Interview with Dr. Hemant Sharma

Dr. Hemant Sharma is the Associate Chief of the Division of Allergy and Immunology at Children’s National Medical Center in Washington, D.C.  He is also the Director of the Food Allergy Program and site director for the National Institutes of Health Allergy and Immunology fellowship program.  Dr. Sharma obtained his medical degree from Columbia University, and completed his pediatric residency and chief residency at Duke University.  He trained in allergy and immunology at Johns Hopkins, where he also completed a degree in clinical epidemiology.  He is a regular contributor to a food allergy column in Allergic Living magazine and recently co-edited the “Food Allergy in Children” series for Pediatric Clinics of North America.

Dr. Sharma, thank you for helping us to learn more about asthma and food allergies. Dr. Ruchi Gupta’s recent research found that nearly 8% of US children under 18 have food allergies. Do you know of recent research that has determined how many children with food allergies also have asthma? In your practice, how many children have both?

Food allergies and asthma often do occur together.  Prior studies suggest that more than a third of children with food allergies also have asthma, and up to 8% of asthmatic children have a food allergy.  It is not uncommon for us to see something called the “atopic (or allergic) march” in children, where they start out in infancy with food allergy and then go on to develop asthma and hay fever later in childhood.

My son had Respiratory Syncytial Virus (RSV) at 3 weeks old. We heard that this would make him more likely to have asthma. Is this true? Is there any relationship between RSV and food allergies?

RSV infection in infancy has been shown to be associated with a higher chance of developing asthma later in childhood.  Interestingly, wheezing with rhinovirus (the common cold virus) in early childhood is actually a much stronger risk factor for later asthma than RSV.  It’s not entirely clear if these viruses cause asthma or are simply predictors of childhood asthma.  There is not any evidence for a connection between RSV and food allergy.

Is asthma the same as “reactive airways”? Is it medicated the same?

The term “reactive airways” is often used by health care providers to describe wheezing in early childhood, when it may not yet be certain whether that wheezing will resolve over time or develop into chronic asthma.  One of the hallmarks of asthma is reactivity or “hyper responsiveness” to triggers, which can lead to tightening around the airways during a flare-up.   Both “reactive airways” and asthma may be treated with the same medications, for example bronchodilators like albuterol, which help relieve this tightening around the airways.

Is there a different protocol for your patients who have just food allergies versus those who have both food allergies and asthma? How about children who have the atopic trifecta: food allergies, asthma and eczema?

The management of food allergies is similar whether a child has food allergies alone, or accompanying asthma and/or eczema.  Food allergen triggers should be avoided, and in some cases, this may help to improve eczema control as well.  In addition, emergency medications to treat food-allergic reactions should be available at all times, including epinephrine, antihistamine, and, if a child has asthma, albuterol.  For children who have both food allergy and asthma, asthma symptoms might certainly be part of a food-allergic reaction, but they are usually not the only symptom observed.

My son has severe peanut & tree nut allergy – among several other foods – and mild asthma. I’ve read that two of the risk factors for fatal anaphylaxis are peanut or tree nut allergy and asthma. (The third being a delay in the administration of epinephrine). Why are peanut/nut allergy and asthma implicated with this higher risk of a fatality? What should my son be doing to mitigate this risk?

Certain foods, like peanuts and tree nuts, have been shown to be associated with a higher risk of fatal reactions.  The reasons are not entirely understood, but likely are related to unique biochemical properties of these allergens.  It is also important to note that fatal reactions have occurred to many foods other than nuts.  Asthma is another risk factor for fatal food allergy reactions.  This might be explained by delayed use of epinephrine since people with asthma might often reach first for their inhaler when they are experiencing breathing difficulty, and overlook other signs of anaphylaxis.  For patients with both food allergy and asthma who develop abrupt respiratory symptoms, it’s advised they assess whether other symptoms of anaphylaxis are being experienced, and if so treat immediately with epinephrine.

For years we thought that my son had outgrown his asthma. When we went to National Jewish Hospital a year ago, he had a Nitric Oxide test that our local allergist wasn’t able to administer in her office. We then found out he had likely had mild asthma all along and had gotten accustomed to a tight feeling in his chest. Our allergist’s testing methods weren’t refined enough to pick up the problem, and my son didn’t know he was having difficulties. Should we parents be looking for certain signs of asthma if our children have other allergy issues?

The most commonly used test to evaluate lung function in asthma is spirometry.  This form of lung function testing measures obstruction to air flow, usually before and after receiving a bronchodilator medicine, like albuterol.  Nitric oxide testing, instead of measuring obstruction, detects airway inflammation, which might be present in uncontrolled asthma.  While this test may provide useful information in some cases, it cannot by itself diagnose asthma, and is not a test that needs to be done for every child with asthma.  In fact, studies have not shown that using nitric oxide testing helps to improve asthma control, beyond relying on a thorough assessment of symptom frequency, need for albuterol and spirometry results.

There is more research recently to find a cure for food allergies. I’ve read that asthma kills 9 persons a day sadly, in the USA alone. What research is there to find a cure for asthma? Do you see any great new asthma medications on the horizon?

Research is also under way to identify new treatments for asthma.  Omalizumab (Xolair) is an example of a new asthma medication that has helped patients with severe allergic asthma, who failed to respond to other asthma treatments.  It functions by blocking the binding of the IgE antibody.  This medication is also being studied for potential use in food allergy.

Thank you Dr. Sharma!

 

 

 

 

 

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Food Allergies & Boy Scouts

Our son, Morgan, has been involved with Cub and Boy Scouts since he was a small boy. From the first year he began in Cub Scouts, he wanted to become an Eagle Scout. We knew this would take many years and many camp outs! That meant that food would have to be dealt with at Den meetings, and allergy awareness would have to be raised in the Troop when he crossed over to Boy Scouts.

When my husband, Bob, was a boy he participated in Boy Scouts, and he very much wanted Morgan to have the experience of Scouting.  Bob went to sign Morgan up for Cub Scouts and found out that snacks were a constant part of Den meetings, and most Den meetings in our area occurred in someone’s home. With Morgan’s multiple life threatening food allergies and pet allergies, it wasn’t going to work for him to participate at someone else’s home. Therefore, Bob became a Den Master! Food ceased to be a part of the Den Meetings, and the boys had a great time doing other Scouting activities.

Scouting has been a great bonding time for Bob and Morgan. I’ve done my best to be supportive of the two of them, but I’ve stayed out of any leadership position and never gone on any of the camping trips or “field trips” that the boys have taken.
It helped for Bob to be able to participate in all the activities and continue to increase awareness of food allergies. Many of the boys in the Cub Scout Den crossed over into the Boy Scout Troop. They and their families had heard about food allergies for years, and were so wonderful in helping to keep Morgan safe.

In Boy Scouts, Bob became an Assistant Scoutmaster. Again, this allowed him to participate as an adult leader and to continue to allow Morgan to become self-sufficient around food. Boy Scouts do a lot more activities than Cub Scouts, so the need for food allergy awareness became even greater.

