Educating kids about IBD
I think the kids who come to the hospital educated and prepared have much more positive outcomes from their procedures and more positive outcomes in their lives. The fear of the unknown is the worst thing to put in front of a child, because kids have amazing imaginations and can make it as bad as they feel. So I think pre-procedure education and diagnostic workups are very important, and that kids should be generally informed about what’s going on.
Lisa Heard, Former Clinical Coordinator, Endoscopy Program
Always trying to cheer the kids up
My friend Erin has Crohn’s disease. I hate Crohn’s disease, as a friend and as a person who gets to see it firsthand in my job as a nurse. Crohn’s can be so debilitating in some people and it makes kids so sickly. It’s an unforgiving disease. If you see someone with another kind of IBD, it’s a problem, but at least you can deal with it and there are things you can do about it. But it’s particularly frustrating as a nurse and as a friend to see Crohn’s disease happening to people, because you feel like you just can’t do anything. You feel like you’re up against a wall and there’s not a lot you can do for these patients except treat their symptoms and take care of their exacerbations. I’m always trying to cheer the kids up, but it’s very frustrating not being able to provide the answers to patients and give them better treatment.
Before a procedure, we need parents there for the legal consent process. But there are some kids who just don’t want their parents to be there for most of their procedures, and we try to give them that option and let them be independent. So in the clinic we’ll do teaching with the parent there, and if they give consent then we have them go and give the teenager their space. It’s not always easy, because parents don’t always want to leave, even though the adolescents may tell them that they don’t need to stay or ask them to go for a walk. I think it’s hard for the parents sometimes to leave, but the kids want to be independent. It’s their disease, and they have to learn how to handle it, because Mom isn’t always going to be there. As they grow up, they will start to go off on their own and off to college, and obviously there the resources are different, and they need to learn how to identify what the resources are.
Kate Donovan, Special Projects Coordinator, Endoscopy
Telling others about a child’s IBD
We’re very willing to work with families and patients to get their lifestyle as they would like it to be. One of the ways of doing that is to share the information that the child has a problem, and not to keep it a secret. It’s important to bring teachers, ministers, and extended family members in, so that there is a sense that the child has a support structure around him or her that he or she can use for coping. Talk to coaches about special needs, and tell them that children who are having diarrhea should have Gatorade around and need to remember to drink it to keep hydrated. They also need to eat a little bit better when they’re having symptoms than when they’re not because they have extra loss of nutrients. And if they’re very active in school sports, they need to increase their overall nutrition because they’ll have the extra demand of activity on top of the demands of their inflammation and of normal growth. We also try to get parents to come to parent groups that are run either by a hospital or by the Crohn’s and Colitis Foundation. We encourage them to come to educational meetings run by CCFA, and we encourage children to go to a CCFA camp, if there is one in their area. It is a very useful way for children to learn that they are not alone and to share their experiences with adults who are sufficiently well trained and can help them with their questions.
Richard Grand, MD, Director Emeritus, IBD Program