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Kids with nut allergies feel teased, excluded

Posted by on Aug. 19, 2011 at 9:36 AM
  • 29 Replies

(Health.com) -- Amanda Santos wanted to send her 5-year-old daughter, Skylar, to a small private school. But after they interviewed, met the teachers, and submitted Skylar's medical records, they never heard back from the school, despite repeated inquiries.

Santos, who lives in Fairhaven, Massachusetts, can't say for sure why communication was cut off so abruptly, but she's convinced that Skylar's severe nut allergy was an issue.

"They knew going in that she had an allergy; they said it was no problem," says Santos. "But until we sat down and had a meeting about the precautions they'd have to take -- kids washing their hands, asking parents not to send nuts to school, that kind of thing -- they didn't realize how severe it was. I just think they didn't want her there, didn't want to deal with all of that."

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Santos is not alone. According to a new study conducted in the U.K., families with children who are living with this potentially life-threatening condition often feel isolated, stigmatized, or unfairly excluded from activities, due to the allergies.

In many ways, nut allergies feel more like a disability than a chronic illness because of the stigma, the researchers say.

"Families reported some really very difficult and unpleasant experiences when they were trying to keep their child safe from risk," says coauthor Mary Dixon-Woods, professor of medical sociology at the University of Leicester.

She was surprised by the study's results.

"I was expecting to hear about problems with labeling and so on, but the extent of the stigma families reported was very troubling," she says.

Peanuts are the most common food trigger of life-threatening anaphylactic shock, accounting for more than half of all fatal food-induced allergic reactions. Peanut allergies are on the rise, doubling in children between 1997 and 2002. About 1% of children in the U.S. have peanut allergies.

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Along with the rise in nut allergies have come more restrictions on schools and other public places, including nut-free classrooms and airplanes, as well as better labeling for products.

In recent years, there has been a bit of backlash against the greater focus on nut allergies. In 2008, Harvard Medical School professor Nicholas A. Christakis published in the journal BMJ an editorial called "This allergies hysteria is just nuts." While noting that allergies are a real problem, he wrote about the "overabundance of caution" at his children's school and an incident in which a school bus was evacuated because a peanut was found on the floor.

To determine some of the challenges faced by parents of children with nut allergies, Dixon-Woods and her colleagues interviewed 26 families about their coping strategies and techniques for avoiding dangerous situations.

They found, however, that these parents were routinely made to feel that such allergies were nothing but a "frivolous and self-indulgent fad invented and maintained by attention-seeking people."

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Parents interviewed for the study frequently encountered skepticism or hostility when they tried to explain their children's allergies to others, says Dixon-Woods. Birthday parties became "nightmares," and even just sending kids to school or leaving them with friends or family was terrifying.

Interview transcripts from the study reveal several scenarios in which parents felt ridiculed, ignored, or challenged on the subject of food allergies.

· In the lunchroom at school, children might feel bullied. "She was teased and things like that, people saying...'I've got nuts and I'm gonna come and touch you,'" said one participant.

· Said one participant about a family camping trip: "He'd caught her sort of pulling faces and complaining to other people that they'd had to put the peanuts away...they all laughed and it was awful..."

· At a social gathering, the hosts thought the family was overdramatizing the problem. "We got invited up for a party...gave them a list of what he could eat," said one study participant. "[We] walked in there and I couldn't believe my eyes, big bowls of peanuts in between all the food."

· Forgetful or disbelieving relatives aren't uncommon. In one family, a grandparent gave a child candy with nuts. "Now whether it was deliberate or not, I don't know, but I blew a fuse," said one participant. "I suppose in my heart of hearts I felt that he'd given it deliberately; my husband doesn't want to believe that his father would do that."

The study, published Monday in the journal Chronic Illness, was funded by the British charity Midlands Asthma and Allergy Research Association.

Dixon-Woods agrees that better food labeling, more education, and stricter regulation is necessary to reduce misunderstanding and negative attitudes about nut allergies especially in the United States, where peanut-based products are ubiquitous and the word allergy is frequently used to describe non-life-threatening conditions such as hay fever.

"It may be time to come up with a new term to describe the condition," Dixon-Woods says. "'Nut allergy' is so poorly understood that it really is not a helpful term anymore."

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The Santos family removed their daughter from preschool this year because a teacher gave her a food with traces of nuts. When she had a minor reaction, the school's response was, "Well, she didn't die, so she's fine," Santos says.

They've had flight attendants tell them that other passengers' snack preferences were more important than Skylar's safety. And they've gotten nasty looks from parents on Skylar's T-ball team after her coach requested that a child who'd been eating nuts put them away and wash his hands.

"Generally speaking, the public awareness of food allergy in the U.S. has increased, and this has resulted in some real benefits to families," says Brian P. Vickery, MD, an assistant professor of pediatrics at Duke University School of Medicine, in Durham. "For example, manufacturers are now required to put clearer labels on food items, many restaurants can provide better experiences, and schools are often more prepared to handle children with allergies."

However, the situation is far from perfect, he says.

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"Bullying in school does happen. The risks of anaphylaxis are not always appreciated," says Dr. Vickery. "Many families continue to struggle over and over again with obstacles, limitations, skepticism, and judgment."

Each family handles the challenges differently, but "we try to provide as much practical and scientific guidance as we can, and equip them to handle anything that might happen," he says.

by on Aug. 19, 2011 at 9:36 AM
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Replies (1-10):
azn_ladie82
by on Aug. 19, 2011 at 9:48 AM

The whole bus thing was a little over the top though.

