Having read about yet another tragic death from food allergies last week – a peanut allergic 11 year old boy in Utah – it reminds me of the discussions we had with other food allergy families about how vigilant they were. Some families didn’t have the benefit of the knowledge about food allergies from an allergist. Some didn’t properly know how to recognize the symptoms of an allergic reaction. Some felt that an overly vigilant lifestyle around food allergies would thwart their child’s ability to enjoy life. Other families were so scared of an allergic reaction that they hovered over their child not allowing them to ever be without parental supervision. We’ve found the more understanding and awareness we have of the potential for an allergic reaction, the more able we are to make an informed decision about what level of vigilance is needed. With food allergies, once a family figures out how vigilant they need to be, sometimes it’s too late – and that is beyond tragic!
When our son, Morgan, was diagnosed at 18 months old with a severe peanut allergy (and an egg allergy too), he had experienced hives upon touching a peanut butter sandwich. After that, we were in that stage of denial, hoping that the skin prick test was an anomaly. I thought maybe he would outgrow the peanut allergy. He was able to eat eggs baked in foods just fine, so maybe we were over reacting to the food allergy diagnosis.
A year or so later, at the local school playground, I was talking with another Mom whose 8 year old son had a peanut and egg allergy. She told me about how they never tell the school about his food allergies because he only reacts if he eats the food. And according to her, he knows to never eat peanuts or eggs. She also said something like, “Besides we end up in the ER a couple of times a year, but it’s no big deal.” I was horrified and scared! Was that in our future? Was that really the level of vigilance that was acceptable?
Something shook me to the core about that conversation, and I decided that our family wasn’t going to live that way. There had to be a way to stay away from Morgan’s food allergens and to keep him safe. We needed some agreements to keep him safe in all situations. If my husband and I agreed about these when he was a little boy, Morgan could then continue living by these rules when he took on keeping himself safe.
Here were our rules about food:
– Eat foods that have an ingredient label
With the labeling laws in existence now, even this can be problematic if a teacher is expected to read an ingredient label and understand that “May contain…” is a voluntary statement on a label. That’s why we needed more rules than just this one! We read the label of every product along with Morgan from his earliest years. I believe Morgan wanted to learn how to read at a very early age to be able to read food labels.
– Read every ingredient label every time you purchase a product
Product ingredients change even if the product packaging stays the same. We made this mistake once with a Klondike ice cream bar. We had purchased this product for at least a year and while the packaging stayed the same, the product contained a “may contain peanuts” warning that I didn’t read. He had a horrific stomach ache after eating, and we were able to trace it back to the ice cream bar. We were graced with a warning on this!
– Any baked foods that don’t have an ingredient label aren’t allowed
Think about bake sales at school – a disaster waiting to happen!! Another little girl in Morgan’s kindergarten class had a peanut allergy. She had never had a reaction, but since her older brother had a peanut allergy the parents had her tested too. They had an EpiPen for her at school, but they didn’t give her any rules about her peanut allergies other than “don’t eat peanuts.” Therefore, she would ask another child at a bake sale, “Does this have peanuts in it?” I cringed when I heard this. Thankfully, she outgrew her peanut allergy and nothing bad happened along the way. This situation could have easily turned out otherwise.
– Eat only foods that Mom & Dad give you or approve
When Morgan would go to a birthday party, I would either prepare a safe snack for him OR he would decide to not eat OR on the rare occasion that the food was safe, I would have read the label and approve it for him. Usually this was with ice cream. Morgan has brought his lunch to school every day. While the school is required to provide a safe meal for him, we were able to provide a safe lunch for him and did so. It was one less worry for us.
– Carry a Chef Card for Restaurant eating
Eating at a restaurant with food allergies is a big deal. Carrying a Chef Card really helps to let the wait staff and the Chef know EXACTLY what your child is allergic to. Better yet, speak with the chef about cross contamination and how to keep your child safe. Have your child practice giving the information to the wait staff when they get older so that they will be able to do so alone when they are a teenager.
– Carry Your EpiPen AT ALL TIMES
There will be mistakes with food allergies. Having two EpiPens with you at all times will ensure that when there is a mistake, you have this life saving medicine within arm’s reach. Additionally, keeping an EpiPen in the car will ruin the medication (too hot) or the injector device (too cold).
– Don’t make food allergies the center of your child’s life
Morgan has been able to do so many activities because we look at the opportunity for him to enjoy and experience life first, and then we figure out how to manage his food allergies. He is an intelligent, loving, wonderful son who happens to have food allergies.
AT 17 years old, Morgan now is responsible for caring for himself when it comes to food allergies. He’s very cautious and makes good decisions. And he ALWAYS carries his EpiPens. Yep, you’re reading a little Mother Pride on that one!!