The Canadian Press: Mixed reaction from parents on peanut allergy advance; many remain dubious

I think that anyone who has peanut allergy, or has someone in the family with peanut allergy would jump on this study. In my own family I thought that YES, finally, a move forward, lets get on it! My wife, on the other hand wanted to know much more. Side effects, how many kids dropped out, reactions versus no reactions… All they tell you in the press releases is the good in these studies and not the bad.  For parents and individuals to feel comfortable the full scope of the study needs to be made available.

I’ll continue to try to locate the results but please exercise caution and ask many questions before jumping into this kind of study. DO NOT TRY THIS AT HOME. The doctors and researchers are using very measured doses and processes to do this study. This could be dangerous if not fatal to attempt this on your own.

CONCORD, N.H. — One mom says she’d be first in line for a promising treatment that exposes children with peanut allergies to tiny amounts of peanut flour. Another remains fearful, with the painful image of her son’s face blown up beyond recognition still fresh in her mind.

While some parents of children with life-threatening peanut allergies see a glimmer of hope in a recent study suggesting a possible cure, others remain dubious that it will ever change their children’s lives.

“It’s like when we were growing up 20 years ago and we saw the flip phones on ‘Star Trek’ – that was going to be the wave of the future, but we thought that would never happen,” said Eva Stilkey of Raymond, N.H. “It’s great, but those of us who live with the disappointment and the reality of it, you kind of protect yourself. We really do hope it happens someday, but we don’t want to have false hope.”

Earlier this week, scientists announced the findings of a small study that involved giving a handful of highly allergic children tiny amounts of peanut flour daily for more than two years. Gradually, the children became less sensitive, and so far, five show no remaining sign of the allergy.

Larger studies are beginning to see if the treatment works for more people and how long it lasts. But it was big news for the many people who are allergic to peanuts.

Stilkey’s son, Nicholas, who turns five on Friday, was 2 1/2 when a single bite of peanut butter pie sparked a severe reaction.

“We had him spit it out, and when he did, when he lifted his head back up. I couldn’t even recognize him. His face was blown up to a point where there was no separation between his nose or his lips. He was stuffing his hands frantically down his throat trying to breathe,” she said.

Stilkey considers the study participants heroes, but she’s in no hurry to follow in their footsteps.

“I am full of complete admiration for the parents and those children who put themselves through that because I know as a mother, I would be absolutely fearful to try to put Nick through that, just because I’ve seen what happened to him,” she said.

Tamara Leibowitz, who runs a support group for parents of children with food allergies in Portsmouth, N.H., said it would be a leap of faith to subject her son to small doses of what essentially has been considered poison, but “I think we’d jump at the chance.”

“My son would be terrified at the beginning, but he’s been paying attention, too, even at nine years old, and he’s really encouraged by what he sees,” she said, describing her own reaction as “cautiously optimistic.”

In Orange County, Calif., Louise Larsen said she, too, would seek out the treatment if it becomes available.

“Would I put my child through that? Sure, if I sat right next to her, and we went very slowly and it was in a very controlled setting,” said Larsen, whose 12-year-old daughter is allergic to peanuts. But she said she would never be completely convinced that the allergy was gone.

“Even if they did conclude she no longer had any allergy, as her mom, I’m going to send an EpiPen with her until she goes to college,” she said, describing the portable injections used to treat anaphylaxis, a severe allergic reaction marked by swelling of the throat or tongue, hives and breathing trouble.

Another California mom, Lori Fletcher, would be just as eager to try the treatment on her six-year-old son, though she and other parents worry that publicity over the breakthrough would create more misconceptions about food allergies. She doesn’t want people who have heard the news to assume that it means her son now can have “just a little bit” of food containing peanuts. “We still need to be avoiding it,” she said.

But she also found the news inspiring, and plans to use it to promote an upcoming fundraising walk.

“I hope people take from it that if we do raise money, we can get a treatment fairly soon,” said Fletcher of Danville, Calif.

In the meantime, parents said they will remain vigilant, obsessively checking each food label and ensuring their children’s safety at home and school.

“Every time you think you finally have come to a point where you can sit back a little and trust the school has everything in place, you get the phone call that someone has brought this in by mistake,” said Stilkey.

Lori Pelletier-Baker of Concord, N.H., hasn’t faced that situation yet because her four-year-old daughter isn’t in school, but kindergarten is just around the corner.

“It is a constant weight that I think everybody, including Kaleigh, carries on their shoulders,” she said. This week’s breakthrough doesn’t lessen that weight, she said.

“There’s that piece of me that thinks, ‘Wow, that’s so amazing!’ But the reality is that it may take a long time to reach us,” she said. “I’m not going to give up hope, but I know that things aren’t going to change any time soon.”

Copyright © 2009 The Canadian Press. All rights reserved.

via The Canadian Press: Mixed reaction from parents on peanut allergy advance; many remain dubious.