My youngest is allergic to peanuts and we will have to teach him about it when he gets older. I will have to send his own snacks just in case if a student does bring something with peanuts in it.

My oldest child's school is great about the staff being notified if our child is allergic to peanuts.

deathbysexiness
by on Aug. 19, 2011 at 10:16 AM
It's not fair, but since it's a private school, they do have the right to turn students away.
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Gryeyedgrl
by on Aug. 19, 2011 at 10:22 AM
Yeah they do, but they should have told them that up front.


Quoting deathbysexiness:

It's not fair, but since it's a private school, they do have the right to turn students away.

Posted on CafeMom Mobile
Kitkat61277
by on Aug. 19, 2011 at 1:45 PM
I think it's the parents responsibility to keep their kid safe from allergies, not the school or the airline...if a child has such a severe allergy why does the parent want ot risk it? There was a story about a mother who had to rewash her kids and make them change clothes and brush teeth before taking them to school if they had a peanut sometime after their last bath. Overboard. Evacuating a school bus because a peanut was on the floor? Ridiculous.
Stormy6669
by on Aug. 19, 2011 at 1:58 PM

I agree with you. You can't punish or exclude a school full of kids just because one has an allergy. Seems like the feelings of exclusion would be more detrimental and effect more kids who don't have an allergy then the few kids that do. You can't stop the world for one person, you learn how to keep them safe. Teach the kid that they can't have certain things. Instead of just taking it away from all! This article can be twisted around and the same things could be said about the kids who don't have such allergies but are treated as they do. It's a sad and scary situation to have such an allergy, but in the end it is the parents responsibility to keep their children safe, not everyone else in the world! Maybe if the allergy is that bad, then the kid really shouldn't be going to schools anyway. This would be a case to home school. To KNOW that your kids are safe. I don't have a kid with allergies. If I did, it wouldn't change my opinion on this.

Quoting Kitkat61277:

I think it's the parents responsibility to keep their kid safe from allergies, not the school or the airline...if a child has such a severe allergy why does the parent want ot risk it? There was a story about a mother who had to rewash her kids and make them change clothes and brush teeth before taking them to school if they had a peanut sometime after their last bath. Overboard. Evacuating a school bus because a peanut was on the floor? Ridiculous.


tomib
by on Aug. 19, 2011 at 2:02 PM

Its not punishment.  Again unless yo ulive with a child you can't understand what its like.  i agree, evacutating the bus seems over dramatic.  But having nut free classrooms and flights arent.

Stormy6669
by on Aug. 19, 2011 at 2:07 PM

This is like saying we should ban peanuts from the world because a few can't eat them. Not going to happen. You learn to deal with it the best you can and teach your child what they need to do, or not do, to be safe. We can't all stop the world for one person...It is selfish of the parents to think we might! What a way to exclude our kids and make them feel teased and punished!

tomib
by on Aug. 19, 2011 at 2:12 PM

But we can create safe environements for them when they are young.  DS knows not to share food and have an adult check to make sure ts safe.  The rule in our class was if you are bringing something that contains nuts to class u labeled it.  well one parent brought something containing walnuts and failed to label it.  DS ate it and had a reaction.  is it fair to him after understanding the rules he still gets sick?  no

Its not selfish at all.  Its sad you think so.  If your child had a medical condition I guarantee you would do your best to give that child as much normalcy while tryign to do your best to protect them.

Stormy6669
by on Aug. 19, 2011 at 2:14 PM


Quoting tomib:

Its not punishment.  Again unless yo ulive with a child you can't understand what its like.  i agree, evacutating the bus seems over dramatic.  But having nut free classrooms and flights arent.

I disagree. It IS a punishment to the other kids. Not sure why you can't see that. Lots of people have all sorts of disabilities. But you don't see them trying to change the world so they feel they fit in more. No, they learn to deal with it the best they can and do what they know is right for that individual. Not make everyone suffer because you can't have. I know this as I myself am chronically ill and can't eat much stuff myself. I am on a very restricted diet. No fat! Does that mean I am taking all the fat out of my house and don't let my family feel normal? Not a chance. I know what I can and can not eat. And yes, eating certain things will KILL ME! I have pancreatic failure. But I don't make my family suffer because I have to. I do what is needed for me, and let my family eat normal. I would never ask the world to do away with fat just because my body does not digest it. The thought just seem ludicrous to me.

Stormy6669
by on Aug. 19, 2011 at 2:18 PM


Quoting tomib:

But we can create safe environements for them when they are young.  DS knows not to share food and have an adult check to make sure ts safe.  The rule in our class was if you are bringing something that contains nuts to class u labeled it.  well one parent brought something containing walnuts and failed to label it.  DS ate it and had a reaction.  is it fair to him after understanding the rules he still gets sick?  no

Its not selfish at all.  Its sad you think so.  If your child had a medical condition I guarantee you would do your best to give that child as much normalcy while tryign to do your best to protect them.

You are right I would. But I would never ask my normal kids or others to do without just for my one child. So your kid shouldn't be eating ANYTHING home made brought in by others. This should be a rule YOU teach them! Does that mean just because your one child can't that we need to take away from all the kids who can? What about normalcy for the rest of the kids. Why is it ok to take that away from the kids with no such allergy? Seems like a double standard there.

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