Here’s what Morgan says about preparing his Boy Scout Troop for his food allergies:

The first Troop meeting I went to I presented to our PLC, or the Patrol Leaders’ Council, which is the team of boys that leads the Troop. It took about 15 minutes, and I explained what food allergies are, what my food allergies are, and how the Troop can help keep me safe. I made the same presentation to the entire troop a few meetings later, and they were very accepting. It was awesome!

For every camping trip we have, I sit down with the patrol I will be eating with and we plan a menu as a whole. I then, with my Dad or Mom and perhaps some other scouts, go and shop for the food that is safe for me. People, even though they say they do, don’t understand food allergies and the risk cross-contamination is, especially on a camp out. There has been only one camp out, out of 5 years (almost 40 camping trips), that has been an issue, and it was only a miscommunication with a parent, who went and tried to buy safe food. In that case, I did bring my own, safe food, but I still participated in the camp out just like any other boy.

My husband, Bob, has even more ideas for how to keep your son safe in Boy Scouts:

I hope I can shed some light on managing food allergies from an Assistant Scoutmaster’s perspective. I have been in Boy Scouts for over 5  years and 3 1/2 years in Cub Scouts. I was also a Life Scout as a youth. You will come into challenges as most of the adults do not understand food allergies nor do they understand the true ramifications of what can happen to a Boy Scout if he were to ingest or come near certain allergens.

Every situation is different but my experience is the best tool I have at my disposal,  as well as education. The more educated they are about Food Allergies the more support you will receive. Most Scout parents all want to help, they just don’t know what to do.  I will share my experience as to Troop food from an adult’s perspective.  It is my experience in our Troop, the patrols set their menus. If Morgan happens to be that patrol leader, they are well aware in creating safe menus of no nuts, no peanuts, food made with any sesame, shellfish or fish.  Heck most of them would live on Pop Tarts and Mountain Dew if we let them, but we help them to insure they are making complete balanced meals as outlined in the Boy Scout Handbook.

It helps them attain rank advancement and they are required to plan a meal and cook a meal for their entire patrol. Morgan is the one that usually buys the food for a campout so he can read the labels of the food he is buying for the patrol. (They all pitch in the monies equally) This affords him to feel safe and empowered by being able to advocate for himself with the knowledge that what he is going to eat will be safe.  We make sure he gets to shop or he brings his own food when we backpack. Also even though other parents think they will buy the right foods, the problem is many times we have found that manufacturers change ingredients and do not tell anyone and the food now is not safe.

Other parents’ intentions are right, but their lack of knowledge is something they don’t know. In Scouting nuts can be a big factor because when you are backpacking or camping, most boys bring trail mix. They know not to sit near Morgan when they eat it and to wash their hands after, but they are aware to keep Morgan safe. Most of the boys (50+ in our Troop) are very supportive of Morgan and they work hard on informing him if they are eating nuts or something that he is allergic to. This works well.

Lastly, the only other thing you have to watch for is cross contamination. If you ever looked at a stove when a “Boy Scout” got done cooking, the HazMat team should be called in to clean it! In all seriousness, if someone is using a spatula from one pan and it goes in another, Morgan knows not to eat any of it, unless he knows ALL the food is safe.

Scouts and their parents are very supportive of Morgan with his allergies. It also helps now that Morgan is 16 years old, an Eagle Scout and a junior assistant scoutmaster in addition to being a good leader. They listen to him more. Morgan had always been a good leader in helping younger scouts achieve things, which is why I believe he gets a lot of respect from both the boys and the adult leadership team.

In terms of Boy Scout camps, such as Camp Alexander near us in the Rocky Mountains or the National Jamboree that Morgan attended in 2010 at Fort AP Hill in Virginia, a different set of issues are presented.

Even though Morgan has had contact reactions with his food allergens – especially fish and peanuts – we did not ever ask that none of these foods be served at the Camp. Instead, we figured out a way to prepare safe foods for him to bring with him to camp and made the EMT’s at the camp aware of his severe food allergies. With the great outdoors, he has never had a problem with contact reactions at a Scout Camp.

When Morgan attended Camp Alexander, he did so with his Dad for a few of the campouts. Then, he also attended the Camp on his own for a week. We always prepared all of his food at home and brought it to the Camp either frozen or refrigerated along with a “dry foods” bag. Then, Morgan prepared index cards of each specific item he would eat on each day and each meal. For example,

Monday Breakfast

Waffles & Syrup
Turkey Sausage
Banana
Orange Juice

We would discuss cross contamination and safe food preparation with the kitchen staff when we dropped Morgan off for camp. Most of the time, the camp staff would prepare his meal based upon his index cards, even heating it up in a microwave for him. The only time we ever had an issue was when Morgan ran out of food the night before he was to come home from camp. The chef prepared him more broccoli to eat with dinner, and he soon got a stomach ache after eating it. He was taken to the medic tent who gave him Benadryl because no breathing problems were evident, and he soon got better. We never figured out why broccoli would have made him feel sick, but chalked it up to either nerves on his part or lack or complete cleaning on the part of the kitchen staff. From that time on, I sent WAY more food than I thought he could eat in a week, so we never had to deal with that again!

When Morgan went to the National Jamboree in 2010 along with 42,000 other Boy Scouts and Scout Leaders, the preparation of food was much more difficult. We live in Colorado, and the National Jamboree was in Virginia. It would be impossible to send all the food for 10 days worth of camp prepared at home and shipped across the USA.

This time, my husband went out to Virginia on an airplane, rented a small hotel room with a kitchen, and prepared all of Morgan’s food. He then carted in 5 days worth of the food during the Jamboree, and did so again 5 days later. Their kitchen facilities were accommodating and kept the food refrigerated.
Since Bob was an assistant Scoutmaster, he was allowed to be at the Jamboree to do such. Many of the boys LOVED the food that Morgan ate, and thought it looked much better than the food they were eating! He became very popular during those 10 days for his Dad’s wonderful cooking!!
If your son wants to participate in Boy Scouts, I would encourage parental participation, especially on the part of Dad. It’s a great way to spend time with your son, and it also allows Dad to be part of the food allergy solution without your son feeling you’re hanging over him.

Bob and Morgan hoped to attend Philmont Scout Ranch, a Boy Scout high adventure camp that involves 12 days of backpacking through northern New Mexico. Morgan planned on bringing safe freeze dried food since no refrigeration is possible. However when the Philmont menu came out, it was clear that peanuts and tree nuts were to be served at EVERY meal – in granola, cookies, or just stand alone packets of salted nuts. The fact that every participant would be eating these foods (other than Morgan) made it virtually impossible for Morgan to let down his guard and enjoy the camp. Therefore, Bob and Morgan decided to go on their own, private hiking trip where this issue wasn’t involved!

 

 

 

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Food Allergies, School & a Tragedy

Sending your child off to school for the first time is difficult for most parents. When your child has food allergies, there can be even more anxiety. Then, hearing about the death of a 7 year old girl at school in Virginia can tip the anxiety over the top! The details around the sad, tragic death of first grade student, Ammaria Johnson, may never be fully known. (Click here for more info about this tragedy.) What is known is that Ammaria never received epinephrine at her school. Her Mom had authorized an Allergy Action Plan, but it appears to not have been followed. With good preparation and communication, your child with food allergies can be safe at school. As parents, there is a lot we can do to avert such a tragedy.

