Crohn’s Disease: Paige’s Story

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When Paige was 6, her family noticed something worrisome: She wasn’t growing. After a diagnosis of inflammatory bowel disease (IBD) and surgery to fix an intestinal blockage, she’s now thriving and recently competed in her first dance competition.

Paige Shortly after Paige started kindergarten, she began complaining of stomachaches. Her mother, Nichcole, thought the cause could be that Paige was feeling anxious about the new school. But the fact that she wasn’t growing added to the puzzle.

“She was wearing the same size shoe for more than a year,” says Nichcole. “Her brothers were getting taller, but she wasn’t. The pediatrician said it could just be a slow growth year.”

In first grade, though, Paige started getting fevers. “She would get a fever, then be OK, then get another one,” Nichcole recalls.

In April 2014, her pediatrician at Children’s Hospital of Philadelphia (CHOP) ordered bloodwork, and the results pointed to a possible gastrointestinal problem. A few weeks later, endoscopies at CHOP’s Main Campus led to a diagnosis of Crohn’s disease. Paige was 7 years old.

With Paige’s symptoms not being severe, the family wanted to try to forgo biologic drugs. “We tried alternative treatments and supplements,” says Nichcole.

A turn for the worse

About three years after being diagnosed, however, the chronic inflammation in her intestines took its toll: Paige developed an intestinal blockage. She required surgery and was hospitalized at CHOP for 18 days.

“I didn’t want to be in the hospital,” says Paige, “but the experience of being there was good. My family was always around. I have two brothers and four cousins, and we would go to a room upstairs and watch movies.”

Now under the care of Andrew Grossman, MD, Co-director of CHOP’s Center for Pediatric Inflammatory Bowel Disease, Paige comes to CHOP every eight weeks for three-hour sessions of Remicade infusions. She passes the time doing homework or taking a nap.

The medication’s effects have been impressive: “She’s grown and gained 25 pounds,” says Nichcole. To make sure Paige continues to grow, she’ll be on the medication at least through puberty.

Dancing on her own

Paige smiling Paige, now 11, spends seven hours a week in dance classes, practicing ballet, tap and jazz. She recently took part in a dance competition where she got to wear four different costumes. “My favorite was the purple one, because that’s my favorite color,” she says.

“She’s doing fantastic,” reports Nichcole. “She now has friends who have IBD — one little friend is very sick, so we feel lucky.”

“It’s been OK ever since the summer I was in the hospital,” Paige says. “Everything after that has been good.”

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