Let the kid control the disease too
I think that parents need to be proactive, but they need to let the kid control the disease too, and they should not baby them. Sometimes people tend to baby these kids when they are sick, and to feel sorry for them. We always talk about how the illness should not get in the way of discipline. Of course you would like to take the pain away, but life needs to go on and needs to be structured, and this should not get in the way of that. I think that these kids should go to school, they should do sports some kids can’t sometimes, but most kids can.

Samuel Nurko, MD, Physician


Pick battles carefully with teenagers
The first thing I tell parents is that you have to pick your battles carefully. Because a) these kids may have been diagnosed with a chronic illness, b) there all taking between 10 and 20 pills a day, and c) they’re teenagers. I think parents sometimes feel that food is the one area of their kid’s life that they can try to control, so I see a lot of unnecessary battles occur over what kids should and shouldn’t be eating. The battles that they need to pick, at least initially, are that they learn about the disease, that they show up for their appointments and that they take their medications. But I tell folks to be tuned in to their children’s problems. Since there is no proven guide for diet, parents need to be on the lookout. If there is a particular food or group of foods that they feel are making the child more uncomfortable, then they should withhold that or restrict it and see if that helps.

Athos Bousvaros, MD, Associate Director, IBD Program


The big issues for families
These are the big issues I encounter with families:

  • Self-esteem: These kids are often shorter, and IBD often gets diagnosed in the teenage years.
  • Most of the fights that I see happening with parents are over eating and over taking medications. A lot of kids get tired of taking pills, and medications are key: you’re taking twenty pills a day.
  • The other issue that is of concern is what happens later on. “Will it ever go away?” “It’s not fair that I have this for life.” There are fertility issues for women, and cancer issues in association with colitis. But I think that most teenagers aren’t thinking that far ahead. They’re more worried about, “This medicine makes me fat” or, “I want to eat this pizza but my parents aren’t letting me.” Those are the kinds of things that we see more of.
  • Parents tend to be a little bit overprotective, so I tell parents to back off a little bit. They can’t control every aspect of their children’s lives.

Athos Bousvaros, MD, Associate Director, IBD Program


Ask providers questions
I would like for parents to know that if they have any questions about something that they have read, heard, or imagined, anything at all, they can ask the people in the program for answers. We hope that what they read is helpful, but if they find that it is more anxiety producing or confusing than helpful, we hope that they will ask us questions to get an answer. I feel that anyone in this program would rather get that phone call and question than think of the parent waking up in the middle of the night worrying about all of the possible answers. I know that there is a lot of information available on the internet that can be more anxiety producing than helpful. Probably, the thing to say is that every child is different, and their experiences are going to be different than other families’.

Mary Alice Tully, RN, PNP, Nurse Practitioner


Involve a child in treatment
I would recommend that parents be as open as possible in talking about IBD with their child, and that they allow the child to be as involved as possible with their health care such as taking medicines, planning appointments, etc. I think that kids do better when they assume some responsibility with the solid support of their parents. On the other hand, some parents have a tendency to try to control the whole issue and that can lead to frustration, because some of these things are beyond control. You can do everything exactly as recommended, but still things do not go a certain way. You hope that the child is comfortable enough to share things with their caregivers. It is best to have others to help them, to share the burden. A good example is medications. We always ask about medications when families come in for clinic appointments. We ask the child about his medications, and the parents say, “What are you asking him for? He doesn’t know!” But we ask them, and we do it at a very early age, because we want them to realize that they need to know how important medications are and what they are, not only by name, but also why they’re taking them.

So some parents will be surprised that we direct our questions to the child, and others will even be surprised that we asked it at all. They will say, “Well, don’t you have that information in his record?” But we do it purposely, to find out whether they know what their medications are, and to find out what they are really taking. And you can get different answers, especially if you have an older school age child or an adolescent; sometimes they are supposed to be on a medicine three times a day, but they’re not taking it three times a day! That is the type of thing that we find out, and when we do we say, “Well, what can we do?” We can change the schedule around and give it only twice a day, because if they were missing that third dose anyway, then maybe it would be better for them to take more pills less often than miss a full dose.

Mary Alice Tully, RN, PNP, Nurse Practitioner


Give children options
I think the major thing that makes a difference for the patient, regardless of age, is letting the child be part of the treatment team. I think it is very important to give the child options in terms of treatment programs, for instance, input into whether they want to take medicines twice or three times a day. If there really isn’t a medical difference, then I like to give them the option of saying what they would like to do. That way, I think, they feel that they have some control in the face of a chronic illness that they otherwise wouldn’t have.

Alan Leichtner, MD, Former Chief of the Division of Gastroenterology and Nutrition


Know there is a spectrum of disease
I think that parents need to know that there is a spectrum of inflammatory bowel disease. Often, the people who access internet sites and the people who put material on those sites are the people with the worst disease. Many families will search the internet and come in to the hospital in despair because they’ve read about how terrible life with Inflammatory Bowel Disease is. What I would like for them to see is a more balanced approach that is realistic and certainly mentions the problems, but doesn’t give them a one sided view, so that they understand the basic message that they can lead normal lives.

Alan Leichtner, MD, Former Chief of the Division of Gastroenterology and Nutrition


Be honest and open with your kids
Parents need to give the child with inflammatory bowel disease the sense that they are normal. Everyone has problems, and this is their problem, but it’s something that they can deal with. I think that being honest and open with your kids and not lowering their expectations are probably the two most important messages for parents. Parents should encourage their children to take on this problem. I’ve met parents who have said, “My child doesn’t even know he has inflammatory bowel disease. I don’t want him to know, so you can’t talk about anything.” I have refused to take care of these children under these circumstances, telling the parents that they need to be honest with their children. The focus of the medical visit should be the child, and the conversation should be directed to the child. The child can get some help from the parent if they can’t remember the details, but over time, the responsibility for care should be shifted to the child. That gives them control and helps them deal with having a chronic illness.

Alan Leichtner, MD, Former Chief of the Division of Gastroenterology and Nutrition