I’ve heard from many parents after this sad story hit the news. Many were concerned that no school could ever keep their child safe. There’s a lot to be learned from this situation. It’s my experience that children with food allergies can go to school AND can stay safe and be included! Here’s what we have found to work from preschool into high school.

Before the first day of school, every one of our son’s teachers has read his 504 Plan and Health Care Plan. They know what to do to decrease the chances of him coming into contact with his allergens in their classroom and the lunchroom. They also have been trained  how to administer his EpiPen.

  • We provided multiple EpiPens to the school for the classroom, nurse’s office and playground monitor prior to our son being able to self-carry his medicine.
  • We made sure our son, Morgan, knew exactly what he was allergic to. He wears a MedicAlert bracelet that details this also.
  • We had an agreement that he ate only food that Mom or Dad packed for him or brought to school (for a party) when he was in elementary and middle school. He never purchased the school lunch or anything from a vending machine.
  • Morgan, my husband and I educated his friends about his food allergies through classroom presentations and Cub Scout/Boy Scout meetings. Books like Allie the Allergic Elephant were read to the class so that his classmates could learn what an allergic reaction looked like and what symptoms could occur.
  • We keep communicating …with the Principal, teachers, custodians, bus drivers, etc…education about food allergies isn’t a onetime shot. It needs to be brought up over and over again. And when the conversation does occur, we focus on being kind about the message that we all want to keep Morgan safe!

It doesn’t have to be complicated, but that doesn’t mean it’s easy! It does take a lot of preparation and communication with the school to keep your child safe.

Accidents do occur, so talk to your child about what they would do if someone offered them a food. Roll play situations. What would they do if someone sat in their allergen free zone in the cafeteria? Help them with options and solutions. What if someone teased them? Help your child learn how to become a good self-advocate.

Morgan’s friends watched out for him because they knew about his food allergies. We never kept his allergies a secret, and that has continued to work for us as he has aged into a teenager.

For those of you with children entering preschool or kindergarten in the Fall – it’s not too early to begin discussions with the school of your choice. Check out our e-book on Food Allergies & Schools and our Nut Free Zone posters to help raise awareness!

 

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Inhalant dairy allergies & a creative solution – a robot!

Below is an interview with Lauren & her Mom, Melissa. Lauren’s inhalant dairy allergies forced a creative solution with going to school!

Lauren – can you tell me how old you are and what your allergies are? 

I am 14 years old and I’m allergic to all forms of dairy including goat milk.

Have you ever gone into anaphylaxis?

I have been in anaphylaxis over 40 times. If my EpiPen wears off I need more EpiPen before I reach the hospital. Sometimes I only need one EpiPen if it’s just a little contamination, but many times I need at least two EpiPens and then more meds at the hospital. If I do not take my EpiPen immediately I get VERY sick. In the last few years I have gotten better about taking my Epi right away and this helps me not get as sick as I used to get.

One time I swallowed a bite of cheese without knowing it was “real” cheese ( I thought it was my soy cheese that I always eat) and my throat hurt immediately, then I got a blister on my lip and then I got red all over my body like a sunburn. I was throwing up and felt very sleepy. I started wheezing. I began getting hives that burned all over. I was screaming that my back burned. All of this happened in minutes, and got worse until we arrived at the hospital. My parents said my eyes rolled in back of my head in the trauma room. They said the doctors were very helpful and knew exactly how to help me. I fell asleep. When I woke up I felt better and we spent two nights in the pediatric intensive care unit.

Tell me about your robot. How does it work? Can you see the students and teachers as you sit at home?

The Vgo works like Skype on wheels. I log on at home and then I drive my Vgo to class from home. I can see the teacher and the students, and can even work on group projects together or with a partner. If I want to raise my hand I press a key on my keyboard and a light on the robot flashes so the teacher can call on me.

How did you feel about your safety at school with your food allergies before getting your robot? And now?

I was always worried about what was going to happen to me that day…would the ambulance have to come to school again? Would I be careful enough? And now that I go to school with this robot I feel safer BUT I still want to go to school.

Do you participate in extra-curricular activities like sports, clubs or dances?

I have done field hockey this year but I have to make sure I’m wiping everything down and I can’t go on the bus to away games and I can’t be around their snacks and I can’t do food events with them. I’m in karate also. I also am involved volunteering at the hospital and other philanthropies around my town that are safe. I also volunteer at our church (but I can only do certain jobs that are safe.)

How do you socialize with your friends?

When my friends come over they need to be sure and wash up and don’t have it on their clothes. When they come in and they don’t eat obvious dairy before they see me (like pizza cheese doodles or Doritos). Sometimes I go to other friends houses if they clean before I come. Sometimes I go places with them if there is a low risk of contamination while I’m at a place. But there is a high risk with most things. I try not to take high risks.

Melissa – when did you know that Lauren was no longer safe at school and that something needed to change?

We knew that Lauren was no longer safe in school when she went to one of her classes and walked into the room after they had a pizza party and her throat began to hurt. The teacher washed down everything correctly but it was still airborne and enough was still around to cause a significant reaction.  She took her EpiPen, the ambulance came and took her to the hospital and she was on steroids for a week that time.

Did Lauren have a 504 Plan and Health Care Plan prior to having the robot?

Yes she did, we felt that it was important to have a 504 & a Health Care Plan , but our needs became above and beyond what the school could handle. To keep her safe at school would mean to eliminate dairy. Also when she has a reaction she needs to take epinephrine immediately or she becomes way too sick. We could not take the chance that she would not get medicine immediately. Also her doctor said we should take her out of school before something happens that we can’t “get back” from.

How did you get the school to pay for the robot?

Lauren’s home bound supervisor was working hard on finding a way for Lauren to attend school safely. This past summer he was reading “Sports Illustrated” and read a story about a boy in Texas who went to school using a robot. He thought that this robot would be the safest way for Lauren to get to go to school. He went to the Asst. Superintendent to ask for her support to let him try this “robot” out with Lauren. He purchased the unit out of his home bound budget. His concern was having Lauren spend her freshman year in school.

What do you hope for Lauren as she ages through high school and goes into college and beyond?

Lauren wants to work, go to college, become a forensic scientist, get married and start her own family. Our hope is to find ways to keep her safe through living out all of her dreams.

Is there any hope for her dairy allergy to lessen?

Our hopes for Lauren is that the Chinese herbal treatment that she is on (from Dr. Li at Mt. Sinai Hospital in NY) will work! First the hope is that she will stop reacting from inhaled dairy, and then of course we wait for the day of the cure. In the mean time we continue to remind her to wash hands, keep her hands out of her mouth, remind others to wash hands, especially when they come in our home. And remind ourselves to  keep our eyes open for hidden dairy, or airborne dairy. Also we need to read labels over and over and find ways to live in a dairy laden world.

Is there anything else you’d like to add?

