Six-year-old Shane Cohen is allergic to so many foods that he cannot safely eat at a restaurant. “We have not ever been to a restaurant as a family,” says his mother, Jessica Cohen of Doylestown.
“We take food for him everywhere, along with epinephrine and a fast-acting antihistamine. All of his foods have to be made from scratch or in a special facility to ensure that there is no cross-contamination. We have to be careful at home, too, making sure that utensils are used only to make Shane’s food and nothing else.”
At school, Shane’s teacher contacts Cohen before every celebration so she can send in a treat for him and keeps a box of safe treats in the classroom for unforeseen occasions.
“He has a lot of support from friends and family, but sometimes it just hurts to feel left out,” Cohen says.
When children are diagnosed with food allergies—as more than 3 million children across the country have been—parents can feel alone, overwhelmed and confused.
But because of Doylestown resident Lynda Mitchell, families like the Cohens can connect online with others to learn how to make their lives easier and their children’s lives better.
“Food allergies present unique challenges that only other families raising children with food allergies can understand,” says Mitchell, president and founder of the national nonprofit charity Kids With Food Allergies (KFA).
Yet when her son, Matt, was diagnosed with food allergies years ago, she had no such resource. So in 2005, she created the support system she would have liked to have. Today, KFA offers the largest online support community for families raising children with food allergies and related conditions.
Given the unprecedented growth in kids with food allergies these days, KFA now helps more than 20,000 families across the country cope with dietary restrictions, lifestyle adjustments, fear and isolation.
“When we decided to move to the Philadelphia area, we had just learned the extent of Shane’s food allergies,” Cohen says. “Lynda Mitchell was the first person I called—even before a realtor!”
Cohen says that KFA has been tremendously helpful, with parent forums where she can get advice from others who have been in her shoes.
“It is extremely difficult as a new mom to find out that your child has a potentially life-threatening food allergy,” she says. “There is just so much to learn, from how to spot hidden allergens in foods to using an epinephrine injector.”
Cohen knew Shane was allergic to dairy because he had colic as an infant. But because he was underweight and a picky eater, the doctor urged her to try more foods. Shane would not touch eggs and threw up and broke out in hives the first time he tasted peanut butter. That’s when the Cohens learned he had a food allergy-related disease called eosinophilic esophagitis.
“What I tell parents now is to trust [the child] if they refuse a food,” Cohen says. “Consider the possibility that they may be trying to tell you something.”
For the Atkins household on the Main Line, a love for food runs in the family, but their four children’s allergies have made dinnertime tricky.
“We are a foodie family,” Sara Atkins says. “My sister went to the Restaurant School and is a chef. My father used to own a restaurant. We have had to re-invent how we deal with food.”
Six-year-old Tevye was sick from the day he was born with massive congestion that was written off as a cold until he was five months old and stole a pancake from his brother. That day, he had his first anaphylactic reaction. His parents learned he was allergic to egg and wheat. He is also allergic to peanuts, tree nuts, seeds, fish and lentils, too.
Zusil, now 7, has outgrown his allergies to dairy, soy, mustard, nuts and artichoke. They learned of his allergies through trial and error.
When Freida, now 4, was just five weeks old, her now-experienced-with-food-allergies mother, Sara, found KFA and was able to identify her allergens rather quickly—cocoa bean, dairy, seeds, eggs, peanuts and tree nuts.
They learned that Moshe Leib, 1, is allergic to peas through food trials at National Jewish respiratory hospital in Denver.
“The real positive is by being forced to rethink how we eat. We eat less processed food and more food made from scratch,” Atkins says. “We even started a family garden.”
Atkins credits KFA with being her rock as she sailed the uncertain seas of food allergies. “When I first found [KFA], I was slowly unraveling,” Atkins recalls. “They healed me with their support and love. I will always credit them with saving my children’s lives.”
The parent resources KFA offers, mostly for free, include a 1,000-recipe database; publications with news and stories of other families; and information sheets to help teachers, family, doctors and friends learn more about food allergies.
“When Lynda’s son was diagnosed they didn’t have support groups like this,” Atkins says. “It’s because of moms like her that moms like me have so much at our finger tips. She works so hard and is so dedicated. We couldn't have a better leader.”
FAMILY EVENT
If your child has been diagnosed with a food allergy, mark your calendar for a free family event just for you. For the second year, Whole Foods in North Wales will host the Food Allergy Dance-a-Thon, Family Fun Event & Expo on Sunday, Sept. 12, from 1 to 3 p.m.
The expo benefits Kids with Food Allergies, the national nonprofit
organization that offers parents information, recipes and free
online support.
For more information, visit www.kidswithfoodallergies.org
Maria Martino Evans is a writer and PR professional in Pipersville.
Michael Sahadi is a freelance photographer based in Philadelphia (MichaelSahadi.com)
