The New Rules for Food Allergies
Nut-free schools. Treatless birthday bashes. Restaurant menus with asterisks. As food-allergy rates have soared, the way we feed all kids looks a lot different than it did even a few years ago.
The call came into Jenness Stock's office from the kindergarten room downstairs: A student couldn't stop coughing -- could the nurse take a look at her? Stock, who at the time oversaw 650 students at two Waukegan, Illinois, public schools, found the little girl coughing noisily between sips of water. In her classroom, the other kids were eating African and Asian dishes as part of a cultural-studies unit.
"My tongue feels too big for my mouth," the girl said. Her face was red around her lips, and Stock's heart skipped a beat. "Food allergy," the nurse instantly thought.
Stock raced back to her office and saw the child had no allergy paperwork on file, much less a prescribed EpiPen, the injectable form of epinephrine, widely used to halt a severe allergic reaction. Luckily, Stock had two spare EpiPens in her office -- and a standing order to use one in this very sort of instance. She grabbed one and sprinted back to the classroom, where the girl had begun to develop hives across her face. "Hold my hand, honey, this is going to hurt," said Stock, and she jammed the tip of the injector into the girl's thigh through her cotton pants. The child yelped, but within minutes her coughing subsided and the red patches started to fade. An ambulance soon arrived to take her to the hospital for observation. Later, an allergist confirmed that she had a previously unknown allergy to the peanuts used in one of the foods served at school that day.
The kindergartner was potentially saved not just by Stock's swift thinking on that October 2011 day but also by an Illinois state law, passed just weeks earlier, requiring school nurses to have spare EpiPens on hand. According to the Asthma and Allergy Foundation of America, Illinois is one of 38 states that have passed laws requiring or allowing schools to keep epinephrine auto-injectors at the ready and to use one when a student seems to be experiencing a life-threatening allergic reaction, whether the child has a known allergy or not. Many states were prompted by an incident in 2012, when a Virginia first-grader, Amarria Johnson, ate a peanut that a friend offered her on the playground and quickly developed hives and breathing problems. She had a known nut allergy but no prescription pen at school, and the state's policy at the time discouraged educators from giving a child medication prescribed for someone else. Amarria stopped breathing before an ambulance arrived and then died at the hospital.To nudge holdouts into action, Congress passed the School Access to Emergency Epinephrine Act, which gives financial incentives to states with epinephrine-stocking laws. When President Obama signed it last November, he used the occasion to comment publicly for the first time that his daughter Malia has a peanut allergy. He added that regardless of one's personal experience with food allergies, "making sure that EpiPens are available in case of emergency in schools is something that every parent can understand."
The law is a leap forward for allergy awareness. And yet, the law and the tragic stories that inspired it speak to a sobering truth about food allergies in 2014: We still need to do more to protect kids from potentially life-threatening reactions. "This is a condition that's managed not so much medically but by a community of supportive adults who help prevent allergic reactions by label-reading, hand-washing, and enforcing no food sharing and who are trained to assist in an emergency," says Lynda Mitchell, vice president of Kids With Food Allergies, a division of the Asthma and Allergy Foundation of America.
One in 13 kids is now affected by a food allergy -- a 100 percent jump from just 15 years ago -- meaning that one or two of the kids in any given setting is allergic. While some have only had mild reactions, such as an itchy mouth, hives, or upset stomach, 40 percent of allergic kids have had a severe reaction, including life-threatening anaphylaxis, which usually involves symptoms such as a rash, hives, swelling of the lips or tongue, vomiting, abnormal heartbeat, and trouble breathing. And all children are vulnerable. One-quarter of reactions at school occur in kids who have never been diagnosed with an allergy. "Any person who's had a mild allergic reaction has the potential to have a major reaction in the future," says pediatrician Hugh Sampson, M.D., director of the Jaffe Food Allergy Institute at Mount Sinai Medical Center, in New York City, and a Parents advisor. "But we still have no good way of predicting who will have such reactions or when they will occur."
As a result, more schools are developing policies to prevent allergic reactions and to train staff to handle emergencies. There are now national model guidelines for school food-allergy management available from the Centers for Disease Control and Prevention. Some parents are pushing for a total ban of peanuts, the most common and deadly allergen, in schools. (Other problem foods include milk, shellfish, and tree nuts.) They argue that nut-free cafeteria tables, which are more customary than a school-wide nut ban, are socially isolating and tough to police. There are also calls for food-free classroom celebrations and more organized plans for emergencies beyond the cafeteria.