Dairy is in so many things…and in surprising places. Lauren has been in anaphylaxis so many times because of a combination of factors. First it was hard for our family to understand how sensitive she was….it started with eliminating dairy from my own diet so I could continue to nurse her but it went on to having to eliminate dairy from our home because I would contaminate her from the dishwasher items in addition to cross contamination issues. Dairy has been found in places I never would have thought of. We have had so many mistakes because we could not always grasp the seriousness of invisible dairy and because of human error…like manufacturers that make mistakes in labeling. We now know that more than 20% of medications have dairy. We find out things like that the hard way. Food labeling laws have made life MUCH easier for us. Restaurants like in Disney World makes our life easier when we go there. And people who “get it” also make life easier.

Thanks Lauren & Melissa!

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Follow Up interview with College Student, Carlo Steinman

Carlo, when we spoke last year, you were getting ready to attend the University of Chicago. You have allergies to Dairy, Wheat, Eggs, Peanuts, Tree Nuts, Soy, Sesame, Fish, Shellfish, Most Fruits and Some Vegetables. What did you find most difficult with eating in a dorm cafeteria on a daily basis?

What I’ve found most difficult is finding a good variety of protein for me to eat. There hasn’t ever really been a problem with there being food for me to eat, but there have been some difficulties with the variety of food, and I’ve been forced to have the same foods over and over, which although it keeps me fed, is somewhat frustrating. There’s always salads and some vegetables and fruits, but protein is harder to come by.

The dining hall is separated into various stations, each serving a certain type of food. There is a Euro Station–mostly carved meats (but almost always with sauces/dressing) and some sort of vegetables, the Halal Station, the Kosher Station, the Harvest Station that serves vegetarian dishes, the Pasta Station, the Salad Station, the Deli Station, the Pizza Station and the Grill Station. You can go around to any of the stations and take what you want, making a meal out of whatever any of the stations are serving that meal. I have to avoid most of these stations. The Pasta and Pizza Stations I pretty obviously must avoid, and the Halal Station and the Harvest Station frequently serve things I can’t have, because of their restrictions on certain types of foods. The Kosher Station occasionally serves things I can eat. The Deli Station is full of cross-contamination, as is the Salad Station.

The Grill Station is just a grill. It makes hamburger patties (you can add your own bun and toppings later), grilled chicken breast, and grilled cheese (which is prepared on a separate grill from the hamburgers and chicken). It makes these things for lunch and dinner every day, which provides a nice stability to the ever-changing options that the other stations offer.

Did you have any allergic reaction?

Thankfully, I have not had any reactions while at college. I think part of that is because I’ve been extra careful, perhaps even more than I usually am. A large part, though, has to be attributed to the dining staff, because they really are trained about cross-contamination and they are very willing to change gloves or use a separate pan. That said, I try to stay away from stations that could pose any sort of risk.

Did you find any other students dealing with similar allergies?

I haven’t really found anyone else with comparable allergies, both in number and in magnitude. There are a few people with intolerances (lactose intolerant) and maybe one or two people with peanut or tree nut allergies, but there aren’t very many people with allergies or anyone with allergies coming close to how many I have. That said, everyone I’ve met has been knowledgeable about food allergies or very interested in learning about them, so I’ve felt safe among my peers even though they don’t have allergies.

How do you feel about next semester and eating in the dorm cafeteria?

One of the things I’m doing over this break is meeting with my nutritionist at Mt. Sinai’s Jaffe Food Allergy Institute. Hopefully, I’ll be able to work with the nutritionist to develop strategies for me to successfully maintain a healthy diet eating in the dining hall. Then, I’ll take those recommendations and meet with my contacts at school, to work it out. I’m also going to sit down again with the dining hall staff and my contacts in the administration and see if we can’t get some of the things that have been proposed put into action. Other than that, I’m really looking forward to it. I’m excited for my classes and looking forward to Winter Quarter, despite the weather.

For your sophomore year, what living arrangements are you planning?

At the University of Chicago, the dorms work in a house system (kind of like Hogwarts). In your first year, you are placed into a house that contains ~40-100 people, first through fourth years. You can stay in that house for all four years, if you would like, or you can move off campus starting your second year. I’m planning on staying in my house, because I love the people in it and living on campus makes everything significantly easier. I may, however, start going to the grocery store more frequently and making more of my own meals to avoid the dining hall. I would, in that case, change my meal plan from the unlimited (which is mandatory for all first years and really nice) to one that more fits the changed situation.

Did you go hungry on any given day because of a lack of safe food?

Thankfully, since the Grill station is always open and serving plain chicken breast and plain hamburger patties, there was never a day where I went hungry. There were certainly days where the lack of variety was frustrating, or two or three day stretches where the only safe food for me would be from the Grill station, but I was never walking around constantly hungry, except as much as all college students on the go do, but that’s just the nature of dining hall food.

Based upon your experience, what would you tell a current high school senior with food allergies looking at college?

Really, the best thing I can say to a high school senior is that food allergies don’t need to be another thing stressing you out. The entire college process is an arduous one, and you don’t need another stressor. Pick a school that you think is the best fit for you academically and socially. All the schools I considered and all the schools that my friends with food allergies go to have been pretty good about dealing with food allergies. Don’t let food allergies dictate what college you go to. You will be able to work with the dining services staff, or just go around them and provide for yourself, if need be. I’m not going to lie and say it will be a walk in the park, but you can successfully and safely manage your food allergies in college. It isn’t easy, but nothing about living with food allergies is. That doesn’t mean that it isn’t possible, and that especially doesn’t mean that your food allergies will hold you back from having a happy, successful, normal life. Don’t let your food allergies add yet another stress to an already stressful process and don’t let your food allergies stop you from doing what you think is best for you academically and socially.

Again, I hope these help!

All the best,

Carlo Steinman

 

 

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Allergy Aware Colleges

It’s difficult to know where to start when your child with food allergies gets to that age to begin the college search. The good news is that most high schools are well equipped with counselors to help with the college search itself; however it’s up to you and your child to pursue the discussion of food allergies with each individual college or university. We found that high school counselors weren’t educated enough about food allergies to know how to answer any of our questions about a college’s ability to feed our child in a dorm cafeteria.

A university website that states,” We can handle virtually any food allergy” was not sufficient for us to feel comfortable with our child living in the dorm and eating in the cafeteria. We wanted to visit the school, eat in the cafeteria, talk with the dietitian on staff, discuss ingredients being listed for all foods and determine the menu selections for each meal in addition to discussing academics. It takes more effort to find a school that meets your child’s desires for a major and for food allergies, but it’s well worth the time to ensure safety, enjoyment and a career destination.

Finding the “Right College”

Our daughter, Michaela, graduated from high school in 2009. She has celiac disease along with multiple other severe food intolerances (beef, pork and lemon to name a few). She didn’t really know what she wanted to major in, but she had a general idea of a Liberal Arts major, so that helped our search. I suggest looking for colleges with a major in mind, and not with food allergies as #1 on your list of priorities. If your child decides that they want to major in a field that’s not offered at a particular college (that you chose for its food allergy expertise), then you have to start the food allergy education process over with another school when your child transfers. Choose a major and then take a look at the cafeteria!

Michaela knew that she wasn’t interested in moving out of state. If your child does want to go to a school out of state, looking for a local allergist would likely be necessary prior to enrollment. The maturity of your child is a large factor in moving far away and making this a positive experience. Moving a long distance away from family is difficult for children who don’t have food allergies – managing food allergies on top of this big change may be more than what some kids can or want to handle. Asking your child, “What’s the ideal situation for you to go to college?” might yield some very interesting answers!

