Children With Food Allergies Often Face SkepticismLast Updated: August 19, 2011. Study found that even family and friends can be less than supportive.
By Jenifer Goodwin
FRIDAY, Aug. 19 (HealthDay News) -- When Bela Mehta's toddler son was diagnosed with a severe peanut allergy, she carefully explained to her parents and in-laws that ingesting even the tiniest amount of peanut could cause a life-threatening reaction.
Yet when the grandparents came over to babysit, Mehta would come home to find that they'd brought over desserts that contained peanuts, or that they were continuing to make dishes containing peanuts using her blender.
"I said, 'If it was labeled poison, or cyanide, would you still bring it here?" said Mehta, a mother of two who lives in Chicago. "That's how dangerous it is to him."
Despite having a close-knit, involved and loving family, Mehta has struggled to make sure relatives understand just how seriously they need to take her son's food allergy. Her experiences are far from uncommon, according to a new study.
British researchers found that families with children who have nut allergies often feel like others suspect they're just being neurotic, while some children described being taunted or feeling excluded during social events. In the study, published online Aug. 16 in the journal Chronic Illness, researchers interviewed 26 families dealing with nut allergies, including parents, children and teens.
"What they described is really a very difficult set of experiences," said senior study author Mary Dixon-Woods, a professor of medical sociology at University of Leicester. "In virtually all cases, the child has had a very extreme reaction to nuts. Parents described it as being very frightening. It often involved a dash to the emergency room to get treatment. They didn't know what was going wrong, and the child often had symptoms like swelling and difficulty breathing."
Nearly 6 million U.S. children -- or about one in 12 kids -- are allergic to at least one food, with peanuts, milk and shellfish topping the list of most common allergens, according to research published in Pediatrics in July.
Among kids with food allergies, 25 percent were allergic to peanuts and 13 percent were allergic to tree nuts.
Peanuts can cause a severe, potentially life-threatening reaction known as anaphylaxis -- wheezing and trouble breathing, vomiting, swelling, persistent coughing that would indicate airway swelling, and a dangerous drop in blood pressure.
Though researchers are studying immunotherapy -- including desensitizing children to an allergen by gradually giving them increasing amounts of it -- that's mainly limited to clinical trials and not all children are candidates.
For now, the primary treatment for peanut allergies is avoidance. Parents are told to have EpiPens, which contain epinephrine (adrenalin), on hand at all times.
To protect their kids, many parents read labels and are vigilant about keeping peanuts out of their home. But creating a "safe environment" is more difficult outside of the home -- in schools, restaurants, on airplanes, or when their children are in the care of others.
Some parents described incidents in which family and friends had deliberately given their child nuts to test if the allergy was real.
There should be no question about that, said Dr. Ruchi Gupta, an associate professor of pediatrics at Feinberg School of Medicine at Northwestern University in Chicago who studies food allergies.
"Peanut allergies are very life-threatening," Ruchi said. "Kids with a peanut allergy can have shortness of breath. Their throat closes. Their blood pressure drops and if not treated immediately, it can lead to death."
Some families cope by never going to restaurants, cooking all food from scratch and avoiding parties and other events where nuts could be served, according to the research. Families also reported feeling stigmatized and socially excluded, while children reported teasing. Other kids would say, 'I've got nuts and I'm gonna come touch you'," according to the study.
But not all parents said they faced such social difficulties. Julie Gillie, whose 16-year-old son has a peanut allergy, has often asked people to not serve peanuts or to put away peanuts at social gatherings.
"I don't think I've had an experience with people not understanding. If they've got peanuts out, I'll say, 'I'm not being rude, but my son is allergic to peanuts, and I've never had a problem with it," said Gillie, who lives outside London. "Obviously, people don't want anyone to do poorly."
After her son was diagnosed, even Mehta's husband, a cardiologist, struggled to accept that her son really couldn't eat so many of the foods that were a staple of their Indian diet, she said.
Mehta's son was eventually also diagnosed with allergies to tree nuts, all grains --including wheat, barley and millet -- sesame, several fruits, lentils, beans and soy. For lifelong vegetarians, the food restrictions have been difficult, Mehta said.
Eventually, she brought her husband, parents and in-laws to an allergist's appointment and let the physician explain just how serious the food allergies were.
"I know the grandparents love our kids, there is no question about it," Mehta said. "I've found that the more involved they are in the allergy discussion, the more on the same wavelength we are."
The Food Allergy Initiative has more on food allergies.
SOURCES: Mary Dixon-Woods, Ph.D, professor, medical sociology, University of Leicester, England; Bela Mehta, mother, Chicago; Julie Gillie, mother, London; Ruchi Gupta, M.D, associate professor, pediatrics, Feinberg School of Medicine, Northwestern University, and attending physician, Children's Memorial Hospital, Chicago; Aug. 16, 2011, Chronic Illness, online