As an allergy parent, you’ve led the charge in your home on food allergy rules and epinephrine carrying. But does your food-allergic teen or young adult really get it? Does your child truly grasp what anaphylaxis is, and the need to follow self-management protocols without exception?
You’ve worked diligently on allergen avoidance and thought you had imparted enough self-advocacy tips to last a lifetime. Yet, your allergic teen has experienced at least one reaction after making questionable choices. What is going on? Why the disconnect?
If you’re in this situation and feeling baffled and worried, first, know that you’re not alone. Let’s explore some episodes of allergic teen reactions, which could have been avoided or at least mitigated. Then, we’ll get vital expert perspectives on why risky food allergy behavior can emerge during the transitional years to young adulthood. Plus importantly, how you can help your allergic teen to stay safe.
Risky First Date Leads to Reaction
Kelly couldn’t believe her ears. Her daughter Rose* was in the middle of her first full-blown allergic reaction in 17 years. Rose told her mother she was heading to the ER after accidentally eating peanut during a first date at an Asian restaurant. To make matters worse, Rose was not carrying her epinephrine auto-injector.
Shocked, Kelly questioned herself. How could this happen? Why did her 19-year-old daughter eat at a restaurant with a high risk for allergen cross-contact? And no epi?
In the early years after diagnosis, Kelly researched food allergies, joined a food allergy support group, and was all in on trying to keep her daughter safe.
Rose knew better than to take chances with her allergy, but Kelly had noticed a change. During her teens, Rose began downplaying her food allergy, even with restaurant servers. It was odd; the girl wasn’t one to be impulsive.
Yet, as Rose reflects on her restaurant reaction in November 2022, she admits the desire to fit in had grown stronger. Her family was anxious about her allergies when she was young. But today, Rose doesn’t even remember the anaphylactic reaction she had as a toddler.
Kelly is now left to question the lessons she taught. Did she share too much information about the dangers of food allergies before her daughter was mature enough to understand? Or in later years, was it too little information, since Rose hadn’t had a reaction in years?
College Reaction Without Epi
His mother’s instructions over the phone were clear, “use your epi and call 911.” But Christian*, a first-year college student, said: “I don’t have time to go to the hospital. I have homework and finals.”
Christian was already experiencing an itchy, tight throat and was coughing. But he was not listening, even though he had experienced allergic reactions in the past, which landed him in the ER. His parents were frantic about his condition and began the two-hour drive to his campus. Meantime, Christian walked alone, outside and in the dark, to his dorm room. His epinephrine auto-injector stayed unused in his backpack.
He had been accidentally exposed to an allergen at his dining hall campus. The student had previously met with the dining staff and they’d established food allergy accommodations. His mom says Christian had been a great food allergy advocate, not a risk-taker. He was the kid who carried epinephrine everywhere – even ice skating. At college, he taught his roommates about his allergies and hung his anaphylaxis emergency plan on his dorm wall.
But that night before finals, Christian didn’t follow his protocol for managing a reaction. He knew he was supposed to inform others, use his auto-injector, call 911, and go to the hospital. His reaction subsided with antihistamines, but his parents spent the night wide awake in the dorm, observing their son for a biphasic reaction.
Marie recalls that Christian has only had epinephrine at the ER. She wonders if “we created a barrier to using the epi inadvertently. We may have made it seem the last resort instead of the first defense.”
Right after the reaction, Marie turned to a social media parent group to warn that even the best-laid plans can go awry. She posted about the episode and shared these words, in all caps for emphasis: “Talk to your kid even if you think you have a well-developed plan!”
Christian did meet the dining staff and campus police to discuss what to do if a reaction happens again. However, he still plays down the danger he faced that night.
Risky Approach to Escalating Reaction
Justin Zaslavsky described himself as “disturbingly careless when it came to my food allergies” in a confessional article for Allergic Living. In it, he related how his worst allergic reaction came about at the age of 19.