Visit Colleges and Universities

Michaela  had participated in numerous one week and two week music camps through her high school years at several universities in Colorado. This gave her first hand experience of how the cafeteria works and what living at the school for an entire semester could look like. Sadly, she found that only one school – the University of Denver – was able to cook for her safely. All of the other schools either weren’t able to provide three safe meals per day or weren’t willing to try. One school had a gluten free menu for lunch and dinner, but not for breakfast. Another said, “we can cook anything you need,” and then had a menu of only 3 items – all of which included wheat. She ended up bringing her food for the entire one week camp and keeping it in a refrigerator utilizing a microwave to heat it. This can work for one week, but for an entire semester this would be onerous!

A friend and her gluten-intolerant daughter visited a college campus and asked the cafeteria manager what they do for students with celiac disease. The manager said, “We keep all peanut butter on a separate table!” It can be frightening the lack of understanding about food allergies and celiac disease in a college cafeteria where your child will basically be “eating out” for three meals a day.

We also went on campus visit days to numerous universities across Colorado. In the cafeteria, we searched for ingredient listings, talked with the dietitian on staff, and determined the menu selections for each meal. What we found was that the more expensive the tuition, the more likely a college/university cafeteria was to work with us. A large, public university that feeds 5000 students a day is very unlikely to accommodate a student with food allergies. One such school told Michaela that she was welcome to live in an apartment her freshman year. She gave that some thought, but decided that adjusting to college classes plus having to grocery shop and cook for herself was more than what she wanted to take on at 18 years old.

Many school cafeterias have students on work/study working in the cafeteria and this can make training about food allergies and EpiPens more difficult. Ask about the cafeteria workers when you visit a campus; watch how meals are served (same spatula used for serving all dishes?) and how plates are washed. All of this will help you and your child know where problems could occur.

Food Allergy Aware Colleges

I am currently participating in a committee looking into best practices of food allergy aware colleges for the Food Allergy Initiative (FAI). The University of Michigan (see link here) has probably one of the best systems for food allergy students. This is truly a food allergy aware college!

A food allergy aware school personalizes the experience of dining in the cafeteria; they don’t require living in the dorm freshman year (they allow for apartment living if your child is up for this!); they provide ingredient listings for all foods in the cafeteria; they have an aware chef and they have nearby EMTs and a hospital.

I have a listing of food allergy aware colleges here for the USA. I wish I had more schools listed; however most students with food allergies are in the grade school years! Those students with food allergies in college are leading the way and educating universities about how to manage food allergies in the college cafeteria setting. If you have experience with a college, please email me with their information!

Many Ways to go to College with Food Allergies

Michaela decided to stay home her first year of college and then moved out to rent a room in a house near her school, the University of Colorado at Colorado Springs. This allowed her to get a repertoire of menu items that she learned how to cook, and she adjusted to college slowly. This was the perfect solution for her.

I know of students who went to college and lived in a single dorm room so they at least didn’t have to deal with a roommate bringing in unsafe foods. Others I know brought a microwave and refrigerator and prepared all their meals in their dorm room. Still others worked out safe menu items with the school cafeteria.

In other words, there are many ways to go to college with food allergies!

As a parent, it’s easy to want your child to have the same experience you had with school – maybe join a sport or live in a sorority house. Our suggestion is to allow your child to create his/her own experience. It’s likely to be far different from yours, but that’s okay. And it might have been different even if your child didn’t have food allergies!

 

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Interview with Dr. Danny Soteres

 

Daniel F. Soteres is on the clinical faculty of the University of Colorado Health Sciences Center in Denver, and has been in private practice at Asthma and Allergy Associates and Research Center in Colorado Springs and Pueblo since 2005. Dr. Soteres received his medical degree in 1998 from Tulane University School of Medicine in New Orleans. He simultaneously earned a master of public health degree, completed a four-year combined residency in internal medicine and pediatrics, served as chief resident in internal medicine, and completed his fellowship in allergy and immunology.

Dr. Soteres, there are many research studies currently trying to find a cure for food allergies. Which research studies do you feel are most likely to yield a cure?

There are a bunch of great studies going on right now and I believe that the next 10 years will reveal a lot more options for those with food allergies.  Currently food-specific and non-specific therapies are being evaluated.  The therapies that are most promising are a Chinese Herbal formulation, FAHF-2 and Oral Immunotherapy (OIT) protocols that may be given with anti-IgE antibody (aka. Xolair).

FAHF-2 is a mixture of 9 herbs that completely blocked anaphylaxis during a peanut challenge 5 months after therapy.  This has been studied in Phase I clinical trials and was safe and effective.

There were 19 subjects with peanut and tree nut allergy.  Two patients had some mild GI symptoms.  Currently there is a Phase II clinical trial  for safety and efficacy for patients 12-45 years old with peanut, tree nut, fish, sesame, or shellfish allergy.

Let’s define Tolerance versus Desensitization.  Tolerance means that the food can be ingested safely despite long periods of avoidance.  Desensitization means that protection is dependent on regular ingestion of a food allergen.  If dosing is interrupted or discontinued, the protective effect might be lost or decreased.

Oral immunotherapy (OIT) is a desensitization process.  Small amounts of a specific food are mixed in a safe food and ingested in gradually increasing doses.  Dose escalation occurs at a hospital or clinic and then daily regular doses are continued at home.  This desensitization protocol has been successful in patients with milk, egg, fish, peanut and other food allergies.

From the medical literature some patterns have emerged: 10-20% of patients fail the initial build-up phase due to reactions; 10-20% do not achieve the full maintenance dose. So, overall 50-75% achieve and tolerate the recommended maintenance dose.  We do not know if those who use lower maintenance doses will become tolerant over time.

Humanized Monoclonal anti-IgE (Xolair) is currently approved as a treatment option for people with moderate to severe asthma.  It has also been shown to increase tolerance to peanut exposure, but the study was stopped early.

********Despite all the research many questions remain: Using anti-IgE and OIT together has not been studied yet.  Hypothetically, the anti-IgE should reduce the risk of reactions during the OIT procedure.  For OIT more studies are needed to determine the optimal build-up schedule, the optimal maintenance dose, ideal duration, degree of protection, efficacy at different ages, severity and type of food allergies, and the need for patient protection in patients treated at home.

My 15 year old son, Morgan, is currently receiving allergy shots/immunotherapy for his environmental and pet allergies. Would that disqualify him from ever participating in a research study if he were continuing to receive this treatment? Many of the kids (and adults) who are allergic to foods are also allergic to environmental allergens.  I do not think that allergy immunotherapy of environmental allergies will exclude Morgan or anyone from participating in food allergy research studies.

Would children in puberty not be good participants in a research study? Are there other criteria that would automatically disqualify a person? Clinical research trials are designed with specific inclusion and exclusion criteria.  These studies will have to be done in adolescents as well as very young children.  The only pitfall with the adolescent age group that I can think of is the issue of compliance.  If an investigator (the physician in charge of the study at a site) determined that a patient did not have the maturity to take medicines, pursue regular follow up visits and responsibly keep a short daily diary then they may exclude that patient from participating.  However, this is a rare occurrence and I don’t think it will prevent study of food allergy therapies in the adolescent population.

