The most common questions I get deal with issues like: how can my child do this during the formal school day? How can they fit in with their peers? An unasked question, but one that is at the back of most parents’ minds is, will this affect my child’s genital function on a long term basis? I try to spend a considerable amount of time when I introduce the subject talking about how easy this is, how quickly it will get children on the right track, and how minimally invasive it will be in terms of long term function.

Stuart Bauer, MD, Department of Urology

 

Kids are more concerned about acute things like pain, discomfort, while the parents are more worried about the social acceptance. So they’re saying, “I want my child to be normal!” Of course your child is normal; it’s just a different way of doing things. While the child cares more about, “Oh my God, it’s going to hurt me when it goes in!” and “How long do I have to stand there?” So they’re more worried about the mechanics of things while the parents are more worried about the implication of it.

As a physician, you have to be very cognizant of what are their concerns, because parents won’t tell you, “Well, I’m concerned about the social aspect of cathing.” They won’t voice that. So you have to be familiar with common parent concerns. And you address them differently – you address specific concerns to the child and you address specific concerns for the parents.

Hiep Nguyen, MD, Department of Urology

 

During school, I think some of the difficulty can be where they perform CIC, the physical location in the school. I hear quite a bit of concern from children and especially parents about cleanliness of the bathrooms at school, how busy the children are with their schedules, so that even if they’re not performing CIC but they’re voiding regularly, there’s often not enough time between classes for them to get to and from and to take care of their bodily function in transit. Those are things we write letters about, to help the school appreciate that this particular child might need a little bit more time to do this, and might need to do it at any time during class, etc. I think those are the biggest things that we hear that are difficult for a child. Outside of that I don’t hear a lot about problems: it doesn’t keep them back from sports, I don’t hear that it keeps them back from social activities or being out with friends or staying overnight at someone else’s house. We teach them little tricks of how to keep their catheter in a baggie and wash it with soap and water, clean themselves well, and even when they’re catheterizing to hold it out over the toilet, so it sounds like they’re peeing in the toilet. We try to give them lots of tricks to help them in those settings where they are anxious about whether they’re fitting in, or whether people know what they’re doing. They don’t seem to be doing exactly what their classmate is, so we try to help them as best we can.

Joseph Borer, MD, Department of Urology

 

Parents are concerned if they’re going to be able to catheterize, or if their child’s going to be able to. Sometimes the parents are thinking that the child will be able to but the child refuses to do it, and then that falls back more on the parents. And they’re also concerned about where they get their catheters and lubricant, where they’ll keep the supplies, how does all this work? Usually their big question is: “How do I order all this?” So we reassure them that we will set them up with a home care company, and we send them home with a large amount of supplies for about a week, so their first shipment has time to be delivered to the home. Many times it’s a question of who’s going to be able to cath the child and who’s going to be the back up if it’s a small child and the parent who came in isn’t available. Are they going to be able to cath in school? How does that all happen? And we will talk to the school nurse and help with that process too.

Diane Manning, RN, Department of Urology

 

The biggest questions are: how am I going to organize this into my day and into my child’s day? A lot of that is just about sitting down and finding out what the family’s life is like on a daily basis, on a weekend, etc. Other common questions are: can I still participate in sports, can I go to the movies if I need to cath? We work hard to reassure kids that it’s just a different way to go to the bathroom, and help them be empowered to organize their day so that the cathing doesn’t take over, but it gets done.

Rosemary Grant, RN, Nurse

 

I think they’re afraid of trauma. That happened yesterday – the family said, “Oh, we tried it, but there was bleeding!” They got nervous. They’re afraid of pain, and they’re afraid of infection. I try to make sure they understand the right concepts: that lubrication will be important to minimize the trauma, not to force things, to try the right techniques, not to be afraid to try but to stop if they are meeting resistance, and to encourage lots of teaching.

Rebecca Sherlock, PNP, Clinical Coordinator, Myelodysplasia Program