When Your Child Has a Food Allergy

When Your Child Has a Food Allergy

It can be hard to strike a balance between keeping kids safe and letting go

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Julia Kepniss’ son, Jack, 8, is allergic to sesame, peanuts and tree nuts, dogs and cats. Photo by Liz Lynch

Jack Kepniss is climbing the walls. Eight years old, whippet thin, and in nearly constant motion, he places a bare foot on each side of the doorway leading from the family room to the kitchen in his Chevy Chase home and hops up until his blond hair brushes the top of the frame. He balances for one precarious moment—no hands!—before jumping down next to his 4-year-old sister, Flora. Both briefly dig into a snack of gummy fruits and Goldfish before bouncing into a new game.

Jack loves break dancing classes, baseball and soccer. He’s even tried the school glee club. But there’s nothing simple about anything Jack does. For every after-school activity, every playdate or party, Jack’s mother, Julia, has to make a decision: stick around and wait for him, or explain to the adult in charge—for what feels like the umpteenth time—that her son is allergic to sesame, peanuts and tree nuts, dogs and cats. Leaving Jack with another parent, or a new coach, means that Julia must provide a short tutorial on the use of an EpiPen, the epinephrine injector that can save Jack’s life if he inadvertently ingests an allergen.

“I find at this particular age—he just turned 8—the management of the EpiPen, in terms of the handoff, is really onerous,” Julia Kepniss says. “The playdates and drop-offs and birthday parties are so much management. You can’t just hand someone an EpiPen—I send a detailed email. Because you are entrusting them with a big thing, and a big project.” There’s good reason for that vigilance—it’s not always clear what’s safe to eat. Jack’s grandmother came back from a White House Christmas party in 2015 with plain sugar cookies shaped like Bo, the first puppy. Jack and Flora tore into the snack, and after one bite, Jack began breaking out in hives. The cookie, seemingly safe, had been cross-contaminated with nuts. Benadryl helped.

“I try not to worry too much,” Kepniss says, “but I worry about the gap times.” There’s no EpiPen on the school bus, for example, and Jack is too young to keep one in his backpack. Many kids don’t carry their own EpiPens until they’re between 10 and 12. “You never know when a kid is going to offer your kid a granola bar to try.”

The family had its one truly frightening night with Jack four years ago, at home. Julia’s husband, Matt, had just gone out, her infant daughter was sleeping, and the little boy began to react from a pistachio he had eaten. Until that moment, they knew Jack was allergic to milk and eggs (he’s since grown out of both allergies), but they didn’t know about nuts. His throat got scratchy, he broke out in hives, and then he started vomiting. His mother recognized the symptoms as an anaphylactic reaction and administered an EpiPen. Her son still remembers the ride in the ambulance.

Kepniss had a milk allergy when she was growing up, so she gets it. She understands the need to carefully instruct each authority figure in Jack’s life, and realizes she has to teach him to be cautious. Yet like all moms, she wants her son to grow up independent and free from anxiety, with as few restrictions as possible. She doesn’t want him to live in fear, but she also knows she must instill in him a healthy respect for what he cannot have. For families like hers, that balance is the crux of everything.

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Each new day brings some degree of risk for parents of a child with food allergies. They put their trust in the community to help keep their children safe. They have no choice—parents can’t be there to protect their kids from everything. A child at the soccer field shows up with homemade chocolate chip cookies to share after practice. Will your daughter remember to ask if the cookies have nuts? Her Girl Scout troop is making s’mores, which she can’t eat. Will she take a bite anyway?

“I teach kids they are their first advocate,” says Dr. Carla Ward, an allergist with offices in Chevy Chase and Wheaton, who also has a child with allergies. “My daughter is 7 and can read labels and knows what is safe and not safe to eat. But kids don’t like to be different. And at birthday parties it is tough. They can’t eat the same foods, so you bring a safe snack.” In some ways, Ward says, “it’s easier if they have had an EpiPen experience and they remember [it].”

Jack’s mom either attends playdates and  after-school activities with her son or entrusts another adult with his EpiPen. Photo by Liz Lynch

According to Food Allergy Research & Education (FARE), 1 in 13 children in the United States has a food allergy. The American Academy of Allergy, Asthma & Immunology estimates that more than 38 percent of children with food allergies have had a severe allergic reaction. Dr. Linda Herbert, a psychologist working with families at Children’s National Health System in Washington, D.C., recently co-authored a paper on what she calls the oft-hidden side of the uptick in food allergies—or as the authors put it: the importance of “interventions to address elevated psychosocial concerns, such as parenting stress, anxiety and worries about bullying.”

Doctors encourage families to have an “allergy action plan” that includes a supply of Benadryl, a cache of up-to-date EpiPens, a detailed list of the culprit allergens, and instructions on when to use which drug. Parents keep EpiPens in the car and the house, carry one with them, and give one to the school nurse, the soccer coach and the dance instructor. They get new EpiPens every 12 months, when the old ones expire. But taking those precautions doesn’t eliminate the anxiety. “People are most worried about the unknown,” Ward says. For some parents, the psychological impact of having a child with an allergy looms large—the fear can linger from the moment their son or daughter waves goodbye each morning.

“I think preschool is the scariest time,” says Alexandra Horowitz, a stay-at-home mom of three who lives in Chevy Chase. Her son, Frederick, now 13, is allergic to peanuts. “With little kids, you are leaving them at a time when they are not able to advocate for themselves or take care of themselves, and you really have to trust teachers, the nannies, the other moms, whoever you are leaving your child with. …I was always worried my child would have a reaction and not say they feel sick—a little kid may not know to go to an adult and say ‘[my] tongue itches.’ My fear was there would be a reaction and no one would know this. Sometimes it’s subtle, and you want to catch it when it’s subtle before it progresses to dangerous.”

As kids get older, new worries emerge for parents and the children themselves. Herbert has young patients who refuse to eat at school or at social gatherings. “They feel uncomfortable eating when other kids are eating around them. They worry about cross contact,” Herbert says. Some come home after a long day having eaten nothing at all; others ask to go to the nurse’s office for lunch because it’s the only place they feel comfortable. Then there are the “kids who slowly start to restrict the foods they eat, even ones they know are safe,” she says. That means a kid who reacted to a muffin might stop eating crackers and breads, too, limiting the range of food choices.  

Herbert tries to alleviate anxiety by talking with parents about the correct language to use when it comes to food allergies. “I counsel families to not use scary terms kids can’t quite understand. They can understand they will get sick, but the concept of death—that can be very scary, and kids don’t have a great concept of death when they are younger,” she says. Instead of talking about the risk of dying, she says things are “safe” or “not safe.” But as children grow up, some begin to realize how severe the impact of their choices can be, and start asking more questions.

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