I have heard that 15 to 20% of participants in Wesley Burks’ research study of the ‘peanut flour’ have had to drop out of the research because of severe reactions. And that other children have had to drop out because of the onset of Eosinophilic Esophagitis. This seems frightening to me to subject a child to these possibilities. Yet there are those children who are now eating peanuts or drinking milk, who never thought that would be possible! How does a parent wisely choose whether their child should participate in a research study?

Each parent needs to collect information about the study and discuss it with their child. Next, they should discuss the study with their allergy doctor and the investigators performing the study.  Specific questions should revolve around safety precautions taken during the study especially at times when you or your child may be asked to eat one of your food allergens.  Desensitization protocols are not for everyone.  However, the process of build-up and maintenance dosing to their food allergens can be quite liberating for individuals and families who live in fear of severe reactions.

The complication of Eosinophilic Esophagitis (EoE) has been reported but this has not been a common problem with OIT.

Does your office participate in any of the research? If so which one(s)? We are not currently involved in any of the current research on food allergy.  These studies are limited to large academic centers.  Our research center is ready to go when the academic centers begin preparing some of their treatments for FDA approval and mainstream care.

What is the peanut desensitization protocol that your office is doing?

The peanut desensitization protocol that I am using in my office is based on the current protocols that have been published in peer-reviewed journals like the JACI.  I don’t call it “research-based” because we are not doing this in conjunction with any pharmaceutical companies or with the academic centers that have been doing research on this issue.  To my knowledge there are about half a dozen private practice clinics around the US that are doing the same protocol as I am doing.  Here, we have performed peanut desensitization on about 6 kids and one adult with fairly good success.  One child had a systemic reaction during the build-up phase and they dropped out.  The adult was doing very well, but had a systemic reaction shortly after going on maintenance.  He also decided to stop the procedure.  As I stated earlier, peanut desensitization is NOT for everyone.  I’ve probably talked about a dozen families out of pursuing it.  Recently I advised a family whose child has EoE not to do peanut desensitization due to the risk of  worsening the condition.

Thank you Dr. Danny!

 

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Emotional Aspects of Food Allergies and Extended Family

Food allergies comprise much more than just a physical component. The emotional aspects of food allergies continue to rear up with each stage of development in a child’s life. Dealing with extended family members who may not “get it” can create strained relationships. With those family members who do understand, it’s so wonderful to have another advocate on your side! This month, my friend, Jenny Kales, of The Nut-Free Mom Blog and I are discussing our experience with our extended family and food allergies.

Nicole: When my son, Morgan, was diagnosed with food allergies at 18 months old (after having two severe reactions – one to touching peanuts, and one to his MMR shot) I was convinced that no one but me could take care of him! Yet, I quickly learned that my husband needed all the information about Morgan’s food allergies and how to operate the EpiPen. I also learned that our extended families needed to understand the change in food habits that would be required for Morgan to be able to attend family gatherings. My father immediately said that I was overdramatizing my son’s allergies and that I’d make him into an anxiety-ridden child! He began sending me research reports about how it would be good for Morgan to be around cats and dogs (two more of his severe allergens). My father had suffered from asthma as a child, and his own mother had babied him into his adult years. I began to understand where his comments were sourced, yet I didn’t give up on the need for my son to NOT ever be around his food allergens or pets. I continued to try to educate my father about food allergies and what would be necessary for him to do to be around Morgan.

Jenny: One thing I’ve found, both in my own experience, and from the experiences that people share with me, is that some extended family members have the philosophy that  kids can somehow “tough out” a food allergy or that a small amount of a food allergen helps cure the allergy.  You are going to find all sorts of opinions that conflict with what you need to keep your child protected.  I remember one Thanksgiving (at my in-laws) where one of the kids at the table wouldn’t eat the dinner, but wanted a peanut butter granola bar instead. Everyone asked me if that was “OK.” The child in question was sitting right next to my daughter and while I don’t believe that every food allergy risk can be eradicated in life, I believed that my daughter had a right to a comfortable Thanksgiving meal and I said “no, that’s not a good idea.” That was just one incident where I was on the spot and felt that others were humoring me;  they didn’t really believe that food can be a threat to a child.  Over the years, much of this has improved but I still feel that I’m being humored at times, especially when it comes to restaurants or when I don’t allow my daughter to eat baked goods from a bakery. There will always be family members who think you’re limiting your kids unnecessarily.  I’d love it if my daughter could have the freedom to eat whatever she wants but the reality is that she can’t or her health is at risk. You need to develop a thick skin and also a sense of what your bottom line is, i.e. making good choices for your child’s health.

Nicole: Oh those holiday meals! I can remember one Christmas when Morgan was not yet 5 years old and my husband’s entire family had a get together. It was three families, plus my mother-in-law, which totaled 6 kids and 7 adults. I had asked family members to please not bring any of his food allergens to the Christmas Eve dinner, (which at the time were peanuts, tree nuts and shellfish.) The dinner was not at our house. My mother-in-law just couldn’t live without her crab puffs on Christmas Eve, so she said she made them with artificial crab meat! I was very hurt, and couldn’t understand why she wasn’t able to forego her crab puffs just that year. I was still concerned about cross contamination in the manufacturing process, even if it was artificial crab meat! Then a neighbor showed up with nut covered brownies for everyone to share, and while I requested for my husband to deal with this, they still got eaten in our presence. We had prepared Morgan’s food separately, yet we still worried about all the food allergens in the house, and I didn’t feel comfortable causing a scene, packing up and leaving for home. It wasn’t a pleasant Christmas Eve experience for me. From that year on we have always had Christmas dinner at our house where we can monitor and prepare all the foods. It’s a small price to pay for peace of mind. The good news is that now, some 10+ years later, my in-laws are very concerned about food allergies and Morgan’s safety. At my nephew’s high school graduation party last May, I received a phone call from my brother-in-law ensuring that what he was preparing was not going to cause any issues. He knew that Morgan would be bringing his own food, but he wanted to ensure Morgan’s safety to the utmost! Nothing like education and awareness…and patience on our part!!

How do you deal with the preparation of holiday meals? What about location of the festivities?

Jenny: I like to be able to cook for the holiday meals as much as possible and by now, everyone understands this and welcomes it because fortunately, they like my cooking! J When we do eat at someone else’s home, I have a hand in the ingredients and cooking as well. I always bring dessert, too. I have to say I have a very short list of people that I think truly understand how to cook for my daughter. As the years have progressed, I do think that people in my family have gotten used to dealing with food allergies at holiday meals. However, since we are so careful and we have not had a lot of repeat reactions in recent years, sometimes others might think that the risk is somehow lower. They don’t realize how much effort goes into preventing a reaction. When it comes to holiday parties that are not hosted by close family members, all bets are off. We usually just bring something to the party that we know my daughter can eat and sometimes she might eat before or after. It’s really important to keep reiterating to extended family members (or friends) that we don’t think you have an “unclean” kitchen or are deliberately trying to harm anyone.  It’s truly difficult to explain cross contact to people. Another thing is that food is extremely tied to emotion and tradition, and this especially true at the holidays. So I try to understand that not everyone will want to or be able to provide a complete menu that is OK for my daughter’s allergies. We will work around it as best we can because we also try to emphasize that family traditions are not only about food, but about spending time together and other non-food activities. However, if we’re not sure about a food, my daughter doesn’t eat it. That rule stays firm wherever we go.

