Leo Wheatland has had several close calls because of his numerous food allergies. At a classmate’s birthday party two years ago when he was 6, Leo ate a cupcake decoration that no one knew had been brushed with egg. His throat started closing, his lips swelled and hives broke out all over his body. His mother injected him immediately with epinephrine. Fortunately, epinephrine is an extremely effective medicine. Whereas food allergy affects millions of kids and causes hundreds of thousands of emergency department visits each year, the vast majority do well.
Leo started life very sick and was originally allergic to peanuts, nearly all of the tree nuts (cashews, pistachios, almonds, pecans and walnuts), as well as egg and other foods. Since he was 2, he’s been a Food Allergy Center (FAC) patient of Paul Hesterberg, MD, the clinical director of Pediatric Allergy and Immunology at MassGeneral Hospital for Children.
Currently, the only treatment for food allergies is to eliminate the offending food from the diet and to use an EpiPen injector for accidental exposures. There are finally some new treatment approaches in clinical research trials conducted by the FAC and other sites around the country, but in the meantime, the Food Allergy Center helps families cope with their food allergies.
Help Just a Call Away
“You always have to be vigilant,” says Leo’s mother, Rose Ann Miller, who lives in Belmont, Massachusetts, with her husband, Tom Wheatland, and Leo and his twin, Miles.
What’s helped immensely, she says, is that the FAC is just a phone call away. She can send Dr. Hesterberg a photo of a rash to see if they should be concerned. She consults Lisa Stieb, RN, the center’s nurse, for advice on navigating food allergies at summer camp, school or while traveling. Psychologist Nancy Rotter, PhD, is available with strategies to ease heightened anxiety and dietitians help with meal planning. The FAC team also includes gastroenterologists for those with digestive disorders related to food allergies.
“When Leo was first diagnosed, I was a new mom,” Rose Ann says. “The great thing about the FAC is that now we are equipped emotionally with information on how to live with food allergies.”
Shorter List of Food Allergies
Central to FAC’s care, Dr. Hesterberg points out, is that “food allergies are not set in stone. We can often re-introduce foods back into the diet.” This is done carefully and safely at the FAC through what are called “food challenges.” A suspected or known allergic food is given to the child in increasing amounts over several hours to see if he or she can tolerate it. Food challenges are the gold standard for confirming diagnoses of food allergies, more accurate than skin prick and blood tests. They are also done if there’s reason to suspect a child has outgrown a food allergy.
“Passing” the challenge is a reason to celebrate. Because of food challenges Leo has passed, he can now eat cashews, hazelnuts, pistachios, walnuts, pecans, garlic, tomatoes and almonds. One nut alone made a big difference for Leo. He loves and can now eat Nutella, a hazelnut spread. Egg has been elusive for him, however, and he has “failed” egg challenges three times.
A Warm and Inviting Place
Food challenges can be scary, but Leo never hesitates to try it again. “He doesn’t mind going because it’s a warm and inviting place where he can watch movies and joke with the nurses,” his mom says.
Perhaps next year, Leo will be able to add egg to his diet. Or one of the new therapies to treat peanut allergies will be approved.
“With everyone’s help at the Food Allergy Center, we’re having a great life,” Rose Ann says. “One step at a time, we’re moving ahead and Dr. Hesterberg gives us the confidence to do so.”
For more information about how you can support the Food Allergy Center’s research into new treatments, please contact us.