Your Child with Inflammatory Bowel Disease: A Family Guide for Caregiving
I recently read this book which is published by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition. It was very informative and I'd like to recommend it to patients and parents.
It is written and edited by medical professionals who want to be more educated on their child's condition. It begins by defining the various conditions that make up IBD (Crohn's, ulcerative colitis, and indeterminate colitis) and talking about the possible epidemiology of IBD. The second part of the book touches on diagnosing IBD and goes into the symptoms a child may exhibit. There is a very helpful chapter (5), entitled How to Prepare for a Visit to your Child's IBD Doctor. It gives a comprehensive list of topics to discuss with your child before the visit so that everyone is on the same page and that you have a list of questions that you want to ask together. Another tip provided was not to promise your child there will be no blood tests, as this may not always be the case.
Is any family truly this happy?
There is a section that talks about the importance of talking about the child's diagnosis as a family, and including siblings at an appropriate age. This can make the child with IBD feel more understood by the other family members and opens the family communication. Siblings want to know if it is contagious, if it is fatal, and how will this change the family dynamic. Siblings are often the ones who have the most questions but are afraid to ask, and may have frustration over receiving less attention, so parents should spend one-on-one time with each child. Also, all children, including the child with IBD, need to have the same rules and consequences so that there is no favoritism.
If I eat the veggies, I may have a stomachache, but aren't I supposed to eat my veggies?
An interesting statistic the book quotes is that "children with IBD symptoms eat only about half the calories they require for their age. Children and teens with IBD need 20-40% more energy than children who do not have IBD." It can be helpful to talk with a nutritionist who specializes in IBD to make sure the child's nutrional needs are being met either with food or supplements. It can be hard for kids who have dietary restrictions due to their disease to find a variety of foods that will give them the nutrients they need.
Last but not least, the family dynamic is upset when a child suffers from a chronic illness. Parents need to have supports in place in order to manage their own anxiety about their child's condition and their child's future. At each developmental level, the child may react differently to his condition and to the other family members, and the book goes through various life stages in Chapter 15. There are many stressful transitions for kids, including middle school, high school, going from a pediatric doctor to an adult gastroenteroligist etc. These transitions should be handled with care, and much communication about expectations and who will do what task. Ultimately, the goal is for the teenager to be successfully transitioned and take ownership of his or her IBD. So overall, this book is a great resource for a newly diagnosed child with IBD and is pretty up-to-date since it was published in 2010. Doctors from three renowned IBD pediatric centers were the editors so I found it to be very accurate, yet patient-friendly. Hope you make time to give it a read!