Dr. Sampson's colleagues found in a 2013 study that one in three allergic kids are bullied about their allergy. As a result, many advocates are pushing for sensitivity training in schools and a little more parent-to-parent understanding. Because let's face it: Denying your own child a PB&J or cupcake is hard enough; asking other parents to do the same for their child can be cringe-worthy. Indeed, a new survey of teachers from the National PTA found that 28 percent are frustrated with parents for not being more sympathetic to the needs of their child's allergic classmates, and 71 percent have had to buy a safe snack for a child who was unable to eat a treat served in the classroom.
And yet, to a parent like me, who hasn't sat in an allergist's office, rules about what's allergy-friendly and what's not can be mind-boggling. Thanks to a flurry of research about what may cause allergies, messages to new moms about how they should feed themselves and their kids seem to change constantly. (Suffice it to say I had three babies in the past eight years and a different relationship to Reese's Peanut Butter Cups each time.)
All parents need to understand, and be understanding about, food allergies. Reactions can start at any age, and even if your child doesn't develop an allergy, one of his friends likely will. What's more, researchers are now homing in on ways to reduce the risk of reactions before they even occur. With the help of top docs and in-the-know parents, these facts can help all kids thrive in an allergic world.
If You're a New or an Expecting Parent
NEW RULE: Eat your veggies, plus fish and even nuts, while pregnant. Children with one or two parents who have any type of allergy are at higher risk for a food allergy, but many kids with allergies have parents with no issues at all. So researchers are working hard to identify the things in our environment that may affect risk, and recently landed on a powerful protective factor: a balanced pregnancy diet. In fact, studies have shown that consuming large amounts of unhealthy food while pregnant can even increase your child's risk of allergies. On the flip side, it seems that pregnant moms can reduce their child's risk by eating a Mediterranean diet, including lots of vegetables, fish, and healthy fats, like olive oil and -- if you aren't allergic to them yourself -- nuts. While doctors used to counsel against this, "early exposure seems to confer a protective benefit to the fetus, though more research is needed to prove this," says Kari Nadeau, M.D., associate professor of allergy and immunology at Stanford University School of Medicine.
NEW RULE: Don't be a clean freak. Many scientists think that our increasingly sanitized lives may not properly prepare a budding immune system, causing it to overreact to harmless food proteins. Drs. Sampson and Nadeau recommend bypassing antibacterial soaps and harsh household cleaners in favor of good old soap and hot water.
NEW RULE: Offer a variety of tastes early and often. In 2000, the American Academy of Pediatrics (AAP) advised all parents to wait until their baby was 2 to introduce eggs, and until age 3 to give nuts and shellfish. But now, the AAP supports giving these foods around 6 months along with others, even in kids with a family history of reactions (taking care to avoid choking hazards and offering them one at a time, of course). "Introducing a diversity of foods at a young age might actually help protect against allergies. We're not sure why, but it may train a child's immune system to not respond to any one protein as a threat," says Dr. Nadeau. Still, she advises parents of kids with a family history of food allergies to ask their doctor for help creating an eating plan and to look out for reactions to newly introduced foods.
NEW RULE: See an allergist if you suspect a food allergy. In the meantime, start a food log. Kids often show warning signs of a food allergy before they have a full-blown reaction. Rashes in young infants are a red flag: 37 percent of kids with eczema have a food allergy, and dry, red, itchy patches on the cheeks may be the first sign of eczema, says Dr. Sampson. Frequent tummy troubles and vomiting in infants should also raise suspicion. If your child shows any of these symptoms, see an allergist (consult the "physician finder" tool on the American Academy of Allergy, Asthma & Immunology's website, aaaai.org). Before the appointment, note what your child eats and when worrisome symptoms occur. "Both blood and skin tests can result in false positives, so results must always be interpreted in the context of the patient's everyday symptoms," says Sakina Bajowala, M.D., an allergist in North Aurora, Illinois, who writes the Allergist Mommy blog.
