergy non-profit. They want for their research to be completely free of any influence or desire for specific results. Therefore, the best way to support this type of research is to get involved in a research study. (More info on that below). Our discussion was so compelling that I wanted to pass on the information about their product.
As their website states, “DBV Technologies believes EPIT® (Epicutaneous Immunotherapy) has the potential to provide all of the intended benefits of a disease-modifying treatment in allergy, while avoiding severe or life-threatening allergic reactions.” In fact, there have been no systemic reactions to their product by any patient in their 10 years of research. Since the patch is applied to the skin, there have been mild topical reactions which usually decrease within a few weeks of wearing the patch.
DBV monitors patients involved in their research for 3 years. After the first year of wearing the patch, protection from anaphylaxis, in case of accidental exposure, has been seen to occur. Research has shown that those wearing the patch for longer periods of time, such as 24 months, have been able to consume more of their allergen without a severe adverse event. Patients do still carry an EpiPen, but they are able to travel and eat more comfortably. Additionally, if a patient removes the patch, there isn’t an immediate re-sensitization to the allergen within the first day.
As of November 1, 2015, renowned food allergy researcher, Dr. Hugh Sampson, became the Chief Scientific Officer of DBV. You can read the press release here.
The design of the patch has also taken into consideration the caregiver. I asked Lianne Mandelbaum of No Nut Traveler a few questions about her experience with her son, Joshua, who is involved in the peanut patch study.
What made you and your son want to participate in the Viaskin research?
I always had 2 allergists for Josh – one local in NJ and one at Mt Sinai because I always wanted Josh in a clinical study (as it seemed the allure of a cure was so far off) and Mt Sinai was always conducting studies. But to be honest, our bad airline experience with United (the one that spurred me to launch NoNutTraveler) made me even more determined to get him in a study. The experience really shook me to my core, thinking his allergy could potentially dictate his future life choices. For example, he is a great tennis player and is starting to really compete and at some point he will need to fly to tournaments (and Jet Blue does not fly everywhere).
I was that mom constantly calling Mt Sinai to check if there was a study he was eligible for. I had also started researching private practice OIT and Chinese herbs, but then we got the call for the patch study, and it was a no brainer to say yes. I read all the studies in Europe on the patch and there were no life threatening reactions due to treatment (which was always a fear of mine). Plus, if you got the placebo, after a year you got treatment at a higher dose patch , so I felt it was worth it even if we had the placebo to start. I felt we could always try the other options but this was a really great opportunity for him.
Which research study is he a part of?
He is part of CoFAR6 Peanut Epit- out of Mt Sinai NYC.
When did your son begin wearing the Viaskin Peanut Patch?
He started wearing it a little over 2 years ago.
Has he had any type of reaction?
His only reactions are hives at the site of patch which continues today although they are less angry looking.
Have you noticed any decrease in reactions to peanuts?
He had a reaction at 1/8 of a peanut at the oral challenge to enter the study. After a year he did go into anaphylaxis at his challenge but it was at 2 peanuts- a huge difference.
About 7 weeks ago he had a decrease in his peanut allergy skin prick test. This is the first decrease in 8 years and it was a big decrease- we are so hopeful as to what it means.
Our final challenge is at 2 years 6 months in May and we are hopeful but also cognizant that 2 years 6 months may not be enough time and hope to get more patches if that is the case.
Being in a study has empowered Joshua. He feels he is doing something that has the potential to really help other kids with peanut allergy. I believe he feels this is a way to “fight” the allergy. I am also grateful he went into anaphylaxis after year one, yes you heard that right – I am grateful. Josh had not had anaphylaxis since he was 2, and he did not remember what it felt like. He not only knows what it feels like now. He saw how quickly the Epi saved him and he is vigilant about carrying it.
Thanks Lianne for sharing your experience!
DBV is currently recruiting for three different clinical trials: peanut, egg, and EoE. More information about each of these trials is available here.
The PEPITES (Peanut EPIT®Efficacy and Safety Study) is the first food allergy research to reach a Phase III trial with the FDA (Food & Drug Administration) in the US. It will be a randomized, double-blind, placebo-controlled trial designed to assess the efficacy and safety of Viaskin Peanut in approximately 330 pediatric patients in around 30 centers in North America (United States and Canada), Australia and Europe, according to the DBV Technologies website. This is very exciting!
I’m very hopeful that the “Peanut Patch” will yield promising results toward research for a cure for food allergies!
I have recently begun speaking with local Colorado Springs, Colorado Allergists and their staff regarding the large number of teens and young adults who have died from anaphylaxis.
I wrote an article for Allergic Living, Teens Speak Up About Averting Food Allergy Tragedies, which showed me that too many teens aren’t taking the precautions necessary to keep themselves safe; however, the teens did state that they listen to their parents and their doctors about food allergy information.
In Dr. Ruchi Gupta’s newest survey of parents, which she titled, Parents in dark about using epinephrine for kids’ food allergies, she found that “Less than 70 percent of parents recalled their allergists explaining when to use epinephrine and less than 40 percent said the same of their pediatricians.” Therefore, I question whether teens and young adults are getting good information from their parents.
Therefore, I felt it was time to bring this information to the attention of allergists in my area.
Here is the checklist I’ve suggested for allergists to discuss with parents, kids, teens and young adults who have food allergies, EVERY TIME they see the patient. Similar to an asthma checklist, which my son completes each time he sees our allergist, this checklist would be given to the patient to complete and review the gaps in behavior that could potentially create a life threatening situation.
A PDF version of this checklist is available here.
From what I’ve found, allergists in my area are not currently reviewing these items with their food allergy patients. In an educated patient, the checklist could be reviewed quickly and rewarded with a high-five or fist bump! In patients who need more awareness, the allergist can remind the parent and child/teen or young adult which behaviors are risky and where to make changes.
If a food allergy patient isn’t seen but once a year to get an EpiPen prescription refilled, then it is especially important for the physician to review these questions to ensure safety. I’m convinced this would begin to educate the patients and parents who so desperately need to hear from their doctors how to practice vigilance.
Please FEEL FREE to share this with your allergist and/or pediatrician and help to save a life!
I have been a member and/or officer of several food allergy related non-profit groups for almost 20 years. I have the hope that when I send an organization my hard-earned money, they will be good stewards of my donation.
My review of four food allergy organizations showed me that salaries and operational expenses take up a large part of the revenue stream of many food allergy non-profit groups. As a percentage of income, only one organization is giving away large amounts of money toward research – in fact it’s 64% of their revenue! Read on for what may change the way you contribute to food allergy organizations.
First a disclaimer – I am not a Certified Public Accountant. I majored in Finance, and have a Bachelor of Business Administration from The George Washington University. I continue to work in the field of finance providing financial management to several businesses, in addition to my work with AllergicChild.com.
The 990 is just one avenue to glean information about a non-profit. Utilizing Guidestar.org and Charity Navigator can provide additional information in your search for the best organization to donate money, in addition to annual reports of the organization and information from their website.
FARE’s mission, as stated on their website, is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments.
FARE is the largest food allergy non-profit organization with $15.5 million in total revenue in 2013. They spent 35% of this, or $5.5 million on salaries and employee benefits. Then CEO, John Lehr, received a total of $341,968 in salary and other benefits. There were 8 other key employees listed with salaries above $100,000; and a total of 72 people employed in calendar year 2013. They gave $2.1 million (or 13% of income) in grants. The largest single grant was for $825,423 to Mt Sinai School of Medicine for “Food Allergy Programs”. The only grant listed for “Research” was $122,070 to Stanford University School of Medicine. FARE was the only organization with investments or other securities listed on their 990. They listed 2,982,570 shares in “ARC” which is Allergen Research Corporation, which develops desensitization treatments for food allergies. These shares have a book value of $2.4 million. Charity Navigator gives FARE four stars overall, but only 3 stars for “financial”.
FARE’s 2014 Form 990 was just released showing a decrease of annual income to a little under $13 million. They spent 47% of their income, or a little over $6 million, on salaries and other benefits of their employees. James Baker Jr. was the CEO from 8/1/14, and made $208,151 for 5 months until the end of 2014. There were an additional 9 employees receiving salaries above $100,000 for 2014, and a total of 81 employees during the year. There is no mention of the shares of ARC on the 2014 990 except that “Investments-other securities” now show a value of $150,505.
In 2014, FARE gave only $1.4 million away in grants: a paltry 10% of their gross income. “Research” was indicated in over $1 million of the grants. Charity Navigator has not updated their rating for the year end 2014.
AAFA – Asthma and Allergy Foundation of America
AAFA’s mission, as stated on their website, is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy and research.
AAFA was the next largest organization with $3.7 million in revenue in 2013. They spent $1.6 million (43%) in salaries in 2013. William McLin, President and CEO, made $274,251 in salary and other benefits. They had 2 other key employees with a salary over $100,000, and a total of 17 employees. They gave $161,500 (4%) in grants. The largest grant was $60,000. This same amount went toward “Biomedical research” to both Massachusetts General Hospital and to the University of Iowa. I will include KWFA here because of the merger with AAFA. KWFA had $229,566 in revenue with $102,372 (44%) going toward salaries. In 2013, there were no employees listed. Charity Navigator gives AAFA 4 stars overall.
In 2014, AAFA made $3.5 million and spent $1.9 million (54%) on salaries. Cary Sennett is the new CEO as of June 2014, and made $149,303 for that partial year. There are now 3 other key employees with a salary over $100,000, and a total of 26 employees. They gave $100,000 (2%) in the form of 3 separate grants – all for “Biomedical research.”
APFED – American Partnership for Eosinophilic Disorders
APFED’s mission, as stated on their website: To passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.
APFED was by far the best steward of its funds in 2013. With $638,083 of total revenue; they spent only $56,549 (or 8%) on salaries. Additionally, they gave away $311,990 (48%!) in cash grants. Their largest single grant was for $100,000 to Children’s Hospital of Philadelphia for research. They listed 5 employees for 2013. APFED is not rated by Charity Navigator.
In 2014, APFED made $451,942 in total revenue; spent $93,393 (20%) on salaries, had a total of 4 employees, and gave away $290,000 (64%!!) on grants; the largest of which was for $70,000 to ARTrust. Once again, APFED was the best steward of funds in 2014.
FAACT – Food Allergy & Anaphylaxis Connection Team
FAACT’s mission, as stated on their website, is to educate, advocate, and raise awareness for all individuals and families affected by food allergies and life-threatening anaphylaxis.
FAACT filed a 990 in 2014 and their total revenue was almost $136,000. They paid $10,637 in salaries, or 7%. There were no grants listed.
Summary: For the almost 17 million dollars given to these organizations in 2014, there is a little less than $1.8 million given in grants – and some of this is going toward educational grants and not toward research. The question becomes – do you believe in the mission of the organization? The vast amount of money is clearly NOT going toward research for a cure? Are you being helped by the conferences the organization provides; the educational webinars; and the lobbying efforts? Then send in a donation! However, if you thought your monetary donation was primarily going toward finding a cure for food allergies, I’d suggest finding somewhere else to donate!
My son, Morgan, is currently a sophomore at the University of Denver (DU). DU is a private university in the heart of Denver, with approximately 5000 undergraduate students.The school requires that all students live on campus for two years, which sounded impossible when managing food allergies. Yet we tried to be open minded when we first visited the campus. After touring the school, meeting with the Dining hall chefs and with the Housing office – we determined it was going to be not only safe, but great!
DU has been wonderful with accommodating students with food allergies; however their website doesn’t have very much information about the wonderful things that they do. We found out how great they were back in 2008 when our daughter, Michaela, (who has celiac disease and a mast cell disorder) attended a music camp for two weeks during the summer. The chefs prepared her meals based upon a list of safe brands of foods and menus that we provided prior to the beginning of the camp. Each meal was safely prepared for her, and it convinced us that this was THE school for food allergy students!
I recently spent 90 minutes in a meeting discussing food allergies and how it impacts students at DU with the Vice Chancellor of Campus Life, Dr. Lili Rodriguez, Dining Services Resident District Manager, Ira Simon, and the DU Communications Director, Elise Chester (who has a two year old son with severe peanut allergies!) I wanted to encourage them to provide the details of how amazing they are on their website. The meeting proved to me that they are totally ready to take on the topic of food allergies on campus.
Here’s some of the takeaways from the meeting:
After Morgan chose to attend DU, he emailed Ira Simon to request a meeting to discuss his food needs. Ira set up the meeting to include all the chefs that worked at all the residence halls on campus. That way Morgan would feel safe eating anywhere on campus. I attended this meeting along with Morgan. We were both very impressed with all the knowledge and willingness the chefs had to provide whatever safe food Morgan needed. A personal meeting with all the chefs on campus is a staple for every student with food allergies, and this personal meeting will now also be part of the campus tour for all families who request it so that they can discuss their child’s specific food allergies with the chefs.
All of the chefs have gone through AllerTrain to be trained on handling food properly to ensure no cross contact, and to be able to properly read labels. You won’t see this information currently on the DU Dining Services website, but this is soon going to be included.
What’s also forthcoming is a request for each student with food needs to quarterly (DU is on the Quarter system) meet with the chefs to review any needs not being met and to share compliments and concerns. This will ensure that the chefs maintain the personal relationship they like to have with each student with food allergies.
DU currently lists the ingredients of every food they serve on their Dining Services website and it’s also listed in their cafeteria. They want to expand the ingredient listings to be available on a smartphone App. Better yet, they hope to be able to have a student input their allergy or allergies and be able to view a menu of safe foods for the upcoming week. Morgan already utilizes the website to click on a menu item to see if any of his allergens (peanuts, tree nuts, sesame, fish or shellfish) is listed as an ingredient. Not all kids are accessing the website currently, which is also fine. The chefs enjoy getting to know the students and what food allergies they are managing.
DU currently offers “Simple Servings”, which are meals free of 7 of the top 8 food allergens, in one of their cafeterias. The only food they do serve is fish. Separate equipment, storage areas, utensils and preparation areas minimize the chance of cross contact in the kitchen.
They have a dietitian on staff to discuss individual nutritional needs of every student, and to manage food allergies, intolerances, diabetes, etc.
DU has been wonderful to Morgan and Dining Services basic motto is “We will provide anything you need to be safe.” That is so comforting as a parent! And this will also be expanded upon on the website in the future.
We also discussed how the University can better identify and manage the huge number of incoming students with food allergies. I was thrilled with how open minded everyone was to discuss better ways to manage students with food allergies, and to provide more information about the University’s current policies to incoming families.
The administrators plan to add the question of “Do you have food allergies?” to the housing request form, which is completed by all admitted students. This will allow the Housing department to match students better to ensure safe dorm living with no food allergens in the room. It will also prepare the Resident Advisor (RA) to be trained on EpiPen administration, and to ensure that other students in that area of the dorm are aware of which foods shouldn’t be eaten. Gathering information from students with food allergies months prior to the start of school will allow DU to share the information with professors too, should accommodations be necessary in the classroom environment.
Of course, any accommodations will need to be approved through the Disability Services Office (DSO) which will also be receiving an update to their area of the website to include food allergies as a potential disability. The DSO paperwork is also slated for an update to include food allergies.
The plan is for all campus staff to be trained on the administration of an EpiPen, including RA’s. Colorado passed a law earlier this year allowing for a Good Samaritan to administer an epinephrine autoinjector, and this law extends to college employees.
One of the housing issues that may impact students with environmental allergies or asthma is “comfort animals” that are brought to college to help calm anxiety issues. Some of these animals are furry friends, similar to service animals. Housing has to place students appropriately in zones so that shared ventilation systems do not cause issues for those with allergies and/or asthma. Again, DU is planning on obtaining this information sooner in the process by asking the question on the Housing application about service or comfort animals.
I’m very hopeful that the DU website and housing application paperwork will be updated by February 2016 to include all of this information for students with food allergies and their families. It’s so exciting to watch a university take on food allergies!
For those of you in attendance, you know what a special weekend we had at the Food Allergy Bloggers Conference in Denver! And for those of you who weren’t there, you were certainly able to keep up with all the activities via social media. We are a talkative bunch on Twitter, Facebook, and every other social media site you can imagine!! The hashtag is #fablogcon if you’d like to catch up on everything that was tweeted.
Robyn O’Brien provided the keynote speech about our food system. She asked the question, “Are we allergic to food or what’s been done to it?” Robyn is a fellow Coloradoan, and we got back 10 years to when her youngest daughter got diagnosed. She has really taken on the food industry, and was a real highlight to my first Bloggers Conference.
Jenny Sprague, shown here with me, is the organizer and founder of this great conference. She coordinates the entire conference from her home in Maine – and let me tell you that’s a feat in itself. It takes the better part of a year to obtain sponsors, presenters and speakers. And she has the best Expo of any food allergy conference I’ve ever been to. There are so many vendors showing off their new products that it’s easy to get lost for hours learning about new EpiPen cases and “free-from” foods. The swag bags we received were outstanding with samples from numerous vendors.
We actually received two bags because there were so many products! With my limited diet, my son was SO happy I shared my goody bags with him…he took them back to his dorm to share with numerous friends.
And speaking of Morgan, he and I spoke about College Accommodations for food allergies, along with Jim Long, former senior attorney for the Office of Civil Rights at the Denver branch. Jim is a rock star when it comes to understanding 504 Plans, and being able to mediate a solution for a student with food allergies.
Morgan also got to meet two wonderful chefs during the conference: Cybele Pascal is a favorite cookbook author in our house! Her lettuce wraps are superb. She and Morgan had a lively conversation about how to reach college students with food allergies. Morgan is a big fan of “Tasty”, a video production of recipes. Sounds like something will be forthcoming out of this!
and Keith Norman
Keith’s ability to provide safe foods for so many different dietary needs is amazing. He came in to the Denver Renaissance Hotel and trained their entire staff about cross contact and how to safely feed patrons with food allergies and gluten intolerance. I’m sure the hotel will never be the same – and that’s such a good thing!
So, mark your calendars for next year’s Food Allergy Bloggers Conference. I can’t wait!
Recently, both my son, Morgan, and I have had interesting issues eating out at restaurants.
I have been diagnosed with an eosinophilic disorder, which means that I make my own safe food and bring that to a restaurant when meeting friends. It would be wonderful to be able to eat food prepared by a chef, but currently that isn’t yet a possibility. I eat only organic foods, and I eat just 4 foods currently. It’s certainly not where I hope to be forever, but for now, it’s what my reality is.
My husband and I met friends in Denver, CO at the Vesta Dipping Grill expecting a wonderful dining experience for the three of them ordering food. Their expectations were met; mine however was a little different. While the restaurant claims to be very accommodating to allergies, the assistant manager was less than thrilled with me bringing my own food. In fact, after everyone else’s food was served, he marched over to the table to tell me I was breaking the law! When he commented that if I brought in the food because of a medical condition that would be different. This is when my husband stepped in (I was crawling under the table at this point), and informed him that yes, it was a medical condition. At that point the manager told me that the next time I come in, I will need a doctor’s note to bring in my own food. This entire interaction took less than 5 minutes, and I was mortified.
I have been bringing my own food into restaurants for literally the last 9 years. This is the first time I’ve had any restaurant employee even make a comment about the food, much less tell me that I’m a law breaker!
I’ve searched high and low through all of Colorado’s Retail Food Establishment Rules and can find nothing that states, “no outside food allowed” in Colorado restaurants.
The more interesting part of this story is that when I shared it with my son, Morgan, he told me about his experience with the same restaurant. He and a friend ate there a few months ago thinking they would be great with his peanut, tree nuts, sesame, fish and shellfish allergies with their 8 different allergy menus. Instead, his food was served with a dipping sauce filled with sesame seeds. This was after he meticulously discussed his food allergies and gave his Chef Card to the waiter. He is thankfully very careful about checking his food order when he receives it, and he noticed that his food was not safe. He said he will NEVER eat there again because of this mistake!
Moral of the story – don’t trust a restaurant automatically that says they are allergy aware! Always check your food before taking a bite, and of course always carry your epinephrine.