It happened while working as a research assistant with food allergy researcher Dr. Ruchi Gupta and her team at Northwestern University. One afternoon, Justin bought a bag of kale chips. He missed on the label that the chips contained cashew – and he’s allergic to tree nuts. Justin tried to take care of the reaction by himself – buying Benadryl, then vomiting repeatedly and experiencing throat tightening. He ultimately wound up in the ER, and required three doses of epinephrine to halt the reaction.
Justin admits one of his big mistakes was not informing Gupta, someone who thoroughly understands food allergies, that he has allergies. He didn’t think it was relevant to his work. Then another error, he played down his reaction as it was progressing. Also, Justin, who trained as an Emergency Medical Technician, delayed administration of epinephrine. He should have known better.
Now 26, Justin is completing his first year of medical school and has had time to reflect on that big reaction. He still questions why he took such allergy risks. He thinks he may have taken too long to develop the habit of always carrying his own epinephrine. (He’d been used to his mom having it.)
Looking back, he also realizes his then-teenage thought process could be irrational and prone to peer pressure. He wanted to fit in, and not be different.
Research on Teens & Allergy Risks
These stories of taking allergy risks show a big disconnect between what teens learned at home and how they chose to behave. Despite their training to avoid and manage allergic reactions, these teens made bewildering choices. So, what happened?
The answer starts with teen brain development. In the Allergic Living article “Food Allergy Management Meets the Teen Brain,” writer Heather Hewett explored the intersection of adolescent risk-taking and food allergies. She related expert views on how the still developing teen brain is programmed to respond to perceived rewards more than possible dangers. Rewards are tied to peer approval and, in an effort to not seem different, the allergic teen can lean toward underestimating an allergy exposure risk.
In more recent research, behavioral experts are gaining new understanding of teens’ and young adults’ belief systems, specifically related to food allergies. They’re quantifying how the beliefs influence behavior and decision-making.
Downplaying your food allergy is now a research focus area with teens, says Dr. Rebecca Knibb. “They don’t want to seem different and don’t want to make a fuss,” says Knibb, a psychologist and researcher with Aston University in Birmingham, England. “Some may think they have perhaps grown out of their allergy if they have not had a reaction for a long time.”
Knibb co-authored an analysis 20 medical papers on adolescents’ beliefs about their food allergies and how they affect behavior. In 11 of the reviewed studies, conducted in the U.K., Canada and Europe, allergic teens were either “dismissive” of high-risk behaviors, or they had a great fear of allergic reactions.
Teen participants were clearly conflicted. “Some adolescents presented both beliefs, being very aware of their food allergy yet simultaneously viewing it as ‘no big deal,'” notes the 2022 study.
Peers Take Priority
Knibb and her colleagues found many instances of adolescents being skeptical of the need to avoid foods with “may contain” warnings. Some found that disclosing their allergies to peers, other than close friends, just identified them as “different” and made life more difficult.
Epinephrine-carrying was lessened when teens perceived a low risk of encountering allergens, such as when playing sports. However, it was also lower among those who felt “shame, fear of being seen as different or irritation at having to explain themselves.”
On the road to adulthood, food-allergic teens are highly susceptible to peer influence and pressure.
In a 2020 editorial for the medical journal Allergy, U.K. and European researchers noted the impact of the rising influence of peers. The authors said the combination of lack of experience and the profound influence of peers meant allergic “adolescents are more likely to make risky decisions, which may have long-term negative effects on their health.”
Consider Rose and Justin wanting to “fit in”. Justin also told Allergic Living that his understanding of allergies ahead of the big reaction had become skewed. He began to consider his IgE-based allergies similar to food sensitivities that others at college discussed. Despite years of being told food allergies can be severe, he was susceptible to peer influence on this.
Another review paper, co-authored by psychologist Dr. Kristina Newman and Knibb, relates that food allergy can become such a part of a teen’s identity that some may seek to minimize its role in their lives. This often leads to risky behaviors, such as not carrying epinephrine.
