The eczema that covered little Gwen’s body was the first clue for Kate Fairchild that something was amiss with her infant daughter. Their pediatrician suggested trying non-dairy formula, but the eczema wouldn’t go away. “Her skin was so bad,” recalls the Arlington mom. “Her hands looked like a burn victim.”
The pediatrician ordered a blood test, which confirmed that Gwen was allergic to eggs, peanuts and tree nuts.
Fairchild was taken aback—neither she nor anyone else in her family has food allergies—but she looked at Gwen’s diagnosis as a project to tackle. Their family would live a great life, she decided. They’d just work around her daughter’s dietary restrictions.
As a stay-at-home parent, Fairchild didn’t worry much about her daughter’s health the first few years because she was with her all the time. Even so, there were close calls. When Gwen was 1, the family went out for breakfast and her face broke out in hives after she ate a piece of bacon. It turned out the bacon had been cooked in the same pan as another customer’s eggs. “I hadn’t thought about that,” Fairchild says. “That was my first wake-up call.”
Then there was the time she had to jam an EpiPen into Gwen’s leg on the last day of preschool. The place was nut-free and everyone knew her daughter had a severe egg allergy. But one of the parents had brought in turkey sandwiches with mayonnaise, not realizing that mayo contains eggs. Gwen started eating one, and told her mom her tongue and throat “felt funny.”
“I looked at this sweet little girl,” Fairchild says, “and I said, ‘I have to Epi you,’ and she burst into tears.”
Imagine, for a moment, the things so many of us take for granted: the ability to eat whatever you like; to travel without lugging along special meals; to send your kid to a friend’s house without issuing a lengthy set of instructions about the foods they need to avoid. Not having to worry that your daughter may break out in hives if she eats the cupcakes in class. Not thinking about whether your high schooler brought his EpiPen to football practice.
Then consider how life works for families where one or more children have a severe food allergy. Going out to dinner turns into a cross-examination of the waiter, and sometimes the chef, about ingredients. Traveling outside the U.S. is risky if language barriers make it difficult to ask how the food is prepared. Sibling jealousy takes hold if one child has allergies and the other doesn’t.
“I’ve had families describe this as like a shadow that follows them around,” says Linda Herbert, director of the psychosocial services program for the Allergy and Immunology Division at Children’s National Hospital in Washington, D.C. “We’re eating multiple times a day, and you have to make a decision about whether it’s safe, whether to trust the person giving you food. You need to be constantly prepared and be aware of what’s around you.”
Some 5.6 million U.S. children under age 18 (roughly 7.6%) have food allergies, according to research published in 2018 in the journal Pediatrics. Most of us are familiar with the most common allergen—peanuts. Other common offenders include milk, shellfish, tree nuts, eggs, fish, wheat, soy and sesame.
Peanut allergy in children has increased 21% since 2010. Today, nearly 2.5% of all U.S. children are allergic to peanuts, according to research by Ruchi Gupta, a food allergy expert at Northwestern University. And it can be dangerous. Peanut allergy is the leading cause of anaphylaxis—a life-threatening allergic reaction—and is rarely outgrown. (Kids can, however, outgrow milk, egg and wheat allergies.)
Food allergies are a significant source of stress and anxiety for kids and their families. Physicians routinely encounter preteens who are terrified to try new foods. Parents worry that their teenagers, already prone to risk-taking behaviors, might be tempted to ditch their auto-injectors (EpiPens) when they head out with friends.
Younger kids can get bullied. High schoolers may struggle with intimacy if, before kissing their boyfriend or girlfriend, they have to ask what they ate that morning.
But children with food allergies can also exhibit remarkable maturity for their age, especially if they’ve ever been rushed to a hospital after they started choking and wheezing, or have blown up with hives after eating something they shouldn’t have.
Or—in the case of Arlington sisters Josephine and Olivia Van Hoey—have had teachers who don’t understand how life-threatening their allergies are.
Josephine, 12, is allergic to dairy, eggs, peanuts, tree nuts and sesame. When she was in fifth grade, she remembers her homeroom teacher put up a sign saying that no food was allowed in class. Yet the teacher herself would eat yogurt or oatmeal in the classroom. “We kept having to explain to her that this was a very big deal,” Josephine says.
One day, another teacher took out a doughnut and started eating it in class. Josephine politely explained the no-food-in-the-classroom policy, but “she didn’t really get it. She said she had a napkin, but she had been walking around getting crumbs in the classroom and touching the paper she handed to us. It was really scary.”
Olivia, 14, is allergic to eggs, cow’s milk, tree nuts and shrimp. Several of her science teachers have included food-related lab experiments in the curriculum, she says, and she’s had to ask them to warn her ahead of time.
Recently, though, one teacher forgot. As soon as Olivia entered the classroom—where an experiment with eggs had just concluded—she started coughing and wheezing. “I was a little panicked,” she says. “I only developed my allergies a few years ago, so it’s a bit of a new experience to have to talk to a teacher about that. It felt like she was being a little insensitive.”
