Crohn’s Disease: Kaylen’s Story

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Kaylen, 10, has a unique ambition: When she grows up, she wants a dual career as a soccer player and a baker. “She plays for the South Jersey Elite Barons Soccer Academy,” explains her father, Rick. “And she’s always baking snacks for family and friends,” adds her mother, Laura. But a diagnosis of inflammatory bowel disease (IBD) took her off the field and away from the kitchen while various treatments were tried.

Kaylen smiling Kaylen’s problems started in August 2016 when she began having blood in her stool. “We waited a few weeks to see if it would go away, but it progressively got worse,” remembers Rick. There was an increase in the frequency and amount of blood.

An endoscopy and colonoscopy revealed her large intestines were inflamed, and Kaylen was diagnosed with early-onset inflammatory bowel disease — specifically ulcerative colitis. She was prescribed an anti-inflammatory drug via oral and suppositories to reduce the inflammation.

Too much pain to play

After a few months, however, her symptoms worsened. “At any moment, she would double over from stomachs pains,” says Laura. Because of pain, the family had to leave the SheBelieves Cup game, an invitational international soccer tournament at Talen Energy Stadium that Kaylen had been excited to attend. The same thing happened when Kaylen started to play soccer for the spring season: She would need to leave the field because she was in so much pain.

In March 2017, the family turned to Children’s Hospital of Philadelphia (CHOP). Kaylen was found to be anemic from blood loss — she had lost 17 pounds and her nutrient levels were low. “All the traditional IBD symptoms were in full force,” says Laura, so much so that Kaylen needed to be admitted to CHOP for seven days. Tests during this time revealed that the inflammation had spread into her small intestine, changing her diagnosis to Crohn’s disease.

During the next year, under the care of Petar Mamula, MD, Director of the Kohl’s GI Nutrition and Diagnostic Center, and Arthur Kastl, MD, a fellow in the Division of Gastroenterology, Hepatology and Nutrition, Kaylen was on a combination of an oral anti-inflammatory drug, antibiotics, a synthetic antibody, and an anti-inflammatory steroid. The family was also experimenting with eliminating certain foods from her diet to see if anything helped.

Big improvements and back in the game

In May 2018, Kaylen switched to a relatively new synthetic antibody that targets the inflammation in both types of IBD. Over the next several months her symptoms began to subside, her white blood cell count gradually dropped, and she was slowly weaned off the anti-inflammatory drug, antibiotics and finally the steroid. She gets infusions of the new antibody every five weeks, and she has been relatively symptom-free for almost a year.

As a result, she’s back to playing left field in soccer, baking chocolate chip cookies, and enjoying a host of other interests. At school she’s involved in the student council of character, the news crew, chorus and the drama club. At home, “We buy her science kits and we find beakers full of who-knows-what in corners of her room,” says Rick with a smile. And Laura notes that Kaylen spends quality time in front of the TV researching half of her chosen profession: “She never misses Cupcake Wars and every reality show about baking.”

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