Rationalizing Risks, Not Carrying Epi
In all three of our young person examples, psychologist Dr. Linda Herbert sees elements of the Health Belief Model. That’s a tool to predict individuals’ behaviors toward a health condition based on their perceptions of it. (Behaviors include taking – or not taking – preventive actions.) She says Justin had a “low perceived susceptibility” to a severe outcome when he turned only to Benadryl in his reaction.
Herbert, director of the psychosocial program for the allergy division of Children’s National Hospital in D.C., says Rose and Christian also appear to have underrated the risk of severe outcomes.
As to Rose playing down her food allergy, Herbert says that could reflect not feeling the restaurant was a supportive environment. Or it could be about speaking up in front of her date – what the model would call “a perceived social consequence”.
Teens and young adults do risk assessments in their own way, says Knibb. It can often depart from what they’ve been taught. “They tend to come up with rationales as to why they don’t need [to carry] their epinephrine auto-injector rather than why they do,” she told Allergic Living.
Listening to and Helping Your Teen
The beliefs that allergic teens may gravitate toward aren’t always evident to parents or healthcare providers. So how can we help our young people manage anaphylaxis risk – and still feel like they fit in?
Remember Christian’s mom’s advice: “Talk to your kid even if you think you have a well-developed plan!” Talking and importantly – listening – is where assistance starts.
Helpfully, Herbert provides Allergic Living with conversation-starting tips for parents of allergic teens and young adults:
1. Learn how to listen.
It takes practice and Herbert recommends “reflective listening.” This starts with paraphrasing back what your child said to make sure you understood what was meant. “This shows you are paying attention and not making assumptions,” she says.
2. Ask Open-Ended Questions.
These are the best to start discussions and avoid abrupt “yes” or “no” responses. For example, say: “Tell me more about what happened in school today” instead of “Did you have a good day at school?”
3. Don’t Downplay.
If a young person is expressing emotions or a concern, validate that feeling. So avoid: “No one’s going to notice you’re eating something different.” Instead, try: “You sound stressed about others noticing you’re eating something different. How can I help?”
4. Timing and Tone.
Pick a good time to have a serious allergy conversation. This is not when your student is studying, about to head out, or everyone’s hungry. And when it is a good time to chat, put down the electronic devices. In terms of tone, hold off on rushing to judgment. Listen, then weigh in considerately.
“It’s easy to use reflective listening and not jump to conclusions when you have time and space,” says Herbert.
Fill the Gaps, Let Them Vent
Knibb stresses that “understanding how young people think and behave is really important. How a young person thinks about and manages their allergy will be different to how a child does or how an older person might.”
Herbert says through understanding their thinking, you can help adolescents to make good food allergy decisions and fill in any gaps in skills.
In her clinical practice, Herbert says if teens just don’t understand risks, they educate them. As well, “if they mention anxiety as a barrier to speaking up about food allergy, we help them navigate social situations.” With teens who are not adhering to good allergy practices, “our goal is not to make them more anxious,” she says. “So, we don’t do this through scare tactics.”
Epinephrine-carrying is, of course, vital with food allergies. But rather than checking constantly on that topic as a parent, Knibb suggests visual cues can be less intrusive. An example would be reminder alerts on smartphones or a dedicated front hall spot for a medical bag with auto-injectors.
For parents finding that getting the conversation going on allergy risk-taking is not easy, sometimes sharing an activity (walking the dog, driving, cooking) is a relaxed time to break the ice.
As well, Herbert says that through listening to older kids, and asking them if they want our advice, the adult can figure out how to help. “Sometimes they are looking for a listening ear or help to solve a problem. Sometimes they just want to vent,” she says.
We’ll know this if we listen and try to sit less in judgment. There is clearly much work to do with allergic teens. But as Herbert and Knibb show, it is actionable.
Imagine if parents changed the mindset on educating young people and learned how to ask different questions about their teens’ food allergy beliefs.
If we could adjust what and how we teach based on their beliefs, we could narrow the knowledge gap. The positive is – we can help allergic teens to find the ability to take those lessons into the world.
*Some names in this article have been changed for privacy.