For siblings PJ, 13, and Alana, 11, every day is filled with small but meaningful victories that hint at the breakthrough treatment they received at Children's Hospital of Philadelphia (CHOP). Sitting at a school lunch table with peers. Eating pizza. Touching anything with nuts. Not asking the ingredients of every meal. And best of all, no longer living in constant fear of a severe allergic reaction to certain foods.
Both siblings have IgE-mediated food allergies and were successfully treated with oral immunotherapy (OIT), a novel treatment approach spearheaded at CHOP. In oral immunotherapy, children eat very small amounts of the food or foods they are allergic to, and gradually become desensitized to its effects.
Their mother, Shannon, could not be more grateful to CHOP and encourages other parents considering oral immunotherapy to "go for it."
"I know it can be scary, but it was worth the risk because OIT can be so life-changing for your child," Shannon says.
“It gave my kids a new lease on life, and the peace of mind it gave my family is priceless.”
When food allergies started
More About IgE-mediated Food Allergies
PJ's food allergy odyssey began when he was just a toddler and his family received a panicked call from daycare. PJ's skin had touched peanuts and he broke out in a rash.
Shannon gave PJ an antihistamine and took him to a local allergist who confirmed the toddler was allergic to peanuts, a condition that affects 1 in every 50 children. PJ was given a prescription for an EpiPen® and told to avoid eating or coming into contact with peanuts.
Given PJ’s challenges, Shannon did all she could to try to help her newborn daughter avoid developing food allergies. But when Alana broke out in raw eczema patches while nursing and later developed stomach issues, Shannon knew something was wrong.
Early blood tests revealed Alana was allergic to peanuts like her brother, but also wheat, egg, dairy and soy. All the food allergies were IgE-mediated allergies and produced immediate adverse reactions when the children encountered the "trigger" food or foods.
Seeking answers at CHOP
Shortly after Alana's diagnosis, Shannon sought help from CHOP's allergy team and was referred to Jonathan Spergel, MD, PhD, Chief of the Allergy Program at CHOP. Dr. Spergel managed the children's care, but also shared news about promising new research and clinical trials related to food challenges that CHOP was involved in. He asked Shannon if her family would be interested in participating in the future. She was intrigued.
When PJ was 8 years old, he was selected for a double-blind, multifaceted study led by Dr. Spergel. The goal of the study was to determine if pretreatment with an anti-IgE therapy, would allow for faster and safer desensitization with oral immunotherapy. The therapy is an injectable medication used for patients with moderate to severe allergic asthma and works by blocking IgE that binds to allergens causing the reaction.
“It was the first time we had hope that something might change,” recalls Shannon. Still, there were risks to the study medication and oral immunotherapy itself. PJ would have to ingest miniscule amounts of peanuts and he could have a severe adverse reaction. Shannon asked PJ what he wanted to do and he said he was willing to try.
PJ had severe reactions from the first study and his family learned he was receiving a placebo instead of the study medication. Soon after, he was able to restart OIT — this time with the pretreatment medication — and it was successful.
At first, PJ struggled to eat the daily dosage which included powder from about 1/50 of a peanut mixed with a food of his choice. He had to return to the hospital every two weeks for a gradual dosage increase under clinical monitoring.
By the end of two years, PJ could safely ingest 4 grams of peanut protein (equal to 17 whole peanuts) without severe adverse reactions.
Another clinical trial
While PJ was undergoing OIT, clinical team members approached Shannon about the possibility of Alana, then 7, participating in a separate study for children with multiple food allergies.
"I had done all the research and knew without doubt that I wanted her to participate,” Shannon says. Alana, who was one of the first children in the new clinical trial, was also excited to participate.
This time, however, all study participants received four shots of the pretreatment medication before oral immunotherapy began. Over the next 10 months, Alana was successfully desensitized to milk, sesame, walnuts, cashews and hazelnuts.
Happy, healthy siblings
Today, both PJ and Alana must continue to eat small amounts of the foods they were previously allergic to in order to remain desensitized. For PJ, that means eating one peanut a week. For Alana, it means eating special brownies that her mom makes from scratch that contain four allergens including nuts and sesame, and eating foods that contain milk.
“They have to constantly expose themselves to these things to stay safe,” Shannon says. “They understand the magnitude of it and are committed to it.”
Shannon can’t say enough positive things about the Food Allergy team at CHOP, including Dr. Spergel; Megan O. Lewis, MSN, CRNP, nurse practitioner and program manager for Allergy Research; Courtney Rooney, BSN, RN, clinical research nurse coordinator with the Division of Allergy and Immunology and the Food Allergy Center; and others who have become like extended family. She's also impressed by her two children who’ve overcome extraordinary obstacles.
Thanks to CHOP, she says, PJ and Alana no longer feel different or self-conscious about what they can and can't eat. They no longer must sit at allergy-safe tables at school or pack special foods when they go out to eat as a family.
The siblings return to CHOP once a year for follow-ups and continue to carry EpiPen if an emergency should ever arise.
The experience has been life-changing for Alana who had her first slice of pizza last year and loved it. Alana says eating pizza with her family and friends ranks at the top of her happy list.
“It was a defining moment.”