If Your Child Has Been Diagnosed
NEW RULE: When in doubt, use epinephrine. A big mistake even savvy parents make is waiting too long to administer epinephrine when they suspect an allergic reaction. Anaphylaxis can kill within minutes. "If a child has more than one symptom, for example vomiting and hives, or any breathing problems at all, or you're just worried enough to consider using epinephrine, use it," says Dr. Sampson. Any side effects are minimal -- nausea, increased heart rate, headache -- and are no worse for children who turn out not to have an allergy. If your insurance will cover it, keep two doses at home and at school, since one shot may not be enough to halt a reaction. "Kids with serious allergies should also always have their epinephrine with them on playdates or at activities outside of school," says Dr. Bajowala. If another adult is in charge, make sure he knows exactly where your child's epinephrine is (down to the specific pocket in her backpack), and how and when to use it. EpiPens have easy-to-follow instructions written on the side, while a newer product, Auvi-Q, actually talks you through an injection.
NEW RULE: Stand up for your child's rights at school. Once there's a diagnosis, the doc should write an emergency-care plan: instructions on how to avoid allergens and how to handle a reaction. Give a copy to the school nurse with the epinephrine, says Mitchell. "The nurse will be your point person for organizing a meeting that includes you, your child's teachers, and the head of the cafeteria to go over what precautions are already taken, such as cleaning cafeteria surfaces, and what additional measures are needed to protect your own child." (No school nurse? Start with your principal.) If the school's response falls short in any way, Mitchell recommends asking for another meeting to request a 504 evaluation. Section 504 of the Rehabilitation Act of 1973 requires that no child with a disability be prevented from participating fully at school (public or private). A 504 Plan can document more detailed expectations for the school, often including procedures for handling food in the classroom, not just the cafeteria.
NEW RULE: Don't assume a food allergy is forever. Most kids outgrow their allergies to cow's milk, eggs, soy, or wheat by age 16. But for reasons scientists don't fully understand, only 20 percent of peanut-allergic kids and 10 percent of tree-nut-allergic kids do. Studies are underway to improve those odds with a treatment called oral immunotherapy (OIT). By having a child swallow tiny and then incrementally larger doses of one allergen -- like peanut or milk -- every two weeks, "we train the allergic cells to become less allergic," explains Dr. Nadeau, who's performing clinical trials on OIT at Stanford. Like shots given for environmental allergies, food-allergen immunotherapy works by helping the body build a tolerance to an allergen. But some treatments need to be given daily and can take longer to work. And because it's possible for kids to have a severe reaction during treatment, immunotherapy must always be done by a specially trained professional (whereas environmental allergy shots are sometimes given by a pediatrician). Once the regimen is finished, kids need to be continually exposed to the food; if they aren't, the allergy can return.
For many kids, immunotherapy can be life-changing. "Before, we used to walk around saying 'Can't eat here,' 'Can't go there,' " says Diane Eiger, of Los Altos, California, whose son, Alex, now 9, was allergic to multiple tree nuts and peanuts when he started immunotherapy with Dr. Nadeau three years ago. Today, he can eat all of these foods without a reaction. "Now we can go to a deli or get Chinese food on a whim, and I don't have to buy the same 'safe' chocolate bunny for his Easter basket every year," says Eiger. Alex's first donut, at 71/2, was particularly memorable. "It was just a plain old glazed donut, but he grinned and closed his eyes like it was the best thing he'd ever eaten in his life," Eiger says. "It makes you realize just how much these kids miss out on."
If You Know a Child With a Food Allergy
NEW RULE: Teach your child to respect the way other kids eat. For many kids with allergies, social challenges start when lunch periods begin. When her son, Gavin, was in kindergarten, Mariel Reyes read kid-friendly books about food allergies to his classmates in Round Rock, Texas, to help them understand why he couldn't eat or touch any peanut butter. But now that Gavin's in second grade, "I can't really go in and read Allie the Allergic Elephant," Reyes says wryly. "It gets harder socially as kids get older. They like to joke around. And they get more curious, not always in a good way." Reyes realized this last year when she was planning Gavin's birthday party and he told her that he didn't want to invite two particular classmates, formerly good friends, because they had been telling him at recess that they wanted to put peanut butter on him to see what would happen.
Other kids get teased because their food looks different. Keeley McGuire recalls the day her peanut-allergic daughter, whose name she wants to keep private, came home from first grade in tears last year. "She said she hardly ate at school the last two days because a boy had been making fun of her lunches and snacks, leaning over and pretending to vomit in her food," says McGuire, of Kalamazoo, Michigan, who writes a blog about allergy-friendly meals and treats. "I remained calm, spoke about learning to ignore others, and reminded her why we pack the yummy snacks we do. But it was heartbreaking."
