by Jody Kerzman
For 23 years, Stephanie Schock didn’t worry about allergies. Then she suddenly developed an allergy to shellfish. Little did she know, when it came to allergic reactions, her shellfish allergy would soon become the least of her worries.
Now, Stephanie’s life is consumed by allergies. Her two young sons, Lukas and Gabriel, have life-threatening food and environmental allergies. Lukas, now four years old, was diagnosed with FPIES (Food-Protein Induced Entercolitis) at three months old, after more than three weeks in the NICU.
“Lukas would projectile vomit after drinking a bottle, he would scream for hours, throw up blood, and had bloody diapers. We think he had a seizure too,” remembers Stephanie. “He was diagnosed then, and at six months we did the skin prick tests with an allergist. We learned he had over 40 allergies that caused FPIES reactions, but he has outgrown all but the dairy, peanut, tree nut, and egg allergies. “ “When I got pregnant again two years later, I thought I was prepared for anything. Being Lukas’ mom had taught me so much about allergies and what to look for,” says Stephanie. “But Gabriel was a determined kid from the very beginning. I was on complete bed rest in the hospital when he just stopped moving. So he was born six weeks early by C-section. He seemed fine, but he would not eat. He had to stay in the NICU because he refused to eat.”
Finally, they got to take him home but at two months old, he developed what they thought was pneumonia. Stephanie remembers his lungs filling with fluid, but after steroid injections he was back to normal within a few hours. He was diagnosed with asthma. Finally, at four months old, Gabriel’s doctor put him on a developmental amino acid based formula.
“He was doing better, until one day I fed him rice cereal and he threw up until he passed out,” Stephanie says. “He would do that. He’d be eating things just fine, and then all of a sudden he’d just start to throw up.”
When Gabriel was 15 months old, he was referred to a pediatric allergist and underwent skin prick test for food allergies. His reactions were severe to almost everything. The doctor prescribed an epi-pen and sent them home.
Gabriel continued to react to almost everything. Stephanie recalls the time she fed him one spoonful of soy yogurt. “He took a bite, looked at me, started to cough, then got up and tried to walk away, but he couldn’t really walk, so he sat down and his eyes rolled back. He was gasping for breath. From one tiny bite of soy yogurt! And then there was a time I kissed Gabriel after drinking coffee with creamer. He broke out instantly in head to toe hives just from that contact with creamer.”
Gabriel had 20 reactions to food in eight months and was diagnosed with EoE (eosinphillic esophagitis) and FPIES as well as his immunoglobulin E (IgE) allergies. He lost weight; and last June, at two years old, he weighed just 19 pounds. Stephanie says he was terrified of food, refused to eat, and slept all day.
“Finally, a doctor put him on noecate eo28 splash, a complete medical food, and that has made a world of difference,” says Stephanie. “He eats about a quarter cup of food a day but for the most part, he gets his nutrition from that. He’s gained eleven pounds in four months and grew three inches! He’s still small, but he looks healthy now.”
Gabriel has six “safe” foods, including coconut, pineapple, chicken, deer meat, apples, and strawberries. His parents have slowly been introducing brown rice into his diet, and so far, so good. But Stephanie knows that could change in the blink of an eye. She’s quit her job and put her photography business on hold to be home with Gabriel and Lukas.
“It’s just too much to ask of a daycare provider,” she says. “When they’re old enough for school, I’ll homeschool them. We live on a farm, 30 miles outside of Ruby. That’s too far for me to be from them if something would happen at school. There was one time we went to pick up my 12-year-old daughter from an afterschool activity. We were there for five minutes; Gabriel didn’t touch anything, yet he had a reaction to something. He couldn’t breathe. There are just too many things that could hurt him.”
But you’d never know it by looking at these boys. They are healthy, happy, and loved. But there’s something else their mom wants for them: she wants them to be understood.
“The biggest gift anyone could give me would be to take the time to educate themselves about allergies. That’s what’s going to save kids’ lives. People need to understand there are millions of children in the United States who have food allergies, and for my sons, those allergies are life-threatening,” says Stephanie. “I can’t change that, but I can change people’s perceptions of allergies, and I can educate people about how serious this is. That’s my mission.”
Her mission is made a little easier, thanks to some great online resources. The top three websites Stephanie recommends to people who want to learn more about kids and allergies are: www.foodallergy.org, www.foodallergyawareness.org, and kidswithfoodallergies.org.
There is no cure for food allergies, which makes Stephanie’s mission to educate even more important for her boys, and for the millions of other children who are also living with food allergies.
Jody Kerzman is co-editor of Inspired Woman. Jody lives in Bismarck with her husband, Brad, and their four kids.