Inflammatory Bowel Disease (IBD): Katie's Story

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Two years ago, Inflammatory bowel disease (IBD) sapped Katie of energy, keeping her sidelined from her beloved dance lessons. But with treatment from the Center for Pediatric Inflammatory Bowel Disease at Children’s Hospital of Philadelphia (CHOP), the 9-year-old regained her spark. Last winter, she flew through a busy rehearsal and performance schedule to dance in a local production of The Nutcracker.

Katie, Walk for Hope ambassador Katie was enjoying summer camp and her thrice-weekly dance lessons in June 2016 when the diarrhea started. Her parents, Kristina and Rodger, figured it was a stomach virus or something she ate.

The diarrhea continued, and Katie — petite at 45 pounds — began to lose weight. Typically an energetic kid who would play in the yard with her brothers and cousins after spending all day at camp, Katie would come home, lie down on the couch and fall asleep. Dance class was out; Katie couldn’t muster the energy. By the end of July, blood was mixed in with her stool and she was still losing weight.

“We really knew things were going south in her world when she didn’t want to go to dance class. That is her thing,” Kristina, remembers.

In September, Katie had an appointment with Andrew B. Grossman, MD, Co-Director of CHOP’s Center for Pediatric Inflammatory Bowel Disease. An endoscopy and colonoscopy showed inflammation in Katie’s colon. Dr. Grossman diagnosed her with IBD. Kristina remembers feeling both relieved and frightened.

“Up until then, we were throwing darts in the air. We had nothing, and now at least we knew what it was,” she says. “But we didn’t know how it was going to impact her life.”

Finding the right treatment

A blood test during the initial appointment with Dr. Grossman showed that Katie’s hemoglobin was low. Dr. Grossman discussed options with Katie’s parents, and they agreed to admit Katie to the hospital for a blood transfusion, intravenous steroids to bring the inflammation down, and the first of a course of a biologic.

Initially Katie felt better, but her symptoms flared up two weeks after she returned home. It soon became clear the biologic’s benefits weren’t lasting the five weeks between infusions. By late November, Katie was down to 35 pounds, dropping her into the third percentile for weight in her age group. Her frequent bowel movements were primarily blood.

By Thanksgiving, Katie was back in the hospital for another blood transfusion and a new treatment plan. Dr. Grossman prescribed an oral medication that can increase the biologic’s effectiveness. He also prescribed three different antibiotics. The day after Thanksgiving, Dr. Grossman called Kristina to find out how Katie was doing.

“That’s a testament more than anything about what kind of doctor he is,” Kristina says. “I remember him saying to me, ‘We’re going to figure this out and she’s going to get better,’ and he was right.”

The effect of the new medications was almost immediate. Katie’s symptoms stopped, she gained weight over the next few months, and her energy returned. Kristina felt that her daughter was back.

Looking forward and giving back

When the family learned about the Walk for Hope that April, they didn’t hesitate to sign up. They put together a team of 30 friends and family — all in matching purple “Katie’s Krew” T-shirts. Kristina says they wanted to help raise funds for IBD research and care, but were also eager to participate so Katie could see and meet other children who are living with IBD. And they wanted to provide hope for the families who are grappling with a recent diagnosis. The 2019 walk will be the family’s third.

Kristina considers the walks “a way to bring people together, to help them see that others are getting through it — that if you’re in a bad place right now, ‘better’ can happen, and hopefully it will.”

Katie continues to receive infusions every five weeks at CHOP’s Main Campus, and she sees Dr. Grossman at CHOP’s Specialty Care and Surgery Center in Voorhees, NJ. Dr. Grossman took Katie off the oral medication in January 2019 and the fourth-grader continues to thrive. She took up saxophone this year — an instrument that is nearly as big as she is, her mother jokes. She gets straight As in school, and continues to dance. Ballet is her favorite, her mother says. She performed in two numbers during her dance school’s production of The Nutcracker — something she never could have done two years ago.

She’s back to living a completely normal life.

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