Update and Follow Up:
My husband, Robert, wrote an email to the owner of Vesta Dipping Grill, Josh Wolkon, explaining our disappointment and embarrassment with our dining experience. Josh followed up with a personal conversation with Robert outlining what they’ve done to change the dining experience for customers like myself who have to bring in food. They utilized our experience for a 2 hour training of all his restaurant employees in his 4 restaurants, and have developed a written, detailed plan for managing outside food brought in because of allergies.
My husband also explained our son’s experience with the sesame seed in the dipping sauce. Josh was very disappointed in this major mistake, and said that this too will be utilized to better train his employees of the seriousness of food allergies.
I’m very impressed that the owner of the restaurant would take his time to speak with my husband, AND to train his employees further. Additionally, we’ve been promised a gift certificate for a future dining experience, which I’m sure will be pleasurable!
This past week has been rough for those of us in the food allergy world. There have been two deaths from anaphylaxis: Andrea Marianoof Canada and Simon Katzof Colorado.
These deaths have hit me hard. Maybe because they both were teens who ‘always carried’ their epinephrine, but didn’t do so on this one occasion – a decision that would change the course of their life. Maybe it’s because Simon Katz lived just one hour from me. Maybe it’s because these deaths were so avoidable.
Regardless, I’ve come to the conclusion that we need to take a stand and say, “NO MORE DEATHS!”
I don’t want any more parents to become advocates in the food allergy world after they’ve endured an unimaginable tragedy. There needs to be a complete change in how the message is given to teenagers to “always carry your epinephrine!”
How to go about this?
I’d like to ask Mylan and Sanofi (the makers of EpiPen and Auvi-Q) to fund and lead a campaign, along with national food allergy organizations like FARE, FAACT and Kids With Food Allergies, to get this message out to the following stakeholders:
1) ER doctors – I can’t even count the number of times I’ve heard food allergy families recount the miscommunication they’ve been given from an ER doctor about food allergies and epinephrine auto-injectors. These doctors must be educated to counsel families properly about EpiPens and Auvi-Qs. The devices should never be left in a car glove compartment – it’s criminal for doctors to be giving out this advice!
2)Family Practice doctors and Pediatricians – It’s my belief, based upon my experience, that if a child has a peanut allergy they should be referred to an allergist. An allergist is better able to manage these allergies that research has shown are more likely to cause anaphylaxis. I’ve heard too many families tell me that their child’s peanut allergy isn’t serious enough to warrant an epinephrine auto injector, according to their pediatrician. This makes me cringe and shows that more education is needed for these doctors if they are not going to make a referral.
3) Allergists – My experience has been positive with allergist’s knowledge of epinephrine auto injectors and the need to always carry them. I do see an opportunity for allergists to have more training on how to work with teens to create an agreement on compliance however. Having a doctor empower the teen provides more weight than a parent reminding, “do you have your epinephrine?”
4) Parents/Families – There are many lessons that families need to pass on to their children, who grow into teenagers, with food allergies – always read labels, don’t eat foods that don’t have a label, and always carry your epinephrine. The likelihood is that mistakes will be made. But the one message that parents need to understand from the first day of diagnosis is to never leave home without epinephrine. Yet many parents have not understood this message enough to follow through every day, every time they leave the house. Children watch what we parents do, not what we say. American Express used the tagline “never leave home without it” for years. We need to encourage all families to follow this sage advice! We also need to encourage families to let the school know if your child has food allergies and is to carry epinephrine. Complete the school paperwork, and tell those who need to know to keep your child safe!
5) Teenagers – Today’s teens are immersed in social media. Let’s meet them on Facebook, Twitter, Instagram, Tumblr, etc. with messages about food allergy awareness and carrying their EpiPen/Auvi-Q. Using the technology of their smartphones, we can reach teenagers where they live, to show them it’s cool to have epinephrine with them. If something were “Apple cool”, I’ll bet teenagers would be clamoring to have it! It’s also ‘sick’ to train your friends on allergic reaction symptoms, and ‘dope’ to train them on EpiPen/Auvi-Q administration.
6) Schools – More and more states are passing legislation to allow for stock epinephrine in schools. Yet if the school isn’t aware of the students who have food allergies, or don’t have it available at school events, it’s not going to be helpful. Schools need to run “Anaphylaxis Drills” to determine if they are prepared for a teen suffering a severe allergic reaction. Many schools don’t know the steps to take for such a drill.
Lastly, I’d like to ask for Sanofi and Mylanto createan epinephrine device that is smaller and more likely to be carried by teenagers. The cost of EpiPens and Auvi-Qs have increased drastically over the last few years. Please take some of those profits to fund new technology in compact, easy to carry auto injectors.
If you haven’t heard of Traditional Chinese Medicine, you’re in for a treat! And if you have, you know that Henry is the author of “Food Allergies: Traditional Chinese Medicine, Western Science, and the Search for a Cure”. Henry graciously offered to answer a few questions about this treatment option for eczema, food allergies, mast cells and even Eosinophilic Esophagitis!
First of all, Nicole, thanks for giving me this opportunity to communicate with your readers. I hope they will find it informative.
The six most obnoxious words in the English language are “as I say in my book” so at the expense of stealing my own thunder…. I met Dr. Li when I went up to her office at Mount Sinai at the suggestion of my cousin and co-author of an earlier book, Dr. Paul Ehrlich, a prominent pediatric allergist. We also had a new website, AsthmaAllergiesChildren.com, and he told me, “I have been practicing for over 30 years and this is the first thing that sounds new and hopeful to me.” So I met Dr. Li. When she showed me photographs of the dramatic changes her therapy had made on really bad atopic dermatitis, I knew something was up. I mean, these were bleeding, sores on the feet of a ten-year-old girl. Within a few months, the skin was clear and she was painting her nails. I have a daughter. That means something to me.
How is Oral Immunotherapy (OIT) different from TCM?
OIT, like all immunotherapy, works by essentially over-stimulating the part of the immune system that produces allergic antibodies—allergen-specific IgE—by feeding progressively larger doses of the allergen until it can’t keep up with demand, allowing the part that produces tolerogenic antibodies—IgG—to gain the upper hand. Instead of allergen-specific IgE occupying the receptors on mast cells and basophils, IgG starts to occupy them instead. Allergens that once triggered reactions by connecting with IgE on those cells are rendered harmless.
Traditional Chinese medicine as practiced by Dr. Li works on modulating the immune system. There are two kinds of helper cells involved, Th1, which helps fight infections, and Th2, which is associated with allergies. In a normal immune system, IgE is a tiny fraction of IgG. But for various reasons, Th2 and IgE gain a disproportionate share of immune response. Dr. Li’s therapies restore Th1 and Th2 to their natural equilibrium. Oh, and one thing I have to stress is that Dr. Li also treats digestion so that the gut has a better chance of breaking down allergenic proteins before they can be absorbed into the blood stream and find their way to different parts of the body.
Let me add that immunotherapy and TCM are not competitive or mutually exclusive. TCM patients are also receiving OIT, just as they are receiving shots and sub-lingual immunotherapy. There’s no single therapy that will help every patient in the long run.
How long has Traditional Chinese Medicine (TCM) been used by Dr. Li to treat patients for food allergies?
Her private, independent clinic got started to treat recalcitrant eczema while she did more conventional research in her “day job”. However, in the mid-1990s, food allergy mothers she met at a fundraiser for the Jaffe Food Allergy Institute, where she was doing research, upon hearing of her success with eczema, told her their kids’ stories and she was so moved she set out trying to find ways to help, backed by Dr. Hugh Sampson, her boss. It was a very bold move. Dr. Li was trained in both western medicine and TCM. She looked to the classical TCM formulary for answers, and started to find them, starting with a treatment for intestinal parasites. It is important for your readers to understand that while Dr. Li is following all the NIH protocols for her investigational drugs, she is also allowed to use versions of these medicines as supplements in her clinic.
Is she working on having fewer pills to take/teas to drink as part of her protocol?
Yes, Nicole. One of the problems with these treatments is that because they are derived from plants, therapeutic doses require lots and lots for prolonged periods. Compliance is a challenge for all of us, whether we have diabetes, asthma, or even just take a low-dose aspirin (as I’m supposed to do—don’t tell my doctor). Dr. Li works with her own lab and scientists in China to refine the medicines and reduce the burden on patients. Her food allergy herbal formula-2 had a dosage of 10 pills, three times a day for a phase-2 trial. Lots of subjects had trouble. The next trial will use B-FAHF-2–refined with butanol, a form of alcohol—that will take the dose down to six or eight pills a day total. Much easier.
Have there been any patients on TCM long enough to say that their immune system has been remodeled, and they are no longer allergic to foods?
Yes there have, although most of her patients have complex co-morbidities—and it’s a work in progress for many of them. I suggest your readers also check out an article published last year in a Canadian journal about three cases of frequent severe food anaphylaxis to see how dramatic the changes can be.
In a video at last year’s Food Allergy Bloggers Conference, you and Dr. Li were interviewed for a podcast. Dr. Li mentioned using TCM for patients with Mast Cell Activation Disorder (MCAD). Has she had any success with patients with this condition?
In the new book that Dr. Li and I have co-written, there is case of this, also called mast cell activation syndrome. Just so you know, MCAD or MCAS for mast cell activation syndrome is disease in which mast cell degranulation is triggered by all kinds of things, from foods, to exercise, to heat…really lots of things. It didn’t even have a name till 2010 or a practice parameter till 2011. It can be IgE mediated or not. We have one whole chapter in our book devoted to one case of a girl of 14 who suffered for 5 years without a diagnosis even, and almost died. Dr. Anne Maitland, a colleague of Dr. Li’s, is gaining a reputation as an MCAS specialist, and the two of them are doing great work. The case we write about it the book will tug your heart strings.
What about children with Eosinophilic Esophagitis (EoE) – are they able to tolerate the herbs? Have any children been ‘cured’ of their EoE?
The short answers are “yes” and “yes”. In my first book I have a case of a boy who was successfully treated, and according to his mother now has the enviable position of being able to eat pizza every day with his friends. Before he couldn’t tolerate dairy.
Let me add a key point here—all Dr. Li’s treatments are highly individualized. You don’t go in and get the food allergy pill, or the asthma pill, or the EoE pill. You get a combination of things that help with the multiple organ systems that are involved. The herbs overlap, and so do their effects.
And one more critical point: Dr. Li is a full-time scientist and a part-time healer. The scope and ambition of her research is breathtaking. Her chemists and biologists love working for her. A month doesn’t go by when I don’t hear about something new emanating from her lab or suggested by researchers elsewhere who have been following her work.
Tell us about the new book you are writing – when should we expect it? What’s the topic?
Think The Godfather and The Godfather Part 2, where the sequel is as good as the original. This book updates the food allergy research from the last book but also goes into greater detail on ASHMI—anti-asthma herbal medical intervention, which I only wrote about briefly the last time. But it’s huge for people with this condition. It also goes into the atopic dermatitis treatment at length, Crohn’s Disease, MCAS, and some other things. I wrote the first one the way I did because I was learning the science on the fly, but this story is much bigger than any single allergic disease. Dr. Li is getting an award next year from the Future of Health Technology Institute, which is normally very high-tech and where the people obviously see this as very important for the way we understand and treat disease. The new book will be out some time in 2016. After writing two books in three years, don’t expect a third one any time soon, although I know if there is it will be better than Godfather Part 3.
Henry Ehrlich is the editor of asthmaallergieschildren.com and co-author of Asthma Allergies Children: a parent’s guide and half a dozen other books. He was a long-time professional speechwriter, with three grown children and one granddaughter.
I recently traveled to New York – alone – for a conference put on by the Roosevelt Institute. As I’ve mentioned before, Roosevelt is a national organization trying to re-engage young people in the policymaking process. They offer a national training each year to leaders of the Institute from around the nation at Franklin D. Roosevelt’s home in Hyde Park, NY. Since I started my chapter of the Roosevelt Institute at the University of Denver, I was invited to attend!
They offered to cover my flight out (which is great)! I had a great few e-mails with their operations specialist at Roosevelt and then I called and voiced my concerns about which airlines I could fly. Since I’ve really only had good experience with Southwest, I told them that I would prefer to fly with them. However, there was one main problem: I had to be at Grand Central Station in NYC by about 2:45pm on Thursday, August 6th to catch my train to Poughkeepsie, the nearest train stop in upstate New York. Only one flight from Denver would get me to LaGuardia airport at 1:40pm (landing time). I knew that it would be a tight push to get off the plane, get my luggage, and get to Grand Central in an hour.
Instead, I had Roosevelt book a flight the day before. This allowed stress free traveling and some extra time. Since I didn’t book the trip online, I called in to Southwest customer service and explained my peanut allergy so that it would be noted on my reservation.
The next problem was, where would I stay? My Mom and I had a couple discussions about friends and family we knew in NYC and in Poughkeepsie. We looked up a hotel in Poughkeepsie that was relatively cheap. However, we eventually settled on renting through Airbnb.
If you’ve never used Airbnb, it’s wonderful! It is a website where home owners advertise a room or their entire place for you to stay in, like a hotel. Usually, however, you’ll have access to a full kitchen and all the amenities you may not have in a hotel. Plus, they must mark if smoking and/or pets are allowed. By default, they’re not! This makes the stay even better. I found a very awesome room to rent in Poughkeepsie, NY. I submitted my request to room there for the night and had a great conversation with the owner through Airbnb before I went confirming the non-smoking and the no pets! I didn’t get into my food allergies since I knew I could find safe food. She and her boyfriend lived together; they were both lovely and fully accommodating.
Roosevelt arranged housing for the duration of the conference at a nearby motel called the Golden Manor. I was supposed to have a roommate, but he didn’t show up. Instead, I got to have a room to myself! Now that I had my housing arranged, I had to make sure I had my food all in order.
I coordinated again with the operations specialist at Roosevelt for a menu of the food provided at the conference. (I’m allergic to peanuts, tree nuts, sesame, fish and shellfish.) She got back to me and we realized that, in fact, all but one of the meals would be safe! She double checked with the caterers for ingredients and confirmed that all the meals (except one) would be perfectly safe. The lunch on Friday was Chinese, which was not safe for a multitude of reasons. Instead, they bought me a frozen meal that was perfectly safe (it was a burrito bowl and we both triple checked the ingredients) that I ate instead of the Chinese food.
I also brought extra food for myself (a few homemade granola bars and a couple of bagels) just in case a breakfast or a lunch turned out not to be safe. That way, I always had something to eat!
The trip itself went very smoothly. I arrived in NYC at LaGuardia airport, got my luggage, and hailed an Uber. Uber is another great app that allows you to hail a (more or less) private driver – like a taxi, but usually they’re nicer cars and nicer people – that will take you anywhere. The fee for the ride is all conducted through the app and tips are automatically added. It’s really a seamless experience and I had a great Uber driver on the way into New York City.
The driver dropped me off with my luggage at Grand Central. I forgot how many people lived in New York City! Despite the masses, I found my way to a ticket booth, got my ticket, and got on the train to Poughkeepsie. It was about an hour and 45 minutes long. Once I arrived in Poughkeepsie, I walked the short walk to the Airbnb place and arrived home for the evening! Since the owners were out, they left a hidden key outside and let me know via the Airbnb app. Once they arrived back, we chatted for a while before we both went to bed. I had packed food for the trip and I ate along the way.
In the morning, I had a granola bar and some coffee. A light breakfast, admittedly, but I kind of spaced on what I would do for that morning. Even with all of my careful planning, I did overlook it, but I was grateful I had brought extra food. After a while, I said goodbye to my wonderful hosts and walked back to the train station. Roosevelt promised to shuttle us from the train station up to Hyde Park, where FDR’s home is.
The conference was absolutely amazing. We got a tour of FDR’s home and presidential library (both of which were great!). We also did some great trainings for leadership, strategic planning, policy making, coalition building, and even PR techniques. The food went absolutely perfectly throughout the entire weekend and the staff were so wonderful! Every time I went to get food, the staff was double checking with me about the ingredients of the food and what I could eat. It was just wonderful.
One night, a huge group of us walked 15 minutes up the road to a nearby diner. Just like any restaurant I go to in a foreign place, I played it safe and got some French toast. I double checked with the waiter and he double checked with the chef; everything went great. It was really tasty French toast, too!
After the conference was over, I took a mid-morning train back to NYC from Poughkeepsie on Sunday, August 9th. Even though I had a small suitcase with me, I decided I wanted to look around NYC a little bit, so I ventured my way onto the metro and went down to the World Trade Center. The memorial was absolutely gorgeous and the new One World Trade Center is great! I grabbed Panera for lunch before going to the airport via Uber.
My safety for the entire trip was assured by planning ahead and making sure everything I was going to eat was safe. I just communicated my concerns and I made sure all of it would work! Overall, it was an amazing experience.
Last Friday, I was in Denver meeting with a bunch of non-profits and elected officials for my most recent project: the University of Denver Roosevelt Institute. I’ve made mention of it before, but to recap, it’s an undergraduate non-partisan think tank. We’re a chapter of a national network of campuses that is attempting to re-engaging young people in politics (a tall order, I know).
Anyway, I had a meeting with the Governor’s Senior Advisor, Jamie van-Leeuwen. Jamie advises the Governor of Colorado on social policy and projects (like homelessness) and has a wealth of experience in urban and economic development. He actually started his own international development foundation called the Global Livingston Institute. Needless to say, he’s very intelligent and was great to meet with him. He’s an absolutely whirlwind of energy – I swear this man never sleeps.
I had scheduled a meeting with him at 12, but he was late. He had to finish up a panel discussion with a number of interns in the Governor’s office. Once he arrived, the conversation went something like this:
Jamie: “Hi, Morgan, right?”
Me: “Hi Jamie, yes. Nice to meet you!”
Jamie: “Nice to meet you to! I’m running late, sorry about that. But I’m actually supposed to be at a lunch – do you mind coming along?”
Me: “Uh, sure! I’d love to.”
Given that this was the only opportunity for me to meet with him in a month (he’s in Africa now working on projects related to his foundation), I figured if I had to talk to him on the way to a lunch (and at the lunch), I would. We basically raced to his car and started a short drive over to the Denver Center for the Performing Arts, where the lunch was being held.
As it turns out, a celebration of culture for North & South America (called the Biennial of the Americas) was going on during last week and Jamie served on their board. Since this was the last lunch of the event, he needed to at least make an appearance. While I chatted him up on our car ride over, my mind was already thinking about the food at the event. I figured I would wait until we got there and see what they were serving.
After a few brief hellos with people Jamie knew, we sat down at a table. There was a salad with spiced chicken on it and a vinaigrette already drizzled over it. Accompanying it was a chocolate cupcake with a nut-looking topping. As I sat down, a server came over and began to pour some water. I turned to her and immediately asked if the salad has any of my allergens. She tells me she will ask the chef and departs.
Jamie and his friend we sat down with immediately turn to me and ask if everything is all right. They were very interested in my safety! I briefly explained that I had severe food allergies; they completely got it. The server returned and told me that everything in the salad was 100% okay. They did not prepare anything with shellfish, fish, or sesame. They aren’t a nut-free kitchen but the salad did not contain nuts. I felt very comfortable with that answer and began to dive into the salad.
While the lunch was going on, there was a really great panel between the Mayors of Denver and Calgary, and a former Mayor of Bogota. They were talking about the importance of local community change. I always think about how important it is for parents of food allergic children to work with their schools and the school board on making sure food allergic children are safe in their schools. That’s a great example of what the Mayors were talking about.
Without even asking, the server later returned and said the cupcake was topped with pumpkin seeds and not nuts, but cautioned me again that they weren’t a nut-free kitchen. I thanked her. As a general rule, I always pass on dessert simply because most desserts have some sort of cross contact issue with nuts, whether or not the topping is pumpkin seeds.
Overall it was a great lunch and Jamie was awesome to talk to. I certainly wasn’t expecting to go to lunch, but everything turned out just fine! I always make sure to ask about the food served, especially at big galas. Who knows what’s in the food!
