As tears well-up in her eyes, I notice her husband's arms reaching over to comfort my patient’s mother. I continue to describe the disease that has been ravaging at their son's intestines, probably for the last several months. Although his parents had suspected something was seriously wrong when their son’s abdominal pain and diarrhea (which had initially seemed like the “stomach flu”) got progressively worse, nothing could’ve them prepared them for what I had just confirmed during his colonoscopy: Crohn’s disease.
Unfortunately, the scenario I just described is one that pediatric gastroenterologists like me encounter much too often. Making the diagnosis of Inflammatory Bowel Disease (IBD), which includes Crohn’s disease and ulcerative colitis, is never easy for a child, and it can be devastating to the parents.
The initial few return visits in the office, after the diagnosis is confirmed, are some of the longest, focusing on education and answering questions. It’s during these visits that I encounter families usually have the same worries and doubts. This prompted me to give a recent educational seminar entitled, “Top 5 Things to Know about Your Child’s IBD”. Today, I thought I’d follow-up with a summary, especially for those who couldn’t make the conference in person.
1. It's no one's fault.
No parent should feel guilty that they may have done something to cause their child’s illness or should have done something to prevent it. I want parents to know that for most kids with IBD, it’s their genes that predispose them, although environmental factors (eg diet, antibiotic and nicotine exposure) also play a role. Unfortunately, since science still doesn’t have a good explanation for what causes this disease, we still don’t know how to prevent it.
2. Education and advocacy
I want all parents of children with IBD to learn as much as they can about the disease; but do so from reputable sources. One of the best ways to do this is to become a member of the Crohn’s and Colitis Foundation of America (CCFA.org).
3. Avoid these!
All patients with IBD should be aware of the risks of:
- NSAIDs (eg ibuprofen, diclofenac, naproxen, etc)
- CT scans
- Live viral vaccines
- Vitamin D deficiency
4. The role of diet
Virtually every parent of a child with IBD has wondered about what their child and should/should not eat. Success with dietary therapy depends largely on the type of disease plus many other factors. The internet is full of diets that claim to “cure” IBD. The biggest pitfall I worry about for parents is comparing their child’s disease to someone else’s, and then assuming a diet that worked for another person will be helpful for all.
5. Treatment goals
As in the case of dietary therapy, I want parents to understand that just as their child is a special individual, their IBD is also very unique and needs to be treated as such. Therapy needs to be tailored to fit the needs of each child, depending on their age, sex, development, type of disease, along with many other factors. Only you and your child’s doctor can decide what’s best for your child and I strongly discourage parents from trying to compare their child to others.
Of course, these are just a brief summary of the many things that I go over with the families of children with IBD. No blog could fully cover everything that needs to be discussed, but my hope is that this helps parents begin the dialogue. With these topics in mind, parents can be better equipped to ask more questions and keep the conversation moving forward. I always remind families that “IBD may be tough, but together, we’ll make your child even tougher!”
Ed. note: make sure to save the date for the CCFA fall conference.
What: Pediatric Inflammatory Bowel Disease Conference for Families
When: Saturday October 24, 2015
Where: Swedish Medical Center - Cherry Hill (500 17th Avenue, Seattle, WA 98122)
More information about the event can be found here.