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Families learn to cope with food allergies as awareness, support increase

Chelsey Jordan, 18, is a high school senior who is active in school clubs and works part-time.

Ed Popek, 8, is in third grade and likes to play with Legos.

And Annabelle Piccirillo, 4, was able to eat at an ice cream social a few weeks ago.

These are the faces – and life experiences – of a generation of children in Western New York who have food allergies.

At one time, the idea that someone could be allergic to certain kinds of food was puzzling to the public. People would shrug off the notion of a child’s life being in danger if they came in contact with a peanut or other food.

Families with allergic kids still hear some of that. But now, 15 to 20 years after the world first started hearing much about this health issue, the social and legal environment has shifted.

There’s more awareness, some said. Support from others with allergic kids, friends and community can be moving.

“It wasn’t really a support system like it is now,” said Karen Jordan, Chelsey’s mom, of how it was years ago to have a food-allergic child.

There’s hope, too – in areas ranging from the technology for treating reactions to scientific research.

“There’s a lot of exciting research,” said Chelsea Leone, a mom from Amherst who said her 7-year-old daughter is a food-allergic child.

Ed Popek, who will turn 9 in May, said he feels better about being able to manage his allergy to peanuts.

“I know how to read labels,” said Ed, who reads “Wimpy Kid” books and has a younger brother. “I know how to stay safe.”

Yet, some in the food allergy community said, there is still a lot of ground to cover in education and awareness where food allergies are concerned. There are still misunderstandings about the condition – and what it means for kids, they said. There still can be a lot of anxiety and alarm.

“I think people sometimes think an allergy is like lactose intolerance,” said Tracy Hurley, a mother of three from Amherst. “They don’t understand your child could die.”

Today, there are ways in which families with food-allergic children remain different.

They can’t go to many restaurants casually. Some skip events like Sabres or Bills games. They often have to take precautions for holiday meals and birthday parties – by taking along their own food, or hosting events in their homes.

“Only my husband or I make her food. We can’t eat at a restaurant,” said Sarah Piccirillo of her daughter Annabelle, who has allergies to milk, egg and other foods. “That’s just too risky.”

Despite plenty of changes in the world around them, daily life remains a challenge – one with risks.

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Dr. James R. Baker Jr., CEO of the Virginia-based group Food Allergy Research and Education, said that the causes of the rise in food allergies are among the things still not well understood. When he was treating allergies in children decades ago, such conditions were rare, he said.

“At that point in time, it was a curiosity,” Baker said. “We’d see one case every six months, and we’d call in all the trainees.”

Dr. Gale Burstein, Erie County’s health commissioner, said that the ways that food allergies are being detected also are changing.

“We are doing a much better job at being able to identify and diagnose food allergies,” said Burstein.

Parents themselves see more children with food allergies.

“I would say it’s a lot more common now,” said Leone. “But there’s still a lot of education that needs to take place.”

Efforts are under way in various places in the country to find ways to prevent food allergies or alleviate them.

At Stanford University’s School of Medicine, some allergy research is based on the idea of desensitization, or slowly exposing the body to more of the allergic substance, according to an expert at the university.

“There are about 240 milligrams of protein in a peanut. We typically start out ... desensitization with 1.5 milligrams,” said Whitney Morgan Block, a nurse practitioner who is also a researcher at Stanford’s Sean N. Parker Center for Allergy Research. “A little speck of peanut dust.”

Over a period of weeks, the body gets accustomed to the food.

“It is an increase, and it kind of tricks their body into not reacting,” said Block. “It can take up to a year to eat up to a full serving of protein.”

A study released last week that focuses on peanut allergies – and what happens when babies eat peanuts – might affirm those concepts.

In the study, released by researchers at a meeting of the American Academy of Allergy, Asthma and Immunology, children who were determined to have a possibility of developing allergies and who were exposed to peanuts from very early ages developed peanut allergies at lower rates than babies who did not eat the foods, according to the study and to materials provided by the group.

Results have been published in the New England Journal of Medicine.

As for how many children are food allergic, statistics vary. One more recent study, published in Pediatrics in 2011, included about 40,000 children and found that 8 percent had food allergies – and of those, almost 40 percent had severe allergies, the study showed. That number was higher than some other estimates; the 2011 study, based on data collected in 2009 and 2010, got funding from the Food Allergy Initiative, which was an organization that preceded and became part of FARE, an education and advocacy group, according to the group.

Figures from the Centers for Disease Control and Prevention in Atlanta showed that the number of children in the country with food allergies went up 18 percent over the decade ending in 2007.

“When I grew up, I knew no one,” said Hurley, who is co-chair of an annual allergy walk in Buffalo to raise money for FARE. “I didn’t know a single person.”

“And now it’s so common, it’s scary.”

Piccirillo, from Williamsville, said she hasn’t yet seen as many changes for food allergic children as she thinks will happen in the future. Her daughter was thrilled to be able to enjoy the dessert social at her nut-free pre-K program in February, she said, which was made inclusive for Annabelle’s food allergies.

“Her face was priceless,” Piccirillo said.

Allergies are common enough that Gov. Andrew M. Cuomo last fall gave schools the ability to keep treatment for allergic reactions on hand. The law permits nurses or other trained staff to use epi pens or other injectors on students in cases of allergic reactions, without having to have prescriptions for those students.

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Karen Jordan remembers what happened when she fed Chelsey as a 2-year-old a dab of peanut butter on some apple. “Her lips swelled up. She had a very wet cough. She was vomiting for two hours,” said Jordan, of Orchard Park. “She had hives.”

That was years ago. Now, Chelsey is looking forward to college. She plans to commute, to avoid having to worry about her allergies in a dorm. “It’s just easier,” Chelsey said.

Having food allergies still means practical challenges for families. Families with allergic children have to buy carefully vetted groceries and prepare food with caution. There’s not a lot of trying something new from a bakery or deli. There’s a lot of label reading – and comparing notes with other parents of allergic kids.

For some, such comparisons have become easier through social media.

“It’s a great connection,” said Christine Popek of Orchard Park, whose son Ed was found to have a peanut allergy as a baby. Ed was part of a story in The Buffalo News when he was 2. His parents started a support group for families of allergic children, Food Allergy Support Services, with a website, cleanoutthepantry.org.

Leone, whose daughter is allergic to peanuts and tree nuts, also started a group for families with food-allergic children. She said the food allergy “pretty much changed our world.”

Piccirillo knows the feeling of being watchful and wary about Annabelle. Her husband is a chef, and they have another daughter who is 2.

“We take her food with us wherever we go,” said Piccirillo.

email: cvogel@buffnews.com