Nicole: It sounds like you have more comfort with others cooking for your daughter than we have for others to prepare foods for our son. I’m not saying that’s a bad thing at all! I think that’s probably a learned thing for your daughter. Morgan is really uncomfortable with anyone cooking for him in our extended family – and I know he learned that from my husband and me. He’s especially concerned with any foods that he might be allergic to being served because of the chance of a spoon or spatula being used in one of his safe foods. He’s grown accustomed to showing up places with a cooler full of safe foods for himself. There’s several different ways to deal with a child’s food allergies in family gatherings. The best way is what brings safety and security for your child!

Jenny: I am actually really cautious about letting others cook for my daughter and I certainly want everyone reading this to be cautious as well. It’s so important. Let me clarify—when I say a short list of people who we trust, I mean maybe two people. And even for those people, we go over all the steps, cleaning, cross-contact, etc.  Usually I’ve got a hand in at least some of the cooking, so I see what’s going on in the kitchen. These “trusted” people are also not likely to have the allergens in their homes in the first place. For example, my sister (my daughter’s aunt) never buys peanut butter any more.

When I say that we work around it, I mean that we will just bring our child her own meal if there is any risk involved in eating the food. Usually people are very accommodating to us, but ethnic traditions play a role. For instance, one side of my husband’s family is Greek. Nearly every Greek cookie or cake either contains tree nuts or came into contact with tree nuts; baklava is one example. It’s nearly impossible to eliminate these desserts off of a celebration or holiday menu, because of the strong cultural ties. Sometimes we might go to an event but bring Alex a separate meal or side dishes, etc.  You can’t be shy about refusing potentially unsafe foods since avoidance is our best weapon against reactions.  We’ve probably offended some good cooks along the way without meaning to. Certain cultures equate food with love and that is especially true for Mediterranean cultures!

Nicole: Thanks Jenny for sharing your experience with extended families and food allergies. There’s many ways to enjoy the holidays – and enjoyment is the key!

 

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Halloween & Food Allergies

Managing food allergies and Halloween isn’t always easy, but we have found ways to have fun. Since it’s a holiday immersed in food, it’s easy to become overwhelmed and want to not participate at all. Our son never allowed the thought of not trick-or-treating to enter his mind! Therefore, we learned how to handle the holiday and keep him safe too. Here are some of our ideas to enjoy Halloween and also to keep it safe!

First, have your child choose a great costume. The dressing up part was most of the fun for my son. The candy was an afterthought. We’ve made costumes and allowed him to be a part of this so that he can get really excited for this part of Halloween.
We have read The Food Allergy & Anaphylaxis Network (FAAN) book, “Alexander Goes Trick-or-Treating” many times. This is a good book to begin discussing ways to deal with Halloween and food allergies. (This book may be purchased online by visiting the FAAN website here.)

My son usually had a Halloween/dress up party at preschool and elementary school for which he always brought his own snacks. Some of these parties were elaborate events with a huge amount of food brought into the classroom. This is where I found that being a Room Mother was vital! I was able to help plan the party and ensure that only safe foods were brought in. Also, I attended the party to ensure that nothing unsafe was brought in. You’d be surprised how many parents have forgotten about nut-free snacks being required in the classroom by the time Halloween comes around. We learned to ask the teacher to send out a reminder notice prior to the party day asking for only nut-free food to be brought in. Letters at the beginning of school regarding a nut-free classroom can be but a memory to parents who don’t deal with food allergies daily.

As my son aged, we found many teachers were no longer willing to have a bunch of sugary snacks brought into the classroom at 9 am for kids to gorge on before lunch. We had many teachers give guidelines for the snacks such as only one sugary treat, and everything else had to be fruits or vegetables! Boy did we love that kind of teacher! I never trusted even the most well-meaning parent to bring in safe food for Morgan. Cross contamination in their kitchen could occur, even if they were supposedly making a safe treat. We always provided Morgan’s food for these events, or I brought the foods for the party and showed him which ones he could eat.

The rest of the class had nut free snacks that another parent provided. I have brought special treats for my son to pass out to his friends from Vermont Nut Free Chocolates or from one of the other safe allergy food companies listed on our site here. It was very exciting for him to have candy that he could enjoy too. This especially helped in the preschool years.

For Trick or Treating, we purchase only food that he can eat to give out at our door or we give out mini-Play-Doh or plastic rings and spiders. When he was younger, and we would go out trick-or-treating through our neighborhood, he would occasionally ask for a nut free snack from a neighbor! Most of the time people thought that was cute, and didn’t really understand. We’ve asked him to just say thank you regardless of the food he receives. Our agreement has always been to not eat ANYTHING until we get home! I know of some food allergic families who will give out safe candies to their neighbors and tell them what costume their child will be wearing so that only safe foods will be brought home. This can work great especially if you know your neighbors well!

Once home, we pore over the candy he receives and begin to put it into piles. The candy that we know has nuts in it goes into the pile to give out to other trick-or-treaters coming to the door. In this way, this candy doesn’t stay in the house where an accidental mix up can occur. Added to this pile is candy that he doesn’t like, and candy that doesn’t have a label on it. If we don’t know the candy and it doesn’t have a label on it, we don’t allow our son to eat it. What is left over is the candy he can eat. This is candy or treats that we know are safe. Raisins and Dum Dum lollipops were some of his favorites as a little boy. There usually isn’t much candy in this “safe” pile, so I allow him to exchange some of his candy for safe treats or pennies/nickels/dimes that I have on hand or other safe candy. Be especially careful to read labels on all candies. Some ‘regular’ size candy bars are safe, but the Halloween size ones are manufactured in a different facility and therefore may not be safe.

My daughter doesn’t have peanut allergies; however most years she gave away her peanut candy also. She felt better doing this, and we allowed her to make her own decision. We kept her candy separate, with her name on it in a separate cabinet from my son’s candy. For any candy that she kept that could cross with peanuts in the manufacturing process (such as M&M’s), we ensured that she ate these outside of the house.

This year, with Morgan in 10th grade, there won’t be any Halloween parties at school and therefore no extra foods brought in. The kids are allowed to wear costumes, but the day isn’t centered on parties. I must say it’s a welcomed relief to have him in high school!

Remember that Halloween is just one day, but vigilance is required. Make sure to discuss with your child what your expectations are about foods brought into his/her classroom. Discuss a plan for the day and what you expect in terms of your child eating safe foods at school parties. We found that talking about scenarios prior to the day helped Morgan to deal with the unexpected like unsafe foods brought into the classroom.

I also had already cleared with the teacher that if an unsafe food was brought into the classroom that he/she would deal with the parent and ask that the food be taken back home. A parent’s hurt feelings are preferable to a child going into anaphylactic shock!

Overall, try to have a fun day!

