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After participating in a clinical trial at Children’s Memorial Hospital of a new drug therapy to combat his chronic allergic inflammatory disease, Connor's life has been transformed.
Connor McLean says the worst year of his life was seventh grade. After weeks-long episodes of almost constant vomiting, solid foods were eliminated from his diet. He could only eat soup from a thermos, missed 45 days of school and was twice rushed from school to his local hospital emergency department in Chicago's western suburbs by ambulance. This wreaked havoc on his academic and social life. “The whole throwing-up thing was kind of limiting,” Connor, now age 15, says dryly.
From birth, Connor had had serious allergies, along with eczema, sinusitis, frequent ear infections and asthma. “He was allergic to everything, both food and environmental. It took very little to make him sick a small bite of food, a whiff of perfume,” says his mother, Amy.
Connor began to take allergy medications at 12 months of age. It wasn’t until the fall of his fifth grade year that the vomiting problem started, and by Christmas he had lost six pounds from his already thin frame. Amy brought him to Children’s Memorial Hospital, where he began treatment with the specialists in the Division of Gastroenterology, Hepatology and Nutrition, and was eventually diagnosed with eosinophilic esophagitis, or EE.
EE is an allergic inflammatory disease in which the wall of the esophagus becomes filled with large numbers of white blood cells, called eosinophils, that promote inflammation and damage the tissues of the esophagus. Standard treatments include anti-inflammatory medications or a food elimination diet. Unfortunately for Connor, nothing helped for long.
When Ameesh Shah, MD, co-director of the EE program at Children’s Memorial, suggested that Connor participate in a clinical trial for a new drug therapy, mom and son began to have new hope. “Though many EE patients respond to the usual treatments, there’s a subset of kids that don’t,” says Dr. Shah. “It’s important to be able to offer patients the opportunity to participate in trials of new medications being studied. This treatment worked well for Connor, and he’s now symptom-free.”
In fall 2008, when he was 13, Connor became the first patient to be enrolled in the study. Prior to starting the trial, he had an EKG, blood draws, an endoscopy and other tests before the first of many monthly brief infusions of the new drug. Within three months, Connor was feeling better, and vomiting much less, which “really helped my disposition,” he admits.
Eighteen months later, Connor says his esophagus is now “clean” following two normal endoscopies. While he continues to experience some minor health challenges, his EE and eczema have now resolved, his asthma is greatly improved and he can eat most foods. Connor can now participate in extracurricular activities, like his high school gymnastics team, since his condition no longer precludes him from attending daily practices. He’s also pursuing burgeoning interests in film-making and music. Connor can stay in the study and continue to receive monthly infusions until the age of 19 or when the FDA approves it, whichever comes first.
“This clinical trial has been life-changing,” Amy says. “It's opened up the possibility of a normal life for Connor.”
The eosinophilic esophagitis research program is generously supported by the Buckeye Foundation and Denise and Dave Bunning.