Patient StoryJul | 23 | 2019
Nicholas’s Story: Food Challenges Take Toddler from Restrictive Diet to Food Freedom
Perched upon his booster seat, Nicholas clapped as a mini muffin appeared on his plate. As any eager 2-year-old would, he scarfed it down and promptly asked for more. It was a tense moment for everyone in the room – except Nicholas. His parents and care team in Pediatric Allergy and Immunology at MassGeneral Hospital (MGfC) were waiting to see if Nicholas, who was allergic to milk, would have a reaction. A few minutes passed and with all signs of an allergy nowhere in sight, Nicholas happily munched on another muffin.
When Nicholas was 4 months old, his parents, Cara Wardon and Colin Weeks, of Smithfield, RI, wanted him to try peanut butter. A few minutes after his first bite, Nicholas became cranky and broke out in hives. Future allergy tests revealed that Nicholas was also allergic to milk, eggs, mustard and all tree nuts. Previous doctors did not recommend allergy testing or alternative dietary options for Nicholas, leaving Cara unsure of what her son could eat.
“We were kind of at a loss on what to feed him or if he could have milk alternatives,” said Wardon. “The steroids he was taking at the time weren’t working and food allergies in children can be a lot to handle. It was a very overwhelming experience.”
A conversation with the parents of Nicholas’s daycare buddy led Cara to MGfC. Nicholas’s friend had been coming to MGfC for allergy and eczema care and her parents thought Nicholas would benefit. Desperate to help, the family of Nicholas’s daycare friend faxed a handwritten letter to the Food Allergy Center at MGfC. Jennifer Stockbridge, NP, a family nurse practitioner in Pediatric Allergy and Immunology at MGfC who had been caring for Nicholas’s friend, was touched by the letter and helped get Nicholas in for an appointment.
Cara WordenI cannot put into words how amazing it has been at MGfC and how Nicholas and our family can now live a normal life.
Mother of Nicholas Weeks
After Nicholas’s initial consult and allergy testing, Stockbridge recommended that he complete a food challenge, the gold standard for accurately diagnosing or ruling out a food allergy. During a food challenge, a patient eats a particular food slowly and in gradually increasing amounts under the supervision of a medical provider. MGfC is one of the few Boston area hospitals that conducts food challenges both individually and in groups, in which up to five children around the same age eat the same type of food.
Research has implied that early introduction of some highly allergenic foods can help protect children in the long term, said Stockbridge, NP. This is part of the Food Allergy Center’s innovative approach to food challenges with babies and toddlers. This early exposure helps us to expand the possibilities of their diets.”.
Group food challenges last about four hours, during which Michael Pistiner, MD, and his team meet with families, monitor patients and give group lessons on reading food labels, how to use an auto-injector, how to make decisions when eating out and more. It also gives families a chance to meet one another and have in-depth conversations with providers.
“Since toddlers and babies cannot express how they’re feeling, this group setting lets us watch them play. We base how they’re doing on their demeanor,” said Pistiner, director of the Food Allergy, Advocacy, Education and Prevention Program at MGfC. “We play with them and see how well they can be distracted if there is a potential reaction.”
Since coming to MGfC in October 2018, Nicholas has completed food challenges for baked egg, baked milk, peanut and almond – and passed them all. He also cautiously tried pecan and walnut at home, and recently outgrew his mustard allergy. The care team determined that his only remaining tree nut allergies include cashew and pistachio.
“Early on, I was worried that Nicholas wouldn’t be able to go to birthday parties or social gatherings because his allergies were so severe. Even coming into contact with certain foods would cause a reaction on his skin,” said Wardon. “This is a big deal for Nicholas now, he can enjoy birthday parties like any other kid, which he has never been able to do before.”
Another distinctive feature of the Food Allergy Center’s approach is using shared decision making when approaching treatment options. “I was touched by that because parents are so different in how they care for their children and MGfC respected that,” said Wardon. “He let me lead and he followed. I cannot put into words how amazing it has been at MGfC and how Nicholas and our family can now live a normal life.”