Life StoryAug/Sep 2009 Issue

Adolescence and Anaphylaxis

Helping your food-allergic child navigate the risky teen years

Banana Stock/age fotostock

Banana Stock/age fotostock

A girl dies after eating Chinese food at a North Carolina shopping mall in 2005. A Massachusetts boy dies after one bite of a cookie at a friend’s house in 2006. A girl dies after consuming a burrito at a shopping center near her home in Esquimalt, Canada, in 2007.

What do these tragedies have in common? Each fatality was a teenager with a severe food allergy. And none of the victims was carrying self-injectable epinephrine, the drug that might have saved their lives.

The combination of adolescence and anaphylaxis is a dangerous mix that can turn deadly, according to Scott H. Sicherer, MD, associate professor of pediatrics at Mount Sinai Medical Center in New York. The reason? The risk-taking behaviors commonly associated with adolescence.

“We know that the teen years are intrinsically ones where experimentation, independence and rebellion become common themes,” says Sicherer, author of Understanding and Managing Your Child’s Food Allergies (Johns Hopkins Press). “At the same time, teens want to fit in with their peers. They may also have feelings of being invincible.”

Two examples: A teenager goes off alone during an allergic reaction, not seeking help due to embarrassment. Another teen eats an unsafe food rather than question ingredients and call attention to her allergy.

Sicherer co-authored a 2006 study of food-allergic young adults and adolescents ages 13 to 21. Published in the Journal of Allergy and Clinical Immunology, the study found that “a significant number” of participants admitted to risk-taking behaviors. Although the majority reported they carried self-injectable epinephrine when traveling, many admitted they weren’t as likely to have the medication with them at parties or sports events or when wearing tight clothing.

How can parents help their food-allergic child safely navigate the bumpy teen years? The answer is tied to a close, mutually respectful parent-child relationship, one in which parents instill core self-confidence in their child along with a healthy perspective of the allergic condition. And experts say the teaching should start early.

Confident Kids

Stefan Lainovic, 16, has life-threatening food allergies to milk and egg. His mother Rebecca Lainovic of New York City began encouraging Stefan’s self-advocacy skills at a very young age. A big part of that instruction was helping Stefan speak up.

“We wanted to empower him even as a little boy. We wanted him to know that he could speak for himself,” she says. So every time the family went out to a restaurant, it was Stefan’s job to explain that he didn’t need a menu, thank you, because he had brought his own food.

Chris Ryan of Berwyn, Illinois, made it a family priority that his son Greg, who has severe allergies to tree nuts, eggs and shellfish, learn to speak for himself.

“We worked with Greg and made him comfortable saying ‘no,’” Ryan says, adding that Greg, now 19, understood that sometimes speaking out would be tough. “That’s how Greg learned to take care of himself and not count on others to watch out for him.”

Ryan attributes the close relationship and open communication that he and his wife developed with his son with helping Greg gradually take over the responsibility necessary to live safely with his allergies.

“It’s essential to work with a food-allergic child while he’s still small, to train him in behaviors that allow him to flourish as a teen. In a way, we grew up together with this medical condition,” Ryan says.

Teens with food allergies must learn to speak up about personal medical information at an age when no one wants to be different. This is particularly challenging in social situations. Take dating, for example.

“Imagine the courage and self confidence it takes to have to explain your food allergy to someone at the beginning of a date and tell that person that if they eat peanuts or milk or nuts, they won’t be able to kiss you good night,” says Anne Munoz-Furlong, founder of the Food Allergy and Anaphylaxis Network (FAAN). “The only way to overcome this is to be up front with your friends and others about your food allergies.”

Not Alone

The teen years can be tumultuous under normal circumstances. Throw in a life-threatening allergy and developmental challenges increase. It helps for food-allergic teens to find others in like situations. A network of support is a reminder that it’s possible to successfully—and happily—live with allergies.

“I think being part of a community is essential,” says Carlo Steinman, 16. He has severe allergies to egg, dairy, sesame, tree nuts, peanut, fish and shellfish. He also is allergic to wheat, soy and some vegetables and fruits.

“There are other people out there just like me, people who have gone through the same things that I have and have managed to deal with it.”

Carlo, who lives in New York City, is a member of FAAN’s Teen Advisory Group (TAG), a group of 45 teens who write essays for TAG’s website, providing guidance for food-allergic teens and informing others about allergies.

In the 2006 study measuring the habits of food-allergic adolescents, Sicherer says that the major request from teen participants was that their peers be educated about food allergies.

“Presumably if peers had more understanding of the allergies, it could be easier for the teen with food allergy to feel that they ‘fit in,’” says Sicherer, adding that savvy friends can help if medication is ever needed and can also reduce risk-taking by providing acceptance and accountability.

Feeling understood is an issue for Stefan Lainovic. When people hear about his milk allergy, they often assume it means he can’t drink milk or eat ice cream. That’s true but it goes beyond that.

“It’s hard to get people to understand that even a trace amount of dairy is dangerous for me,” he says, recalling two anaphylactic episodes he’s had due to cross contamination. “They don’t get the severity of a reaction, that you can actually die from something like this. It’d be nice if people knew more about anaphylactic allergies.”

