Sat April 12, 2014
When Your Child's Food Allergies Are A Matter Of Life And Death
Originally published on Sat April 12, 2014 6:46 pm
Laurel Francoeur's son Jeremy was about a year old when he had his first life- threatening allergic reaction. She took him to the doctor when hives started to cover his whole body. Tests revealed severe allergies to peanuts, tree nuts, eggs, soy, sesame and shellfish.
Like many parents of children with severe food allergies, Francoeur faces a host of unique challenges.
"It's a lot of planning," she says. "You have to always plan where you're going, how you're going to eat when you get there. Will the food be safe? Will he have something to eat?"
At school, Jeremy has a special accommodation plan designed for students with disabilities. They put the precaution in place after Jeremy had an anaphylactic reaction while building a gingerbread house in kindergarten. He had touched some icing that contained eggs.
When he went to the hospital, an emergency room doctor mentioned that he could have died. Jeremy hadn't realized this, and the experience scared him. He was afraid to go back in the cafeteria at school.
"We had to say, 'Well look, you can die, but let's focus on the fact that you have a medication that will save you,' " Francoeur says. "So you kind of have to empower them to say, yes you have this risk, but we do have a solution."
Health risks aside, awkward social situations can arise. Francoeur, an attorney in Lexington, Mass., helps other families negotiate these dilemmas. She runs a support group for parents of children with severe allergies.
Many parents come to the group right after their child's diagnosis, concerned about dealing with family members who don't understand. They also have questions about navigating relationships with other parents who are frustrated about changes in the classroom.
"It's something you really have to negotiate and see, how is it going to work for your child? And try to let other people understand that you're not doing this to be a pain in the neck. You're doing this because your child could die if they touch or eat the wrong things," she says.
As Francoeur points out, rates of food allergies are on the rise. A national survey conducted in 2011 found that about 1 in 13 children is allergic to at least one food.
Doctors told Francoeur that Jeremy might grow out of the allergies, but he hasn't. Now that he's a teenager, some things are easier. Francoeur doesn't have to worry about him touching everything, or picking the wrong thing up off of the floor.
However, Francoeur says, teenagers are at a higher risk for having fatal anaphylaxis than younger children because "they're at that age where they think they're invincible and they want so desperately to fit in."
Jeremy carries a small form of epinephrine that fits in his pocket. "He likes that because it doesn't call attention to him," Francoeur says. Planning meals and calling ahead to restaurants before going out with friends are just necessary norms.
"For him, it's just part of his life," she says, "and he hasn't known any other way of living."
(SOUNDBITE OF MUSIC)
TESS VIGELAND, HOST:
It's ALL THINGS CONSIDERED from NPR West. I'm Tess Vigeland.
We have created a place to talk kids, and everything to do with being a parent. Pull up a chair and let's sit at the kids' table.
(SOUNDBITE OF CHILDREN PLAYING)
VIGELAND: Today we're talking about some of the things that end up on the kids' table - food. For some kids, some foods can be deadly. And parents of children with severe food allergies face unique challenges in caring for those kids. Laurel Francoeur runs a support group in Lexington, Massachusetts for parents of children with severe allergies. Her 13-year-old son Jeremy has multiple food allergies.
LAUREL FRANCOEUR: Peanuts, tree nuts, eggs, soy, sesame and shell fish.
VIGELAND: She realized something was wrong when he was about a year old, a day when her son suddenly broke out in hives that spread all over his body.
FRANCOEUR: I didn't know what was happening, and I brought him to the doctor's office, and the doctor reprimanded me. He said I should have called 9-1-1 and taken him by ambulance, and I didn't realize that just having hives at that point was a serious symptom.
VIGELAND: Laurel saw just how serious her son's allergies could get a little later when Jeremy was in kindergarten.
FRANCOEUR: They were making gingerbread houses for Christmastime, and the frosting had egg in it. And he got some on his hands and he licked his hands, and it started an anaphylactic reaction. And I hadn't told him at that point that he could die from the reaction, because he was too young. We got to the hospital, and the emergency room doctor said, oh, you know he could have died. And he said, what, I could have died?
And then he had an emotional problem after that, was afraid to go back into the cafeteria. We had to say, well, look, you know, you can die, but let's focus on the fact that you have a medication that will save you. So you kind of have to empower them to say, yes, you have this risk, but we do have a solution.
VIGELAND: Well, what are some of the special accommodations that you have to make for him there in your house?
FRANCOEUR: Well, in my house, I removed all products that have peanuts, nuts and egg. And you have to always plan very well where you're going, how you're going to eat when you get there, will the food be safe, will he have something to eat? It's just an awful lot of planning.
VIGELAND: Yeah, because you can't predict what kind of allergens you're going to run into anywhere. So how do you prepare for that sort of thing?
FRANCOEUR: Well, in school, he has a 504 plan. It's a special accommodation plan for children with disabilities. When he was younger, they had a peanut-free table where he was allowed to sit. The classroom, they agreed not to have his allergens in the classroom. They also had the students wash their hands if they came in from the lunchroom.
You run a support group for parents who have children with these severe allergies. What types of concerns do you hear from them when they first come to you?
The issue is people not understanding, especially with the older generation. They don't understand the severity because they didn't grow up with it. Another aspect is sometimes other parents...
VIGELAND: You know, I mean, I know you sometimes even hear that, you know, there are parents who say that all these kids who don't have allergies shouldn't have to, like, not have peanut butter around just for maybe one or two kids. How do you respond to that kind of language?
FRANCOEUR: The incidents of food allergies is actually rising. So even though it seems like it's only a few kids, it's about one in thirteen children now have a food allergy, so it is more prevalent. It's something you really have to negotiate and see, you know, how is it going to work for your child, and try to let other people understand that you're not doing this to be a pain in the neck, you're doing this because your child could die if they eat or touch the wrong thing.
VIGELAND: Your son, as we noted, is just entering his teen years. I wonder how does he handle some of these social situations?
FRANCOEUR: It's difficult now that he's a teenager, and actually studies have shown that teenagers are the highest risk for having fatal anaphylaxis, because they're at that age where they think they're invincible and they want so desperately to fit in. He carries, right now, a different form of epinephrine that fits in his pocket. He likes that because it doesn't call attention to him, and for him, it's just part of his life and he hasn't known any other way of living.
And they had said, oh, he'll outgrow them by this age. And he hasn't.
VIGELAND: Laurel Francoeur, thank you so much for your time today, and best wishes for your son.
FRANCOEUR: Thank you so much. Transcript provided by NPR, Copyright NPR.