ST. LOUIS (KMOX) – Nearly 6 million children in the United States live with food allergies and the number is growing.
For many families, the condition means big adjustments. From their kitchen to their social life, food allergy families open up about the stressful reality of daily life.
Before she can ever sit down at a restaurant, Robyn Kirk has to pull out the wipes and go over every surface her children might touch. When even a trace amount of food can trigger a reaction, food allergy parents are always on guard.
“A lot of times I think, ‘People must think I’m a crazy germaphobe, like look at that lady wiping down the high chair,'” Kirk says. “But it’s not about germs it’s about something that could send him into anaphylactic shock.”
The Kirk’s took peanuts out of their pantry all together when oldest son Andrew was diagnosed. It wasn’t as easy when they found out his younger brother Kyle was allergic to milk.
“At that point we had a four year old who lived on macaroni and cheese and grilled cheese sandwiches and Goldfish crackers,” Robyn Kirk says.
It’s been an adjustment.
“It’s been hard to get him to eat things at home because, the dairy-free versions of things are not good. The dairy-free cheese is not good. We went through probably 7 or 8 alternative milks before we found one Andrew would drink.”
The Kirks spend almost $8 a gallon on that alternative milk.
Families whose children have food allergies learn food is no longer convenient.
Kerry Schindler sits at a coffee shop. If her son Henry had joined her, she would have called ahead to ask about ingredients and preparation. He’s allergic to dairy, egg, peanut and tree nuts. To be on the safe side, she would have brought him a lunch.
“It’s just not really possible with a food allergy kid to drive through McDonald’s and grab everyone chicken nuggets on the go,” she says.
Food allergy parents pack a lot of extra food. They bake safe cupcakes for every party, leave a stash of snacks at school and swap out candy at holidays.
But Kerry says it’s not always enough.
“There are just some times I can’t control the situation, the danger is just too great. We’re gonna have to say no,” Schindler says. She adds many people have a difficult time grasping seemingly simple concepts. “Ice cream sundaes in the class could kill my kid. And it’s really as simple as that.”
What grieves many of these parents the most is the frustration of getting people to understand.
“And I still remember a mom telling me, ‘Well I bought the cupcakes out of the freezer section so they’re okay.’ And I remember looking at her and thinking ‘You just don’t get it’,” Schindler says. “That was one of the times I remember sitting in my car crying.”
Melissa Short says she knows people sometimes think she’s crazy but she can’t worry about that.
“They didn’t hold their child when he was gasping for breath, they didn’t have him in their arms trying to run him out to an ambulance,” she says.
Melissa’s son Brennan is in 6th grade, a pre-teen about to enter the years when young people are at greatest risk of a fatal food reaction.
Brennan knows what will happen if he eats the wrong thing. “My throat will close and I will die,” he says. Yet when asked if he checks ingredients every time he eats, he admits he doesn’t.
“That scares me to the core,” Melissa says.
His physical well-being isn’t the only concern. Short wonders if her son will be okay, socially and emotionally.
It’s estimated that more than a third of kids with food allergies have been bullied, which often involves threats with food.
Brennan recalls a particular instance of bullying. “[A boy] took the sandwich and then put it by was face and was like ‘Here, you gonna die?'”
He passes it off as just part of what he has to deal with, but for many young people with food allergies the daily bullying takes its toll.
Twelve-year-old Wesley Powell is constantly thinking of what can hurt him. “Sometimes I can just smell peanut butter. I don’t like it. Makes me nervous.”
His mom Erika says he was a candidate for oral food therapy to reduce his risks. “[I] called quickly and got him on the list but he won’t, Wesley won’t do it.” Wesley says he is too nervous to take the oral treatment.
Wesley makes sure to sit away from other kids eating peanut butter in the school lunch room, but he wishes someone would understand his plight. “[They don’t] know what it feels like to have an allergy and I’d like for them to feel it. That’s it’s bad for you and can kill you.”
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