Living With Food Allergies
Breakthroughs in research have the potential to radically alter life for children who can't eat certain foods. Until then, this is what doctors and fellow parents want you to understand.
When Lissa Roberts's daughter Reagan was only a few weeks old, she developed fire-engine-red eczema from head to toe -- and no one could figure out why. At her pediatrician's suggestion, Roberts eliminated cow's milk from her own diet, then stopped breastfeeding and tried several different formulas. Nothing worked. Finally, when Reagan was 15 months old, tests revealed that she had a life-threatening allergy to cow's milk, eggs, and peanuts. Since then, milk has been the hardest to avoid. "There's some form of milk in so many foods," Roberts explains. "If someone who had milk on her hands so much as touched Reagan's cheek, she'd break out in hives." One sip would leave her vomiting and gasping for breath. "Every parent worries about her child's health," says Roberts, a mother of two in Ellicott City, Maryland. "But when you have a highly allergic child, it's a whole different level. You're scared to let your child out of your sight."
Like other kids with severe food allergies, Reagan would sit, often by herself, at the milk-free table during school lunch and snacktime. She'd tote her own cupcakes to parties, and restaurants were off-limits. "Some have allergy menus, but the possibility of cross-contamination (like someone accidentally using the same spatula to make an egg dish and an egg-free dish) was too risky," says Roberts.
That was then. Today, Reagan, now 11, can have all the milk and ice cream she wants. The best day of her life? When she could finally eat pizza -- with real mozzarella cheese -- thanks to a revolutionary treatment for food allergies being developed at Johns Hopkins Childrens' Center, in Baltimore, by Robert A. Wood, M.D., chief of pediatric allergy and immunology. (A few other medical centers in the U.S. are also using the therapy.) Still in clinical trials, this so-called oral immunotherapy involves slowly desensitizing the immune system of highly allergic children by feeding them gradually increasing amounts of whatever they're allergic to, such as milk, peanut, or egg proteins, and slowly boosting their ability to tolerate the foods.
Each week for a year, Roberts took her daughter to Dr. Wood's office. There, under close supervision, Reagan was given slowly increasing amounts of milk protein mixed with a chocolate or strawberry drink. She also got another premixed dose every evening, upping the amount in carefully calibrated increments. From time to time, the doctor checked her blood levels for antibodies to milk; if they dropped, that was a good sign. "We were both excited and terrified," says Roberts. "It's scary to watch your child eat something that for years you knew could end her life."
Though shots for seasonal allergies (also known as immunotherapy) are standard practice, the approach has proven risky for food allergies because reactions to the shots were too severe to justify continuing experiments. That's why the success of the oral approach is such big news. "It has the potential to change, and save, children's lives," says Dr. Wood. The treatment is at least ten years away from widespread use -- and not something to be tried at home -- but food-allergy experts haven't been this excited in a long time.
Another new development: In September 2019, the FDA recently supported the development of PALFORZIA, an oral immunotherapy drug produced by Aimmune Therapeutics, Inc. The drug is targeted at those age 4-17 years old with a peanut allergy. It exposes kids to a small amount of peanuts every day, which should help build a tolerance and lessen the severity of symptoms after exposure.
Five years ago, there wasn't a lot of research on preventing or treating food allergies. Thanks to groups such as the Food Allergy Initiative, which aims to find a cure by funding major studies, researchers know more than ever. "We never thought we'd get this far," says Wesley Burks, M.D., chief of pediatric allergy and immunology at Duke University Medical Center, in Durham, North Carolina, who's overseeing immunotherapy trials. "Will we find a cure? We're cautiously optimistic."
One recent breakthrough comes from Parents advisor Hugh Sampson, M.D., director of the Jaffe Food Allergy Institute at Mount Sinai School of Medicine, in New York City, who led a study suggesting that between 75 and 80 percent of children with a milk allergy can tolerate foods containing milk proteins if they're baked and therefore extensively heated. What's more, when kids eat these items they also develop a tolerance to all milk products. Dr. Sampson is now conducting another study to confirm this. If the finding turns out to be true, "it will change the current paradigm for treating milk-allergic children," he says.
But the urgency for research has been driven by unsettling statistics. One study found that nearly 8 percent of children under age 18 have food allergies. Another reported an 18 percent jump in food allergies in kids of the same age over a period of a single decade. Doctors aren't sure what accounts for the spike in cases, though everything from environmental pollutants to society's obsession with hygiene has been blamed. With the help of experts from The Food Allergy & Anaphylaxis Network (FAAN), a 25,000-plus-member Fairfax, Virginia, nonprofit that provides awareness, advocacy, and education and advances research, we've gathered the latest thinking on a complicated, highly charged subject that, one way or another, now affects all parents.
Doctors aren't sure what accounts for the spike in cases, though everything from environmental pollutants to society's obsession with hygiene has been blamed. With the help of experts from The Food Allergy & Anaphylaxis Network (FAAN), a 25,000-plus-member Fairfax, Virginia, nonprofit that provides awareness, advocacy, and education and advances research, we've gathered the latest thinking on a complicated, highly charged subject that, one way or another, now affects all parents.
A Scary Reality
Having a child with a food allergy exacts a huge emotional toll. "You think about your life in two parts," says Maria L. Acebal, the CEO of FAAN, whose 10-year-old daughter has a severe peanut allergy. "There's the time before you got the diagnosis, and the time after you found out that a crumb of a peanut-butter cookie could kill your child. That discovery changes everything: birthday parties, school trips, grocery shopping, and holidays with your family." Parents struggle to raise their children with some semblance of normalcy -- without driving themselves, their kids, schools, and other parents crazy.
