|
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, IBD Program
 Top of Page
Educating the School
I find that almost all of the children that I meet tend to be incredibly involved and functioning at a very high level, in terms of participating in sports and activities at school. It can be hard sometimes when a kid is having a flare and they might need to miss school. We work with them and tell them that they need to go to school and partner with the school so that can happen. We don’t want their disease to be an excuse for their not following through on the activities that they need to do. It is a balance between making accommodations and saying, “You really need to go to school. If you don’t feel well in the morning, then you can go in at noon, but you really need to go in.” I think that our goal is for the kids to do what they want and to feel like their life is normal. We have kids who are figure skaters and kids who play hockey. I had a kid who went to Israel with a group last summer, and he managed it all by himself, through email and his parents calling. We try to do as much as we can.
But I think that there is a lot of misinformation out there. Years ago, there was the misconception that there was a huge psychological component to Inflammatory Bowel Disease- that people with IBD couldn’t handle their stress or they had certain personality types. That is obviously not true, but although that was twenty years ago, I think that perception can sometimes linger. So, I think that people at school need to be educated about the disease and about reasonable expectations for kids.
Lori Hartigan, RN, Clinical Coordinator, IBD Program
Top of Page
Telling the School About a Child’s Needs
I think that how parents deal with school depends on the child and how symptomatic he is. If it’s a situation in which they need to have easy access to a toilet, I will often suggest that they check with the school nurse, because often the nurse has a private bathroom the child may use. If they are ill, having a rough year and missing a lot of school, you want to arrange a tutor and arrange it in advance, so the child doesn’t have to be out of school for two weeks before they get a tutor. That way, if the child is out of school for a couple of days, they’ll have the tutor for a little extra help. Sometimes nutrition is a concern, and at school, these kids have a hard time; all kids have a hard time eating a good lunch at school. The cafeteria is noisy, it’s hectic, and they only give them twenty minutes, so if nutrition is an issue, then we suggest that mothers send some extra snacks during the day. A lot of kids are pretty healthy and keep up and participate in sports; we expect that, that’s what we want them to do.
Mary Alice Tully, RN, PNP, Gastroenterology Program
Top of Page
|
|
