Crohn's Disease: Eddie's Story

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A stomach bug was the first explanation when Eddie, 11, had a bout of diarrhea five years ago. But the problem persisted for months. After a Crohn’s disease diagnosis, Eddie tried various treatments and experienced terrible side effects. Now on a new therapy, he’s back to playing basketball, but his story shows the challenges of inflammatory bowel disease (IBD).

Eddie Eddie was 6 years old and had recently started playing basketball, the sport he has become truly passionate about. But his diarrhea just wouldn’t go away. “We stopped milk to rule out an allergy,” says his mother, Tracy. “The pediatrician thought it was constipation. He had X-rays and started a high-fiber diet.” Instead of improving, though, Eddie got worse: Some days he would have diarrhea eight times.

The once-energetic boy was now lethargic, thin and pale. The family turned to Children's Hospital of Philadelphia (CHOP) and saw Samantha Fish, MD, a gastroenterologist at the Center for Pediatric Inflammatory Bowel Disease. Blood work, stool samples, a colonoscopy and an endoscopy followed, resulting in a Crohn’s disease diagnosis. “Eddie had just turned 7,” Tracy remembers, “and we found out he had not grown in a year.”

The symptoms keep returning

Finding the most effective form of treatment for Eddie would be challenging. Treating Crohn’s disease is very complicated, and there’s no single drug or combination of drugs that works for every child. Patients respond to treatments in different ways, so it can take various lengths of time to discover the most effective approach.

Eddie was started on an oral anti-inflammatory agent. “It helped for about four weeks, then the symptoms came back,” says Tracy. He was put on steroids while he tried enteral nutrition, which meant he got most of his calories through a nutrition-rich liquid. “When he started to be weaned off the steroids, the symptoms returned,” remembers Tracy. “That first year I couldn’t talk about it without crying.”

This led to a different treatment: infusions of a synthetic antibody, which he received every four weeks for the first year, then slightly less frequently. The infusions put his symptoms into remission, and he was back to his spot as point guard on the basketball team. “And he was smiling again,” says Tracy.

But the challenges continued. The synthetic antibody caused psoriasis on Eddie’s head, resulting in bald spots and a build-up on his eyelashes. He had sores around his nose and behind his ears. The family consulted CHOP’s Dermatology Section and saw Patrick McMahon, MD. “He helped us get it under control,” says Tracy, “but Eddie was tired of having creams and oil on him every night for over three years.”

Landing on a successful therapy

In spring 2018, the family and his medical team became determined to try a different treatment for the IBD after the build-up on Eddie’s eyelashes caused scratched corneas in both eyes. “It really scared me,” explains Tracy. “He was so sensitive to light, he couldn’t open his eyes outside. Any light even inside the house was too much. He missed two weeks of school.” A solution needed to be found.

A few months later, Eddie went through his second colonoscopy and endoscopy in order to switch treatments to a monoclonal antibody — with excellent results.

Today, Eddie enjoys eating pizza and doughnuts and playing online games. Best of all, he was recently selected to join an Amateur Athletic Union basketball team, and he loves showing off his dribbling skills.

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