It’s just another day at Children’s Hospital of Philadelphia (CHOP), where Meredith is a frequent visitor. In July 2015, she was diagnosed with Crohn’s disease, a form of inflammatory bowel disease (IBD) that can cause abdominal pain, diarrhea, bleeding, weakness and growth failure.
Meredith is one of a growing number of children with IBD, a condition that has gone from rare to common in children during the past 30 years.
The reasons for the increase in IBD among children is still being studied, but clinicians at CHOP’s Center for Pediatric Inflammatory Bowel Disease say their experience has shown that the very young children diagnosed with IBD can have more severe disease than their adult counterparts. And, they add, treatments that work for older children and adults with IBD, often are not as successful for these young children.
Rapid decline, then answers
The first sign of Meredith’s condition came in June 2015, when Liz noticed blood in her daughter’s stool. Liz brought Meredith to their family pediatrician, who said the rectal bleeding could simply be an anal fissure caused by excessive straining.
The pediatrician assured Liz that the family could take their planned vacation to visit relatives in Ireland. A few days later, the family was on a plane.
Unfortunately, Meredith’s symptoms got worse. She developed a high fever, was tired and lethargic, and quickly became dehydrated. On walks, Liz frequently had to carry then 6-year-old Meredith. During the two-and-a-half week trip, Meredith lost 7 pounds.
Liz called the family pediatrician from Ireland and he referred her to Children’s Hospital of Philadelphia, where gastroenterologists like Judith R. Kelsen, MD, have expertise treating young children with complex bowel disorders.
The day after the family returned from vacation, Meredith was at CHOP for testing. After an endoscopy and colonoscopy, Dr. Kelsen diagnosed Meredith with Crohn’s disease, a chronic condition that would require lifelong monitoring and treatment.
Life with Crohn’s
Every five to six weeks Meredith returns to CHOP for an infusion of Remicade®, one of the three medications her doctors prescribed to reduce the chronic inflammation caused by Crohn’s disease. Because she’s still growing, it’s even more important for her body to be able to properly digest nutrients from her food.
Her mom says Meredith doesn’t mind her infusion treatments. It doesn’t hurt and most days, she just sleeps. Today, however, Meredith has entertainment — her brother Finn. “It’s hard to stay in one place during treatment,” says Meredith. But she does it because, “the medicine makes me feel better.”
As a second grader, Meredith is still learning about her condition and what works and doesn’t work for her. She’s really glad she can still eat her favorite foods — strawberries and blueberries — but kind of bummed she can’t eat popcorn, peanuts and seeds because they could get stuck in her GI tract.
“So far, we’ve been really lucky,” Liz says. “Meredith hasn’t had any bowel blockages due to her disease. But when she gets sick — even from the flu or a sinus infection — it really knocks her out. She gets very tired and is so weak that she can barely lift her head.”
Along with the infusions, Meredith also takes Tylenol® for what she describes as “tummy aches,” and gets a weekly injection of Methotrexate, another immunosuppressant that works to keep her bowel inflammation from flaring up.
Meredith says there are definitely annoying things about having Crohn’s disease — including medicine, frequent doctor visits and food limitations — but they are nothing compared to all the stuff she can still do.
“I love everything about school — reading new books and learning new things and talking to my friends,” Meredith says. “And I go horseback riding and do Irish dancing. Oh, and I just learned how to knit!”
Her experience at CHOP has also produced an unexpected personal breakthrough about her future.
“I'm going to work here. everyone is nice, plus i want to be a nurse and work with kids!”