Questions Answered By Expert
Phillip Minar, MD
Associate Professor of Pediatrics, Medical Director of the Schubert-Martin IBD Center, and the Program Director for Advanced Pediatric Gastroenterology IBD Fellowship at Cincinnati Children’s Hospital Medical Center
A: I think the most difficult aspect of treating any patient (but especially children) with a new diagnosis of UC is allowing time for the patient to understand that UC is a chronic illness and that any treatment will take time to work. For a patient with a relative new diagnosis, this is the first time they haven’t felt better quickly after seeing a doctor. For most, patients see a doctor for a more mild ailment and it’s a quick fix with an antibiotic or a tincture of time. With UC, every treatment takes time to start working. For your son, I would suggest supporting him through the abdominal pain with comfort foods that don’t increase his GI symptoms and rest (reading, meditation, even video games) for his body to start to heal. I would also focus on the fact that despite his current symptoms, he will get better over time. Although the disease is life long, most patients return to their activities and “forget” they have UC. I would also suggest that you look into your local Crohn’s and Colitis chapter and see if there are parent or peer mentors for the both of you. Sometimes, hearing what other parents had to go through and techniques they used can be very helpful. Some pediatric hospitals also have peer mentors that the children can get in touch with, whether electronically or in person. Finally, I find it very helpful for patients who have been newly diagnosed to speak with a behavioral specialist (psychologist) as they can offer a variety of helpful coping skills for when the disease is active. hide answer
A: Great question! This is a really important question and one that does not have a straight-forward answer unfortunately. The short answer is, we just don’t know. The anti-TNF medications (infliximab and adalimumab) are the only FDA-approved biologics for pediatric patients with moderate-severe Crohn’s disease. Use of any other medication, like Entyvio, is considered off-label use. Entyvio is FDA-approved for adults with ulcerative colitis and Crohn’s disease. With that said, pediatric gastroenterologists have been asking the same question, “is there a certain group of children/adolescents that would benefit from Entyvio as their first biologic?” We don’t have the answer yet. There is some data to support that this could be a good option for some patients and I would encourage you to have this discussion with your primary GI physician. hide answer
A: Only infliximab (Remicade) is FDA approved for pediatric UC. Adalimumab (Humira) is FDA approved for adults with UC, however, Humira is often used off-label for pediatric UC. Depending on the severity, Remicade is often preferred given its relative quick onset of action. If your daughter is admitted to the hospital, then Remicade is the preferred biologic. Both medications have a good safety record in children. In regards to the dysplasia question. This is relatively uncommon in children, especially at diagnosis. I would agree with close surveillance. I would also suggest that the biopsies be reviewed by a either a pediatric or adult pathologist who is an expert in intestinal dysplasia to confirm the diagnosis. hide answer