You have to model the behavior. You don’t reward a child for taking care of himself or herself, for taking responsibility for his care or her care. No, you’re not going to get a new doll because you’ve done your meds all week. No, you’re not getting new presents because you’ve been in the hospital.
Mother of Amalia, age 9
It’s a challenge every time
It’s just mainly bringing Patrick to the bathroom because he doesn’t want to empty his pouch and he doesn’t want to go potty – I think because he’s two and it’s too time-consuming, and he has to do it, you know? It’s a lot, so he’ll do one or the other, but he never wants to do both.
We’ve tried treats, which really worked well at first, especially with the potty training – you know, just a couple M&Ms or something like that – but now it’s more a challenge. We just have to think of things as the time comes, like, “Oh, you can watch your show after this,” or “Bring this toy with you,” or something like that, but still. It’s a challenge every time with the bathroom, unfortunately.
Mother of Patrick, age 2
A bargaining tool
Sometimes he didn’t want to get cathed, but knew that he had to. I’m sorry, I’m a big bribery person. It’s whatever works! “If you want to play your game, you have to do this first. If you want to go outside, you have to do this first.” It’s just, you know, a bargaining tool.
The UTI medicine on the other hand, that’s a big fight. We’ve tried doing the bubble gum flavor and stuff like that, and he actually thinks they’re even worse! I put some on my tongue and it’s pretty nasty, so I understand. We do a big chaser – he’s got a whole milk cup waiting for him. As soon as he drinks it he chugs the milk…
The argument was, if you teach him when he’s young he won’t know any different and any better when he’s older. And that was probably the best thing that I did, because he was so young at the time that if you gave him something, like a sucker or something bribery-wise that he could have as he’s laying on the floor, he would cooperate – where if he were five and I had to start doing it I think I might have a little bit more of a fight.
And someone was always there when I did it, like my daughter, and she was showing him something or playing with something…someone always helped me.
Mother of Jared, age 6
Certain things there is no way he can tolerate
We’re really honest with him – he knows what’s going to hurt as much as I know and what we are going to do. I tell him upfront, “This is what we are going to do and this is how we are going to do it.”
When they wanted to do the first testing with the VCUG, I explained to them, “There is no way you are going to be able to cath him while he’s awake,” and when I talked to his office, they said, “Well, we have to.” I said, “Well, you can’t. I have to tell you upfront, we have done some of these procedures, and there’s just certain things he just can’t physically or mentally allow you to do.” So they came up with putting a suprapubic catheter in. They put him under anesthesia, did all of the cystoscopy and everything under anesthesia, placed the suprapubic catheter, and when he woke up he had the catheter in. Because of doctors’ schedules we had to wait two days, and then we came back and did the rest of the procedure, which was the urodynamic testing. …They didn’t do any of the probes or anything: they couldn’t get close enough. But they said they already had enough information from some of the other tests that they had done, that they would do what they could and they could understand from his history that there were just certain things that they just weren’t going to be able to do.
Because of doctors’ schedules we had to wait two days, and then we came back and did the rest of the procedure, which was the urodynamic testing. …They didn’t do any of the probes or anything: they couldn’t get close enough. But they said they already had enough information from some of the other tests that they had done, that they would do what they could and they could understand from his history that there were just certain things that they just weren’t going to be able to do.
Usually it just takes a lot of convincing: “You have to do the test. You can either do it this way or that way.” And we try to make him do most everything that we absolutely have to do. But every once in a while, there are just certain things that there is no way that he can tolerate, no matter how much convincing or bribing or whatever you do.
Mother of Robert, age 16
Eventually it’s going to catch up!
When he didn’t cath enough, he would end up at the hospital. And he didn’t like to have to have the cath left inside – that was the other thing that I think forced him. He doesn’t mind cathing, but he doesn’t like when you have to leave the catheter in! And there were a couple of incidents where he had to come home with the catheter – oh, he didn’t move off that couch! He would not move anywhere. And they kept saying he could get up and go around, but he was not moving. And you could see it in his whole demeanor – he was just this sad unhappy kid, his life was over, he looked so pitiful! And I think those couple incidents is what made him cath more. Because I kept saying, you know where that’s coming from, because it’s going to catch up! You might think you’re fooling me when you go into the bathroom, but eventually it’s going to catch up. And I think those couple times, because he really doesn’t like that catheter, I think that’s really what did it!
Mother of Isaiah, age 17
Mother of Manny, age 10
Once he caught on
A few times it seemed like it was more of an inconvenience, because he wanted to do something and it took a few extra minutes. That was more the issue at home, but at school it didn’t seem to be a problem. He said, “No, I just go down after this class and I just go to the nurse’s, then I just go back to class.” So in school it didn’t seem to be a problem; at home it did just for a few days. But once he caught on, like, “This doesn’t hurt and I can do it really quick!” then he was fine with that.
