In 2016, a family vacation in the South ended with 5-year-old Sarah Gray speeding by ambulance to an emergency room, rather than flying home to Philadelphia. The child, who has multiple food allergies, began suffering from chest tightness and a burning sensation in her throat just before the Grays were about to board the plane.
“She must have eaten something,” says her mother, Heather Gray, a teacher, describing the harrowing ride. “We still don’t know what it was. It was horrible.”
They found a later flight, “and we didn’t get home until the middle of the night,” she adds. “But I’d much rather take a detour to the ER than have a problem at 30,000 feet.”
Sarah was treated and released, and she was fine — physically.
Emotionally, however, the episode left her with a growing anxiety about food-related activities that most children take for granted. Birthday parties, sleepovers, lunch in the school cafeteria and eating in restaurants made her nervous. She began to avoid any food not prepared by her family.
“She doesn’t want to be excluded, but she became much more fearful,” Heather Gray says.
Kids have a tough enough time protecting themselves from health emergencies when they have food allergies, but sometimes the stress of staying safe can create another problem almost as serious — worry so severe that they shun the normal events of childhood rather than risk exposure and an allergic reaction.
“This has been a long unrecognized problem,” says Joanna Dolgoff, a pediatrician in Paulding County, Ga., and spokesperson for the American Academy of Pediatricians (AAP). “I see lots of kids with food allergies who are afraid to eat out. It’s hard for them to go to a birthday party or a restaurant or play date, and relax and eat there. They want to stay in. We need to find ways for our children with food allergies to be able to participate in all facets of life without fear.”
The situation for anxious children has worsened as they emerge from the distancing imposed by the pandemic, leaving the house for outside settings where there often is food.
“Covid certainly magnified these issues when families were home in their safe bubble, eating only food prepared by parents, and weren’t going out to eat,” says Megan Lewis, a nurse practitioner and director of the Food Allergy Bravery Clinic (FAB), a program at Children’s Hospital of Philadelphia that focuses on helping children and their parents cope with their anxieties over food allergies. “Now they need to figure out how to enter back into the world, and many people are rusty on those skills. Yes, children do need to be aware and cautious, but it can really snowball when anxiety takes over.”
Food allergies affect as many as 8 percent of children between ages 5 and 17 and may be increasing in prevalence, although it is unclear how many suffer from these debilitating anxieties. For those who do, however, the effects can seriously impair their lives.
“Healthy and joyful development for children means engaging with the world, feeling confident in going to school, spending time outside their home with friends and gaining independence from their parents as they age,” says Katherine Dahlsgaard, a pediatric anxiety specialist in private practice and a former director and co-founder of the clinic. “Kids with food allergies do need to be cautious. But we don’t want them to avoid the normal parts of childhood that help them develop successfully.”
Lewis agrees. “Food is everywhere, part of all social situations, and we don’t want them to be nervous about navigating life, and to miss out,” she says.
The clinic was co-founded in 2018 by Lewis, Dahlsgaard and Jonathan Spergel, chief of the hospital’s allergy program, and has begun to share its expertise with other clinicians. Its approach encourages anxious children to gradually take part in certain safe, structured practices that help them realize that their personal universe is a much safer place than they think, and that they are capable of protecting themselves within it.
These behaviors might include trying new foods (that don’t contain allergens), sitting in the same room with the food they are allergic to, even touching the food and then thoroughly washing their hands. The team develops an individualized, cognitive behavioral treatment plan for each child that includes repeated “brave practices” to embolden children to take small steps toward confronting their fears, and enhancing their comfort level within these situations.
“Exposure is the effective ingredient in therapy for anxiety, and exposure therapy is absolutely appropriate for kids with food allergy anxieties,” Dahlsgaard says.
For example, a child with an allergy to peanuts may practice being in the same room with someone eating a peanut butter sandwich, then move closer and sit at the same table, then sit next to that person, each time becoming physically closer to the allergen without having a reaction to it.
“We tell our food allergy patients and families: We want you to have some anxiety because we want you to keep yourself safe, but our goal is for you to not have so much anxiety that you miss out on life,” Dahlsgaard says. “We want you to ‘graduate’ from the clinic confident that you can live your life fully while still keeping yourself safe. It is devastating to families with kids with food allergies when their kid is too scared to go to a birthday party or sit with other kids at lunch.”
Parents should not be hard on themselves when their children become stressed over their allergies, she says.
“I think parents are very prone to blame themselves,” Dahlsgaard says. “We do not blame parents. Parents feel terribly guilty when they tell us they let their kids’ anxieties rule the show. With all the different information out there, they say they don’t know who to trust. We are very sympathetic to them.”
The therapy — usually six sessions — also provides patients and their families with guidance, such as how to avoid cross-contamination from serving utensils, and ways to talk to restaurant and cafeteria workers about whether any prepared foods contain allergens or were cooked on a shared surface.
Most insurance plans cover the cost as part of allergy treatment, Lewis says.
The researchers have developed a scale to assess food allergy anxiety, and have made it accessible to other scientists and clinicians. They also are treating patients via telemedicine across the country — “great for families who live across the country and can’t get to Philadelphia,” Lewis says, and training other clinicians to deliver the therapy.
“We want every child who needs this to be able to get it,” Dahlsgaard says.
AAP’s Dolgoff, while unfamiliar with the Philadelphia clinic, thinks “it’s great that somebody is addressing the problem,” she says. “We definitely need programs like this to help these children, and hopefully there will be more.”
In her practice, Dolgoff teaches kids how to read food labels and ask the right questions at restaurants, and encourages them to bring their own snacks to parties and other events. “We tell these kids not to be shy or embarrassed about bringing their own food,” she says.
This is what Sarah Gray — now 10 and a fourth-grader — does. “We always pack her food when she goes somewhere like a sleepover or birthday party,” Heather Gray says. “Her friends are very understanding.”
Sarah went through the clinic’s program in January.
“I see a new confidence in her, and can tell her anxiety isn’t as extreme as it once was,” her mother says. “After a while, I could see the anxiety lessen and her body language showed she wasn’t as nervous as before. It’s definitely been a step in the positive direction.”
To be sure, the Grays still are scrupulously careful. “For example, we like to go to baseball games,” Heather Gray says. “Instead of thinking, ‘Wow, these are great seats,’ I will think, ‘I wonder if someone had nuts in this seat last night?’ ”
But “I don’t want Sarah to let her food allergies define her,” she says. “She’s smart, athletic and brave. The world is at her fingertips and her allergies are just along for the ride.”