"Each day you cross your fingers and pray nothing happens," says Nicole Lenner, a mother of four in Short Hills, New Jersey, whose son Isaac, 9, has multiple life-threatening allergies. "Those first few months were a nightmare. I was petrified and in denial. I didn't think I was up to the task of monitoring every morsel of food that came near my child." Today, she's a veteran who's made it her mission to educate family, friends, and teachers: "Most of us know very little about food allergies -- until we have to."
Kids have an allergic response when their immune system overreacts to foods that are usually harmless. Symptoms often appear within minutes, though it can take as long as two hours. They range from a mild rash, tingling in the mouth, and diarrhea, cramps, and bloating, to anaphylaxis, a potentially fatal reaction in which several systems of the body (lungs, stomach, skin, heart) react simultaneously. "When that happens, you can't wait to see if it gets worse. You use the EpiPen and then rush to the hospital," says Lenner, referring to the device with a dose of the drug epinephrine. Injected through a child's clothing into his thigh, it can stop anaphylaxis. Doctors suggest having two EpiPens to be safe. Isaac wears his on his belt; his teacher and the school nurse each have one too.
While just about any food can trigger an allergic reaction in children who are predisposed to it, roughly 90 percent of reactions are caused by the foods known as The Big 8: milk, eggs, peanuts, tree nuts (pecans, almonds, walnuts, cashews, pistachios), fish, shellfish, soy, and wheat. "Food allergies are now occurring earlier in life -- often before 18 months," says Dr. Burks, a member of FAAN's medical advisory board. And as our palate becomes more sophisticated, the list of foods kids are allergic to is growing too. Dr. Burks adds, "Twenty years ago, we didn't see allergies to kiwis and sesame, but now we do."
Parents whose child's allergies showed up in infancy almost always report that their doctors, as well as some friends, family members, and other parents, had initially dismissed their child's symptoms as colic, reflux, rashes, or cradle cap -- and pegged them as nervous moms. This should happen less frequently now, because last year the National Institute of Allergy and Infectious Diseases released the first-ever guidelines for diagnosing and managing a food allergy. "The guidelines provide quick and essential information to doctors who need to be up to speed on managing food allergies," says Acebal.
If your child is tested, it's important to know that the result may not be the final word. "Skin and blood tests yield so many false positives that they are not entirely reliable," says Dr. Sampson, who is also FAAN's medical director. "No doctor should do just one test and tell you that your child can't eat a particular food. Many puzzle pieces, including skin and blood tests and a detailed medical history, must fit together," he adds.
Some kids outgrow certain allergies by age 10, sometimes much sooner. But research shows that just 19 percent of children with a milk allergy outgrow it by age 4; by age 16, nearly 80 percent outgrow it. Only about 10 to 20 percent of young kids with peanut, tree nut, and shellfish allergies ever get rid of the allergy altogether, says Dr. Sampson. So it's crucial to teach children what to look for and avoid.
Why Empathy Is Essential
For parents whose kids do not have a life-threatening allergy, it can be hard to grasp what all the fuss is about. The blogosphere is filled with gripes from those who feel parents' fears are overblown and resent being told what their own child can and can't bring for lunch or snack.
"Many schools now have effective policies in place," says Dr. Wood, who's in favor of a commonsense approach. "Nut-free schools or milk-free tables are important for preschoolers, who don't keep their hands to themselves. But by the time kids are in elementary school, they need to know how to fend for themselves in the real world." Still, only a handful of states have passed even basic guidelines for school personnel to help them recognize and treat food allergies. If your school hasn't done that yet, direct the staff to a free, interactive online course recently produced by FAAN and several other food-allergy groups at allergyready.com.
Meanwhile, parents must think of everything: What are kindergartners feeding the hamsters? Have those old peanut-butter jars been sanitized before markers are stored in them? Does the science project involve food?
Living with an ever-present fear of dying is not something most of us think about, let alone want our children to. But experts insist that those kids who are taught in an age-appropriate way how to stay safe, who have their medications with them, and who trust that the people around them know what to do, will be fine. In fact, many kids with severe allergies have a gaggle of peers who look after them. "At parties, Reagan's friends watch out for her," says Lissa Roberts. "They see what's being served and then run up and say, 'Be careful. Reagan can't have that!' Of course, she doesn't always like it when they do that -- but I sure do."
Hosting a Child With Food Allergies
Parents of kids with allergies will usually call before a party or a playdate to find out what you're serving. Help them out by:
- Calling or e-mailing first, or including a note with the party invitation saying that you're aware of their child's allergies and asking for specific info about what to do.
- Buying foods allergic kids can eat. Even mainstream supermarkets can carry a range of allergy-free products. Or go to divvies.com for sweets and popcorn; dumdumpops.com for lollipops and candy canes; vermontnutfree.com for gourmet chocolates; and peanutfreeplanet.com for cookies, doughnuts, breads, and pretzels.
- Saving boxes or wrappers from packaged foods, including cake mixes and decorations, so you can answer questions about the ingredients.
- Giving non-food options such as stickers, pens, or inexpensive puzzles as party favors.
Protecting Your Child at School
If you haven't already, file a Food Allergy Action Plan with the nurse's office that lists your child's allergies and medications.
You may want to band together with other parents of kids with food allergies to meet with all school personnel -- including food-service staff and even substitute teachers, if possible -- so everyone knows exactly what steps to take in the event of an emergency. If you feel the school is not providing a safe environment, you may need to implement a more formalized process (called a 504 plan). These are based on federal disability and civil-rights laws and require a school to follow specific procedures.
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