Mother of Robert, age 16
Not always old enough to follow through
He’ll complain and put it off, then I usually have to go in, like, “Eric! It’s time to cath!” And it’s usually if he’s watching a show or doing something he doesn’t want to get away from. I find, though, I have to make sure he goes in right then, because if he says okay, it’s just okay, but then he doesn’t move!
I’ve tried lots of different things. And just sometimes he does it. Sometimes he’ll get everything done, and he’ll take his medicine – we have it all lined out, you know, in the dispenser. I think maybe it’s age and developmental. I think he’s old enough to understand that that’s what he wants but not always old enough to follow through.
Mother of Eric, age 8
She was controlling this problem
I think what was the biggest stress is that she was controlling this problem. It was her choice not to go the bathroom. She has such anxiety even now about the bathroom. Now that she is almost five years old, she is potty-trained but still stubborn of using the bathroom. There are some days I literally have to sit her on the toilet and wait for her to go. She goes more often now. I find by letting her go on her terms is working out a bit better.
Mother of Kristin, age 4
Breaking the bad habit
Last summer Meghan discovered one day during play group it was much quicker to say she had done a catheter than to actually do a catheter, and she got into a bad habit of doing that. So for a while she wasn’t doing her catheter and she was having accidents and she got a bladder infection and I was really nervous. I was like, “Oh no! Catheterization isn’t working anymore?” So I was really relieved to find out what was happening. And it took a couple weeks but we broke her of the bad habit, and she’s never done it again. But it is something that I would say probably six to eight months into self-catheterization that parents should look for. When they’re doing it on their own, when you’re not in the bathroom with them every time anymore, when it’s become just a pattern and a part of your day, if you’re thinking to yourself, “Wow! She’s getting really fast!” or “He has gotten so fast at that!” – if it goes through your mind, “Could they have possibly done that cleanly?” then go into the bathroom! Because I think I let it go for a couple of weeks just because it was convenient and I thought she was doing it…but then we figured it out.
Mother of Meghan, age 8
Mother of Meghan, age 8
Is this really a bladder issue?
She was completely potty trained before the ADEM, so it was frustrating, I think more for me. She’s super, super vocal and really with it and I have had a hard time knowing, is this really a bladder issue or is this just not going to the bathroom on time? Which still might be part of it, I’m not quite not sure – obviously I think it probably is mostly her bladder.
Mother of Leah, age 4
As long as I can acknowledge that
She’s really good with taking the medication that she does have, she goes to all her doctor’s appointments without any issue. The only resistance is occasionally with cathing when I say, “Hey, we’re at that four-hour mark,” and she’s into something, she doesn’t want to quit. Or occasionally, I’ll tell her, “Oh, let’s use the bathroom now’ and it’s a little bit earlier than the four hours, but we’re getting ready to go out somewhere where I’m not sure we will have access to a bathroom. And she’s like, “But I just went!” I’m like, “Yes, I know…” then I have to kind of re-explain why we’re doing it so soon: “Because we’re going out to a fair, and they’ll just have Porta-Potties, and they may not be the cleanest things, and we may have a hard time finding them. Let’s just take care of it now.”
Ever so rarely she’ll still be like, “MOM!” and I just say, “We’ll go when you’re finished.” And at that point it’s like, okay, she’ll take care of it. It’s more I think she just likes to assert, “Hey, this isn’t really what I want to do right now,” and as long as I can acknowledge that and say, “Hey, I know you really don’t want to, but here’s why I think it’s the best choice.” I think she usually tends to go along with it at that point.
Mother of Siobhan, age 9
No more than anything else
It’s usually one of those, “Well, I’d rather be doing this!” “Well…this is what we’re doing today.” It’s sort of no different than, “I don’t want to brush my teeth!” “Well, they’ll fall out of your head if you don’t brush your teeth.” So it hasn’t been any more than anything else in life.
Father of Siobhan, age 9
Mother of Ryan, age 11
Getting him to calm down and relax
They gave us some numbing cream, and that didn’t do anything for him. It was more of just trying to calm him, getting him to just calm down and relax. He would have problems getting the catheter in and I would tell him, “It’s because you’re upset and you’re crying, so all your muscles are tensing up.” And we would do a breathing exercise: “Breathe into your nose and out your mouth. Just try to relax.” It would take probably about ten or fifteen minutes just to get him to relax and calm down to where he was able to put the catheter in. But if you didn’t do that process with him, then it was a problem and he wouldn’t do it at all – like if you just told him to go in the bathroom and do it, he would make a show for a little while, and then he would just pretend like he did it and not do at all.
Mother of Ethan, age 13
Constantly lying to us
We were constantly reminding him and he was constantly lying to us. It was really hard. When he did have trouble and was learning, he only trusted me, and he would always ask me to help. I think my husband was like, “What the heck?” but it was always me.
He was constantly lying, I knew. It was like, “Did you cath?” “Yes, sure I did…” and he would even come out and throw the catheters in the trash to make it look like he did it.
The doctors could tell: his creatinine would shoot up. I could tell he wasn’t quite himself. When his creatinine is high you can tell he’s not right.creatinine would shoot up.
Mother of Dylan, age 16