Last year, for Food Allergy Awareness Week, I wrote about the things I’d learned in the 2 years since my daughter’s diagnosis with a peanut allergy. This year, I’d like to share some things that I, as a parent of a child with a severe food allergy, would like for you to know.
I don’t want to be the food police; I just want my child to be safe and hopefully included. Even though I occasionally have fantasies involving terrible things happening to Mr. Peanut, I really don’t care what other people eat, except when it poses a threat to my child, or serves to exclude her participation in a place like school or at the public library. However, when it comes to school parties, unlike birthday party attendance, school attendance is mandatory, and all children deserve to feel safe and included in their classroom. I’m prepared as best as possible with an alternate, safe treat but children notice when they are different. When there was an unscheduled birthday treat at their preschool and I hadn’t gotten notice to send anything, my children got a different snack from their bags. Even though they were just a little over 3 years old, they still remember it and talk about it. While parent-provided safe treats are better than nothing at all, no child wants to stand out as the different one.
I’ll never, ever ask you to change the menu for your child’s birthday party, but please understand why I ask and if we can’t attend. Party invitations fill me with anxiety; I feel so rude asking someone what will be served at a party and make the determination as to whether or not we can attend based on whether or not there will be a gaggle of preschoolers running around with peanut butter and jelly sandwiches, touching all the things.
It’s something I think about almost constantly. Pre-allergy life, I really didn’t think food allergies were a big deal because, well, just don’t eat the allergen, right? I even had an allergist (who we no longer see, fortunately) flippantly tell me it wasn’t that big of a deal because peanuts were easy to avoid. Technically, they are, compared to something like soy that’s used in so many processed foods. But it’s not just about the allergen; it’s about the cross-contamination risk, which, considering there’s a peanut or nut variety of many cereals, snack foods and candy, is very significant if a manufacturer uses shared production lines and the cleaning protocol isn’t adequate or followed properly. Earlier this winter there was a massive recall of cumin for undeclared peanut protein; I never would have thought that my spices were a risk, but that recall showed otherwise. It’s also not just about the allergen in foods; nut oils are frequently used in cosmetics, soaps, sometimes even cleaning products. And, then there’s the factor of the avoiding the allergen via contact; it’s worrying if there’s peanut butter residue on the playground equipment and it’s finding the perfect spot on the beach and discovering a pile of peanut shells in the sand. Pretty much any time I serve my children food, or leave my house, it’s on my mind, just to be aware and be prepared.
EpiPens do not always work to stop a reaction. Epinephrine, the medication delivered by an EpiPen, is the best treatment for a severe allergic reaction. However, if it’s not given timely, it may not stop the reaction. In 2013 a teenage girl died in California, despite having several epi shots administered to her. The public perception seems to be that an EpiPen is a magic bullet and, that’s simply not the case. It’s the first line of defense until a patient can get to the hospital for steroids and observation, but it’s not a guarantee.
Food allergies can be deadly. The term “allergy” conjures symptoms of sneezing, coughing, and being inconvenienced, but not incapacitated. But every year, too many people die from food allergies. It may not make the headlines, but word travels through the allergy community and that night, I sleep a little less, heartbroken for the mother who lost a child, and scared about the safety of my own. Many of these children who die never had a severe reaction before the one that took their life. So, please pardon my soapbox when I’m asked about the severity of my child’s allergy; each and every time, a reaction can present differently, so the safest way for us to proceed is by treating it as a life-threatening allergy.
It’s not a choice. Everyone wants their family to be healthy, and, for many people that means lifestyle choices such as being vegan, or Paleo, or gluten-free. I find that food allergies often get lumped in with these other kinds of specialty diets. Except, here’s the big difference: food allergies are not a choice, and they are often a life or death situation. I try my best to feed my kids organic, minimally processed food and sometimes it’s hard for people to separate the particularities from the requirements because it’s easy for it to all get lumped into diet-based“lifestyle choice.” But the fact of the matter is food allergies are not a choice, and not an excuse to control my child’s diet; it’s about keeping her safe, and everything else is bonus.
1 in 13 children have a food allergy and that number is growing. Doctors don’t know why this is happening at such an alarming rate, and there is no cure. Strict avoidance of the allergen is the only way to prevent an allergic reaction and this means constant vigilance. It’s my job as an allergy parent to educate myself, and my child as much as possible on how to prevent a reaction and, to also educate others on how to make a safer, more inclusive environment for all. (And, If you’re interested in learning more, check out FARE at foodallergy.org – they are great resource for learning about food allergies).