The truth about child food allergies, on Babble.com.Adrienne Martini
Hyper food mom, with her litanies about allergies and sensitivities and intolerances, seems harmless enough. But what happens when a child’s food issues aren’t a matter of discomfort or paranoia? Hyper food mom pollutes the discussion of true food allergies and makes other adults less likely to lend credence to the needs of kids with genuine food allergies, a very real new epidemic.
Roughly 2.2 million kids in the U.S. have a life-threatening food allergy, according to the Food Allergy and Anaphylaxis Network. Eight common foods – peanuts, tree nuts, eggs, dairy, fish, shellfish, dairy and soy – trigger 90% of these reactions. A mere molecule of the offending protein is enough to send an allergic kid into anaphylactic shock, which can result in death.
When my first kid was diagnosed with the digestive disorder Celiac Disease, I became hyper food mom. I snapped at a friend who started to stir my kid’s pot of gluten-free pasta with the same spoon she used to stir the regular stuff. For the first few weeks after my daughter’s diagnosis, I have no doubt that there was some serious eye-rolling. Eventually, I got some perspective. Celiac Disease, while it requires a certain amount of dietary vigilance, isn’t life-threatening.
True food allergies, on the other hand, are. And yet, they’re often confused with food intolerances. Take dairy. A lactose intolerance is when the digestive system is unable to break down large amounts of milk sugar, or lactose; it’s caused by a shortage of the enzyme lactase. Gastric complaints like extreme gas, bloating and diarrhea are common. A dairy allergy, on the other hand, is based in the immune system, which treats the foreign proteins like attacking Huns and starts shutting down the body’s systems (like the respiratory or circulatory) in order to contain the uprising. Once this cascading reaction occurs, it can be extremely difficult to stop. Injectable epinephrine – either in an EpiPen(TM) or a Twinject (TM) – can stabilize someone long enough to get him to a hospital.
In short, intolerances can be remarkably unpleasant. Allergies can be deadly.
And the number of kids with food allergies is exploding – doubling between 1997 and 2002, according to the Department of Pediatrics at Mount Sinai School of Medicine – yet no one is certain why. The most current theory is the “Hygiene Hypothesis,” the idea that kids need to be exposed to potential allergens at a young age, and that most parents keep their homes too clean to allow this to happen. But there is no clear consensus about the reasons behind this rise. Other researchers point to the increased use of pesticides and other environmental chemicals. Still others blame immunizations and antibiotics.
“The bottom line to that question is that we really don’t know,” says Dr. Paul Hannaway, an Assistant Clinical Professor of Medicine at Tufts University and author of On the Nature of Food Allergy. We have even less information about potential cures.
“The only treatment right now is education and avoidance,” Hannaway says. “There are treatments on the drawing board but it’s all preliminary right now.”
Life-threatening food allergies present their own set of parenting challenges, and potentially a whole new level of anxiety. Statistically, most child fatalities are caused by the uncontrollable and unintentional, like car accidents, cancer or congenital conditions. An allergy-induced death, however, is wholly preventable if you are vigilant enough. And being the last line of defense for your child in that way can send even the most laid-back parent into”I know parents who won’t eat out. They won’t travel. They cut down on social activities.” Hyperland.
“A lot of studies have shown that families of children with food allergies are negatively impacted,” Hannaway says. “It affects the whole lifestyle. I have parents who get overly compulsive about foods. They won’t eat out. They won’t travel. They cut down on social activities.”
Lynda Mitchell, the president of Kids With Food Allergies, Inc., has a son, now seventeen, who was diagnosed with over a dozen food allergies when he was a baby. In the early 1990s, finding other parents facing similar issues was nearly impossible. Mitchell calls it the “dark ages of food allergies.” Not only were social networks hard to find, it was equally hard to convince other adults that there was a distinction between an allergy and an intolerance and that she wasn’t just a hyper food mom.
“In raising a child with food allergies, one of the biggest challenges is a lack of awareness in the community,” Mitchell says. “I think everyone struggles with finding a balance. Is your home a happy home or is it a home filled with anxiety? Comparing notes with other parents gives you some perspective,” Mitchell says.
It was this need to compare notes that led Mitchell to form Kids With Food Allergies, which is largely a place online for parents to connect with and educate one another.
“If you just share information, it opens up new opportunities and gives you strength,” Mitchell says.