The girls’ mom, Nicole Van Hoey, says she taught her daughters from an early age to speak up when adults put them at risk for an allergic reaction. She is heartened by their friends’ efforts to include her kids in things—like the one who asked whether she could bring a “safe meal” to Josephine’s orchestra practice so they could eat together. And the time classmates petitioned their teacher to allow once-a-month breakfasts with “safe foods” so Josephine could participate.
Parents say the kids understand when their friend can’t eat certain foods; it’s the adults who often have trouble with the restrictions.
According to the Centers for Disease Control and Prevention (CDC), the number of children with food allergies increased by 50% between 1997 and 2011.
“No one knows for certain the cause of food allergy, but we do know that a child having one or more parents with any form of allergy—whether it’s to pollen or pet dander—can increase the child’s risk of developing an allergy to food or inhalant allergens by as much as 80%,” says Sally Joo Bailey, an assistant professor at the Georgetown University School of Medicine, whose practice, Allergy Associates of Northern Virginia, is located at Virginia Hospital Center in Arlington.
Food allergies also tend to be more common in kids who have other allergies such as eczema—a red, itchy, dry rash that persists.
Researchers have recently started looking at the microbiome—the genetic material of the bacteria, fungi, protozoa and viruses that live inside the human gastrointestinal tract—for clues.
“One more novel hypothesis that’s gaining interest is epigenetics,” Bailey says. “The concept that your gut microbiome and the foods you eat can determine which genes are transcribed and activated, thus determining if you’re allergic or tolerant of a food.”
Allergies are most commonly identified via a skin test (also called a scratch test) in which tiny samples of proteins from, say, pollen or certain foods, are introduced to the skin via pinpricks to see if they cause a reaction. Blood tests may also be used for diagnosis.
After an allergy is confirmed, Bailey works with patients and their families to develop a “food allergy action plan,” which states which foods to avoid, when to administer epinephrine or antihistamine, and the recommended dosage of medicine if the child is exposed to an allergen and has a reaction.
“All patients should call 911 after using epinephrine,” Bailey advises. “Due to a 30% risk of a biphasic reaction—a second wave of severe anaphylactic reaction that can occur after the initial reaction—patients should be monitored for four to six hours in the emergency room afterward and should carry two epinephrine devices at all times.”
But an emergency plan generally doesn’t cover the tricky and potentially perilous social situations that can lead to an emergency—such as grandparents who don’t believe in food allergies. Or what young kids should do if they’re at the house of a new friend and that friend’s mom or dad serves a meal they can’t eat. Or how to navigate a classmate’s birthday party if they need to inspect the package that the sheet cake came in to check the ingredients.
Children are taught to be polite to adults; children with allergies have to be taught to advocate, sometimes forcefully, for themselves, says Jennifer Pedicano, an allergist and immunologist with offices in Falls Church.
Complicating the issue is societal confusion about what, exactly, constitutes an allergy and what is just physical intolerance.
Some adults who say they avoid gluten may do so for dietary reasons rather than because they’re truly allergic. Lactose-intolerant people may experience intestinal distress after eating milk products, but they generally aren’t at risk for anaphylaxis, which can be fatal.
“I’m very straightforward with patients and their parents. A food allergy is a life-threatening diagnosis,” Pedicano says. “If your relative doesn’t agree, you have to put your foot down and say your child won’t eat there. Food allergies need to be taken seriously.”
Eli Waldman, a senior at Yorktown High School, has celiac disease—he can’t eat anything made with wheat, rye, barley, malt or oats—and a severe peanut allergy. When he was younger, he found himself in the uncomfortable position of interrogating his friends’ parents about their cooking methods: Were there traces of wheat in the pot they used? How about on the knives or other utensils? Any peanuts or peanut products in their kitchens?
In fifth grade, he remembers a classmate “thought it would be funny to chase me around the room with a peanut cookie and try to put it in my mouth,” he says. (That student landed in the principal’s office.) “I was mortified.”
In science, Waldman couldn’t work on a project constructing a tectonic plate with cookies. “I just remember feeling really isolated and ostracized from other kids,” he says. “At that age, everybody just wants to fit in.”
Waldman found a peer support group at Children’s National Hospital, where the kids exchanged tips on topics such as how to question waiters and waitresses about ingredients and how to handle food at summer camp.
Inspired, he decided in eighth grade to start a similar group for students in Arlington schools. “I wanted to help those younger kids avoid the kinds of experiences I had, to show them you can still go out to lunch with friends,” he says. “I really wanted to do the best job I could to make sure elementary school kids could get a head start on living an active, fun and productive childhood and not limit themselves.”
The groups typically meet once a month at Nottingham and Discovery elementary schools in Arlington (kids who attend other schools are welcome), and there are no adults in the room—only student facilitators. Waldman leads discussions about how to manage food allergies while traveling, or during holidays like Halloween and Christmas. He teaches participants how to read food labels, and they act out scenarios about what to do if an adult offers them food they can’t eat. Once he graduates—he’s heading to Stanford University this fall—he’ll hand the lead facilitator role over to group member Grace Joseffer, a rising freshman at Washington-Liberty High School.