Posted in Holidays & Food Allergies | 3 Comments

Emotional Aspects of Food Allergies at School

Food allergies comprise much more than just a physical component. The emotional aspects of food allergies continue to rear up with each stage of development in a child’s life. A child in preschool might not notice receiving a ‘safe snack’ from their snack bin; while an elementary child will wilt at the teacher giving them something different to eat. A middle school child might rebel against food restrictions, while a high school age child may go further and tempt fate by eating one of their food allergens. My friend, Gina Clowes, of AllergyMoms, and I have had multiple conversations about the emotional piece of the food allergy diagnosis. Below is just a piece of what we’ve experienced with our children at school, and our hope that our children can overcome these sometimes difficult situations to better understand their food allergies, yet not be defined by them.

Nicole: When my son, Morgan, started preschool I was pretty emotional about him leaving me for even a few hours twice a week. I’m sure many parents, especially mothers, feel that way if their child hasn’t been in daycare.

Morgan had been at home where I could carefully control his environment and monitor his severe food allergies (peanuts, tree nuts, sesame, fish & shellfish), his eczema, asthma, and severe pet and environmental allergies. I was so upset when looking for a preschool (this was in 1999) that every private preschool that I interviewed in our city (Colorado Springs), wouldn’t admit our son. They either didn’t want the liability of a child with severe food allergies, or they said they weren’t willing to be trained on the EpiPen.

I never thought that I’d receive that response. I figured that if I trained the staff how to administer an EpiPen, and if they kept his allergens out of the classroom, he would be safe at school. I didn’t want to fight for my child to go to a school that didn’t want him to attend. Instead we found a public preschool that provided everything we wanted, and it was a wonderful experience for him and for me. Morgan was always fine to have his own snack that was different from the others in the classroom. He knew it was a safe snack, and he felt included.

I had to mature emotionally in order to advocate for my child – asking for just what he needed and not more.

Gina: The first year my son attended preschool, I did things the way many allergy moms had done before me. I explained my son’s allergies and trained the staff on avoiding, recognizing and treating allergic reactions. He had his own snack every day and for birthday celebrations, the other parents were supposed to let me know a few days in advance of bringing a treat, so that I could bring something similar for my son.

One day, I arrived to pick him up a few minutes early and I peeked inside the classroom. I saw 15 kids laughing and devouring beautifully decorated cupcakes piled high with icing and sprinkles. My son sat there looking forlorn eating wheat-free pretzels and drinking spring water.

Something clicked in me and I wondered how a teacher would think it was okay to serve 15 three year-olds and leave one sitting there.  How can it be a celebration when one child is excluded?

When I talked with other allergy moms, I found out that a lot of them tackled this (birthday exclusion) issue with the “safe snack box”  When I first heard of this, I thought it was an appalling option. I call it the “We’re-planning-ahead-to-exclude-your-child-box.”

It’s one thing for our kids to have to bring their own treat to a friend’s birthday party or to a relative’s house for a holiday. To me, that is understandable. But school is for learning. And if a teacher or school administrator decide to allow children to celebrate birthdays or other holidays at school, I believe these celebrations should be inclusive.

Imagine a video of one allergic child from kindergarten through first grade, second, third, fourth, fifth…dozens of birthdays over the years..where the kids look longingly at the delicious cupcakes being passed around and there is that same child who cannot partake. How can anyone think that is okay?

So, I’ve never sent a safe snack box to school for celebrations, and I feel so grateful that my son has been included in safe celebrations.  However, I have softened my stance over the years and I do realize that what works for my family may not be what  works for others. If parents and their children feel happy with the “Safe Snack Box” option, I’m happy they’ve found something that works.

Nicole: My son never had upset by eating a treat that’s different from everyone else, and I guess I’m lucky that he didn’t!

He has always viewed it that his snack is safe, and that makes it the best food in the world! When he went to camp during his 6th grade school year – a ‘rite of passage’ with all 6th graders in our school district – he brought his own safe food rather than rely on the camp cafeteria to cook for him. So many of his classmates were envious of how wonderful his food looked in comparison to theirs! They begged him to save them just a bite or two!!

Gina: The other issue is that this situation (birthday cupcake celebration), is a school activity regardless of who brings in the treats. Teaches and/or administrators make the call as to whether to serve the food or not.

If I declare the first Tuesday of every month, “Spaghetti and meatball day” and decide to serve that to the class, I think they’d turn me down! lol

We need to get away from the thinking that “we” (allergy moms) have to convince other classroom parents to include our kids or keep them safe.

That may be the case for playdates, but this is school.

Children with food allergies have a right to be included at school.

Most schools have a policy that students can only give out birthday invitations in the classroom, if they are going to invite all of their classmates. Understandably, the teachers don’t want any students to feel excluded.  But clearly, when in-class birthday celebrations occur and everyone is sharing cupcakes except you, you’ll feel left out.

And there are many, many reasons for restricting food or foods from the classroom anyway. We have a nation where 63% of adults and now 35% of American children are overweight or obese. Let’s find a healthier way to celebrate!

Nicole: Another emotional aspect of food allergies at school that we have found is the potential for bullying. It seems that some children are just looking for how to make others feel inferior, and sadly food allergies makes a child such an easy target! And some parents I have dealt with have their own methods of bullying too!

My son’s bullying experiences have been taken very seriously by the school administrator(s) and immediate and decisive responses have been given toward the bully. In fact, the first incident where a child bullied my son was in 1st grade. He threatened Morgan with a peanut butter cracker saying, “I’m going to kill you with this cracker!” Morgan didn’t take the incident very seriously, yet his friend did and reported it to the playground monitor. The offending child was hauled into the Principal’s office, his parents were called and he was suspended for the rest of the day! It was a decisive move, and I really appreciated the Principal taking swift action. The wonderful thing is that today Morgan and this boy are good friends! And they don’t even have to talk about the incident anymore.

I didn’t get into the middle of the incident, and never felt the need to discuss this little boy’s actions with his parents. I allowed the elementary school Principal to do her job, which allowed me to work on forgiveness – which is very difficult when someone threatens your child! And it also allowed me to see how our school district needed guidelines for severely allergic students to assist schools to deal with situations like this.

Gina: Regarding the bullying issue, both of my kids have been bullied at different various times. It’s never fun for a parent to have to deal with this but when you know your child is vulnerable medically, it’s even more disturbing.

I agree with you though that some of this starts with the parents. And that is why I think it is important for allergy parents to really become informed so they can truly advocate for their child. And you can still do this nicely.

A lot of times, teachers will ask the allergy parent to write a letter, or speak in front of the classroom asking them not to send in a particular food or to please consider bringing something safe for the allergic child.

I think this approach sets the wrong tone. It perpetuates the notion that accommodating allergic children is optional or that it is up to the other classroom parents.  This is a potentially life-threatening medical condition and if accommodations are required, they should be implemented. It should never be left to the good nature of other classroom parents.

So before I dismount from the soapbox, let me say that I also really believe in the adage “If it ain’t broke, don’t fix it.” I know parents who have taken a completely different approach from mine, and it’s worked beautifully, and that’s terrific.

Nicole: Thanks Gina for a great conversation about just a few of the  emotional aspects of food allergies in schools. It’s emotional for parents and for children with food allergies. Together we can help our children grow into capable advocates for themselves!

 

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