You probably know who chef Ming Tsai is. He stares at you in the food aisle of your local Target, where his products are sold, or from your TV, during his Simply Ming! cooking show. Those in the Boston area may have eaten at Tsai’s flagship Blue Ginger restaurant. But what you probably don’t know is that Tsai has EpiPens stashed everywhere, including his glove box, because his son was diagnosed with food allergies when he was two months old.
“The unfunny joke is that the son of a chef has food allergies,” Tsai says. “He was allergic to seven out of the top eight food triggers. He could only eat protein and rice products.”
Despite the larger cosmic gotcha, Tsai’s son, who is now seven, was lucky, because he is the son of a chef and his dad had all of the tools to work within limitations. Travel, which is one of the biggest challenges for families with food allergic kids, was easier for the Tsais. The family would travel with a cooler full of rice-based products and meats and cook in hotel rooms. They would dine at restaurants where Ming knew the chef, which is, he adds with a laugh, “unfair and unrealistic for most people.”
But Tsai is trying to level the playing field. Diners at his restaurants can know exactly what is in their food simply by asking for The Book – the capital letters are implied when he speaks of it. The Book lists what goes into each menu item, whether it be lemongrass, hanger steak or chocolate.”The hard part is the mom-and-pop places, the small restaurants. People don’t realize that a molecule can kill.” Ingredients like fish sauce, which contains multiple other ingredients, are explained in their own index in The Book.
“It helps our business because people with food allergies come to us,” Tsai says. Assembling The Book isn’t an inconvenience. “It just makes sense. During service on Friday nights, we’re busy. If asked, we can’t think of all of the ingredients while cooking. The Book also reduces liability.”
Tsai would like to see all restaurants with their own Books. “The big boys like Burger King already do it on their websites. The hard part is the mom-and-pop places, the small restaurants, that haven’t really had the training. People don’t realize that a molecule can kill.”
Tsai is working to pass legislation in Massachusetts that would force restaurateurs to disclose what’s in their food. Having a son with severe food allergies, he says, is “certainly life-changing but it gives me my stump to stand on.”
Washington, D.C.’s Maria Acebal remembers the first time she fed her young daughter a peanut butter cracker. After one bite, the girl went into “full-on anaphylactic shock,” which included vomiting, difficulty breathing and convulsions. “It was terrifying,” says Acebel, who has her JD from Yale Law School and practiced at one of the nation’s top litigation firms for several years. “The story to me is how many of us parents have gone to school to talk to the teacher about your kids’ condition. You’re so nervous to have this conversation as it is – but you frequently have this doe-in-headlights looking back at you. You can tell they’ve taken in about ten percent.” In the end, she says, the “teacher is like, ‘Oh my God, I have this self-injecting EpiPen that I don’t know how to use.’ Then the parent bursts into tears because she isn’t confident this person can take care of her kid.”
Rather than be the crying parent, Acebal started Safe@School Partners, a non-profit that provides training to schools and camps. Acebal’s programs aren’t about setting up draconian (and, frequently, ineffective) measures. Instead, she councils schools to implement simple systems that increase the kids’ safety.
“I don’t push for banning this or banning that. I tell the schools, ‘Tell me your parameters and I’ll tell you how to be safer.’ You can keep kids safe with a really minimal amount of inconvenience to other kids in the class,” Acebal says.
Acebal’s program would have been useful in a Pembroke, Ontario classroom in 2003.
On paper, Sabrina Shannon did everything right. She asked the food servers about the oil they used for their fries. Maybe those of use who can loosen up about food should do so, and count our blessings.She had an EpiPen in her backpack. Still, a few hours after lunch she went into anaphylactic shock. Despite the school’s knowledge of her allergies, a series of events left her in a coma and on life support. Her parents made the choice to pull the plug when it became clear that too much damage had been done.
In a Canadian Broadcasting Corporation radio documentary made about living with food allergies, then-ten-year-old Sabrina sounded like any other kid. Which is exactly the point. “In the real world, you can’t keep your children in a bubble,” Sabrina’s mom Sara Shannon said. “You want them to engage with the world safely.”
Sabrina’s death galvanized Sara to advocate for stronger legislation about school food safety. She has been working in Ontario to pass “Sabrina’s Law,” which would require schools to have plans in place for anaphylactic reactions. Similar laws are being considered in other provinces as well as in the U.S.
Clearly, hyper food mom has her place, and it’s in the service of a child truly at risk. But, given that real allergies are on the rise, maybe those of use who can loosen up about food should do so, and count our blessings.