The other weekend I went with a friend and ate at P.F. Chang’s. For those of you who are familiar with the restaurant’s menu, it seems like an odd choice for my food allergies (peanuts, tree nuts, sesame, fish and shellfish). It’s Asian cuisine and most of the menu items contain some sort of nut or shellfish/fish ingredient. However, I’ve eaten at P.F. Chang’s since I was very young and I’ve always had an excellent experience. I became good friends with the Head Chef and then Assistant Owner of a local P.F. Chang’s in Colorado Springs so I knew what went on in the kitchen and what menu items could be prepared safely.
My favorite menu item is Crispy Honey Chicken – a very “play it safe” but delicious dish. I’ve eaten it dozens of times and never had any issue.
Anyway, we sat down and the waiter came over and introduced himself. He brought us menus and we ordered water for drinks. I knew what I wanted to order because of my allergies and I knew the dish would be safe. When he came back, I notified him of my food allergies. He told me that P.F. Chang’s has a “matrix” or print out of items on the menu that would be safe for me. He returned quickly with this print out and let us scan through it. I don’t know how this list is compiled, but it is most likely a list of dishes that “may contain” the allergens input. I never received clarity on it.
To my surprise, the Crispy Honey Chicken was not on the list, despite my eating of it a mere month or two before. There were probably only four or five items on the entire list. When the waiter returned, I notified him of the issue and he said he couldn’t do anything about it, nor could he assure that the item was safe. I went ahead with it anyway and ordered Crispy Honey Chicken. I knew it was safe and I had eaten it many times and very recently too. I simply asked him to notify the chef of my food allergies or put it in the system so they could prepare it separately from all the other food – something I know P.F. Chang’s does for food allergic customers.
The waiter said the chef couldn’t do that. They couldn’t guarantee the safety of my food or prepare it in an area away from the regular food. I was surprised and at this point a little scared. What if I couldn’t actually eat my “play it safe” dish? What if P.F. Chang’s had changed? Or, was it just this location that had different practices? I told the waiter to give me a few minutes to think about it.
I was mainly surprised because the Head Chef and Assistant Owner I knew from my youth made it very clear that the kitchen always has a separate area to prepare dishes for food allergic customers. I decided to take matters into my own hands and call the restaurant – from within the restaurant. I asked to speak to a manager. I told the manager: “Hi! I’m looking at coming to your P.F. Chang’s but I have severe food allergies. I’ve eaten at many P.F. Chang’s but I just wanted to check your practices. I know you have a matrix print out, but I was wondering if the chefs prepare food for customers like me in a separate area.” The manager confirmed! She told me that the chefs use separate pans and oils to prepare food for food allergic customers and I only would have to notify my waiter to put it into the system.
I was much happier at this point because I knew I could have a safe meal. I made sure the waiter had put it in the system when the meal was ordered (really, I double checked) so I could have a safe meal. The meal was delicious and safe and nothing went wrong.
Within a couple days, I called the restaurant back and spoke to a manager (a different one) and explained to him what had happened. I also made clear it wasn’t a big deal for me but that it could be an awful experience for a family who had never eaten at P.F. Chang’s. They would either be very scared or they would simply leave. He was deeply apologetic and told me he would have a deep conversation with the waiter about practices. The odd thing (for both the manager and I) was that the waiter was not new and was pretty familiar with the kitchens’ practices for food allergic customers. That aside, the manager sent me a $15 gift card and I’ll definitely be returning for more Crispy Honey Chicken.
I think there are a few important lessons from this adventure:
First, waiters can be wrong. They can also be right! I’ve had many positive experiences with waiters at restaurants, including P.F. Chang’s. Sometimes, however, they can be incompetent and unwilling to ask their manager or the chef. In those cases, you need to take matters into your own hands like I did to make sure you’re getting a safe meal.
Second, play it safe. I knew Crispy Honey Chicken was a safe dish even though the matrix didn’t have it. That’s a risk I took but given that I had eaten it a mere month before, it was a relatively safe risk. If you’re at a restaurant you’ve eaten at before with an incompetent waiter, eat something you’ve had before to play it safe. If you’re at a new restaurant, get something that looks like it is the least risky dish.
Finally, I think it’s very important to be patient. I could’ve lost it and gone after the waiter but I didn’t. Working it out and getting as much information is super important to understanding the situation at hand. Getting in touch with a superior (like a manager) also helps. Being patient makes sure that you are careful and deliberate in your decisions.
Overall, it wasn’t the best experience. I certainly had moments where I was unsure or scared that the food was not going to be safe but I had faith in the chefs in the back to keep it safe. Everything turned out well – and hey! I have a gift card of $15. Always good.
I cannot believe I have finished my first year of college at the University of Denver (DU). It is CRAZY!
The main event in Spring Quarter was flying out to Los Angeles to attend a conference at the University of Southern California. I founded a chapter of the Roosevelt Institute at DU. Roosevelt is a non-partisan, non-profit, undergraduate think tank (how’s that for a mouthful) that seeks to empower young people in political change ranging from K-12 reform to international development, economic justice to public health issues (like food allergies!). The Western Region held an annual conference at USC that I was invited to since I had recently started up the chapter at DU. They were very understanding of my food allergies and expressed an interest in accommodating them.
Everything didn’t work out how I had planned. I had initially understood sandwiches were going to served for the mid-conference lunch but that was soon changed to Indian food. Needless to say, I was at a loss as to how to work around Indian food. I decided to bring my own bagels and snacks in my suitcase for a safe alternative for food. Thankfully, the breakfast they provided was safe. I knew I had to work around it since it was a last minute change, and I didn’t throw up a fuss. Since I could bring my own food (or heck, even order Jimmy John’s to deliver once I was there), it was not a problem.
For dinner, I ate at In-n-Out Burger. I’ve had In-N-Out before on a trip my senior year and I knew it was safe. I double checked once I was there and they assured me nothing contained sesame. It was absolutely delicious!
Just to reinforce something, this was the first time I had flown alone – no friends, no family, nobody with me besides, well, me! It was a big leap forward. However, I flew Southwest Airlines so I knew no problems would arise. You can indicate (like I did) a “peanut dust allergy” when ordering tickets and get two things: a preboard slip and a PDA slip. Preboarding allowed me to enter first and clean off my seat from any previous flight to prevent contact with allergens. The PDA slip I gave to the flight attendant and because of it, they do not serve peanuts on the flight. Overall, the conference was a safe and successful trip!
I have to say: the reason my first year at college was successful was because of my roommate, Thomas.
Thomas comes from the humble little town of Buena Vista, CO and he is one of the best people I know. He wouldn’t eat my allergens in the dorm room, he’d wash his hands if necessary, be considerate of the restaurants we’re eating at, watch out for my health, and simply would be a good guy. Thomas was truly an amazing roommate. We were randomly assigned through the housing system and I have to say I was very fortunate to be assigned to room with him. I can’t offer enough praise for having such an awesome guy.
I trained Thomas about allergic reactions and what symptoms to look for, and how to administer my EpiPen. He’d even read labels on things! I hope every food allergic child has such an awesome experience.
Certainly, Thomas was aware of my food allergies because I told him – an essential step. When your food allergic child(ren) go to college, tell them this: do not keep them hidden from the person/people you’re living with! I set out the standards of asking him not to eat things I was allergic to in the room and everything worked out amazingly.
To celebrate the end of the quarter, I went and saw Wicked, the famous Broadway musical. I have seen it before and I absolutely love the play. Very catchy show tunes – they’re still stuck in my head almost a week later!
The program at DU that helped sponsor this also paid for a pre-show dinner at a local French restaurant called Bistro Vendome. They offered a choice of two appetizers, four entree dishes, and two desserts since we had such a big group (over 30 people!). I told the waitress about my food allergies when I ordered the dishes I wanted and told her also about cross contact issues. She was very nice and helpful and triple checked all the dishes with the chef to make sure they were safe! It was a wonderful and delicious (and free!) dinner.
On Campus Food
The last quick note I’d like to make is that I still had no issue with the food on campus. The local dining hall actually had a change in staff so there was a new head chef! I made sure to introduce myself but since all the food has ingredients clearly labeled on television screens, I knew there wouldn’t be an issue.
I’ve just finished reading this book about gut bacteria, which has led me to believe even more strongly in the role that good gut bacteria plays in health. While the book doesn’t specifically cover food allergies, it does state that “Dysbiosis, or microbial imbalance, is observed in people with a variety of health problems such as Crohn’s disease, metabolic syndrome, colon cancer, and even autism.”
The authors (both are PhD’s in Microbiology and Immunology at Stanford University) also cover the damage that our hyper-hygiene world does to killing off good gut bacteria – along with killing the bad pathogens. This phenomenon, the hygiene hypothesis, has been postulated as one of the potential causes of food allergies.
Research has found that the bacteria in our gut talk to other areas in our body, constantly regulating our body. So, if a child doesn’t have the proper bacteria to tell the body to NOT react to foods such as peanuts, tree nuts, eggs or dairy – the body believes these foods are a pathogen, and protection is needed – thereby initiating the allergic reaction.
Of further interest to those with children with Eosinophilic Esophagitis (EoE) is the information provided on the mucosal immune system: “The mucosal immune system contains two branches, one that reacts aggressively to a threat (the pro-inflammatory side) and one that dampens the aggressive response once the threat subsides (the anti-inflammatory side). The proper response to gut microbes involves a continual balancing act between these two branches, much in the way that a seesaw is balanced when equal weight is placed on both sides. When the seesaw is perfectly balanced, immune harmony is achieved.”
There is a link between gut microbiota and personality/psychological issues. In research with mice, microbe-free mice had memory-related problems. “Chemicals produced by these gut bacteria can penetrate the walls of the intestine and seep into circulation and reach the brain.” More research is being done to identify these chemicals and how they affect our mental state.
The book has convinced me that a healthy diet of vegetables, probiotics, fermented foods and MACs (Microbiota accessible carbohydrates) are in our family’s future!
Most of you reading this blog are probably familiar with asthma – the ‘regular’ asthma that is in the lungs, causing mucous production, coughing and wheezing. Asthma is a serious illness causing NINE deaths per day in the USA. For some people, it’s very hard to get it managed properly. For others, a cocktail of inhalers, bronchodilators and nebulizers are needed.
Now, imagine if you had asthma in your gut!
“Asthma of the Gut” is the best description I’ve heard yet to explain Eosinophilic Esophagitis (EoE). Gastrointestinal doctors are now using this term regularly to explain this debilitating condition.
What is EoE? According to APFED (American Partnership for Eosinophilic Disorders) it is: “an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.” APFED has more detailed information about EoE which you can read here. There may be a genetic link in some families, and environmental allergies may also be a component.
According to AAAAI (American Academy of Allergy Asthma & Immunology) : “In EoE, large numbers of white blood cells called eosinophils are found in the tissue of the esophagus. Normally there are no eosinophils in the esophagus. EoE can occur at any age and most commonly occurs in Caucasian males. The symptoms of EoE vary with age. In infants and toddlers, you may notice that they refuse their food or are not growing properly. School-age children often have recurring abdominal pain, trouble swallowing or vomiting. Teenagers and adults most often have difficulty swallowing. The esophagus can narrow to the point that food gets stuck. This is called food impaction and is a medical emergency.”
Diagnosis of EoE
The diagnosis of EoE can be tricky since it can mimic other illnesses, such as gastroesophageal reflux disease (GERD), celiac disease, parasitic infection, Crohn’s or colitis. In general, if you have the symptoms discussed above, an endoscopy is going to be performed, where esophageal biopsies will be obtained. If you (or your child) have at least 15 eosinophils in at least 1 high-power microscopy field, then you are likely to receive the diagnosis of EoE.
Mast Cell Involvement/Treatments
I haven’t heard of specific research on this; however, I want to mention some anecdotal evidence that I have. Almost every parent of a food allergic child that tells me that their child is inhalant allergic to a food has later been found to have EoE. I’ve had two GI doctors tell me that if eosinophils are elevated in a person, then mast cells are also elevated. When mast cells are elevated, a person is much more sensitive to their environment, and more likely to react to even the smallest exposure of an allergen.
It takes a special lab staining technique to check for mast cells in the gut, and most GI doctors in the USA aren’t using this stain. Therefore, if the doctor checks for mast cell involvement, too many times they erroneously think there isn’t a mast cell increase. Yet, both my daughter and I have later had the Alcian Blue 3 staining completed on our biopsies and found that our mast cells were extremely high!
In adults, GI doctors are regularly prescribing mast cell stabilizers (such as Ketotifen or Gastrocrom) for their patients with eosinophilic disorders. Yet children with EoE are commonly not receiving these medications. According to AAAAI, “Glucocorticosteroids, which control inflammation, are the most helpful medications for treating EoE. Swallowing small doses of corticosteroids is the most common treatment. Different forms of swallowed corticosteroids are available. At first, higher doses may be needed to control the inflammation but they are linked with a greater risk of side effects.
Proton pump inhibitors, which control the amount of acid produced, have also been used to help diagnose and treat EoE. Some patients respond well to proton pump inhibitors and have a large decrease in the number of eosinophils and inflammation when a follow up endoscopy and biopsy is done. However, proton pump inhibitors can also improve EoE symptoms without making the inflammation any better.”
Elimination diets and/or elemental diets (amino acid formula) are other treatments for EoE. Yet even those don’t work well for some people.
You may have read about a family who chose a wildly different treatment for their son when none of the standard treatments worked. You can read what Gerson Therapy did for this little boy here.
Eosinophilic Gastrointestinal Diseases (EGID)
According to APFED, “Eosinophilic esophagitis (EoE) is far more common than the eosinophilic gastrointestinal disorders that affect the rest of the GI tract. ”
I am that rare bird! I have a diagnosis of eosinophilic involvement throughout my gut – stomach and intestines in addition to esophagus – my diagnosis is Eosinophilic Gastroenteritis, which my doctor said is equivalent to the evil twin: Mastocytic Enterocolitis.
All of these terms just sound so much easier as “Asthma of the Gut”.
In the case of the gut, where 75% of the immune system resides, there is certainly a need for some mast cells to fight off parasite or bacterial infections. However, eosinophilic disorders create a gut with an abnormally high amount of eosinophils (and mast cells) in the esophagus, stomach, duodenum, intestines and colon. Inflammation occurs, and the lining of the gut is damaged creating malabsorption. It is a dangerous cycle to get into.
What are the symptoms of EGIDs?
Because there is virtually no research on EGIDs – there are so few people to study – I’ve taken on my own recovery. I do eat a very limited, organic diet currently to help my gut heal. I take several medications to manage my mast cells and eosinophils (Budesonide, Zyrtec, Zantac, Ursodiol and Ketotifen). My gut is healing enough now to slowly decrease my Budesonide!
The biggest healing force I’ve found is meditation. If I envision my gut healing, on a daily basis, I’ve found that my intention is stronger than any illness!
I remember when I first ran into another Mom whose son had food allergies. My son, Morgan, was 18 months old happily playing at the park. I was chatting with another Mom watching her 10 year old son playing. In the course of the conversation, she mentioned that her son had peanut allergies. Since Morgan had just been diagnosed at that time, I was ready for all the scoop on managing the allergy appropriately. She told me to be prepared to be in the Emergency Room a couple of times a year, like they were. She recounted a story about her son eating a cookie, which turned out to have peanut butter in it, and ending up going to the ER. I was horrified!
At that time, I didn’t know much about managing food allergies, but I knew that a couple of trips to the ER every year wasn’t acceptable to us. This was the beginning of an education about food allergies for me and for our family. Mostly, we wanted our son to know that vigilance about his food allergies was going to be required.
So what makes a family too relaxed about food allergies? Through the years, I’ve found that families who haven’t received all the information about how serious food allergies can be tend to be too relaxed. Sadly, these same families are frequently the ones who don’t carry an EpiPen or Auvi-Q with them at all times, and some haven’t even been prescribed an autoinjector. When anaphylaxis occurs, they say that they never realized how serious a food allergy could be. It’s tragic.
This points to another issue – many families only see their primary care physician and not a Board Certified Allergist about food allergies. We were so lucky that our primary care doctor knew when he was out of his league with Morgan’s reactions. He referred us to an allergist for proper care. A Board Certified Allergist should be able to distinguish the false positive from the actual food allergy. An Allergist can determine whether the wheeze is from asthma or another source. It’s their specialty.
Then there’s the too relaxed family where the child hasn’t had any food allergy reactions in years. It’s easy to become complacent. Like a snake in the grass, that’s when the complacency will come back to bite you! Just because a child hasn’t had a reaction in years doesn’t mean they’ve outgrown the allergy. It’s important to have your child retested to determine the level of their allergy as they age. We have done this every 4-5 years. Morgan hasn’t had anaphylaxis since he was 10 years old (and that was to fish to which he had previously tested negative!). He still tests allergic to multiple foods. He hasn’t grown out of any of his ‘original’ food allergies. He’s just been cautious!
There’s also the child who uses food allergies and complacency to ‘get back’ at a hyper vigilant parent. Instead of being empowered to take on their own food allergies, they’ve resigned their condition to Mom or Dad to manage it. We ensured that our son knew he was responsible for his food allergy care and management. From the age of 4, he carried his EpiPens on his body when we left home. He began carrying his EpiPens at school once the law was passed in Colorado allowing him to do so, which was when he was 11 years old. This encouraged his awareness of taking care of himself. We involved Morgan in every decision about going to parties, family gatherings, and school activities. He needed to let us know what he felt comfortable with when food was involved. This encouraged him to be responsible for his food allergies.
I recently was at a parent event at the University of Denver speaking to a father about his son’s study abroad experience. I mentioned that Morgan was choosing among universities in English speaking countries because of his multiple food allergies. The father says to me, “My son has peanut allergies, and we never thought about mentioning that.” Thank goodness his son studied in Australia! For Morgan, he’s very aware that a language barrier could mean the difference of a wonderful study abroad experience and one where he ends up in an ER!
We aren’t relaxed about Morgan’s food allergies, and we aren’t so hyper-vigilant that he can’t live life. There’s a balance in between those two extremes. It takes practice and lots of communication with your child to find the middle ground.
The second quarter of the year has been fantastic!
Trip to Buena Vista, Colorado
About three weeks into Winter Quarter, my roommate (Thomas), two friends (Bryce & Kieran), and I decided to go down to Thomas’ house in Buena Vista for the weekend. We just wanted a weekend away from college and to be able to relax; what a wonderful time it was! I drove us down Friday evening and we stopped by Beau Jo’s pizza, a famous Colorado-based restaurant. I had absolutely no issues with their pizza and I did double check with the waiter and the chef if it was. We arrived late Friday night at Thomas’ house.
The entire weekend (Friday through Monday morning) was mainly comprised of lounging around and watching movies, but Bryce & I did utilize the kitchen a lot. She and I made breakfast both days and she was very mindful of my allergies. We didn’t make anything I couldn’t eat and, despite her being a vegetarian, the majority of her nut-filled snacks were eaten on the road and she made sure to wash her hands afterward.
Thomas has a dog, Lucy; however, I had absolutely no issues during that weekend with Lucy! It was a huge improvement from a few years ago before I got allergy shots. I didn’t have any tightness in my chest or coughing and I definitely didn’t have an allergic reaction.
We drove down to Salida, CO on Saturday and hung around for a few hours meandering through the streets after having lunch at a local restaurant. The restaurant was very accommodating. The cooks typically pre-prepare their meat at the beginning of the day; because of this, the waitress was concerned that many of the meats could have cross-contaminated with fish and shellfish. When this concern was expressed to the chefs, they made an entire new section of meat just for me so I could have a safe meal! (I was having spicy chicken quesadillas)
On Sunday, Bryce and I coordinated the final dinner, but everyone helped out making an Italian feast comprised of garlic bread, olive oil asparagus, brown butter pasta, and a safe dessert of creme brulee (which I realize is not Italian). The group shopped together and I made sure everything was safe.
On our way back to Denver, we stopped by my parent’s house in Colorado Springs and grabbed lunch, which is always safe!
