A Kid Like Emmett: Raising a Child With Severe Food Allergies

Emmett Schulz
Emmett Schulz, 2 years old, is dangerously allergic to a range of common foods. Jennifer Schulz

Peanuts, tree nuts, egg, wheat, poppy, sesame, sunflower, mustard seeds, chickpea, pea, lentil, garlic, salmon. Peanuts, tree nuts, egg, wheat, poppy, sesame, sunflower, mustard seeds, chickpea, pea, lentil, garlic, salmon.

This is my mantra. It follows me around Whole Foods while I search for a brand of corn chips that might be safe enough for my 2-year-old son, Emmett. I am meticulous. I am compulsive. I will talk to myself in the cookie aisle. I will whip out my cellphone and call a company if no allergy statement is printed on the packaging. I will spend a long, long time in the store going back and forth on whether I should buy a bag of corn chips.

I'm not the only mom spending hours looking at ingredients. A 2013 study released by the Centers for Disease Control and Prevention (CDC) showed that food allergies in children increased 50 percent between 1997 and 2011. According to Food Allergy Research and Education (FARE), 5.9 million, or 1 in 13 children, suffer from food allergies. Multiple studies have shown that anaphylaxis, a life-threatening allergic response, is on the rise, too. For example, from 1990 to 2006 in New York State alone, the rate of hospitalization due to anaphylaxis among children and teenagers increased fourfold.

Sometimes I will feed Emmett a "safe" meal and he'll take one bite and look at me very seriously. "No Mama," he'll say and push it away. My stomach will drop when this happens. Some "safe foods" like salmon have suddenly become dangerous. In the past I would prod, needle and trick him into eating some food or another. Then one time he got so sick he vomited his meal back up. Hives started to form on his body and I grabbed the Benadryl and the EpiPen while I dialed his allergist. I haven't found a way to differentiate when he's being picky and when I'm feeding him poison.

And then there was "The Challenge" at our doctor's office. A food challenge is the gold standard of allergy testing, and the only way to know for sure if an allergy is present. We decided to "challenge" wheat. Emmett got up to a quarter of a teaspoon and suddenly he refused to eat anymore. Welts began to appear all over his face and body. Within minutes his lips and tongue swelled up. His eyes swelled shut. He screamed and cried and was inconsolable. My then 1-year-old looked like he'd been in a fight.

Fear of anaphylaxis steers us clear of restaurants and birthday parties. I used to believe that having an anaphylactic reaction meant someone's throat swelled, making it hard to breathe, but then they'd just inject themselves with an EpiPen and in a few minutes they would be fine. Whew, close call, they'd say. I also thought it would be a once-in-a-lifetime event that only happened in movies. But it's not really like that at all. After a few exposures to an allergic food, an anaphylactic reaction can happen at any time and from any amount. Some patients are so sensitive that the smell of fish frying, or an open package of nuts on a plane, or a bit of milk getting splashed on the skin is enough to act as a trigger. And Epinephrine is just a first line of defense—the stopgap until the ambulance arrives—and may only work for a short time before the symptoms return. If it isn't given soon enough, it might not work at all. Anaphylaxis is not just the swelling of the throat; it is a system-wide response that, if not treated immediately, can lead to shock, respiratory arrest, cardiac arrest and death.

These facts, though, are cold and distant. What are much more visceral are the tiny realizations Emmett is beginning to have—the small understandings that he is different from the other kids. Less deserving, maybe he thinks. Yes Emmett, those girls and boys are eating frosted blue cookies. No, we can't eat those. Here, I have this cookie for you. I say this as I pull out a crumbling cookie in a Ziploc from my purse. It's probably been in there a week. I consider taking him home so he doesn't find a crumb of a blue frosted cookie and put it in his mouth when I'm not looking. I consider taking him home so other kids don't touch him with wheat and eggs on their hands. I consider taking him home so he doesn't have to watch.

There are some exciting new treatment options for children with severe food allergies. One example is Oral Immunotherapy (OIT), the process of feeding patients a tiny amount of the food to which they are allergic (it may begin with as little as a few grams) and daily, over the course of months or years, increasing the dose to build up tolerance. The treatment can work, but there's a catch: Doctors believe that to remain desensitized, patients must continue the therapy for the rest of their lives. New research suggests there might be a more permanent solution. In January, The Journal of Allergy and Clinical Immunology published a randomized trial conducted by Mimi Tang and her colleagues at the Murdoch Children's Research Institute in Australia. Tang had a small but astounding success combining OIT with the probiotic Lactobacillus rhamnosus. "These findings provide the first vital step towards developing a cure for peanut allergy and possibly other food allergies," Tang told The Guardian.

Just like every parent of every toddler, I think constantly about keeping my son safe. But Emmett lives in a world that is just to the left of everyone else's. At 3 a.m. I obsess about how we can safely send him to preschool, and how he'll manage when his little league team goes out for pizza after a game, or what school birthday parties will be like for him.

According to a 2010 survey published in the October issue of Annals of Allergy, Asthma & Immunology, 24 percent of the participating children were bullied, teased or harassed because of a food allergy. The number goes as high as 50 percent for students in the 6th through 10th grades. "Recent cases involving bullying and food allergy include a middle school student who found peanut butter cookie crumbs in her lunchbox and a high school student whose forehead was smeared with peanut butter in the cafeteria," said Christopher Weiss, one of the authors of the study, in a press release.

"Better start him in karate lessons early," a family member joked during a recent holiday get-together. We had spent the whole afternoon trekking out to the closest Whole Foods in search of safe food for Emmett. A polite smile is all I could manage in return.

Luckily, there is a growing level of awareness in communities and schools across the country. I belong to a Facebook group started by Dr. Michelle Yasharpour, a local allergist who makes herself available for questions and posts new research in her spare time. Recently, my husband and I visited a preschool that assured us they would have no trouble including a kid like Emmett in the fall. I cried when I found out the staff at Emmett's play group found a recipe for homemade wheat-free play dough and came in early to make it. I nearly hugged a stranger at the park when she asked me if it was OK before offering Emmett some of her child's snack. "My niece is just like your son," she said.