Adina loves singing and musical theater. She’s able to enjoy them more fully now that treatment for her Crohn’s disease has reduced stomach pains and nausea.
It’s only in the past year, after more than two years of sometimes debilitating stomach aches, nausea and diarrhea, that Adina has been able to enjoy her interests with her normal level of energy.
Symptoms at an early age
Looking back, her mother, Rebecca, can see the first signs of Adina’s troubles in her persistent diarrhea in preschool. Her pediatrician at the time told her not to worry, and that nothing was wrong with Adina. But the problem didn’t end, and it got worse in kindergarten.
Rebecca changed to a different pediatrician at Children’s Hospital of Philadelphia (CHOP) Primary Care, South Philadelphia. She wanted a more careful diagnosis for Adina and access to the expertise of CHOP’s specialists if needed. Her new pediatrician examined Adina and listened to her history, then set up an appointment for her with a specialist in CHOP’s Division of Gastroenterology, Hepatology and Nutrition (GI).
The first doctor Adina saw in the GI group took blood samples for additional diagnostic tests. When Adina came back to CHOP for her next GI appointment, she was seen by Judith R. Kelsen, MD, Program Director of the Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Clinic. Dr. Kelsen looked at the results of the blood tests and discussed with Adina’s parents that she needed to be evaluated for inflammatory bowel disease (IBD), her area of specialty. Adina became her patient.
“Dr. Kelsen told us she thought it was IBD, but that she couldn’t be sure without more information from a colonoscopy and endoscopy,” says Rebecca.
The colonoscopy and endoscopy showed inflammation in the colon, and after an examination of a biopsy taken during the procedure, the team recognized that there were granulomas in Adina’s intestine. Dr. Kelsen explained to Rebecca that these are microscopic collections of cells that form in response to an infection or inflammation, and that they can be an indication of Crohn’s disease.
Discovering the cause
While Crohn’s disease does not yet have a definitive cure, the symptoms can be treated. Like all forms of IBD, Crohn’s affects patients in various ways. It can be serious for some patients, but milder for others. It can also take various lengths of time to discover the right treatment for patients. Another important factor is that IBD can affect other parts of the body in addition to the intestines.
Adina’s case initially appeared to be on the mild end of the IBD spectrum. However, blood tests showed no signs of improvement, and Adina took a turn for the worse.
“She got the most stricken expression on her face one night,” Rebecca recalls. “I’d never seen her look like that. She was in intense pain — a stomach ache much worse than any she had had before.”
Rebecca took Adina to her pediatrician in the morning, who took blood samples for tests. He told her to stay by her phone to be ready for instructions as soon as he got the results.
“Adina and I went to a movie that evening: Cinderella. The doctor called during the movie told me to bring her to the Emergency Room at CHOP.” The blood tests showed high lipase levels, a sign of pancreas inflammation called pancreatitis.
Additional tests and ultrasounds that evening at CHOP confirmed that diagnosis. The recommended treatment for acute pancreatitis, as opposed to hereditary or chronic pancreatitis, is to keep the patient from taking any food by mouth.
This did not go over well with Adina. She was furious that her parents and the doctors wouldn’t let her eat. A friendship with another patient helped her get through the next five days. One night, the two stayed up all night coloring.
To treat her Crohn’s disease, and to get her the nutrition she needed while keeping the pancreatitis in check, Adina was given a nasogastric (NG) tube, and the family was taught how to use it at home after her release from the Hospital. Adina learned how to use it by watching videos, and took pride in being able to do it herself.
For the next year, the NG tube was a visible sign of Adina’s condition. She went to school with it, and her friends there accepted it as something she needed — her way of eating. While the NGT kept her healthy and her Crohn’s disease in remission, over time, it began to frustrate Adina. At 6, she was more self-conscious than she had been at 5, and the tube in her nose caused some discomfort.
In consultation with Dr. Kelsen, the family decided to have a gastrostomy tube (G-tube) inserted, a surgical procedure that entailed at four-day hospital stay. However, Adina still complained of stomach pain and nausea.
A breakthrough treatment
Dr. Kelsen ordered another colonoscopy and endoscopy to understand the state of inflammation in Adina’s colon and intestines. While her pancreatitis had improved and was no longer a problem, she continued to have symptoms from her Crohn’s disease. She explained to the family that a new approach was needed to Adina’s treatment. She prescribed Remicade®, a biologic drug used to treat Crohn’s disease.
That’s the treatment Adina is on today. She gets an infusion of Remicade at CHOP every few weeks. The symptoms aren’t gone — she still has stomach aches and nausea at times — but she feels incredibly better most of the time. She hasn’t missed a day of school in six months.
At 8, she’s now a happy girl. She loves to sing. She’s in both the Zumba and art clubs after school. In the summer, she goes to an arts center for musical theater, which is her special passion. And she has lots of close friends.
“I feel so lucky that we are in Philadelphia and have CHOP and Dr. Kelsen. It's so rare to listen to a doctor and to have that trust. and that trust goes the other way, too — it’s a partnership. When Adina was in the Hospital, they would ask us our thoughts and feelings, and they paid as much attention to that as they did to the tests. They pay attention to the parent, and that’s very important to us.”