Winter Quarter Activities
This quarter has been quite busy; although I took one less class than I did in the fall, I filled my spare time with lots of activities.
I arranged an internship at the Colorado State Capitol, working for State Representative Pete Lee who represents downtown Colorado Springs. Rep. Lee and I had met at a previous dinner hosted by a mutual friend, and he had mentioned that I could intern for him during the legislative session! Since Colorado’s legislative session runs for only 5 months, it would be a perfect internship during the Winter & Spring quarters.
There isn’t any food involved, thankfully. The only food in Rep. Lee’s office is in a shared refrigerator, and it is composed of string cheese and Frappucinos. Since I typically intern in the mid-afternoon, I usually don’t bring food and I leave before I need to eat dinner. Even if there was an issue, I know the staff in the office would be superbly accommodating.
I’m also actively following HB 15-1232 in the CO State Legislature. The bill allows organizations other than schools to acquire and stock epinephrine auto-injectors. A food allergic child who is involved with such an organization must get a doctor to sign-off on a prescription allowing the stock epinephrine. It also requires those organizations to train its employees on the use of an epinephrine auto-injector. It’s exciting! It got through the House Health & Human Services committee and is now in House Appropriations for amendment-related information. It’ll be interesting to see if it passes or not!
Near the end of the quarter, I also helped out at the Boettcher Foundation’s annual Finalist interviews. The Boettcher Foundation is a Colorado-based non-profit that awards full-ride scholarships at any Colorado university to a select group of students who show strength in academics, leadership, service, and character. I was fortunate enough to be awarded a Boettcher Scholarship last year and I decided to volunteer my time this year!
The Foundation interviews 100 Finalists and must select 40 who receive the scholarship. Needless to say, it’s a rather stressful time for all of the Finalists. I volunteered to be a helper in the waiting area to calm down the nerves and just talk with all of the Finalists as they await to be interviewed.
I worked for almost 5 hours with all of the Finalists, from a little before noon until about 4:30. The Foundation provided lunch to all of the volunteers. The week before, I e-mailed the coordinator of the day and I asked her what food was going to be served. Stephanie, the coordinator, is already aware of my food allergies and is absolutely wonderful! The catering company made an entirely separate lunch that was safe for me and contained all kinds of safe food, like a salad, chips, and a sandwich with safe bread. Stephanie let me know this was happening beforehand and the moment I walked in the door she told me exactly where to find my lunch.
Food at the University of Denver
Winter Quarter was a host to a couple of different events.
To start off, the daily meals have been absolutely wonderful and stress-free. The dining halls always have safe options for breakfast and lunch and I can always find something tasty, somewhat healthy, and safe to eat. The typical breakfast includes fruit, hashbrowns, and sausage (with pancakes somedays).
There are a few exceptions to this. One night, it was Chinese New Year and the dining hall did decide to get a themed dinner going! Unfortunately, all the dishes either contained or cross-contaminated with dishes that contained one of my allergies (nuts and shellfish were the typical ingredients). I walked a minute north on campus to the other dining hall that provides a food court style of serving. They have an entirely safe Mexican option that is reminiscent of Chipotle. I got a safe quesadilla for that night and everything was good. I don’t know if I felt left out, but it certainly was unfortunate that I couldn’t eat with my friends for that night simply because of the options available.
Thankfully, DU is amazing in all other aspects. They have the Fritz Knoebel School of Hospitality Management that runs all of their social events, especially the dinners. For the entire year (there was an opening dinner with the Chancellor at the beginning of the year and a couple of interspersed events I got into that also provided dinner), they have been absolutely accommodating. When I RSVP for the event, I include information about my food allergies and I ask what they can do about it. Every time, they respond that “everything is handled!” and guaranteed, it is. For example, they handmade a salad for me so that it didn’t contain nuts (like the rest of them did).
Our Chancellor has office hours once a month and last month I stopped by to introduce myself and ask a couple of questions. Before I left, I mentioned to her about how great DU is with food allergies. She agreed! She comes from two east coast private universities and they did not accommodate food allergies well.
I’m off to another 10 weeks of school! Hopefully, nothing too exciting happens – food wise!
Many of you have probably seen the results of the LEAP (Learning Early About Peanut Allergy) study, which basically found that early introduction of peanuts into a baby’s diet can promote tolerance. According to The New England Journal of Medicine this study was supported by grants from the National Institute of Allergy and Infectious Diseases; Food Allergy Research and Education; the Medical Research Council and Asthma UK; the United Kingdom Department of Health; the National Peanut Board (emphasis added); and the United Kingdom Food Standards Agency. It was a follow up to findings that Israeli children who consumed a peanut snack called Bamba as infants had far fewer peanut allergies than Jewish children in the UK who didn’t eat Bamba.
Since the findings of the LEAP study have been released, I’ve been inundated with people, with good intentions no doubt, asking me “Did you see the study that said you should have been feeding your son peanuts?” For those of us parents of children with food allergies, those statements can make us cringe! This study has no bearing on those children who ALREADY have peanut allergies. And, in my opinion, there are a lot of other factors that weren’t taken into account with this study, despite how excited the medical community and the media appear to be.
My son, Morgan, would have likely been a candidate for this research. He was covered in eczema at a few months old, and likely would have tested positive for egg allergies as a small infant (we didn’t find out about his egg allergy until he was 15 months old and reacted to his MMR shot). He also could have been one of the children who reacted too violently to the peanut skin prick test (over a 4mm wheal) which would have limited his inclusion in the study. (We didn’t have a skin prick test completed for peanuts until he was 18 months old in 1997, and the allergist didn’t provide us the information about the wheal size – just that his peanut allergy skin test yielded a 4+.)
Looking back, had he been chosen to be a part of this study to eat peanuts, I would have had serious reservations. Based upon what I know today, I would certainly decline to ever feed my child peanuts when he already has eczema and an egg allergy. What concerns me about this research is the same concerns I have about Oral Immunotherapy. You can read my blog post, Food Allergies, Mast Cells & Hitting Your Threshold that outline those concerns. Yes, the researchers followed the children until the age of 5, but that is far from a mature, adult gut and immune system. And while they tested the IgE of all participants, high IgE is not the only indicator of having detrimentally affected the body. Eosinophilic Esophagitis and mast cell issues can be involved without a high IgE. There are many more bodily systems affected, and from what I have read, no endoscopy was performed on the subjects, so the inner workings of the gut were not looked at. The sinuses and lungs were also not looked at. What impact did eating peanuts have on those areas of the body? Having research that only looks at whether a child can consume peanuts doesn’t look at the impact on the body as a whole. Nothing in the study reported on findings in the atopic march.
Next, my concern is what about the multiple food allergies that my son has? If I were to have fed him peanuts, what impact would that have had on his “other” life threatening food allergies – tree nuts, sesame, fish and shellfish? We didn’t know about all of these other food allergies until Morgan aged and ate or came in contact with these other foods. In other words, a skin prick test at less than a year old may not reveal everything that’s going on in an infant’s body when looking at food allergies.
Lastly, feeding peanuts to a child with eczema and egg allergies SHOULD NOT be done without the consultation of a pediatric allergist. Parents with a Google MD degree don’t have the necessary information to safely embark on this study at home. If your child already is exhibiting allergic issues, see a specialist. Even the pediatrician may not have enough information to safely care for your child effectively.
There is an abundance of research trying to find a cure for food allergies. Because of the stomach issues in our family, mast cell disorders and EoE, we have chosen to seek out different healing arenas than eating what we’re allergic to.
About a year ago I began seeing a chiropractor that practices Network Spinal Analysis (NSA). For those of you who have read my blog for a while, you know that our family is very open to new modalities of healing AND we still see medical doctors too!
We have spent a lot of money seeing NAET specialists (see my write up on that here toward the bottom of the page), acupuncturists, chiropractors, Sacral Occipital Therapists, massage therapists…the list goes on and on. Many of these practitioners have provided temporary relief, at best. And the abundance of them have served only to lighten our wallet! I know that my son needs to have medication to manage his ocular allergies, his asthma and his nasal allergies; however, I’m always on the lookout for something that can assist his body to truly heal from these maladies.
My daughter and I have a mast cell disorder, and I was having severe lower back pain that wasn’t being helped by traditional chiropractic care. I decided to try something new and be the guinea pig in the family. It turns out that the mast cell disorder and the back pain were related, according to my new NSA chiropractic doctor. The more allergic reactions I was having, the more mast cell proliferation occurred. And the more mast cells, the more my back hurt. It was as if my spine was shutting down my entire nervous system in an attempt to protect me from myself!
Network Spinal Analysis works to utilize the energy in the spine to realign itself without the standard “cracking” of a chiropractic adjustment. The practitioner helps to point out where the energy is blocked, and gets the central nervous system to pay attention in an entirely new way. New neural pathways are opened up, and more energy is brought in to the spine, so that healing can occur. Within a few months, my back pain ceased, and almost a year later, my mast cells are beginning to behave better too.
Last summer, my son, Morgan, began seeing this NSA chiropractic doctor and almost immediately was able to go off of his Pulmicort steroid. I wasn’t sure that was a good idea until we went in to see the allergist and all of his breathing tests were normal!! He has had to use a rescue inhaler only once since then for a few days during a respiratory infection. He’s had no chest tightness, and feels great.
I really believe there is something to raising the energy in the body to create healing. Let’s face it, all the antihistamines and steroids are doing is helping with the symptoms. I really want my body, and my son’s body, to begin healing. Since Morgan and I had such good results with this new modality, my husband and daughter have also begun receiving entrainments (what the doctor calls the session). They too have had remarkable results with less body aches, better digestion and overall energy becoming higher.
There’s another line of thinking about accessing a higher energy through meditation to create healing. Dr. Joe Dispenza has written a book, “You Are the Placebo” that asks, “Is it possible to heal by thought alone—without drugs or surgery? The truth is that it happens more often than you might expect.” His book details scientific research where people have healed themselves, and where others have made themselves sick, simply by their thoughts and beliefs. I know that my mind is certainly powerful enough to create anxiety symptoms in my body. It’s powerful enough to create a stomach ache out of fear or worry. It’s also powerful enough to boost up my energy and overall capabilities to handle a crisis of one of my children, regardless of how I’m feeling physically in the moment.
I have begun to sit in meditation daily for the last 4 weeks, based upon the guided meditation provided in the book. I’ve already seen and felt a difference. I’ve been able to decrease the amount of medication that I take for my mast cell disorder! It’s mind blowing stuff, when you really think about it. Are our minds really powerful enough to heal our bodies? I am becoming a believer!
Ever since my son, Morgan, was a baby I’ve been obsessed about his health. I have a daughter five years older than Morgan, whose health I’ve also been concerned about at times, but never to the level of obsession that I’ve felt with Morgan. What is it about his health that creates these obsessive thoughts and behavior patterns in me?
If I analyze it (which I’m prone to do to try to find some missing tidbit of information that could help him!), I think that when Morgan got Respiratory Synctial Virus at 3 weeks old, I saw how much his health relied upon me ensuring that he got round the clock treatments of Albuterol and that he always had the oxygen canulas in his nose, even while I was breastfeeding him. This went on for 3 weeks, and it started my obsessive fear that if I did something wrong, my son’s health was going to suffer.
Once he was diagnosed with a peanut allergy at 9 months old, the health ante was raised. Now I was responsible for ensuring that he didn’t have any life threatening reactions to peanuts. I got a long list of items from our allergist that I needed to do to ensure that a reaction never occurred – read every label of every food every time he ate it, cook only safe foods in the house, make sure he didn’t touch anything he was allergic to…You get the point! You’ve been there too! If I wasn’t already tending toward obsessive/compulsive behavior, I’d have been put on the path with the doctor’s directions! Adding asthma to the mix in his toddler years once again upped the ante, and then adding more foods to his long list of severe allergies – tree nuts, sesame, fish and shellfish – raised my obsessive behaviors to a fever pitch.
Through the years, I’ve met so many mothers whose own health has deteriorated as they attempt to take care of a child with severe health needs. We parents of children with food allergies seem to suffer the most of any parents I’ve met. I think it’s because so much is riding on our ability to create a safe environment for our children at home, at school, with family and friends, at playdates – the list is endless. And research has shown that my anxiety about any of these issues can play out in my child’s emotional balance. Which means I need to be concerned about all of these life issues, but not anxious, fearful or worried! And that is so difficult.
If you read my son’s most recent blog post about his first quarter of college, you know that even with his excellent grades and heavy workload, he came home after having been sick throughout the previous 10 weeks to be diagnosed with mononucleosis. He was thankfully able to rest during the school break, which was 6 weeks long for him, and begin to get well. When he left to go back to college, he was by no means 100%. He’s still in need of an abundance of sleep, and just not fully energetic. This sets off an obsession of worry for me that he will overdo it, stay up late, volunteer for too many activities, and have another college quarter full of sicknesses. Or maybe he won’t be healthy enough to go to school at all! I’ve practically made myself sick with all my thoughts and scenarios.
I’ve heard men say that it’s a “Mom thing” to worry about our children and their health and safety. But what are we doing to our own health and peace of mind? Is it necessary to worry? Or would concern suffice?
I have an immune disorder – a mast cell proliferation in my gut – that definitely requires that I focus on my health. The ultimate fear for me with Morgan’s food allergies has been that I’ll do something wrong – serve him a food that will cause a fatal severe reaction, or that someone else will – and that has motivated this obsession with perfection in the area of food allergies. After all, our allergist has told us what he needs to be safe! I have all the data to show that I need to be this worried. Yet, me worrying about his health has taken away from my ability to focus on my own.
How can we parents of children with food allergies find a balance of safety without obsessing over our children? If you have an illness that also needs to be managed, how is that possible? I have a few ideas from what has worked for me –
1) I find it helpful to remember that there is a God and it’s not me. I can teach my son to always carry his EpiPen, to train others, to eat safely, and to take care of his health – that’s my footwork as a good parent. Then I get to turn the rest over to God or to whatever benevolent spirit you might believe in.
2) God has no grandchildren. Very similar to #1 above, but this reminds me that I’m not the go-between for everything that goes on in my children’s lives. My children get to have their own lessons in life, many of which have nothing to do with me. It was vitally necessary to teach Morgan how to advocate for himself, because I wasn’t going to be with him always, but it’s up to him to utilize that training now that he’s almost 19 years old!
3) I am responsible for taking care of my own health. As you hear on every airplane flight, “Put your own oxygen mask on first, and then assist your child.” In the book by Dr. Joe Dispenza called “You Are the Placebo”, he states, “You must observe and pay attention to those emotions that you’ve memorized and that you live by on a daily basis, and decide if living by those emotions over and over again is loving to you.” What better way to demonstrate to my children, who both have health issues, how to take care of themselves than for them to watch me on a daily basis take my medicines, watch what I eat, get enough sleep, and turn over those things outside of my purview.
4) I’ve ceased to expect perfection – from my son or from myself. Let’s face it, accidents happen. I’ve purchased foods from the grocery store that had an allergen in them (the box had a ‘may contain’ statement). I certainly didn’t mean to do it, and thankfully only a small reaction occurred. Another time, my son caught the mistake before he ate the food. This was a great learning lesson for everyone.
5) Forgive myself and others. Tying onto #4 above, I’m not going to be perfect, and when I’m not, I can apologize and then work on forgiving myself. Sometimes with other people’s lack of understanding of food allergies, I’ve had to work harder at forgiving them.
6) Practice the Serenity Prayer which is “God, grant me the Serenity to accept the things I cannot change; Courage to change the things I can; and the Wisdom to know the difference.” There are a lot of things I can and should do for my son’s health. Worrying about him isn’t about acceptance and it isn’t about courage either. Worrying is wasted energy. I look for what I can do, and do that. Now that he’s in college, I have far fewer things to be courageous to do for Morgan. The most courageous thing is to hold my tongue, and allow him to learn what he needs to learn in life at as young of an age as possible.
7) Talk with someone else. I have friends and mentors who have helped me through the years by listening to me recount situations, obsessions and worries. They listen, and by listening the burden is shared. Suddenly it doesn’t seem as big of a deal as it did when it was rolling around in my head. And many times I find alternative ways to look at the health issue that seemed insurmountable.
8) Stay in the here and now. Many times my obsessions are spawned out of fear of the future. I want to control what’s going to happen, and I want to make sure that my son is always safe. We did everything right to manage food allergies in college, and didn’t know that mono would be the tripping point. This shows me that I just need to do what’s in front of me to do, and the future will unfold as God sees fit.
9) Try to find the humor. If I’m not laughing at myself, I’m sure someone else is! After all, flapping my mother-bird wings is a sight to behold!
So, here’s to good health for all of us parents! Here’s to proper concern, and less obsessive thinking. I, for one, need to remember that daily!
The University of Denver (DU) runs on a quarter system: there are three 10-week quarters during the regular school year plus an optional summer quarter. I went up to school the last day of August for a week-long orientation at DU before classes began and I arrived home the week before Thanksgiving after successfully completing all my finals.
Before arriving at the school, we met with dining services to discuss food options (my mom wrote an entire blog post here about that visit). DU uses Sodexo as their food provider for their three different dining halls, convenience stores, and various cafes around the campus. In the past, I haven’t had extraordinary success with Sodexo; however, at DU, they are simply the best. When we originally visited, the executive chef at the local dining hall – Nelson Hall – had agreed that I could ask him anything about any of the food served, what it contained, and how it was prepared if I didn’t feel safe eating it. Needless to say, he and I have become really good friends. The dining hall has lots of good options for all meals: fruits & veggies are always available and safe flatbread/pizza is available for lunch & dinner. All the chefs are trained by the university on how to use an Epi-Pen as an extra precaution just in case something occurs.
A dining hall, only a little farther north on campus, has a food court-style service: there is a Greek option, an American option, a Mexican option, and an Asian option. The nice thing about this dining hall is that the menu never changes: they always offer the same food no matter when you arrive. More importantly, the Mexican option is 100% safe (after discussions with the executive chef at that dining hall) and the Greek option is safe as long as I don’t eat the pita bread. They also have “to-go” boxes so I can bring the food back to my dorm if I don’t want to eat it there.
Honestly, the food is working out superbly. I typically go grab the Mexican option for lunch in between classes and select one of the safe options at Nelson for breakfast and dinner. I always have friends around when I eat, which is great.
Classes are pretty difficult overall. I only had one 8am class this quarter and there was a surprising lack of food from students in the class. I decided not to tell any of my professors about my food allergies since I didn’t feel it was pertinent to my success as a student. Given that college is very individualistic, the expectation would be for me, and not for the professor, to ask someone not to eat a PB&J next to me. There was never any issue in any of the classrooms related to food. I kept a wary eye out in that 8am class just in case but the only potential “issue” I ever encountered was someone eating a Snickers on the other side of the classroom. I certainly was not worried.
I live on the Pioneer Leadership Program (PLP) floor at DU. PLP is a leadership program at DU that allows a student to obtain a minor in leadership studies. There are a lot of programs like this at different colleges around the nation; however, PLP is unique given that the students of the program live together on a floor in a dorm. Each year, PLP takes 66 new students and these 66 live together on the floor. They’re very driven, responsible, and intelligent students and it’s a blast to live with them! Our Residential Assistants (RAs) are older PLPers who know what the first year is like.
My roommate is phenomenal. He’s so understanding and we established from the get-go rules about food in the dorm: none of my food allergens in the room and if he eats anything that I would be allergic to, he just washes his hands. We have a refrigerator, but typically it’s stocked with caffeinated drinks, not food. We have pretty similar sleep schedules and personalities, so we get along super well. I feel super lucky to have such a good friend as a roommate (but honestly, I get along with everyone in PLP really well).
I applied before the beginning of the school year for an air conditioning unit that filters pollens out of the air to control my asthma; the university approved my accommodation. My roommate was definitely grateful for some cold air given we have windows that face the sun the majority of the day. This has helped immensely and I haven’t had any breathing problems.
