Welcome to Crohn’s and Colitis Perspectives on ReachMD. The following program is produced in collaboration with the Crohn’s & Colitis Foundation and the American Gastroenterological Association. Here’s Dr. Stacy Kahn, Assistant Professor of Pediatrics at Boston Children’s Hospital, sharing her insights on pediatric inflammatory bowel disease.
I think people always assume that diseases that occur both in children and adults are the same, but we actually find pretty significant differences. So, about 20–25% of all of the cases in inflammatory bowel disease or IBD are diagnosed in the pediatric age range, so it’s not as uncommon as people think. I think the other big differentiating factor is that children have different presentations because they’re at a pivotal time during growth and development, so their symptoms can be a little bit more tricky to tease out they may present with growth failure or weight loss.
The other big differentiating factor is we see a lot more Crohn’s disease than the adult IBD specialists. About 60% of our patients have Crohn’s disease, and about 30–40% have ulcerative colitis, so it tends to be more like 50/50 in the adult population, and so we really have to be more thoughtful when we’re doing our diagnostic workups and thinking about your treatment plans because there are obviously subtle differences.
An area where I really feel the credit is due to my mentors and the people who’ve trained me and really who were pioneers in this field who were the first to recognize that children do get inflammatory bowel disease, it wasn’t limited to adults, and pushing the research forward to establish pediatric patterns of disease, pediatric epidemiology, pathogenesis, as well as different patterns of disease development and how it presents differently in children so that we’re all more aware. I also think I have to really credit the families that have done a tremendous job advocating, making people aware of it. The kids are incredibly brave and really become engaged with the community, and it’s these type of grass roots efforts and really engaged families that have made a huge difference.
Starting with how you eat a healthy diet, that’s the first step. There are many families that come to us that want to try different diets, and I think diets can be a great primary treatment for some patients with severe Crohn’s disease or even moderate Crohn’s disease but you have to all be on the same page about the amount of work involved, and so I’m very careful to make sure that the child is engaged in the diet as well.
I think the diet therapy that we have the most evidence for right now is exclusive enteral nutrition therapy, or EEN, and unfortunately, that’s the diet that makes people stand out the most. Our children have feeding tubes either in their nose or directly into their stomach or will be seen walking around with their cans of formula, and I think that that is a truly hard sell. Some kids really buy into the diet therapy because they feel better on it, and I think that’s fantastic, but really, it’s about making sure that kids are not on restrictive diets where they’re not getting the calories they need without any benefit.
We also have to be very aware of where the child is, and some kids need a little bit longer to move towards independence. Some parents have a hard time letting go, and that’s a big challenge, that parents are very fearful that if they let go of the control of the health care of their child that they’re gonna become ill again, and so it’s a really multifaceted approach.
I think starting conversations early is very important, preparing families for transition, and really thinking about the break points that make sense. Patients are individuals, they’re not groups, and we need to make sure that our approaches, not just for the medical therapies that we choose but the approaches that we use to help them get them through their stages of life, are what works for them as individuals.
That was Dr. Stacy Kahn from Boston Children’s Hospital. This program was produced in collaboration with the Crohn’s & Colitis Foundation and the American Gastroenterological Association. If you missed any part of this discussion, or to find others in this series, visit ReachMD.com/foundation, where you can be part of the knowledge.