With food allergies on the rise, advice for parents has shifted. For years, doctors recommended that parents avoid introducing peanuts to children until at least 3 years of age. That changed in 2015 when the American Academy of Pediatrics began suggesting that parents instead start feeding peanut-containing foods to babies ages 4 to 11 months to help prevent allergies.
The about-face came in the wake of a study in the United Kingdom that compared the differences between children in the U.K. versus children in Israel. Researchers found that Israeli kids whose parents fed them a peanut-based snack called Bamba from about 7 months of age and up were less likely to develop peanut-based allergies than kids in the U.K. whose parents avoided giving them anything with peanuts until at least a year after they were born.
Federal, state and local officials in the U.S. have taken note. In 2013, as part of a food-safety bill that Congress approved in 2011, the CDC developed a guide for schools on how to manage food allergies in students.
After the 2012 death of 7-year-old Ammaria Johnson, who went into cardiac arrest at her Richmond-area elementary school when she ate a peanut, Virginia state law now requires that all K-12 schools stock epinephrine for children who don’t have their own prescription injectors at their schools.
Arlington and Fairfax County public schools have lengthy policies on food allergies, including an advisory that schools avoid using food as a reward or celebratory focus. Sharing or trading food in class isn’t allowed.
The policies also include ideas for creating food warning signs for cafeterias, as well as detailed instructions for adults on how to use an auto-injector on a student in the throes of an anaphylactic reaction.
Falls Church City Public Schools doesn’t have a specific policy that covers food in classrooms, says Food Services Director Richard Kane, but the protocol does include “allergy tables” in elementary school cafeterias, and each school has a list of all students with allergies. So, if a child puts an item on their tray that they’re allergic to, a cafeteria worker will remove it.
Kane says that to his knowledge, FCCPS has never had an incident of a child having a severe allergic reaction to something served in school. “If you start eliminating for every allergy, you end up with almost nothing able to be served in schools,” he says. “Kids, especially in elementary schools, are taught to share. That’s hard to break.”
Food allergy Research & Education, a McLean-based nonprofit funded by individual and corporate donors, says there’s a need for more legislation covering food allergies. The group supports the FASTER Act, a bill introduced in Congress last year that calls for a study to determine the economic costs of food allergies. The same bill seeks to add sesame to the list of allergens recognized by the Food and Drug Administration—which would require it be included on food-label warnings.
The group also is hoping to persuade airlines to stock auto-injectors on all flights, says CEO Lisa Gable.
Recently, parents of kids with peanut allergies got some good news: The FDA in January approved the first drug to address potentially life-threatening reactions to peanuts. Called Palforzia, it is approved for children ages 4 to 17, and involves an oral immunotherapy regimen in which kids ingest gradually increasing doses of peanut protein to desensitize their allergies.
The drug isn’t for everyone—it must be taken under a doctor’s supervision, and the risks include severe allergic reactions. Patients are advised to not exercise or take a hot shower for several hours after each dose. The drug doesn’t “cure” the allergy—it just reduces the severity of the reaction if a patient is accidentally exposed to peanuts.
Nevertheless, researchers call it a huge step on the road to a new generation of food allergy treatments, perhaps ones that target particular molecules in the immune system.
“I’m optimistic,” says Hemant Sharma, chief of the division of Allergy and Immunology at Children’s National.
“The field has progressed so much in the past decade.”
Other oral immunotherapy trials are exploring mitigating treatments for egg allergies. Annie Keffer’s son Jack, who was diagnosed when he was 2½, is part of one such trial in Chantilly. Now a fifth-grader at Nottingham Elementary in Arlington, Jack has an allergy so severe that he can’t eat anything made with eggs, including bread products like hamburger buns or pizza crust.
At 4, Jack was diagnosed with leukemia. He’s in remission now, but the allergy remains. Keffer says her son hates the fact that he’s allergic to eggs, but “at his age, he’s super responsible. He just kind of owns it, and he doesn’t trust a lot of other people [when it comes to food safety]. He wants to read the label himself.”
Keffer keeps eggs in the house; when she makes scrambled eggs for herself, Jack heads to the basement and plays video games. He says the smell makes him feel bad.
Now 10, Jack says having an allergy is “annoying—like at a birthday party, when all my friends are having cake and I have Oreos. It’s just not fair that other kids get to have cake and I don’t.”
The Keffers do eat out, but they have a limited repertoire. Chipotle and Jersey Mike’s are their go-to restaurants. Jack’s palate is bland as can be—if it’s chicken, he wants nothing on it. If it’s rice, he insists there be no sauce on top. Overnight camps with his friends? Out of the question. “I couldn’t sleep a wink, and he couldn’t eat anything,” his mom says.
During a recent visit to the doctor, Keffer asked what precautions Jack will need to take once he’s older. She was shocked—and saddened—when the doctor said that kissing would be an issue.
“He can never do anything on a whim,” she says. “Nothing is going to be easy for this kid.” n
Lisa Lednicer, a writer in Arlington, is married to a man who is allergic to fish, shellfish, most beans, almost all beers, coconut and pineapple.