I still carry two Epi-Pens and Benadryl in a Garmin case in my right pocket at all times. This is true when I eat, when I go to class, when I walk around the dorm, or really anytime I’m not sleeping. I also have a massive container under my bed with extra medication: Epi-Pens, albuterol, Pulmicort, Nasacort, etc. My roommate has a very similar tub under his. We constantly joke that we could run an underground pharmacy out of our dorm room if we wanted to.
As with any new living situations come new challenges: surprisingly, none of it involved my food allergies or asthma. My first quarter was plagued with sickness, instead.
The first week of class (of all weeks) I got superbly sick that I actually had to go home Wednesday through the weekend to recover. I had a nice combination of headaches, nausea, a fever, and exhaustion for quite a few days; while antibiotics knocked out the majority of my symptoms, I found out (through blood work) that I had an early infection of mono. Thankfully, I didn’t have any continuing symptoms.
I got a head cold halfway through the quarter and a stomach bug near the end of the quarter, and some close friends in PLP were happy to help supply (safe) chicken noodle soup to help me out. I made it through finals week and went home the week before Thanksgiving – the end of the 1st quarter.
The day before Thanksgiving, I woke up with swollen lymph nodes and was pretty tired. Through the weekend, I developed a fever, a superbly sore throat, and once again, I became absolutely exhausted. This time, it was a full blown “re-activated” infection of mono. I’m happily recovering after a week of antibiotics to combat a secondary infection of tonsillitis with plenty of rest, fluids, and reading. Thankfully, I’m home until the New Year so I have plenty of time to recuperate my health and prepare myself for the next quarter.
Certainly, I had more than a couple 2:30am mornings this quarter working on school or hanging out with friends. I think I might be limiting these next quarter to make sure my immune system can cope with everything.
If I had any one suggestion for college, it’s to talk to people. They are your best resources for your health, happiness, and sanity in school. When you’re sick, they can bring you fantastic chicken noodle soup. When you’re healthy, they can be excellent resources for studying, motivation, and even for a break every once in a while.
Overall, my first quarter was absolutely fantastic. College is a blast and I’m so grateful for all of the wonderful people at DU that make it a safe opportunity.
For those of us with children with food allergies, awakening in the middle of the night worrying about cupcakes isn’t that unusual! Of course, if you share that concern with your neighbors who don’t have to worry about unsafe food, they may not understand. Food allergy parents understand all too well!
My son started college in September, so I was surprised to find myself awake at 2 am one night recently worrying about our son, Morgan. We had worked really hard to create a safe eating experience for him in the dorm cafeteria, and it was working great. His roommate was more than understanding about not bringing in Morgan’s allergens into the dorm room. Everything was working well – why was I worrying?
Morgan was heading off on a weekend trip with his leadership class. Prior to him leaving for college, we had talked with the coordinator of the leadership class, and the fact that there would be an overnight trip to a cabin in the mountains. It was the night before this particular trip that I found myself awake concerned if he had contacted the chefs like the coordinator had said he could. I was more concerned that he was also bringing along his 2 extra EpiPens (he always carries 2 in his pocket, but I wanted to ensure he was going to be extra cautious)!
So I lay there wondering if Morgan would think I was crazy if I sent him a text at 2am asking him to please remember his 2 extra EpiPens. After 30 minutes, I no longer cared what he thought and went to find my phone to fire off a text to him. Funny thing – he wasn’t up in the middle of the night worried like I was!! In fact, he had already handled the conversation with the chefs and had packed the extra EpiPens – as per his text back to me at 7 am.
No matter what his age, and how many times he has taken care of himself – I’m still a Mom. After 18 years of monitoring his food, his environs and his safety, it’s very difficult to let go and allow Morgan to take the baton and manage his food allergies himself. He’s doing a great job!
Our son, Morgan, had a great first week of Orientation at the University of Denver (DU). Then, on the first day of classes, he began to get sick – really sick! He continued to have a fever and chills for two days. He knew to start up his Pulmicort inhaler immediately. We discussed the breathing difficulties the Enterovirus 68 creates for children and teens sending them to the ER and Intensive Care. Yet Morgan didn’t have any classic cold symptoms – no runny nose, no sneezing, and only a mild sore throat.
After two days of feeling awful, and missing a few classes in order to sleep, he called me, aka Mom. At that point, I suggested that he go to the Health Clinic on campus; however, it was almost 7 pm and the Clinic was closed. So, we talked and he decided to go to a local Urgent Care. He was feeling so poorly that he asked his roommate to drive him. The wait was over an hour, and the doctor didn’t know what he had. The strep test came back negative, and sadly even if Morgan has strep, the test always come back negative. The doctor prescribed a very strong antibiotic for him to take to kill off any bacteria in his system. He took the antibiotic, and then was up during the night vomiting it back up.
By the next morning, he was feeling so awful, that we talked about him coming home to see our family doctor that has known him his whole life. Once he got into this doctor’s office, his fever was almost 103. He had vomited during the drive home from college, and again in the doctor’s office after another strep test – which also turned out to be negative . Blood was taken to ensure he didn’t have mono, but it would likely come back negative because Morgan didn’t have symptoms long enough for the test to be accurate. The doctor gave him a antibiotic specific to kill off strep.
We also took Morgan to a chiropractor that our family has been seeing who utilizes Network Spinal Analysis (NSA) and Somato Respiratory Integration (SRI) in her practice. She is amazing when it comes to diagnosing the underlying issues that occur with our bodies – and not only the spine, but all illnesses. She determined that Morgan had a bacterial infection just by the way his liver was reacting. She gave him a treatment, plus had him soak his feet in a foot back with herbs. Between this treatment, and the antibiotic, Morgan was feeling much better the next day.
One day later, however, he broke out in a rash that covered his face, torso and chest. Morgan called back in to the family doctor, who thought it must be some type of virus, and the doctor suggested that he stop taking the antibiotic! In other words, he didn’t know what Morgan had either. Morgan has continued to get better, and has also continued to take the antibiotic.
I wanted to write a post about this because part of sending our children with food allergies off to college is the “hope” that they can take care of their own medical needs, or find a doctor that can assist. In addition to monitoring their food, training others on their EpiPen or Auvi-Q, and if they have asthma, being able to monitor that – they also need to know how to manage the current healthcare system! It’s a lot to take on at 18 years old. And it’s something to consider when sending your child with food allergies off to college where they go far away.
What would you do if your child got REALLY sick and they are 2000 miles away? We were really grateful that Morgan is only 60 miles away, and that we could pick him up and bring him home to see doctors who know him well. We also wanted to see him ourselves to determine just how sick he really was. He was home for 2 1/2 days, and slept most of the time. We took him back to school when he still had a rash, but was feeling much better.
What can you do to make sure that your child is ready to manage doctors in our healthcare system while away at college? Well, here’s what we did long before Morgan left for DU:
1) Have your child fill out all the doctor office’s paperwork each time you go in. We started this when Morgan was about 12 years old. Name, address, phone number is the basics!
2) Review with your child what medications they take, what time they take them and what strength. Every time Morgan visited the allergist, he had to write this down on the intake paperwork. It helped him to know exactly what meds he takes. He was very adept at this by high school age.
3) Have your child make an appointment with a doctor. This is especially important for them to practice when they aren’t feeling well. It’s really hard to deal with a doctor office phone tree when you’re healthy. When you’re sick and have to press a lot of numbers in order to make an appointment, it can be very frustrating. This is good to practice in high school.
4) Get a health insurance card for your child to keep in their wallet. When you go into a doctor’s office with your child, have them present the card. Your child needs to know if they will have to pay a copay or not. Who is responsible for the bill? Is it Mom or Dad that holds the insurance? All of these details are vital when they go off to college.
5) Decide who is going to ensure that medications that are taken get refills in a timely fashion (parents or student). Some insurance companies require that refills are obtained through mail order only. Which address do you want to use – home or college? Who is going to pay?
6) Decide if your child will give you access to their medical records once they turn 18. With the HIPAA (Health Insurance Portability and Accountability Act) laws, at the age of 18, your child has to either handle their medical situations themselves or to authorize you, as a parent, to have access to their medical records. Believe me, even trying to get a doctor to call your child back can be problematic if you aren’t signed on as an authorized party on the HIPAA paperwork!
Thankfully, Morgan knew what to do when he was sick, and he also knew when it was more than just a mild sickness and time to call home. We’re grateful that he learned what to do before he left home, and we’re especially grateful that he’s feeling almost back to normal now!
Our son, Morgan, started college at the University of Denver (DU) this week. What a step it is to let him go, to make his own decisions, to take care of himself in the dining room, and to teach whomever he wants to teach about administering his EpiPen! This is what we’ve worked toward since he was first diagnosed with food allergies. It’s likely that he will make decisions different than I would, or than his Dad would. That’s part of growing up and learning!
We had worked toward his first day of college with DU Administrators for a while. Morgan, my husband and I met with the Disability Services Office back in March when we toured the campus. We discussed what accommodations he would need – safe food, no allergens in his room (no peanuts, tree nuts, sesame, fish or shellfish), and an A/C unit in his dorm room to mitigate his asthma. They didn’t think any of these would be an issue, but required that we complete some paperwork to get the university to pay for his A/C unit. We were given contact names for the chefs at DU to personally speak with them, and it was up to Morgan to discuss his needs with his roommate. If there was an issue, he could then get ‘outside’ help.
We problem solved various scenarios with the Housing Office at DU what could work for Morgan to attend DU if he was unable to get dining services to provide safe meals, and/or unable to get the roommate situation worked out. One of the Housing Office’s student employees has food allergies, and she talked in detail with Morgan about how she was safely able to eat in the dorm, how she texted chefs about her meals, and never had any allergic reactions! That encouraged us, but we also wanted a back up plan. The Housing Office offered that he could live in a dorm that had a kitchen in between two rooms. He could then have an RA (Resident Advisor) living in the other room to lessen the need for education of his food allergies. (Normally 4 boys live in these rooms, 2 on each side). Morgan would then have to shop and cook for himself. His preference was to live in a ‘regular’ dorm room with the Pioneer Leadership Program (PLP) – a Living and Learning Community that he applied to participate with. His one roommate would be a boy within this program, and Morgan would therefore eat in a dining hall.
Morgan and I roll played a few scenarios: what would you do if a professor is eating one of your allergens? (His answer: probably nothing unless I had to shake a hand, and then I’d tell them.) Where is the nearest hospital? (He looked on a Google map to find one). What would you do if your roommate is eating one of your allergens? (His answer: Talk to him about it!) What would you do if you knowingly ate one of your allergens – accidentally – but didn’t have any symptoms? (His answer: give myself an EpiPen and then call 911).
Morgan had several conversations with the head chef at DU over the summer, and he felt confident that he could live in the PLP dorm and eat safely since the cafeteria already labeled all of the foods that they made, and all the chefs were trained on food allergy awareness. Morgan and I met with the chefs one week prior to the school year starting. I wrote about that in a blog post here.
Morgan received his roommate assignment in July and started Facebook conversations with the young man. They met for the first time a few weeks before school started in a coffee shop in our hometown when his roommate was visiting extended family. They talked for 3 1/2 hours, and Morgan came home and said he never mentioned food allergies! I almost wanted to step in and start a conversation about how important it is for his roommate to be aware of his food allergies! Instead, I decided that I needed to step back and let him manage it. Morgan did mention his food allergies in a text message (kids these days!!) a few days prior to showing up at DU. His roommates response was, “Darn, I was really planning on eating fish in the room!” Apparently, it was no big deal to him at all to keep Morgan’s allergens out of the room.
When we arrived at DU, carting wheelbarrows worth of clothes and accessories into Morgan’s dorm room, we found the newly purchased A/C unit in a box. After inspecting the unit, my husband determined that he hadn’t brought the proper tools to put it together. I called the Housing Office to ask if someone was able to put the unit together for us. Within 5 minutes, the director of Housing was in Morgan’s room introducing herself! She called maintenance who had the unit operating within the hour!! Amazingly quick work! Morgan has been sleeping in air conditioning ever since. His roommate’s mother was thrilled since hayfever was a common issue for her son. She was hoping his allergies get better too!
Morgan brought practice EpiPens with him to college, with plans to train his roommate and others in the PLP program. Several of the chefs we met are EpiPen trained. Morgan is also capable of administering the EpiPen to himself. This is something I have to let go of. Morgan has ALWAYS carried 2 EpiPens since he was in middle school. I trust him to properly care for himself by training others.
At lunch the first day, Morgan went and talked with his chef contact about what was safe to eat, and whether he needed anything specially made. My husband and I were at DU for three days of Parent Orientation, and also ate in the cafeteria with the students. I was thrilled that they had a microwave out in the dining area for me to heat up my special meals, and my husband was thrilled with the tasty food! Morgan has had no problems finding safe, healthy food at each meal. At the last lunch that we ate with Morgan before we departed, the chef came up to him and asked him, “Where were you at dinner last night?” Morgan told him that he ate at a different dorm cafeteria, to which the chef replied, “Here’s my cell number. Make sure to text me when you don’t eat here so that I know you’re okay!” How wonderful that was to hear!
This is just the start for us, but a very good start it was! It takes a good amount of planning to get your child with food allergies to college, but it can be done. It can be especially rewarding when the college is so well-informed and willing to provide excellent care!
We are down to counting the days until our son, Morgan, goes off to the University of Denver (DU) for college. Before he moves in, we wanted to meet with the chef at the dorm cafeteria to discuss food allergies and safely feeding Morgan. Morgan had spoken with the DU head chef when we visited DU back in March, before he had made a firm decision on where he was going to school. The chef had suggested contacting him via email a few weeks before the school year started to discuss menus. Morgan took the lead in this, and he arranged a meeting with the chef for today, before DU starts its Orientation Week over Labor Day weekend.
Instead of just meeting with the head chef, we also met with 4 other chefs responsible for the various dorm cafeterias across the campus! What a welcome sight that was to see so many individuals interested in food and in Morgan’s safety! DU uses Sodexho for their food service, but this is certainly a different type of Sodexho than I have run into in K-12 schools or camps.
At the chef meeting, we discussed what foods Morgan was allergic to – peanuts, tree nuts, sesame, fish and shellfish – and found out that one of the chefs has similar allergies. Wow! How comforting that is as a parent to know that a chef not only knows what cross contact is, but also knows all about an EpiPen, and reading labels. In fairness, all of the other chefs also knew about these items too, and were more than willing to provide specific brands of bread, which is one of the biggest issues we have in finding safe bread without cross contact of sesame and nuts. This means they will specially order, or go to the grocery store, to purchase two specific brands of bread that are sesame and nut-free (Pepperidge Farm Pumpernickel and Roman Meal) for Morgan.
All of the foods/dishes in the cafeteria are labelled. The chefs were more than willing to make a safe meal for Morgan should he feel that was more to his comfort level, especially when one of his allergens is on the menu. And he was asked to talk with them at the beginning of every meal to discuss options.
The chefs all have experience with multiple students with food allergies in the past, and are prepared for any type of food allergy. We discussed the onslaught of forthcoming students with food allergies, and their mantra over and over again was, “We just want to feed you what you want that’s safe.” How wonderful is that?!
Two of the cafeterias have similar layouts with a pizza bar, a salad bar, international dish, and grilled protein. One of the cafeterias is more of a Food Court style where students can take meals to go. Also, the library has a cafe with foods that students can purchase. On the DU campus, there is a Subway – which is safe for Morgan – and is covered under his meal plan. He has many options, and certainly shouldn’t go hungry!
We are thrilled that we feel great about sending Morgan off to college knowing that so many chefs are interested in his well-being. And Morgan is excited for this next opportunity!
My last high school-related adventure involved traveling to Kansas City for the National Speech & Debate Tournament, an event I had qualified to attend earlier this year.
Before we left, I gave a health care plan to my Speech & Debate coach that explains procedure for an anaphylactic reaction, my allergies, and has an array of information on who to contact. I trained my friends/teammates on EpiPens as well.
We left Sunday morning from Denver International Airport, flying Frontier to Kansas City. Frontier does serve food, but you have to pay for it (i.e. there are no complimentary drinks or food for most passengers). I asked the stewardess the moment I got on the plane if they served peanuts, and she replied, “You can certainly buy them.” I quickly assured her I wasn’t going to buy them due to a peanut allergy. Since the flying arrangements for this trip were made by the school, all six of us traveling to Kansas City got to sit together. This was important since peanuts could still be served on the flight to someone who was interested in buying them; that issue was mitigated since I was sitting with my friends.
After arriving to the hotel, it was about 1:00pm (an hour ahead from Denver), and we were pretty hungry, so we walked across the street to Panera Bread. Panera is notable for its homemade bread that is mostly all cooked together. I talked with the manager about some safe options (it differs by store on how they cook their bread), and settled on a simple grilled cheese for lunch. I had a salad at Panera for dinner, probably the far safer option due to the possibility of cross contamination. Weighing the information given though, I decided that the grilled cheese was safe since it was not cooked with nut breads and they have rigorous cleaning procedures.
Speech & Debate tournaments occur in high schools, middle schools, and sometimes (at Nationals) in elementary schools. In Overland Park, Kansas (where we were), they had dozens of different schools for the thousands of competitors, each dedicated to a specific event (like solo debate or humorous interpretation). We had our coach and two parents joining us with rented cars so they could go and buy safe food for us.
Breakfast was served at the hotel and there was a McDonalds across the parking lot for variety. I found out I could eat McDonald’s breakfast items after my California trip (read about it here). Lunch and dinner varied by days and locations (if we were at a different high school, we might eat something different).
To be honest, each day was about 17 hours (from 5:30am to 10:30pm), so I don’t remember exactly which days I ate what. Here’s a list of restaurants I did eat at:
Chipotle – this was for dinner (I believe) Tuesday evening. It’s a safe option for me and it’s a chain restaurant, meaning most (if not all) of its locations serve the same thing.
Applebee’s – another safe chain restaurant that was dinner the third night there.
Jimmy John’s – an easy, safe option for lunch sandwiches. The team got Chick-Fil-A, but my coach made sure that I got a safe option for food, and made arrangements for Jimmy John’s (she’s the best coach, by the way).
Potbelly Sandwiches – another option for lunch sandwiches. I hadn’t had Potbelly’s before, but I checked their website and called them up and talked with their manager about breads, sesame, and nuts. Everything was safe (besides their cookies) and it worked out great!
Kolache Factory – Kolaches are…dough balls that have filling like cheese & sausage, or pepperoni & mushrooms. Once again, I hadn’t had Kolache’s before, but I called ahead and talked with the owner about their procedures. The breads that do contain nuts are cooked entirely separate from the regular dough (at least at this location). I have to say, that was an AMAZING lunch – they were so good (and safe!)
El Fogon – a local Mexican cuisine restaurant we went to for lunch. Just like every other restaurant I hadn’t eaten at before, I called ahead. Notably, Mexican food is mainly safe, but various styles can include sesame and nuts. El Fogon did not use either in any dish or topping or side, which was great news! Even better, the food was absolutely delicious (I got a steak quesadilla)
Cinetopia’s Food Service – the last night we were in Kansas City, we went and saw a movie at the local movie theater. Unlike most, they have these “family rooms” with couches and reclining seats instead of the regular airpline-style seating. You also get to order food from their menu. I checked with the staff about their options and settled on another Mexican-style evening with nachos and a quesadilla.
Jack Stack BBQ – the crown jewel of our food adventures, Jack Stack has some of the best BBQ in Kansas City (if not the country). Barbecue sauce can be especially dangerous since some restaurants use peanut butter as a thickener and/or nuts as a spice. Jack Stack uses neither in their homemade, exquisite BBQ sauce. I have to admit, that was the best food we had all week!
Story of the Week: Due to its fame, Jack Stack’s is always pretty busy. Instead of dining in, we went over to their takeout side of the restaurant. While waiting for our food to be ready, we got in a nice conversation with a man who was picking up his own BBQ meal. Very genuine guy, who was interested in Speech & Debate and our interests. Right before leaving, he actually gave our coach $200 to spend on dinner for another night!! (We used it at the Cinetopia because, while their tickets aren’t that much more than normal, their food is abhorrently expensive). It was a very kind gesture.
