What It’s Like as the Allergy Mom – A Child Grows

It’s that time of year—back to school! I know it’s an exciting and overwhelming time for every parent, but for a parent of a child with multiple severe food allergies, this transition can be particularly anxiety inducing.

My son is among the (exponentially) growing number of children that has severe food allergies. He just started Pre-K at a new school, and while I know the school (and other parents) are getting used to accommodating food allergies, it can get really complicated to manage—even for us—and the idea of trusting so many strangers to keep my son’s allergies in mind when they plan their own kid’s food choices makes me panic a little.  

Of course, this isn’t the first time my son’s food allergies have inspired these feelings…we live in a constant state of low-level anxiety about food every day. And then there are days when it becomes full-blown panic.

A DAY IN THE LIFE OF AN ALLERGY MOM

A few months ago, my son started to exhibit signs of an allergic reaction while we were eating dinner at home. We gave him allergy medication and tried to stay calm while we examined the food we’d given him. It was all food he had eaten before except for one new hot dog brand, which didn’t seem to contain any of his allergens and was very similar to the brand we normally gave him, and yet…his face was now covered in hives, and soon he started to show signs of extreme drowsiness, which typically indicated he was having a severe reaction.

It was not my son’s first severe allergic reaction, but it had been a while since the last one and we hesitated on using the EpiPen. The allergist had told us that the drowsiness could be a sign of blood pressure dropping, which is one symptom of a life-threatening anaphylactic allergic reaction. But was he really drowsy, or was he just getting tired?  It was so hard to know for sure. I took out the EpiPen and got ready to inject it (read more about how to use an EpiPen here), but reconsidered when I saw that he was still able to walk around a little. In the past, when he had a severe reaction, he was not walking. We decided to wait on the EpiPen, and rushed him to the Emergency Room.

When we spoke to his allergist later, she told us we should not hesitate to use the EpiPen if we were in that situation again. It could not hurt—aside from temporarily making him feel jittery and possibly sick—but the reaction could have been more serious and it was not worth the risk of waiting to find out. Of course we felt terrible for taking an unnecessary risk with our son’s life.

When my husband contacted the company that produced the hot dogs, they claimed that none of his allergens were in them but admitted there was a possible risk of cross-contact since their equipment was also used for a product that contained tree nuts. While we can never be sure if this was the reason for his reaction that day, it seems like the most likely explanation. The good news was that the reaction wasn’t as bad as it could have been, and he was okay, but the bad news was that we didn’t know for sure what had caused it or how to prevent it from happening again.

This was the fourth time we had been to the ER for an allergic reaction, and we are getting used to the process. But you never become fully accustomed to the feeling of panic when your child starts to show signs of an allergic reaction or the constant questioning and self-doubt in deciding how to handle it, or the feeling of watching your son lying on a hospital bed and feeling powerless to help him…all because of something he needs to stay alive and most of us take for granted: food. For a while after this reaction, I was afraid to feed my son anything, worrying that he had a new, undiagnosed allergy or that a hidden allergen could cause a reaction. It felt like any food could poison my son.

Before we discovered that our son had multiple severe allergies, I was blissfully ignorant of these feelings. I never had allergies of my own and didn’t know anyone with severe food allergies.  It was a shock to learn that I had to closely watch everything he ate, or that I couldn’t take him out to eat at restaurants without bringing his own food (or without intense anxiety once we started ordering for him at supposedly “safe” restaurants), or that he would rarely be able to eat the food that other kids were enjoying at school, play dates or birthday parties. I never understood that food could be a constant source of anxiety instead of pleasure, or that it would seem nearly impossible to do the kind of world traveling that I had always imagined doing with my son.  It never crossed my mind that my sweet young child would have to contend with the inevitable feelings of anxiety and exclusion that come along with having severe allergies.

Fortunately, the world has become a lot more aware of food allergies and there are more products and accommodations made for food allergies today than ever before. For the most part we have been lucky to interact with restaurant staff, school administration, family members and other parents who are accommodating of his allergies and take them seriously. There are exceptions, of course. And sometimes I am still surprised by how little people understand or know or care about allergies. But, then, I have to remind myself of how little I knew about allergies before I was forced to contend with them on a daily basis.

allergy mom food allergies cupcake picture

 

WHAT YOU CAN DO TO HELP

If you are one of the lucky ones who lives without the daily stress of food allergies, I sincerely hope you never know what it feels like. But for the sake of me and my son and other people with allergies, please educate yourself about food allergies and make sure you know what to do in case you are ever with someone who has an allergic reaction. There are many great resources for learning more about food allergies including here and here.  

A few tips and responses to common questions about food allergies:

  • ALWAYS ask the parent/caregiver before giving food to a child, even if the child says he/she can eat the food. At a young age, the child may not understand his/her allergies and can’t be responsible for knowing if it’s safe.
  • Please teach your children it’s not okay to share food with others outside the home. I know it’s a shame, but this seemingly generous act can be very dangerous for kids with allergies in schools and most good teachers will teach them not share food with each other anyway for this reason.
  • It’s NOT okay for a food allergic person to have even a small amount of the allergen. He/she can have a reaction to trace amounts of an allergen, if the allergy is severe enough. Avoiding it entirely is the only way to be safe.
  • Even though certain foods—like nuts and shellfish and other common allergens—are more likely to cause allergic reactions, people can be allergic to ANY food. Remember that every allergy is different and always ask for any details that are relevant to you.
  • If you are making food and trying to avoid certain allergens, please be careful to avoid “cross-contact” (a.k.a. cross-contamination). If the allergy is severe, even trace amounts of the allergen transferred from cooking surfaces to food during the cooking/prep process can cause a reaction. Make sure to clean cooking surfaces and utensils with soap and water before cooking the allergen-free food, and keep all food separate during cooking and prep.
  • Just because a food product says it’s allergy-friendly (or gluten-free or nut-free or dairy-free), that doesn’t mean that it’s free of ALL allergens. It just means that it is free of certain specific allergens (usually one or more of the top eight allergens). PLEASE READ THE WHOLE LABEL including any allergen/cross-contact statements after the list of ingredients. 

I love being a mom to my incredible (and otherwise healthy) son, and I know others have to contend with far worse. It’s our job as parents to do whatever we can to keep our kids safe—and I don’t expect you to bend over backwards to keep my son safe like I do (or like you would for your own child).  But I do hope you take a moment to put yourself in my shoes, educate yourself a little, and take food allergies seriously—and handle them empathetically—when someone with allergies crosses your path.

And when it comes up, please talk to your kids about food allergies. It can be great opportunity to teach them about kindness, consequences, and what it means to be a part of a larger community that looks out for each other.

For advice on dealing with allergies in the classroom, check out The Food Allergy Classroom.

The Food Allergy Classroom

Margel Nusbaumer is a local writer and mom in Brooklyn. Thoughts? Reach out to margel@achildgrows.com.

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