A Balanced Perspective

The most difficult aspect of parenting a food-allergic child is walking the line between living safely and living normally. How do you explain and account for the risks without paralyzing your child?

When he was younger, Stefan Lainovic went through a fearful period, feeling anxious because of his allergies. His parents told him that, yes, his allergies were dangerous—but that he was in control.

“They informed me that I was in charge of everything I put in my mouth,” says Stefan. That helped. Keeping his medication close at hand also alleviated anxiety. “I had what I needed to address a reaction.”

Stefan plays tennis, water skis, snow skis and travels several times a year as part of his high school debate team. The active teen describes himself by what he enjoys doing, not by what he can’t eat. Stefan says it’s sometimes easy for food-allergic teens to get caught up in the notion that they are victims. “It’s important to find other ways to define yourself,” he says.

“We’ve always said we would never allow allergies to stop our family or our son from doing what he wants to do and needs to do with his life,” says Rebecca Lainovic. “He’s got way too many other great things going on to have this one thing rule his life.”

Greg Ryan, 19, agrees. “I would tell middle and high school students to not let their allergies control their lives. Don’t let a food allergy decide what you do or who your friends are. I am not saying to be careless but rather to never let it hold you back.”

Carlo Steinman writes for his high school newspaper, is on the debate team, participates in the chess club and performs community service. “There’s nothing that my allergies stop me from doing as long as I keep a positive outlook and plan ahead,” he says.

Plenty of Preparation

Planning ahead is the key to living with anaphylaxis. Bottom line message: Safety is more important than spontaneity.

“Teenagers are supposed to be happy-go-lucky and free but food-allergic kids can’t be. There’s no getting around it,” says Jody Falco, mother of Carlo Steinman. “That can be very frustrating for them. It can be painful.”

It takes maturity for food-allergic teens to navigate the multiple spontaneous situations that are so common at this age. When friends decide to go to a basketball game and grab a bite to eat, Carlo Steinman must stop and figure out how to make the outing work. Will he be able to eat at the restaurant they choose? Just in case, he always keeps a snack in his backpack.

“You have to have a strategy in mind, whether it’s to have some food on you at all times or to just decide to eat afterwards,” he says.

Stefan Lainovic always keeps a nonperishable snack with him—and he says his friends are supportive. They stop at a neighborhood store to buy safe chips on their way to an evening at the movies.

“The allergy forces kids to be more resourceful,” Rebecca Lainovic says. “If they want to participate, they have to find a way. Each kid has to figure out what works best for him or her.”

Rebecca Lainovic helps her son by keeping a supply of safe food ready to cook, such as hamburger patties and chicken fingers. When it’s time for one of Stefan’s trips, the meals are cooked and packed in a refrigerated bag, along with paper plates, napkins, plastic utensils and wipes.

But there are times when even plenty of preparation isn’t enough to outweigh the risk and responsibility that arise with certain outings. Carlo Steinman wanted to attend a summer program but was told the facility could not accommodate his dietary needs. Carlo and his mother, Jody Falco, felt that, at 16, he shouldn’t be stressed about how to feed himself at a place that said upfront they couldn’t provide a safe atmosphere. So he decided not to attend.

“Limitations are frustrating. These kids have to be more mature than their peers to be able to handle the disappointment,” says Falco who always keeps food at the ready. “We plan everything. I expect Carlo to take what’s been packed and behave responsibly on his trips.” Her biggest challenge? “To be able to let go safely,” she says.

Rules to Live By

Food-allergic children must be given clear guidance on how to keep themselves safe. Parents should set and enforce basic rules early on so that following them becomes a habit, says Munoz-Furlong. These rules include:

  • Never leave home without your medication.
  • Don’t go off alone if you think you’re having a reaction. Tell a friend.
  • Take all reactions seriously.
  • Know what you’re eating before you put it in your mouth.

This last item includes learning to read product labels. Unless they know the source, kids should avoid high-risk foods that are common causes of food-allergy fatalities, such as desserts, fried foods and sauces.

“We made it clear to Greg that the rules are simply not negotiable,” says Chris Ryan.

“Getting a teen into good habits, like always carrying medication and being prepared, is a gift that parents can give their child,” Munoz-Furlong says.

Leaving Home

Greg Ryan didn’t want his food allergies to limit his choices when he began looking at colleges. And they didn’t. He chose Brandeis University in Waltham, Massachusetts, because of what the school offered, not because of how it handled food.

Greg’s parents stocked his dorm room with familiar food brands when they dropped him off and they helped him work with the dining hall to set up a system for his meals.

Years of parental guidance and steady reinforcement of good habits—carry your medication, ask questions about food at a restaurant, read labels—laid the foundation for Greg’s ability to manage his allergies and his life while away from home.

“When I was young, my parents were responsible for dealing with my allergy. As I grew older, they slowly let more and more of that responsibility fall on me,” says Greg, now a member of the Brandeis crew team.

“It’s important to allow supervised independence before the teen years,” says Scott Sicherer. “That way, when independence arrives, food-allergic kids are ready and comfortable watching out for themselves.”

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