Youngsters with severe food allergies confront issues that go beyond just avoiding some kid-pleasing foods like pizza, peanuts and cupcakes.
Their needs may be forgotten by well-meaning classmates, teachers and parents of classmates. Some are bullied or scapegoated because their allergies impact what foods others may bring into the classroom.
And a few get so focused on avoiding an allergic reaction that they become overly fearful, averse to trying any new foods or unrealistically convinced that exposure will lead to death.
For many food-allergic children, class parties especially become tests of endurance in which they must either accept the physical discomfort of being around trigger foods or feel left out altogether.
But it doesn’t have to be this way. Their parents – many of whom have struggled long and hard to figure out how to feed these children at home – are hoping that by educating teachers and others about food allergies, much itching, hives and nausea, as well as hurt feelings and resentment, can be avoided.
Julie Trone, a mom with a severely allergic son in Fort Collins, last year launched Allergy Free Table, a website with information about food allergies, suggested foods for class parties and information about how to prevent the bullying of allergic children.
“We’ve found a niche,” said Trone. “My hope is that all teachers will embrace this because sooner or later every teacher will have a child with food allergies in their classroom. It can be very difficult, but it can also be very easy.”
Students feel left out of festivities
An estimated one in 25 school children has some form of food allergy, and the incidence has been going up in the past decade.
Trone’s son, Gavin, has multiple food allergies, including dairy and wheat. At the beginning of the school year, she met with his teacher, Alissa Poduska, to explain Gavin’s predicament and ask her help.
“I asked a lot of questions so I would know everything that’s possible to prevent there being any sort of issue,” said Poduska, who teaches third-graders at Bacon Elementary School in Fort Collins.
“Birthdays are always the biggest issue, and I sent a note out to all parents saying that we had some students with allergies so we couldn’t have the following things, but there are some awesome things that we can have.”
In addition, Poduska keeps a stash of allergy-friendly treats in her desk drawer. If someone brings in goodies for the class that Gavin should not eat, Poduska pulls the boy aside and quietly invites him to pick whatever alternate treat he would like.
But despite all her conscientiousness, even Poduska sometimes fails to recognize when Gavin feels left out. One day, her class won a pizza party.
“It didn’t even cross my mind that Gavin couldn’t eat pizza,” she said. “I was thinking about sugar and wheat. I thought everyone could eat pizza. Later, Gavin’s mom approached me and said Gavin’s feelings were hurt because I hadn’t talked to him about it in advance. I felt horrible.”
The next time pizza was served, Poduska asked Gavin what special treat he would like to have. And while all the other children were eating pizza, Gavin enjoyed a some McDonald’s French fries.
In Poduska’s classroom, Trone has been active in teaching her fellow parents about the needs of food-allergic children and no one has objected to the limitations placed on the students. But elsewhere, that isn’t always the case.
Last month, some parents in the Volusia County school district in DeLand, Fla., picketed the school because they believed their children were spending too much time washing their hands and wiping their faces to protect a classmate with a severe peanut allergy. They carried signs saying “Our Kids Have Rights Too.”
Parents, others not always understanding
Greenwood Village mom Moiria Sangalis said she has never encountered that much hostility in Colorado. But she has felt resistance from school officials to restricting classroom treats, and she once had a heated argument with another mom over some muffins that mother brought to the class.
Sangalis’ son, Nick, has multiple severe allergies, including diary, eggs, tree nuts, shellfish and latex. Nick doesn’t even have to ingest the substances to suffer a reaction. Just being near them can cause him problems.
“From our experience, every school is so different. If the teacher isn’t supportive of you, everything will backfire,” said Sangalis. “Most of the time, they’ll work with you.
“But when Nick was in fourth grade, that’s when I started to feel the pressure from other parents. Maybe they didn’t want their child to be in class with mine. Maybe they felt they had a right to bring in whatever they wanted, whenever they wanted. Why do we even have to have so many parties? But food is such a big part of school. The principal at his school told me that having classroom parties really was part of the culture there.”
Nick, 11, still winces at the memory of yelling at a classmate who wanted to bring in a chocolate fountain to celebrate the completion of state CSAP exams.
“I could have handled that better,” he said. “I don’t know what people are thinking sometimes. They could be thinking about the greater good for the greater number of people. But it’s really not the greater good, is it? If one person isn’t having fun, if one person feels left out, then the whole celebration could be brought down because of one person feeling bad.”
Nick is now enrolled at Ricks Center for Gifted Children at the University of Denver, and he’s had no more problems. The school has been very supportive, and his classmates very thoughtful about his special needs.
“This year, we’ve had three or four birthday parties with cupcakes and they all brought me Oreos, which I thought was generous,” Nick said. “I don’t mind if other kids have it, as long as they don’t shove it in my face or touch me.”
For the past eight years, Sangalis has been president of MOSAIC or Mothers of Severely Allergic Infants and Children. The group’s website, www.mosaickids.org, lists resources including non-allergenic recipes kids will like and tips on advocating for school policies that protect allergic children.
In 2009, the Colorado General Assembly enacted legislation requiring every school district to develop a policy to manage the risks posed by food allergies.
Psychological hurdles confront allergic children
Even when schools and classmates are fully supportive, severely allergic children still face psychological hurdles.
Dr. Mary Klinnert, associate professor of pediatrics at Denver’s National Jewish Hospital, is 18 months into a two-year study to determine just what those hurdles are, and how families can help them cope both physically and emotionally with their allergies.
“What we’ve seen is that there really is a broad range of people’s understanding of what they’re dealing with,” Klinnert said. “Some people really understand, and some are kind of vague on some important aspects. And there’s a broad range as far as the lengths to which they will go to avoid allergens.”
Dr. Mary Klinnert at Denver’s National Jewish Hospital seeks food-allergic children ages 6-12 to interview. Contact her at email@example.comKlinnert said some children are so fearful of having an allergic reaction that it gets in the way of living life.
“Sometimes we see kids who have a lot of food aversion,” she said.
“They don’t like to eat new foods at all. Or maybe they don’t eat enough because of a fear of eating something they might have a reaction to. And we also see kids not wanting to be independent from their parents at an age-appropriate level.”
Klinnert noted that many food-allergic children haven’t had reactions since they were very young, and thus don’t remember what a reaction feels like. They need to be reminded that a reaction usually means an itchy throat or a rash or hives, which isn’t pleasant but neither is it fatal.
“Some kids need help with the idea that having a reaction isn’t the end of the world. Many kids really believe that if they have a reaction they will die,” Klinnert said.
“This is a tough subject for parents, but it’s really important that they know that 99.999 percent of kids who have allergic reactions, they handle it and they’re fine. The chances of them dying only happens if a whole series of things go wrong. We’ve probably talked to kids too much about how life-threatening their food allergies are. For a lot of kids, I think we might have gone overboard.”