Skeptics add to food allergy burden for parents
A lone Cheerio started the trouble one day as Lorenda Layne and her toddler Sabrina, an energetic girl with severe food allergies, were enjoying a play date with another child. Sabrina found the milk-soaked bit of cereal in the crevice of a chair, stuffed it in her mouth, and promptly broke out in hives.
Layne and her friend, both self-described “allergy moms,” were upset about Sabrina’s red welts, but something else bothered them, too: a missed opportunity.
“Why couldn’t Sabrina have had this reaction in front of our non-allergy friends?” asked Layne, of Norwell. “We know they think we’re crazy for being so vigilant.”
It takes a village to protect a child with allergies, but some parents say managing their kids’ diet has strained relations with friends and family and led to tension with parents of non-allergic classmates. Where does one child’s claim to PB&J end and another child’s claim to a Skippy-free environment begin?
The number of children with reported food allergies continues to rise — from 3.5 percent in 1998 to 5.2 percent in 2012, according to the National Center for Health Statistics. With that increase has come a heightened awareness of allergies, but some parents of allergic children say they are sometimes branded hypochondriacs or labeled as overprotective by neighbors, late-night comics, and even grandparents.
“People get defensive about food,” said Lora Estey, a West Roxbury software engineer with a toddler who is allergic to wheat, peanuts, tree nuts, and dairy. “Having a kid who can’t partake means you are always having to call it out and discuss it.
“Everyone has read a Yahoo article, or knows someone who knows someone who gave their kid a peanut every day and his allergy went away,” she added. “But the best thing about me not giving a peanut to my son today is that he doesn’t die today.”
No one wants to compromise a child’s health. But some parents of kids with allergies say they’re challenged by people who don’t understand that even trace amounts of a food can trigger a potentially fatal allergic reaction, or anaphylaxis.
Even Nana and Poppa are skeptical at times.
“I don’t want to disparage a whole generation,” said Laurel Francoeur, an allergy mom who runs a support group for parents in Lexington. “But [some grandparents] say ‘we’ve had this meal for years and no one’s ever had a problem. Why can’t he eat it this one time?’ ”
Fodder for those who preach “just try it” arrived in January, when a study published in The Lancet found that a six-month course of oral immunotherapy successfully desensitized most children with peanut allergies. Study authors warned that no one should try it on their own — a message that’s often shrugged off by those who don’t have allergic children.
Beyond suspicion that allergies can’t be fatal — particularly non-peanut allergies — some parents say they face disbelief that their children’s allergies exist at all. That’s a perception fed in part by the enormous number of Americans who avoid things like gluten or dairy for lifestyle rather than life-and-death reasons. Skepticism was likewise fueled by a 2010 study in the Journal of Pediatrics that found an overreliance on blood tests to diagnose food allergies had led to avoidance of foods that could actually be eaten.
“It makes it harder because people think we’re all misdiagnosed, that we’re hypochondriacs,” Francoeur said.
It’s been about 15 years since three young people in Massachusetts died from allergic reactions over a two-year span. Since then, voluntary Massachusetts Department of Education guidelines, parental advocacy, education, and lawsuits have prompted schools to accommodate students with food allergies, including peanut and tree nut bans, strict hand-washing policies, and allergy-safe lunch room tables. Today the call for allergy safety goes beyond schools. One New Jersey mother is campaigning to require airlines to institute a “bill of rights” for food-allergic passengers.
Still, a parent’s decision to ban certain foods may not be taken seriously, even by other family members.
“I think about this all the time,” said one mother, who asked not to be identified for fear of alienating her family. “We had relatives staying with us over Christmas, and my sister-in-law’s behavior was of the type that takes the people with severe allergies and throws them under the bus. She was banning everything. One of her sons could have eggs and wheat but no rice or soy. The other could have this but not that. I asked her how she figured it out and it seemed so unscientific. Behind the scenes my father-in-law was just telling me to feed them whatever I wanted — it wouldn’t matter.”
Pop culture often doesn’t help public perception, said Francoeur, an attorney and author of allergy advocacy books. On the Jan. 21 episode of “The Daily Show with Jon Stewart,” for example, an offending joke came in a piece satirizing the military for denying Vietnam veterans treatment. “Isn’t post traumatic stress disorder one of those made-up diseases, like peanut allergies?” one character asked. The line was meant sarcastically, but it captured something real.
“We’ve lost a few friendships over” allergy issues, said Elise Thomas, a Kingston mother whose son is highly allergic. “Particularly with one family who felt we were being over-protective.”
In schools, that skepticism can fuel resentment. In Newton, a lawyer who has successfully tried cases aimed at forcing allergy-free policies in schools has also been approached for representation by families who are unhappy because their children can’t have nuts in school.
“My response is that we’re talking about one meal at school. Inconvenience is outweighed by the very real possibility of injury or even death that can result from exposure to even minute amounts of an allergen,” said Tim Sindelar.
In one public school in suburban Boston, the parents of a young child who was not allowed to snack on crackers marched into the nurse’s office to complain. The policy was intended to protect a classmate who had suffered an anaphylaxis reaction to wheat and was vulnerable to cracker dust, but the parents had their own perspective.
“They said they come from a 1,000-year tradition of eating wheat,” the nurse recalled, “and that their child was being deprived of his cultural heritage.”
As the number of kids with allergies rises, so do the number of parents struggling to deal with medical and social concerns the allergies can bring. Thomas says she knows people are annoyed by her vigilance.
“But I don’t think they understand the fear,” she said. “I have to trust others to help my son be safe.”