All parents can help by reminding their nonallergic kids that a food allergy is a difference just like any other and should be respected. Lynda Mitchell remembers fondly how a particularly progressive group of teachers at her son Matt's elementary school in the 1990s told classmates that "everyone needs to be this little boy's friend and help protect him." By engaging their help, they gave kids a sense of importance that led to action: One day in first grade, a little boy ran up to a teacher and reported that Matt was having an allergic reaction.
- Watch a video from Food Allergy Research & Education (FARE) about kids who are bullied for their food allergies.
NEW RULE: Put yourself in an allergy parent's shoes. Moms and dads of kids with food allergies often say it's not so much other children who don't get it, but grown-ups. In the past year, parents in Florida picketed their school to protest nut-ban and hand-washing policies that had been instituted to protect a severely allergic student, and a Michigan mom sued her child's school for banning peanuts and tree nuts (the case was dismissed). But such insensitivity is often more subtle. "You can tell when other parents are a little annoyed by a request," says Holly Peery, of Fulshear, Texas. Peery's sons are 8 and 6; both have food allergies, one to peanuts and the other to multiple foods including eggs, corn, dairy, wheat, and soy. "You worry about whether your child is going to be asked to a playdate because it's so difficult to feed him. Then there are other people whose eyes just glaze over when you tell them about what he can't eat, and you may have to say 'no' to that playdate. It can be socially isolating at times."
One thing on every allergy parent's wish list is a supportive circle of moms and dads who can distinguish a true health hazard from a hassle. "Being compassionate and simply asking questions about how our kids can be included makes a huge difference," says Eiger. If you're hosting a party or school snack, send a quick e-mail or text to let a parent of a child with allergies know what you're serving (you don't have to offer to bring an allergen-safe treat, though that would be extra kind). For a playdate at your house, ask the parent for directions for meals or snacktime and what should be done in the event of an emergency. It's also wise to keep an over-the-counter antihistamine like Benadryl or Zyrtec in your home, says Dr. Sampson. "If you suspect your child or a guest is having a mild reaction from a food, like a few hives or nasal congestion, you can start with a dose of an antihistamine and call the doctor. But if there's any sign of a respiratory problem, or more than one symptom going on at once, give epinephrine, if it's available, and call 911."
The food-allergy epidemic may have one silver lining: It encourages all of us, and our kids, to think more selflessly. Keeley McGuire will never forget a moment at her daughter's school when she was volunteering with a dad whose son was in her girl's first-grade class. "He told me he was thankful -- thankful! -- that our kids were in the same class the year before, and that my child's allergies taught his son empathy. I started to tear up. The world needs more people like that."
Eating Out Safely
--Look online for restaurants. Allergyeats.com includes families' reviews about their experiences. Some chains, like Qdoba and KFC, post their allergen-containing menu items. Chipotle's food has no eggs, fish, shellfish, peanuts, or tree nuts.
--Call ahead to get a sense of the menu and allergy policies. Specifically ask how confident the restaurant is that it takes steps to avoid any cross-contamination.
--Look your waitperson in the eye when asking about the menu. "If there's any question -- for instance, if the waiter says, 'Well, there shouldn't be egg in that' -- don't order the dish, and think about going somewhere else next time," says mom Diane Eiger. Speaking to the chef is usually the safest route to accurate information, she adds.
--Choose vacation sites that have experience dealing with allergic kids. Disney World has a special-diets hotline (407-824-5967); you can also read policies at disneyworld.com (search "special dietary requests").
--Before you book a flight, call the airline to see what snacks are served. And because other travelers may eat your child's off-limits food, bring extra epinephrine and wipes to clean off all surfaces in your row. "I politely ask the person next to Collin if he would mind not eating nuts because of a severe allergy," says mom Holly Peery. "It's awkward but important."
Recognize an Allergy Emergency
These are things children might do or say if they're experiencing anaphylaxis -- which should warrant an injection of epinephrine, if available, and a call to 911 -- according to experts at the nonprofit Food Allergy Research & Education (FARE).
Children age 2 and under might ...
- Put their hands in their mouth
- Pull or scratch their tongue
- Make a hoarse or squeaky noise
- Scratch their ears (or behind them)
Older kids may say ...
- "My mouth feels funny."
- "There's something stuck in my throat."
- "My lips feel tight."
- "My tongue is hot [or burning]."
- "My mouth [or tongue] itches."
- "It feels like there's hair on my tongue."
- "It feels like there are bugs in my ears."
Originally published in the September 2014 issue of Parents magazine.