This was the longest trip that I’ve been through where we haven’t brought/planned food. I had combined a list of possibly safe restaurants before the trip began and sent it to my coach (it included Jimmy John’s, Jack Stack’s, Chipotle, and Applebee’s). That helped dictate a few choices, but we also got recommendations from the locals (for El Fogon and the Kolache Factory, for instance).
Here’s a few tips on dealing with new restaurants:
Always talk to someone in charge. Servers are knowledgeable about the menu, not how the food is prepared. Find a manager or the owner or the chef and talk to them about food preparation and the process of cooking food. Also talk with them about ingredients.
Try and eat at “safe-cuisine” restaurants. Typically, Mexican cuisine is safer than, say, Asian cuisine for me (not only due to the use of shellfish & fish in Asian cuisine, but nuts as well). I’d automatically feel safer at a Mexican-style restaurant than an Asian-style restaurant.
Call ahead, if possible. Don’t waste your time at restaurants that aren’t safe. Call ahead and talk to someone in charge about food. If it turns out the restaurant is not safe, you didn’t waste your time and you can find another safe option.
There is always a risk. It’s really unavoidable – there is always a risk involved in eating new food. I ate at more new restaurants during Nationals than I had in the past 5 years combined! However, I felt safe and comfortable doing so.
The two-minute rule. That being said, I’m still cautious! This is a personal thing that I do: when I try food at a new restaurant, I take a small bite and wait two minutes before eating anything more. From my previous experience with anaphylaxis, my first symptoms occurred within the first two minutes after eating fish. I cautiously eat a second bite after the first two minutes and wait a little while longer. If nothing happens, I eat my meal entirely. If something does happen, I would immediately tell someone about it.
Nationals was one of the best experiences I have had – not only due to the intelligent and humorous people at the event, but also the safe food that was readily available. I also broke to Top 80 at Nationals in Lincoln-Douglas debate, a solo debate centered around values & ethics.
If you would like to view the National Tournament Highlight Video (published by the National Speech & Debate Association), click here. I make a cameo appearance at :49 (I’m in the background looking up. The camera isn’t focused on me). Plus, there’s a great music video at the end of it.
Some of you may think that you live in the best school district for managing food allergies. Some of you may think you live in the worst! For us, we KNOW we live in the best district! Many of you have heard me speak about how wonderful our district has been about providing 504 Plans, guidelines, policy and most of all care for food allergy students.
Since Morgan recently graduated, we thought it was time to give Academy School District 20 a formal thank you tonight by attending the school board meeting.
Here’s a part of what I shared:
Our story for tonight begins in 1999, when we began looking for a preschool for Morgan. No private preschool in Colorado Springs would accept him as a student because of his life threatening food allergies. They didn’t want to take on the liability. I was heartbroken, and I didn’t know where to turn.
I approached the District 20 preschool and explained his severe food allergies to the teacher, Miss Linda. When I explained that she would need to keep his allergens out of the classroom and learn to administer an EpiPen, she stated “That’s It?” I can’t tell you the relief I felt. Morgan enjoyed two years of preschool there before attending Foothills Elementary school for kindergarten. That’s when the real challenge began.
There have been so many teachers, counselors, school nurses, custodians, bus drivers and staff members who have been willing to learn about food allergies, and to help Morgan stay safe at school. It would be impossible to thank all of them, but we are so appreciative for how wonderful the D20 teachers and staff have been to keep Morgan safe and included.
There is one Administrator at the district level that we have to thank. The Director of Legal Relations has been instrumental with the creation and ongoing efforts of the Food Allergy Task Force which began in 2007. This committee has spawned similar groups in school districts across Colorado. The creation of guidelines for severely allergic students in our district was used as a basis for policy at the state level in 2009 when legislation was introduced and passed. District 20 has always been on the forefront in education, and your support for guidelines and policy to keep children with food allergies safe continues that stance.
Morgan never had an allergic reaction at school, and that was due to the incredible teachers, staff and administrators in District 20.
Here’s part of what Morgan shared:
I’d like to directly thank two individuals who are also here this evening.First, my elementary school counselor. When I first entered elementary school, there weren’t any procedures or policies to deal with food allergies. She had the foresight to put me on a 504 plan that provided accommodations for me to safely attend school and be included – a plan I kept even through my Senior year of high school.
Second, I would like to also thank my Principal at Foothills Elementary, for being my champion. She took a hard line and kept a strong policy with parents who didn’t want to abide by classroom accommodations, like an allergen-free classroom. Some of these parents, as I’m told, were particularly vicious, but she kept her stance that school needs to be safe for all children to attend, and I would like to thank her for that.
But finally, I would like to thank you, all of you. You have created one of the kindest, most open and accommodating school districts in the nation. I cannot express my gratitude for your willingness to help me and other food allergic students in this district. Many other children are not as fortunate to have such welcoming attitudes; they face obstacles on a day-to-day basis, and their parents fight teachers, principals, school boards, and even superintendents to keep kids safe.
Thank you. Genuinely, thank you for 15 wonderful years. I would not be standing here, a successful graduate of Air Academy High School without you all, teachers and administrators alike. I’ll be proud to represent Academy School District 20 at the University of Denver as a Boettcher Scholar in the fall.
Morgan and I had the pleasure of posing for a picture with Academy School District 20 Superintendent Mark Hatchell at the Board meeting. His leadership keeps more than 600 students with life threatening food allergies safe and included in the school district.
I hope that your experience with your child’s school and school district is as positive as ours has been!
A friend of ours says that God answers prayers in one of four ways:
and Beyond Your Wildest Dreams!
When my son, Morgan, started kindergarten in the Fall of 2001, I prayed every day when I dropped him off at school, “God, please take care of my boy!” It was such a part of my routine, and it helped me to be able to walk back home knowing I’d done everything that I could do to keep him safe, including a little prayer humbly asking for help.
What I didn’t know then is the many positive things that Morgan – and our family – have received because of his food allergies. It’s so easy to focus on all the hardships and issues that food allergies create. I don’t need to list those here, because if you’re reading this you no doubt know what those are! Back then, I couldn’t imagine what the future would look like for Morgan blazing the trail in our school district.
He was the first student to have multiple life threatening food allergies. He was also the first student to have a 504 Plan for his food allergies. An entirely new culture was going to have to be created in the school, and there were a lot of parents not happy about that!
Now that Morgan has just graduated from high school, I have been reflecting on his entire school career. Some of the good things that Morgan has received from his food allergies are:
Compassion for other children who manage an illness
A desire to read (at a young age) to be able to read food labels
A healthy lunch for school each day made by his Dad in elementary and middle school – usually with a positive hand-written note included
Learning how to advocate for himself in various situations, not just when it involves food
Close friendships created with kids across the USA by attending food allergy conferences
An ability to tell who really is his friend, because real friends care about keeping him safe
Great food at overnight camps since Mom packed his safe food
A healthier diet than most of his peers!
The ability to mentor younger children with food allergies
Learning that he is a REALLY good public speaker
Creating his own website design company (since working a minimum wage job at a restaurant wasn’t going to be preferable for money-making)
Another reason to say NO! to drugs and alcohol
A distinguishing element when he applied for college scholarships
It’s been quite a learning experience for him and for me to get him safely through school and to keep him included in activities. He went from preschool through high school in Academy School District 20 – fifteen years in all – without an allergic reaction. We certainly didn’t know that was possible when he began school. That result is beyond our wildest dreams and certainly an answered prayer!
In the Fall, he is off to the University of Denver (DU), where I’m sure he will continue to blaze a trail with food allergy advocacy. And I’ll bet that when my husband and I drop him off at his dorm, I’ll be saying a little prayer, “God, please take care of my boy!”
I’ve been asked recently to provide a checklist for preparing for college when you’re managing food allergies. We’ve had a lot of experience over the last 5 years preparing and getting both of our children (with different food issues) into college.
Our daughter, Michaela, has celiac disease (diagnosed in high school) and a mast cell disorder, which wasn’t diagnosed until college. She has a very limited diet with many intolerances and a wheat allergy too! Our son, Morgan, has life threatening food allergies to peanuts, tree nuts, sesame, fish and shellfish along with eczema, environmental allergies (pets and pollen) and mild asthma.
We’ve visited almost every college in Colorado, and a few outside of Colorado too. With all that experience, here’s a college checklist to assist your child with food allergies get prepared for college:
Take an accurate self-survey to determine how responsible you are with your food allergies and/or asthma:
Be honest – do you ALWAYS remember to carry your EpiPen/Auvi-Q? Can you train someone on the administration of your epinephrine autoinjector?
Do you remember to take your other medications (antihistamine, inhaler, etc.) without your parent(s) reminding you?
Are you willing to talk with a cafeteria worker about the seriousness of your food allergies?
Do you feel comfortable talking with a dorm roommate about your need for a safe living space?
Can you cook for yourself and shop for groceries if you’re going to live in an apartment?
If you can answer in the affirmative, you’re probably responsible enough to go away to college and appropriately manage your food allergies. If there’s still a few questions you’re concerned about, I’d suggest working toward that level of responsibility to ensure that your freshman year in college isn’t fraught with a trip (or two or three) to the ER.
In addition to my own children, I’ve communicated with dozens of young adults who are in college managing food allergies. Each of them finds a way to manage their own unique living situation along with their food allergies, yet several of them have experienced anaphylaxis while away at college. Having an EpiPen or Auvi-Q within reach is vital. Accidents do happen, so be prepared!
Get an idea of what you want to pursue academically
Food allergies aren’t the only thing you’ll be managing in college! Having an idea of what you want to major in will narrow down some of your choices for schools. We’ve learned that it’s expensive to pay application fees to multiple colleges, so it’s best to delve into the college website to see what degrees they offer.
If you have no idea what you want to major in, check out a local community college. Our daughter, Michaela, went to Pikes Peak Community College for two years and loved it. It allowed her to decide what she wanted to major in, and then she transferred to a 4-year university after completing her Associates Degree.
Are you ready to leave the safety of home?
How do you feel about going FAR away from home? Will you need to get an allergist nearby to help manage your allergies and/or asthma? Or would you rather your college be closer to home yet enable you to live on campus? Or do you prefer to live at home?
There are a lot of kids without food allergies that don’t do well thousands of miles from home. Others seek that special Ivy League degree, and are more than ready to be a far distance from home. If you have asthma, you might need to live in a dorm with air conditioning, or filtered air. Not all college dorms have air conditioning; therefore this issue may require discussions with the Disability Services Office (DSO) of the college and a letter from your allergist to get what you need from the Housing Office.
The 504 Plan from K-12 schools doesn’t follow you to college. Every college we’ve visited has stated that accommodations are available in college, however there is a whole new set of paperwork to complete, and documentation of the medical condition will be necessary for the DSO to authorize the accommodation. Many DSO’s aren’t yet up to date with their paperwork for food allergy accommodations. They generally deal with learning accommodations, so some patience and education may be necessary on your part.
At the age of 18, students are considered legal adults. Therefore, Mom & Dad won’t be negotiating accommodations – you will be! Know what you need to stay safe and healthy.
Visit the colleges/universities that interest you academically
These visits are vital we’ve found. Schools can look great or horrible if you only look at their website. Visiting in person gives you a whole different feel for the school. A visit also allows you to check out the dorm rooms and the cafeteria meal plans, meet the students and the professors, take a tour of the campus, check out the emergency procedures and ask LOTS of questions!
What is your ideal living situation in college? What is your ideal college academically? Can these two scenarios be found in one college?
We’ve found that it never hurts to ask for exactly what is wanted. If you want a chef to specially prepare your meals, ask if that can be done. Do you want to live in an apartment? Ask for that. First, you need to know what you’re comfortable with:
When visiting a college, here’s what we look for in relation to food allergies/asthma:
Are ingredients listed on all foods in the cafeteria? Is there a chef on site to take special orders? How many of your allergens are regularly served? Can you speak with a Dining Manager about your needs during your visit? How old are the dorms? Has there been any water damage? Are the dorms Air Conditioned?
If not, what documentation will be necessary to submit for a medical necessity to live in Air Conditioning?
Can the Resident Advisor be trained on the administration of an EpiPen/Auvi-Q?
Can roommates be selected to ensure no food allergens are in the dorm room?
Where is the nearest Emergency Room?
How is 911 handled on campus?
Is food allowed in the classrooms?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office?
Can you obtain that package of paperwork?
There are probably a dozen more questions to ask, but you get the idea that we are VERY thorough. We’ve found that talking directly to the person in charge while visiting the campus is vital. Take the time to set up personal meetings with everyone when you visit and pick up business cards to be able to follow up later. We’ve found that coming to campus with a list of questions generated from Mom/Dad and from the potential student is helpful.
Make a decision!
The best thing to know is that just because you’ve made a decision to attend a specific school, this is rarely set in stone. If things don’t go as planned, you can chalk it up to a learning experience and move on from there.
Our daughter, Michaela, lived at home for the first year and a half while attending the local community college. She wasn’t ready to live in an apartment, shop and cook for herself while trying to adjust to college academics. After 18 months, she was ready to move in to a room in a house she shared with a housemate. She transferred to the local University of Colorado at Colorado Springs, and graduated from there in May 2013. She has her own cooking utensils, cutting board, silverware and dishes. It has worked fairly well, although she has had to do a large amount of education and then remind her housemate when things are accidentally shared.
Our son, Morgan, has decided to attend the University of Denver (DU), where he is hoping to be able to get approval for a room air conditioning unit in his dorm room. The Disability Services Office will be reviewing his paperwork soon. He will eat in the cafeteria where the head dining manager has extensive experience preparing safe meals for students with food allergies. The students get assigned to one chef whom they can text message prior to each meal. Their meal is then prepared separate from everyone else’s. It’s a wonderful system that has worked well for other students managing food allergies! Should the air conditioned room not come through, Morgan will live in a dorm with A/C that also comes with a kitchen, which will be a nice backup. We feel very blessed that DU became a possibility for Morgan when he received a Boettcher Scholarship. It is a dream come true!
We hope that your dreams come true with the college of your choice that can keep you safe and healthy while enjoying a full college experience!
If your child has food allergies, it is vital that they begin, at a young age, to remember to bring their epinephrine autoinjector everywhere!
I had a conversation recently with a Food Allergy Mom whose 18 year old son is no longer remembering to bring his EpiPen with him when he leaves the house. She asked me what could she do? It brought up an interesting conversation about food allergies, safety and teenager’s brains.
Our son, Morgan, is extremely good about remembering his EpiPen. I think there are a few reasons for that:
1. Morgan well remembers his last anaphylactic reaction to fish when he was 10 years old. If your child was an infant when he experienced anaphylaxis, he may not remember what it felt like to have a severe allergic reaction. He may discount the likelihood of experiencing any type of reaction, especially if he says, “I’m not eating, so there’s no need to carry it.” Which leads us to the next reason…
2. Our family has specific safety rules. One of those rules is that he always carries his EpiPen on his person. We also have rules that require him to wear a helmet when biking, and wear a seat belt when riding in a car. If you stick with these rules, it’s easier for it to become a habit.
3. Morgan started carrying his EpiPen in a fanny pack when he was 4 years old. He got accustomed to being responsible for it. He wasn’t allowed to carry it at school until he was in 5th grade per the Colorado law. Once he was allowed to wear it in school, we checked each day that he had it on his belt loop. For a while he carried one EpiPen in a flashlight holder on his belt. Now, he carries two EpiPens in a Garmin GPS pack inside his pants pocket.
4. Morgan developed a system of stacking the items he needs each day. He stacks his cell phone, wallet and EpiPen pack on his desk so he always knows where they are when he’s preparing to leave the house.
5. We were willing to turn around and go home to pick up his EpiPens should they have been forgotten. That showed him how important they are. Also, when he first began to travel with his Speech/Debate team, I would ask for a gift: please show me that you have your EpiPens. It allowed me to stay a little calmer knowing that regardless of what occurred during his trip – at least he had his EpiPens!
6. My husband and I recognize that forgetting things is part of the teenage brain. He isn’t mature enough to realize the consequences of his actions. Therefore, it’s our job as parents to not allow him to engage in such risky activities where the consequence for his action far outweighs the oversight. In other words, if Morgan is caught speeding while driving, he will get a ticket. That is a reasonable consequence. If he forget his EpiPen, that could have life altering consequences. That’s too much of a consequence for a seemingly mild oversight. If Morgan wasn’t willing to carry his EpiPen, or was consistently/purposefully forgetting them, we would curtail his activities until he could prove he was responsible enough to properly care for himself.
As Morgan prepares to go to college, we have asked him to be completely responsible for all of his medications. Remembering to take his asthma medications daily will be vital for him to remain healthy at school. We still have about 6 more months to ingrain this in him! It is a process, but when moving out is tied to performing certain responsibilities, it’s amazing how remembering medications can become a priority.
With the Easter holiday coming soon, the topic of food allergies and buffets is surely to be on any food allergy family’s mind!
The picture above was taken when Morgan was 3 years old, and we ate out for the first time at a buffet for Easter. We really weren’t thinking of all the issues that could occur! Have you ever done something that is so risky and only realized it afterward? Well, that’s how that Easter meal was for us.
We looked around at all the food and determined what was safe for Morgan to eat by asking a few questions like, “Does this food contain peanuts?” Then we served it up for him to eat. We didn’t think about whether the serving utensil had been used to serve other foods. Or whether the food service employee even knew whether the food contained peanuts or not!
There was an abundance of shrimp, crab and lobster being served at that buffet – all on Morgan’s severe allergy list at that time. We just steered him clear of that area, but many family members ate that food.
Despite all of our risky behavior, Morgan had no reaction. However, we learned later that we were lucky. Since then, we have not eaten at a buffet at either a restaurant or at someone’s house.
We have learned the following about buffets:
If there is anything along the buffet line that contains your child’s allergen – it could also end up in foods that are safe for your child. Serving utensils are frequently shared!
Asking a chef for the details about the food ingredients and preparation is the only way to know what is in a food. We have found that buffet foods are frequently made by an army of individuals in hotels, for example. One employee is very unlikely to know everything about every buffet food item.
If your family members want to eat at a restaurant buffet for a special occasion, bring a safe meal for your child!
When eating at a buffet at someone’s home, we allow Morgan to serve his food first only from what we have cooked and brought ! We have never felt comfortable with him eating food that other people have prepared, no matter how well-meaning they are.
We recently attended a luncheon at a local university that was hosting scholarship interviewees and their parents. Morgan had emailed ahead of time to request a meal accommodation free of his allergens – peanuts, tree nuts, sesame, fish and shellfish. He never heard back from the kitchen staff about his request. Therefore, he asked me to bring him a safe lunch since he was interviewing all morning and didn’t want to bring a lunchbox to the interview!
As we entered the luncheon hall, the buffet appeared to have mostly safe foods for all of his allergens. There was salad, bread, spaghetti noodles, meatballs and vegetables. Morgan asked the kitchen manager about his safe meal request. Her response was, “Oh you wanted the nut free meal.” Well, that wasn’t the only allergen, but that was a place to start! She asked another employee to advise Morgan about what was safe for him to eat.
The employee stated, “don’t eat the salad because it has nuts in it.” Morgan said, “I’m also allergic to sesame.” The employee said, “then don’t eat the bread.” Morgan then said, “I’m also allergic to fish and shellfish,” and the employee responded, “better not eat the meatballs then!” By then, the entire meal was not edible. He pulled out his sack lunch and dove into a safe meal. Lesson learned!
When our son, Morgan, was 3 weeks old he was diagnosed with RSV – Respiratory Synctial Virus. It was a frightening illness that landed him in the hospital with oxygen necessary around the clock and nebulizer treatments every 4 hours. The illness lasted for three VERY LONG weeks. Thankfully, Morgan fought through the illness and still gained weight like a champ!
Nine months after this occurrence, Morgan touched a peanut butter sandwich, reacted with hives, and we were baptized into the food allergy world.
