Teens Speak Up About Averting Food Allergy Tragedies
Posted Oct. 20, 2015 – The fall 2015 deaths of three teenagers from anaphylaxis, in what appear to have been avoidable circumstances, raised fears for many food allergy parents. Questions such as: “Why aren’t these teens carrying their epinephrine auto-injector?” or “Why are they consuming foods that aren’t labeled?” are just a few that ran through my mind. But perhaps the broader question is: “What’s the best way to reach a teenager with a message of safety?”
Allergic Living’s editors thought it would be helpful to get some teenage perspectives to gain insights. So in October 2015, I gathered a group of teenagers from three different high schools in Academy School District 20 in Colorado Springs, Colorado. Each of them has a history of at least mild reactions to his or her food allergens, and a few have had anaphylaxis.
Over the course of 90 minutes, we candidly discussed how to handle risky situations, as well as the Sept. 21 death of Colorado student Simon Katz, who attended Chatfield High School, just one hour north of the city where these teens live. We also generated ideas for how to get adolescents with food allergies to learn about key behaviors and avoiding risk.
Strong points the students made
When I asked the students what they would tell a friend with food allergies if asked, ‘Why should I always carry my epinephrine?’ I got responses that would make a parent proud.
Arianah responded: “You never know when anaphylaxis will actually happen.” Collin said, “The one time you don’t have it, is the one time you’re going to need it.”
Based upon Alec’s experience with exercise-induced anaphylaxis after eating shrimp, he said, “allergies are unpredictable” to which Makenzie readily agreed. And Carina added, “You can accidentally come into contact with your allergens.”
The teens told each other about their individual allergies, sharing numerous experiences, and over the hour and a half, I watched them open up more about their challenges, too. Arianah has found disbelief on the part of her friends about her allergies and said, “You can talk about it all you want, but until you actually see the hives on the face, the swelling, when you can’t breathe and you can’t say anything, you can tell your friends, ‘Yeah, I have an allergy,’ but (they only believe) when they see you have an allergic reaction.”
Alec shared a challenge next: “I don’t think a lot of people understand about food allergies. When I first told one of my friends, he didn’t believe me.”
The teens all felt they get the most information about food allergies from their parents. This was a good reminder that it’s important to be educated and vigilant because, even as adolescents, our children are watching and listening for cues from us.
Concerns about their misconceptions
Nearly all the teens on our panel exhibited behavior and/or opinions that were concerning from an allergy safety point of view. We present them here (without names attached), not to embarrass anyone, but because we want to raise awareness of mistaken assumptions, which other teenagers may share that could lead to negligent behaviors or risky situations.
Three out of the five teens came to the focus group without their epinephrine auto-injectors. While it’s true that I had assured parents no food would be served, this was a major concern for me. When I asked about whether they felt uncomfortable about this, the teens said they knew they didn’t have their auto-injectors with them, so therefore they wouldn’t eat.
As one teen put it: “If you eat something, and you don’t really care if you have an EpiPen, then it’s your loss. I don’t mean to be harsh. I don’t have my EpiPen with me. I didn’t want to carry a bag. And I thought well, I just won’t eat anything then. And it’s my loss if I do.”
When asked if they would eat food without a label, for example at a bake sale, all of the teens except one said, “No!” Yet in the ensuing discussion, it became evident that misinformation about food allergy reactions was rampant.
There were comments such as: “If I was more allergic, I probably wouldn’t buy it” or “I’d just ask, ‘What’s in this one?’” and “Usually I can tell what’s in it. Or you choose something that you know wouldn’t have peanuts in it.”
As a parent of a teen with food allergies, I was pained to hear these defenses for what I would call risky behavior. The teens who hadn’t experienced recent anaphylaxis seemed more willing to purchase food without full knowledge of the ingredients.
I asked how many teens read labels on food before they eat a product, every single time. Only one teen, Arianah, said she does. The rest of the teens seemed mildly surprised that a company would ever change the ingredients or the manufacturing process to add an allergen or the risk of cross-contact.
A couple of the teens told stories about waiting to see if a reaction got worse before giving themselves epinephrine. Some of the reasons cited for this were: the expense of an epinephrine auto-injector; the pain of the needle; and that it was “just mind over matter” when it came to what they deemed to be a “mild allergic reaction.”
A couple of teens also assumed that a series of “minor reactions in the past” meant they would never have anaphylaxis, which is false, as research has shown past reactions don’t predict future ones. When I inquired about what their allergist had directed them to do if they had accidentally eaten an allergen, one teen admitted she still needed to ask her allergist that question.
School and carrying auto-injectors
I understand teens not wanting to broadcast the fact that they have food allergies. However, learning how to tell and train a few friends in high school (or earlier) allows for a foundation upon which to stand in college – the great frontier of new adventures – where parents want adult children to take actions on their own to be safe.
All but one of the teens felt they could manage their food allergies at high school without any specific accommodations, and without their teachers even being aware that they have food allergies. Only one teen, Arianah, had specific accommodations for no food allowed in her high school classrooms, and she regularly wipes down her desk in every classroom. While the teens may have sat at a peanut-free table in middle school, they no longer felt they needed this in high school.
All of the teens said they carry auto-injectors at school, but the size of the devices was an issue, especially for the boys, who didn’t want to carry a bag, nor put it on their belt, and therefore carried it in a backpack. Arianah carries an Auvi-Q and presented it to the group as a possible alternative.
Some of the teens have trained their friends about their food allergies, how to respond to reactions and how to administer their epinephrine auto-injector. Some haven’t. “If it’s bad enough, I’d probably inject myself,” Alec said. All of the teens said that they know how to inject themselves, but only Arianah had the experience of doing so.
All of the teens knew not to leave their epinephrine auto-injector in the car. As Collin said, “My car sits outside. In the winter, it gets really cold. In the summer, it gets really hot. So I don’t feel it’s really smart to keep something like that in there.”
The teens believe school administrators should have stock epinephrine with them at after-school events and should know how to help a student in anaphylaxis.
Next: Recent tragedy hit close to home