At 18 months old, Morgan got a horrible cold that got considerably worse during a blizzard that we had. (We are in Colorado, so blizzards aren’t uncommon occurrences). My mother was unable to get home from work, and stayed at our house that night. All through the night, I got up to check on Morgan and his breathing. I knew by the early morning hours that he needed to get to at least get to our doctor’s office. My Mother thought I was crazy. She was accustomed to letting kids just battle through illnesses. I had an instinct that something was clearly not right, and listening to my Mother could have had disastrous consequences. I got into the doctor’s office and we were able to thwart off the need for oxygen thankfully. Morgan was given a large prescription for nebulized albuterol to have on hand for any future similar occurrences.
Morgan continued to have bronchial spasms every time he got a cold, which was eventually diagnosed as mild asthma at about age 3. The impact of RSV, food allergies and asthma was much more problematic for me – aka Dr. Mom. I was forever scared that every sniffle was another major illness requiring an emergency room run. It was difficult to know when to get him immediately into the doctor and when to allow a virus to run its course.
Morgan also had strange reactions to illnesses. He would break out in hives during a virus, for example. Or he would be the only family member who didn’t get sick when everyone else was sharing the germs. I don’t understand everything with the immune system, yet I have learned that children with food allergies just don’t respond the same to illness that other children do. Either Morgan’s system goes way overboard, or he doesn’t react at all.
In the elementary school years, Morgan would want to stay home upon the first touch of an illness. Maybe he felt better at home – almost like he didn’t trust what his body was going to do and he’d rather be at home when something happens! Children at this age are sick so frequently, but I really felt better being able to watch over him.
As he aged into high school, he was more able to handle illness and go to school when he had a cold. And I’ve learned how to let go a little more and realize that not everything necessitates Dr. Mom’s hovering presence!
This past weekend was another one of those scary illness times. Morgan had been at a Speech/Debate tournament all afternoon Friday and into the evening until 11:30pm. He was up very early and back at the tournament by 7:30am Saturday morning. I didn’t see him Friday night or Saturday morning, but I had a sense that he was going to be getting sick. Call it Mom’s intuition. He’s been cramming a lot of activities into his schedule during his last semester of high school, and sleep is frequently missed.
He had 6 rounds in the tournament and he won every round, which no one else was able to do. This means that he will be going to the National Speech/Debate tournament in June. He was thrilled with his accomplishment and must have let out a large sigh of relief.
Then he called me and said that he was so sick that he didn’t think he could drive home. He had chills so bad that his teeth were chattering. I had no idea what illness he could have that was causing such dramatic symptoms so quickly! I drove over to the tournament, which was thankfully in our same city. My husband talked to Morgan about coming home and not staying for the awards’ ceremony. That was a big disappointment for him since he worked so hard, but we needed to get an assessment of what was going on and we wanted to keep the other participants healthy.
We took him to an Urgent Care facility. The doctor determined that it was possibly Strep Throat. Since Morgan had two college scholarship interviews occurring all day Monday (about 36 hours later!), we asked the doctor to put him on an antibiotic immediately even though the Strep Test came back negative. The doctor understood the situation, and graciously agreed!
Morgan slept for 16 hours, got up the next day feeling a little sluggish but knew that he was on the mend. The Strep Test never did show as positive, but the antibiotics worked and he was able to make it to the Scholarship Interviews early Monday morning.
I’m sure we will one day be able to laugh about this past weekend, but it was harrowing to watch him so sick and pale. We can add another crazy immune response to Morgan’s list of odd things – he never tests positive for a strep test even though he has the illness!
Hello everyone! I decided to update all of you with just one post covering both days given that a good portion of one was in Disneyland.
There is a McDonalds in the vicinity of the hotel, which makes getting breakfast easy. When planning, I was very surprised to find out that none of the foods that McDonalds serves at breakfast contain nuts (or any of my allergies).
I simply got pancakes and sausage and while it may not have been the most healthy breakfast, it certainly tasted good!!
After breakfast, my whole group went out to the President Nixon Library and Museum. It was a phenomenal experience!!
I got to see the old Marine/Army 1 (depending on the branch of the pilot) that President Nixon departed from his presidency in. I also had the chance to learn all about President Nixon’s life and successes. No food was allowed in the museum, so I didn’t have any problems.
After the Nixon museum, our group went to Disneyland! We were there from 1pm until midnight. I can say that I haven’t had that much fun in a very long time.
Food at Disney wasn’t hard at all. I stopped by and had some food at a Sandwich joint for lunch and balanced out some safe BBQ for dinner. I had simply asked about the sauce they use for their BBQ – they graciously provided ingredients for all of it. It was absolutely delicious!
Food is always a big issue when you’re at a theme park. But, what about carrying around your cell phone and EpiPens? If there is ever a problem, people need to be notified. I carried my EpiPens, cell phone, and wallet on me at all times. I didn’t leave them in a bag or put them in a locker.
Splash Mountain certainly made me a little wet, but my cell phone was fine and my EpiPens were stored in a Garmin case and remained in their waterproof case, as always.
I was thoroughly exhausted by midnight. It was a fun day – I even got to see the whole castle lit up!
I once again had breakfast (and included a delicious and completely unhealthy cinnamon melt) at McDonalds.
We visited the Museum of Tolerance. No pictures were allowed, so I can’t document anything from the museum, but I can say it was one of the best museums I have ever visited. It was enlightening and heavy, examining the consequences of our words and propaganda against another group of people. It specifically looked at the Holocaust, and I nearly came out in tears from one of the gas chambers.
After the Museum of Tolerance, we went to In-N-Out burger.
I have never eaten such a good burger. And fries. And milkshake. It was amazing fast food. Fast food burger joints are nefarious for their use of sesame seeds on buns. I had called ahead to the restaurant chain to make sure they didn’t use sesame on their buns – they didn’t. Their fries are also not cooked in peanut or sesame oil – another wonderful and tasty victory!
After In-N-Out, we visited President Reagan’s library and museum. That was an another awesome experience! We got to revisit Reagan’s life and successes along with the old Air Force One. That took the rest of the afternoon.
For dinner, we got to eat at restaurants in the vicinity of our hotel. I had checked before the trip, and there was an IHOP just down the block. IHOP is what I call a “pocket” restaurant – it’s always safe and I can just pull it out of my pocket as a safe backup.
I’ll post a final update tomorrow after my flight home! I’ll leave you with this awesome California sunset taken from President Reagan’s library.
To read Morgan’s other post about his Senior Class Trip on Friday, click here.
Hello everyone! I figured I would do a few updates throughout the trip just to keep all of you apprised with the day to day happenings.
With traveling, I believe planning is one of the most important things you can do. Before leaving, I charted out all the locations my group was going to and located safe places to eat. The teacher in charge is super detail oriented, so the itinerary we received was very detailed with times and locations. After calling the different places, including In-n-Out Burger, Rainforest Cafe, and a local pizzeria, I had my entire menu for the trip planned! As a note, the Rainforest cafe (and two other meals) take place inside Disneyland. Disney is renown for their ability to take care of food allergic children.
I also created a list of everything I would need to bring, including medications. This way, I make sure I have everything I’ll need (mind you, this trip is only 4 days so it wasn’t an extensive list).
For TSA, I removed ALL the liquid medications (like eye drops and nasal spray) and put them in the bag with my other liquids. This ensures I won’t hold up the line. I also always wear my MedicAlert bracelet, but that’s never been a problem with metal detectors. It never sets it off. I do remove my EpiPens in my pocket and set them in the bin to have them scanned.
Above is my boarding pass. When I fly Southwest, I typically have “PDA” printed on my boarding pass, which means “Peanut Dust Allergy.” This means that I can preboard the plane and wipe down the surrounding areas. (It also means I get to choose the best seats!) Thankfully, United doesn’t serve peanuts on their flights, so it wasn’t a problem for this trip.
I did bring a few snacks for the plane ride – NutriGrain bars, apple slices, and banana bread from home. If I were thirsty, I would have bought a soda near the gate for the flight.
The flight went excellently. There were no problems and I sat among friends so no one ate nuts.
After the flight, we immediately went to the beach! It was a great time. For lunch, I had pizza from a local pizzeria that I had checked with beforehand. It was delicious! I then went and played at the beach with friends for a few hours. There was a shellfish shop or two along the beach, but obviously I didn’t eat at them (nor my friends)!
We also met a seal (pictured above).
After the beach, we returned to the hotel to change and then went to dinner at Rainforest Cafe in Downtown Disney. I had called ahead and checked their menu to make sure there was a possibility for safe food.
When I arrived at Rainforest Cafe, I let the server know I had severe allergies right after I ordered my drink. She was super kind and immediately brought out the kitchen manager – a sort of combination between chef and manager. He asked what my food allergies were, took them down, wrote down my meal, and then specially prepared it (he even served it to me)!
The steak fajitas were delicious.
It was a wonderful Friday!! I’ll keep you updated about Saturday with journeys including Disneyland!!
To read Morgan’s post about his Senior Class Trip for the rest of the trip, click here.
The Senior Class Trip to Southern California is upon us! How do you help your teenager to manage their food allergies on a weekend trip? The better question might be – how do you help yourself manage your fear and anxiety while your teenager is on a weekend trip with the Senior Class?!
We’ve had years to prepare for such a trip, but now that the trip is this weekend – all that planning is followed by still more preparations to ensure Morgan’s safety. He’s very aware of what his food allergies are – peanuts, tree nuts, sesame, fish and shellfish – and he ALWAYS carries two EpiPens and a Chef Card for restaurants. He’s had a lot of practice eating out with his Forensics team; and he’s been on plenty of trips with our family and once to the Boy Scout National Jamboree with his Dad along for several days of that trip. This will be the first trip that he’s entirely on his own from start to finish. He’s almost 18 years old, so it’s probably time!
Morgan and I got all his trip paperwork completed by our allergist to allow him to take his medications with him and to carry his EpiPen and inhaler. Additionally, he has to take other meds for his asthma and environmental allergies. He been the manager of those meds recently, ensuring that he takes them every night. That feels good to have turned those over to him.
Our allergist signed off on a Health Care Plan for the trip that included what to do if Morgan goes into anaphylaxis. The chaperones on the trip, all teachers, have only been trained to call 911 after giving an EpiPen. If Morgan were to need to go to the ER in Southern California, someone will need to go with him in the ambulance AND someone will need to stay with him in the ER for 4-6 hours to ensure no biphasic reaction occurs. Morgan and I made a presentation to his chaperones last week at school to ensure they knew all the steps necessary to keep him safe. The teachers were so appreciative to know about the details of his food allergies, since they had a student last year experience a seizure on the trip and they had no medical information about the issue from the family.
Thankfully, the coordinator of the trip, the AP Government teacher, is VERY detailed. She has prepared an itinerary for the trip that includes the times and locations of every activity. This has allowed Morgan to look up the restaurants on the Internet, and to call the hotel to ensure that he can obtain a safe meal for breakfast. On the days when they will be able to eat at Disneyland, for example, or at any restaurant near the hotel, he’s had to do more research on the locations of the restaurants and their menus. I’ve had to communicate my need to know specifically what he’s going to eat and that he’s got a plan. Just saying, “I’ll handle it” doesn’t make Mom feel good!
Morgan is flying United Airlines which doesn’t serve peanuts. I plan on sending him with wet wipes so that he can wipe down his environment on the plane, which we always do when we fly. He’s trained many of his friends about allergic reactions and administering his EpiPen. He will bring EpiPen trainers to do so again. We’ve found that teenagers love to be trained and to practice with the trainers. Some scoundrels like to administer the trainer on their forehead, but I know the message is still getting through!
All of the students will be housed four to a room, boys with boys and girls with girls. The teacher in charge has already insured that Morgan knows all of his roommates and feels comfortable asking them to not bring any of his allergens into their room. Even if Morgan didn’t know them as well as he does, I feel sure he would be able to advocate for himself and have a safety zone in the room.
As for Mom…I will be sending him off with lots of love…and lots of instructions too: Make sure to take pictures and especially make sure to HAVE FUN!!
To read Morgan’s two posts about his Senior Class Trip – read them here and here.
There’s a new Food Allergy Organization that YOU want to join – FAACT – the Food Allergy & Anaphylaxis Connection Team. I’m so honored to be a part of this new organization with five other dynamic Food Allergy Advocates! Every one of us manages food allergies in our homes with at least one of our children. Every one of us has been a food allergy support group leader. We know what it’s like to live with the threat of anaphylaxis. We get it! That personal connection makes FAACT the organization that you want to become a part of.
Here is the press release for this great new non-profit organization. We intend to be your voice in the food allergy world!
Food Allergy & Anaphylaxis Connection Team (FAACT) Launched to educate and advocate for all individuals and families affected by food allergy and life-threatening anaphylaxis
Life-threatening food allergies affect more than 15 million Americans, including 6 million children
(West Chester, Ohio) A new nonprofit organization launched today is taking the American public and the food allergy community to a whole new level of support and compassion. The mission of the Food Allergy & Anaphylaxis Connection Team (FAACT) is to educate, advocate, and raise awareness for families and individuals affected by food allergies and life-threatening anaphylaxis. FAACT is the brain child of CEO Eleanor Garrow-Holding, who has created a team of top U.S. advocates and a world-renowned Medical Advisory Board.
Garrow-Holding provides leadership for all of FAACT’s initiatives and programs, including conferences across the country, education for school and restaurant staff, and statewide legislation and civil rights advocacy for students. FAACT will also grow the very successful Camp TAG (The Allergy Gang) – a summer camp for children with food allergies and their siblings that Garrow- Holding founded in 2009.
Among her work in the food allergy arena, Garrow-Holding served as vice president of education and outreach for the Food Allergy & Anaphylaxis Network for almost four years, where she presented at national and regional conferences about food allergy management in school and restaurant settings and educated personnel in schools and school districts across the country. She also advocated for the Food Allergy & Anaphylaxis Management Act (FAAMA) on Capitol Hill with her son and helped pioneer the School Access to Emergency Epinephrine Act that was recently signed into law by President Obama. She has been interviewed extensively by the media and has written for Allergic Living and Living Without magazines. She has also worked to increase food allergy awareness among staff at numerous food industry companies and entertainment venues, including McDonald’s Corporation, The Hain Celestial Group, Mars Chocolate North America, and all SeaWorld Parks.
“Many tragic and preventable deaths have occurred through the years from anaphylaxis,” says Garrow-Holding. “To think that a life can be lost simply by coming into contact with a food item is motivation in itself to arm and educate the community. Food allergy is a chronic illness and a life- long journey with social and economic challenges. FAACT will provide professional resources and guidance for families, peer-to-peer support, podcasts, webinars, restaurant and educational materials, civil rights advocacy, government relations, and so much more. We are linking our families to your families to ensure the safety for everyone affected by food allergies and anaphylaxis.”
By networking with other food allergy organizations, FAACT is also able to supply the most up-to- date resources and provide a more cohesive level of support to patients and families by some of the nation’s most dedicated advocates, all with personal connections to allergic disease.
The leadership base of FAACT includes civil rights attorney Amelia Smith Murphree, founder of “Food Allergic Children’s Education in Tupelo;” Karen Underwood Harris, president and founder at “Food Allergy Kids of Atlanta;” Thanita Glancey, president of the “Loudoun Allergy Network;” author Nicole Smith, president and CEO of “Allergic Child;” and Los Angeles media producer Yael Kozar, who leads “CA, Allergy Support & Anaphylaxis Prevention” and created “The Anaphylactic Allergy Podcast”.
If your house is like ours at holiday time – managing food allergies with the holiday meal creates stress. Stress for us means arguments about what is safe for our son to eat, and what isn’t safe. Inevitably these stressful situations occur with extended family coming to our house for a holiday meal where we have entrusted others in the family to make safe foods.
Our son, Morgan, is almost 18 years old, so managing holiday meals isn’t anything new. We’ve concluded that eating at our house is a must. Other family members have dogs, cats, and others who have since passed away, were smokers. This is a recipe for disaster for our son and his asthma and allergies. The holiday meal is therefore the big issue to conquer.
We’ve always agreed that Morgan doesn’t eat food made by anyone else. Too many times well-meaning friends or family have tried to bake birthday treats or provide safe snacks for our son at a party. Unless the food has a label on it, we’ve always agreed that Morgan says “no thank you” and he eats the food we provide. We don’t know how others prepare food or what precautions they take in their kitchen. How well do they wash their baking pans? Did the spatula also pick up peanut butter cookies? There’s so many chances for errors in even the most well-meaning friend or family member.
But when it comes to family, it gets dicey. We can’t always cook EVERYTHING for the extended family and our family. That’s a lot of cooking and a lot of money to provide that much food. So, we ask them to bring certain foods, with a long list of “don’ts” attached: don’t bring anything with his allergens (peanuts, tree nuts, sesame, fish or shellfish), don’t bring anything that says “manufactured in a facility…” with any of his allergens, don’t make food at home – make it at our house in front of us – if you want Morgan to eat it. It’s a lot for others who don’t have food allergies to understand why all of this is necessary.
It’s taken years of education and plenty of discussions, and more discussions, to explain the seriousness of food allergies, and what happens when a mistake occurs. Our extended family has gotten really good at understanding what’s necessary to keep Morgan safe. Yet, do they understand enough to cook for him?
That brings us to this year’s holiday meal and celebration, which occurred for us last night. My husband had been the communicator with his brother and the family. When there was a change in the main course from a turkey to a ham, I began to get frightened. I was feeling uncomfortable with Morgan eating the turkey to begin with because it was going to be cooked at THEIR house! Now, with a ham there’s the glaze ingredients to worry about. My husband and I began a discussion about the issue, and brought Morgan in to determine how to deal with this change of plans.
Then I had an AH-HA moment!
Why are my husband and I arguing over this? Morgan is old enough to be responsible for this issue. He eats out with his friends and can manage restaurants. Surely he can get on the phone with family members and negotiate a safe meal for himself. It’s time for my husband and I to take a step back from all this and allow Morgan to self-advocate.
The result? The ham was cooked at our house; Morgan prepared the glaze after reading the ingredients and everyone had a wonderful time!
For future celebrations, Morgan will be on the phone talking with family members about the meal prior to the day of the celebration. My husband and I can find something else to argue about 😉 and we promised to not second-guess Morgan’s decision about what he eats. It’s up to him to keep himself safe.
Problem solved with everyone in agreement. Amazing!
Nicole Smith is the Founder of AllergicChild.com and the author of three best-selling children’s books about food allergies. Allie the Allergic Elephant: A Children’s Story of Peanut Allergies was her first foray into writing. She is an almost-native of Colorado, and continues to speak and advocate for children with food allergies at the state level and in her school district’s Food Allergy Task Force, in addition to writing a blog about living with food allergies on AllergicChild.com.
Gina Clowes is an author, speaker and Master Certified Coach whose advice and parenting tips have appeared in numerous print, radio and television features including CNN, ABC World News Tonight and People Magazine. She is the author of the best-selling children’s book One of the Gang: Nurturing the Souls of Children with Food Allergies and writes a regular column The Parenting Coach for Allergic Living Magazine.
Children with food allergies don’t come with an instruction manual, so it probably wouldn’t surprise you to know that over the years we’ve received thousands of emails and phone calls from parents struggling to manage their child’s food allergies. As our allergic children are both teenagers now, we have the benefit of hindsight. We can easily spot common mistakes that parents make because we’ve made the exact same mistakes ourselves at one time or another.
If you’re like us, you’ve seen a lot of articles telling you what to do to help your child with food allergies at school, camp or on a sleepover. In this article, we’d like to try a different approach by outlining some of the most common mistakes that parents of food allergic children make. Our hope is that with a heads up and some advance warning, you can learn from our mistakes without the painful consequences.
Mistake #1: The Unprepared Parent
I really feel for the Mom who calls or emails me two weeks after school has started. She is likely to have a kindergarten student, and hasn’t done anything to prepare the school for her child’s allergies. Inevitably her child is contact allergic in addition to ingestion allergic, and therefore the child needs a number of accommodations. The school is overwhelmed and balking at everything she is requesting. This Mom is likely crying and overwhelmed herself. What did she do wrong? She didn’t prepare the previous spring before the school year started!
It’s unfair for a parent to expect a school/school district to be able to manage a child’s food allergies if they are informed on the first day of school! Lesson plans frequently need to be changed, epinephrine autoinjector training needs to be done…there are so many details that cannot be completed on the first day of school.
Some parents think that a passing conversation they had with the nurse at the kindergarten registration or with the principal months ago laid the foundation for a safe plan for their child.
Then they are devastated when they find out that the bus driver is not trained and their child is sitting alone at lunchtime or during classroom birthday celebrations. These parents expect their schools to be ready to accommodate allergic children but in many cases, they’re not.
Developing an individual written accommodation plan is one of the most important projects parents will ever manage. It takes planning, education and dedication to see this through. A great place to start is by reading the CDC Guidelines for Managing Food Allergies in Schools to learn about the recommended practices for parents and school administrators.
Mistake #2: Ineffective communication
Gina: Another issue I see with parents is that their communication style affects the process in a negative way. I’ve received emails that are 300 words long in one dense block of text. And even upon re-reading, I’m not sure what the parent wants or needs.
Before you open your laptop, know why you are emailing. Start with a concise request, and then fill in the details. Then re-read your message to make sure that the tone is appropriate and that your message is clear.
Nicole: I’ve found that I also need to read and re-read my emails to ensure that I’ve spelled everything correctly. Anaphylaxis needs to be communicated as a serious issue, and spelling it correctly – along with EpiPen, Benadryl, and Auvi-Q – are all important to ensure that school personnel get educated appropriately.
Mistake #3: Asking for too much
Nicole: When my son started kindergarten, our allergist wrote a letter to the school district 504 Administrator outlining exactly what he needed to remain safe in school. In our case, the main items were an allergen-free classroom and peanut and tree nut free zone in the lunchroom(figuring that most children wouldn’t be bringing in fish or sesame for lunch); and for kids to wash hands after lunch.
Had we asked for a peanut-free school without the medical support of our allergist, we would have been asking for too much. And in our son’s case, a peanut free school would do nothing for his tree nut, sesame, fish or shellfish allergies.
Gina: I am all for restricting food or allergens from the classroom, the learning environment, especially when there is a separate cafeteria. However, school-wide bans are often not a feasible food allergy management strategy especially when you are dealing with milk, wheat, or egg allergies.
If a district decided to manage food allergies with a school-wide ban for a peanut-allergic child, what would they do when they had a child who was severely allergic to milk and egg?
Would you ban a food for one child but not the other? Again, restricting food or allergens from the classroom is different and is an accommodation that can work well to foster inclusion and minimize risk of exposure.
Mistake #4: Taking on the burden of all accommodations yourself
Nicole: I made this mistake with my son at first. He was the first child with severe food allergies that our school district had ever educated. We were blazing a trail, and when the kindergarten classroom teacher wanted to hand out safe treats to all the students DAILY, I provided a safe snack for my son to have. I also provided safe cupcakes for birthday celebrations frozen in the school freezer for ‘just in case’ a party occurred! Today, I wouldn’t do that. I would ask that either all the students have no snack or I’d ask that every child get the same snack that would also be safe for my son.
Gina: What tends to happen is that teachers and other school officials think that when Johnny needs a treat due to an upcoming birthday celebration, it is his mother’s job to provide a safe one. When in reality, if the school is serving a free treat in class, there needs to be a free treat for Johnny as well, and it needs to be safe for him. For classroom parties and other school celebrations, schools are responsible for what is served in the classroom regardless of who bakes or buys it. This doesn’t mean that parents can’t send in “safe” treats for their child. This option should be available to parents, however it should not be a requirement.
Mistake #5: Disclosing Private Medical Information
Nicole: We probably disclosed too much when our son was in elementary school. We wanted for everyone to know about his food allergies so that he would be safe. The problem was that it backfired and our son ended up getting bullied because other boys knew where he was different. And kids being kids – they pounced on that! I’ve learned that it isn’t necessary to give all the parents, teachers and students the medical details about my son’s food allergies. Instead, it’s the school’s job to adhere to the 504 Plan and FERPA (Family Educational Rights and Privacy Act).
So, it’s not up to the parent to send out a letter stating, “my child has food allergies, please keep him safe.” The school needs to send out a letter stating, “we have students in kindergarten who have milk allergies, please refrain from sending in any food with dairy.” It’s best if this letter is signed by the school principal and/or school nurse.
Gina: Severe food allergies weren’t often recognized as a disability back then, so parents felt they needed to take on the entire burden themselves. They were trying to get classmates and other parents to understand in the hopes that they would protect the allergic child. They were asking for favors from the other parents to keep their child safe and included. I favor a more formal approach.
We don’t have wheelchair ramps, rails in bathrooms and handicap parking spaces because someone asked for a favor. Accommodations like these are made because they are the law.
It’s fine to educate all students about food allergies in general, and certainly kids can let their friends know about their allergies. However, in my experience appealing to classmates is not the most effective approach to keeping your child safe and included at school.
Mistake #6: Not understanding the law
Gina: This leads into the most serious mistake that parents can make- not understanding the laws as they pertain to severe allergies in school. When we have our first baby, we typically buy the book, subscribe to the magazines, and we read about the pacifiers, formulas and car seats. We acclimate to a whole new world. It’s a similar shift in reality when you have a child with food allergies, but some parents don’t buy the book, or read the reports.
Advocating for your allergic child in school is the most important job you will likely face. It is a huge undertaking that takes education and preparation. It’s a project. If you approach it casually, by chatting with this person and that person, by thinking you know the facts by comments you read on social media, you’re likely to start off on the wrong foot. When this happens, it’s difficult to right the ship.
There is a concept called “Sensitivity to Initial Conditions” and this means that subtle differences in the beginning can result in wildly different outcomes at the end. I’ve seen this play out time and again with parents and schools. Your initial contact with the school including the form and content of your communication, and your tone and demeanor lays the foundation for your relationship going forward.
Nicole: We were lucky that our school district understood the laws available to them in 2001 when our son started kindergarten. Additionally, my husband and I had an understanding that anything we agreed to with our school district needed to be in writing.
We relied on the 504 Plan and the Food Allergy Action Plan that were developed to keep our son safe and included. We started out on the right foot by having both of these plans prepared in the spring before he started kindergarten. The principal of the school and the school nurse together wrote the letter to kindergarten parents asking for none of our son’s allergens to ever be present in the classroom. This was met with much consternation on the part of several parents. Yet, these two school professionals took on our son’s medical condition with decisive action and kept my husband and I updated with any issues that they had to handle. It has been a partnership with the school district ever since between our family and the district staff. We had the law on our side, and thankfully a wonderful school district that was more than willing to abide by the law and to do anything necessary to keep our son safe and included.
When food allergy parents learn to advocate well for their child, they pave the way for every parent who comes after them. They makes it that much easier for the next parent and that much safer for the next child. Every conversation, every email, every EpiPen or Auvi-Q training is like a coat of paint that we apply and someday soon, we’ll have painted a whole new landscape: a world where food allergies are understood and accommodated everywhere.
It’s hard to believe that our son, Morgan, is a senior in high school already! The topic of college is coming up frequently in our house. We continue to learn more and more about what information and laws are available for students with food allergies in college.
The Food Allergy Research Education (FARE) website has minimal information on sending your child with food allergy to college. They have two pages of info here and here.
I can’t find anything about the Lesley University settlement and how it pertains to food allergic students from any of the major food allergy non-profit groups. The Lesley University settlement was initiated “around October 2009, <when> the United States Department of Justice (“United States”) received a complaint alleging that Lesley University (“Lesley” or the “University”) violated Title III of the Americans with Disabilities Act of 1990, 42 U.S.C. §§ 12181-12189 (“ADA”) by failing to make necessary reasonable modifications in policies, practices, and procedures to permit students with celiac disease and/or food allergies (collectively “food allergies”) to fully and equally enjoy the privileges, advantages, and accommodations of its food service and meal plan system.”
The University was requiring students to purchase a meal plan, yet the school had no way to safely feed the students. The Department of Justice determined that the University was in violation of the ADA (Americans with Disabilities Act) and mandated that they accommodate students on special diets. This settlement has implications for all colleges and universities, especially that celiac disease and food allergies can be considered a disability as defined by the ADA.
The National Foundation for Celiac Awareness has a great 2013 College Student Toolkit that explains the impact of the Lesley University settlement on students with celiac disease.
We’ve learned a few things in an attempt to find the ‘right college’ for Morgan. First off, he wanted a specific Engineering degree (Computer Science), so that helped him to narrow his choices. Then, we started visiting a few schools.
We learned that it’s important to contact the University/College Disability Services Office (or whatever that office is called at a particular school) as a starting point. The timing of this contact may be best AFTER the student is admitted into the school. We have found that dealing directly with the Housing and/or Dining Services office might yield incorrect/unlawful suggestions.
In other words, the Housing Manager at a Colorado school that we visited told our family that it wouldn’t be possible for our son to have a dorm room free of his allergens as a requirement/accommodation. My contact at the Office of Civil Rights stated that this is incorrect. A ‘reasonable accommodation’ (which is the standard that colleges are held to, not FAPE-Free Appropriate Public Education) would be an allergen-free dorm room.
You can also find out general information from the Housing and Dining Offices that would be pertinent to your child attending college: if cafeterias routinely post ingredient lists, whether their cafeteria workers receive any training about food allergies, whether the kitchen can accommodate special requests, if the dorm rooms have air conditioning (for students with asthma), whether refrigerators, microwaves or air purifiers are allowed in dorm rooms, whether freshman are allowed to live in an apartment rather a dorm. The list goes on and on – we know that there are specific items that Morgan wants in order to maintain his health and safety, and we asked each school our questions about the specifics.
We found that specifying accommodations is best left to the drafting of a written document with the Disability Service Office. Sadly, though, some of these offices have never dealt with a student with food allergies. You, the parent, and your child may be training them about what to do with food allergies.
Lastly, most Universities/Colleges that I’ve asked will not allow their staff/employees to administer an epinephrine autoinjector. Their only step is to call 911. The student will be either “on their own” or will have to rely upon training their friends to respond during an anaphylaxis episode. This is an important question to ask when you visit a college, and then determine how comfortable you and your child are with their answer!
Morgan has yet to decide where he’s going to attend college. We’ll keep you updated on his choice!
Kyle Dine is a food allergy educator and musician. He has performed allergy awareness assemblies at over 300 schools across North America and has two CDs of music for children with food allergies. Learn more at www.kyledine.com
Photo credit- Debbie Mitchell Photography
Hello Kyle. Thanks for your willingness to be interviewed by AllergicChild.com!Can you tell us what food allergies you manage and have you ever experienced anaphylaxis?
I am allergic to peanuts, tree nuts, eggs, fish, shellfish and mustard. I have unfortunately had many allergic reactions, however one stands out as the most serious anaphylactic reaction. I was 21 years old and was given a snack by someone I knew who told me it was okay. My instincts told me that the treat (a brownie) was a weird thing to be safe for me, however I ate it assuming it was made safe for me. It contained cashews and turned out to be an unfortunate accident due to a breakdown in communication. I learned a very valuable lesson that day in that you can never be too careful. I triple check anything I am unsure about, even food from friends or loved ones. It was a wake up call to say the least.
How old were you when you were diagnosed?
I have had allergies nearly all of my life starting at the age of two. I was initially allergic to dairy foods and outgrew it. I grew into my mustard allergy as a teenager strengthening my bond with ketchup!
How did you learn to advocate for yourself growing up?
I will admit that I had a difficult time advocating for myself. I was a very shy kid and allergies were not so prevalent at that time. I did not know anyone else that had an allergy. This often made me feel like I was a burden to others as I wasn’t so “simple” around mealtime as everyone else. I would ALWAYS carry my EpiPen with me and wore a MedicAlert bracelet. As I got older, my parents started getting my friends more involved, which really helped. They all knew how to use my EpiPen, and really supported me. It’s so much easier to ask about ingredients at restaurants and advocate for yourself when you know your friends have your back and know how serious an allergic reaction could be.
I’ve seen your posts about being on tour. Tell us about your Anaphyl-What? tour!
I firmly believe that ALL children should be educated about allergies at a young age. This helps them understand what they are all about and builds empathy towards those who have allergies. My current “Anaphyl-WHAT? Tour” will reach tens of thousands of kids at 45 schools in only two months. My assemblies raise allergy awareness in a fun way. My shows feature lots of songs, trivia, game shows, and my puppets EpiMan, EpiMan Jr. and Chef Allérgy. Kids learn a ton in 45 minutes and will transform how they view allergies. My latest tour really emphasizes the word “anaphylaxis” to let kids know how serious allergies can be, without making it scary. I am posting about my experiences while on tour on my Facebook page.
You’ve traveled to China. How did you manage that trip with your food allergies?
That is a full article in itself! I documented all of my preparations on my blog at http://foodallergiesrock.com/category/allergies-in-china/. In a nutshell, the trip was challenging. However, I love travelling and refuse to let my food allergies ever get in the way of that passion. My wife and I brought a full suitcase of safe food with us and bought an electric hot plate when we arrived. We cooked rice, pasta, chili and other dishes on the floor of our small hotel room. We ate out once and found a pizza place where they spoke English, but still used an Allergy Translation Card. I am not a foodie and don’t even care that I missed out on China’s food culture. I got to understand their culture on other levels through museums, temples, wandering the streets and practicing a few very basic Chinese phrases with locals. It was a trip of a lifetime!
Your wife has celiac disease. How do you each stay safe while cooking in the same kitchen?!
When we first started dating we thought it was so cool that we both had such dietary restrictions! We’ve had each other’s back for a long time now and do everything we can to keep each other safe. We are clean freaks with our kitchen! I eat wheat still (to help cut down on gluten-free grocery costs), but have a separate toaster and cutting board. She eats eggs, but uses a separate frying pan. She loves nutella, but only eats it when I’m gone on tour.
What advice/experience can you offer a child who’s tired of being different and doesn’t want food allergies anymore?
I had the same talk with my young cousin who was diagnosed with tree nut allergy a few years ago. I understand that it’s a downer to not be able to eat delicious looking foods, or be excluded because of an allergy. However, I really play up the fact that this one thing makes you so special and unique. Empowering a child over their allergies involves showing empathy when they are down, but also involves cheering for their successes. I tell children with allergies how proud I am of them for wearing their auto-injector and how cool their MedicAlert bracelet looks. I ask them how they stay safe in difficult situations and applaud their efforts. In essence, I try to make a child feel like they are part of something bigger. Although it’s isolating at times, kids with food allergies are part of a club of amazing children who are actively helping to take care of their own health at such a young age. That’s something to be proud of.
Do you have anything else you’d like to add?
Just as one tour ends, another one will begin this spring! I will be visiting many states across the U.S. throughout March, April and May. Please feel free to visit my website for more information and get in touch! I would love to help make a more allergy aware environment at your school!
Thank you Debbie for being willing to be interviewed by AllergicChild!
My honor and pleasure!
Your son has multiple food allergies. What allergies are you managing?
My 5-year-old son has life-threatening, anaphylactic allergies to dairy, eggs, peanuts, tree nuts, flax seeds, sesame seeds and shellfish.
It’s a big leap to go from being an accountant to a baker. Tell us about that transition.
The transition from accountant to baker took an alphabet’s worth of career moves from accountant to b-movie actress to comedienne to director of development to editor of a teen magazine all the way through zen yoga instructor.I won’t bore you with each job I had in between.
Then I started at a again to become an allergy-free baker when my son was diagnosed with allergies to almost everything in the USDA food pyramid. When I got involved with the food-allergic community, I realized there were millions of children in the United States alone that had these severe food allergies. I wanted to bake for them as well since I had already figured it all out for my son.
I see that you use unusual ingredients like Acai Berries and Coconut Nectar. Have you found that kids with food allergies have any trouble with these ingredients?
There is a misconception out there that a coconut is a tree nut because it grows on a tree and ends in n-u-t. But in fact, coconut is a drupe, or a one-seeded fruit. Therefore, if you have a tree nut allergy you can still eat coconut and all its derivations, including coconut nectar. Now, if you have a coconut allergy, and I know some people do, that is a totally separate issue. Acai berries are just like blueberries, but they come from Brazil. So if you’re not allergic to berries you should have no problem with acai berries.
Tell us more about your book “Sweet Debbie’s Organic Treats: Allergy-Free and Vegan Recipes from the Famous Los Angeles Bakery “
My cookbook contains all the recipes that I developed for my bakery, that took me years to develop, including those for cupcakes, cookies, brownies, muffins, energy bars, donut holes and breads. All of these are not only allergy-free, but also gluten-free and sugar-free as well. I developed them with the goal of making them highly nutritious as well. So there is a lot of information about the alimental values of all the ingredients and each recipe contains information about calories, carbs, sugars, etc. per serving. There’s a lot of humor in it as well. Remember, I was a comedienne when I was up to the c’s in my career choices.
You’ve been on tour recently. Do you attract more interest from the gluten-free, autism or food allergy community?
It seems there is usually a mix of people, most of whom have none of the above issues, believe it or not. They just want to learn how to bake healthfully. But, of course, there is an epidemic of people who need gluten-free items lately so I would say after the general population, gluten-free audiences are my biggest and then the food-allergic.
What are your hopes for your bakery?
I hope my bakery continues to thrive and make delectable and safe treats for everyone who wants a baked good, no matter what his or her allergy or intolerance.
Is there anything else you’d like to tell us?
My customers all know that they are not sacrificing taste or pleasure when eating Sweet Debbie’s treats, but sometimes I find there is a prejudice when people hear that everything is dairy-free, egg-free, nut-free, gluten-free, soy-free and sugar-free. They think it can’t possibly taste good. I’d like to dispel that myth because it is not only possible, it’s imperative, otherwise I wouldn’t be in business.
When our son, Morgan, was diagnosed with food allergies at 18 months old, I never thought that kissing my child could cause problems! Yet, if anyone has eaten their child’s food allergens and then given a cheek buss – well, you may be in for a big surprise! Even that minimal contact can cause an allergic reaction in a highly sensitive child. Passionate kissing can cause full blown anaphylaxis. So, it’s important to know the facts of what works with showing affection for your loved one after you’ve eaten their food allergen(s).
In 2006, Dr. Scott Sicherer of Mt. Sinai researched peanut allergen exposure through saliva. The research looked at how long the peanut protein remained in saliva. The protein is amazingly persistent, even after teeth brushing or chewing gum. The research conclusion was as follows: “Patients with peanut allergy require counseling regarding risks of kissing or sharing utensils, even if partners have brushed teeth or chewed gum. Advice to reduce risks, though not as ideal as total avoidance, includes waiting a few hours plus eating a peanut-free meal.”
Dr. Sicherer’s research did not involve cheek kissing or a “Grandma buss”. However I have heard from parents that their child has experienced welts, hives and/or a rash after receiving such a kiss when Grandma has just eaten the child’s food allergens. It’s vital to be cautious and for all family members to understand that even this small act of love can prove dangerous for a child with food allergies.
Once a child with food allergies becomes a teenager, that’s when the real fretting comes into play! I would encourage you and your teenager to speak with your allergist about this topic. This has also been a frequent topic at the Teen Summit. While it might be overwhelming for your teen to talk about kissing, keeping them safe supersedes potential embarrassment. When we spoke with Dr. Fleischer at National Jewish Health about kissing, he encouraged Morgan to have his date either not eat food that he’s allergic to or to eat another non-allergen meal and wait at least 2 hours after an allergy-laden meal. That could make for a very long date! Or, better yet, it makes for the necessity of having a conversation with his date prior to the day of the date.
Kids with Food Allergies has a great resource for Teens and Kissing here. The magazine, Allergic Living, has an article on the topic here.
I interviewed Sloane Miller, aka Allergic Girl, about her kissing experience that ended in anaphylaxis. Check out my interview here. Who would have thought that a beard would be the culprit!