He had a sensation and he went!
The confusing part, and the good part, was when he turned five. He was feeling like he had to go to the bathroom, so we would bring him over to the toilet and he would pee! Okay, now we’re getting confused. So the recommendation was to take him off of the Ditropan (Oxybutynin), see what happened, and I had a month before school to do that. So we did it, and it was summer, so I take more vacation during the summer. He was doing wonderful! It was one of those things, you just don’t want to say anything because you don’t want to rock the boat, but he was peeing! And he learned how to pee, and because he was off the Ditropan, everything was kind of normal inside, not being held back. And he had feeling, he had sensation, and he went! We didn’t trust him completely at school and we didn’t want him to be embarrassed, so for the three hours of school we put in a pull-up. But as soon as he came home we changed him into underwear. By Christmas of that year, so about a year ago, we were probably only cathing once or twice a day.
Mother of Jared, age 6
We didn’t want to send him to kindergarten in a pull-up
The doctor tried, I forget what the injections were, but that didn’t work – it was kind of to bulk up the bladder neck. That didn’t work, so they started talking about a bladder neck reconstruction when he was maybe four, three to four. There wasn’t like a health reason that we had to get it done sooner than later, but we decided to do it before he entered kindergarten, just to get it behind us and not have to pull him out of school, try to get a normal routine down. It started to get frustrating that summer when he would still have to wear a swim diaper. It was kind of getting to that age where he should have been potty-trained, so that was another factor too. When he was dressed it wasn’t so much of a problem, but we didn’t want to send him to kindergarten in a pull-up.
Mother of Eric, age 8
Knock on wood
This one antibiotic, it’s fantastic. She’d been on it when she was like a baby but then they took it off the market when she was around 7. There was a few years when she all of a sudden had to go on another medication, but she was having UTIs every couple of months. It was awful! Oh, she had bad, bad UTIs. She was hospitalized overnight a few times to get the IV and whatever.
And then when the original antibiotic came back on the market, we hopped right on the bandwagon, and knock on wood, it’s been over a year.
Mother of Elizabeth, age 16
This is just not getting any better!
We had had all of her testing done at that point – we knew she was ADHD and Asperger’s. We knew how that was playing into kind of messing with the actual bladder meds, because sometimes the neurological pathways get crossed. So we had watches that beeped, and she went every two hours, and then we turned it over to a buzz, and it just, it only worked so much. It would work sometimes, we’d have good periods and bad periods, but it only worked so much.
I had a whole summer where I was off for three months because I had had a surgery and it was after watching her and having her with me every day for three months, just me, I was like: this child has no idea she’s had accidents, this child has no idea if she needs to go. She has no idea that she’s gone or how long she’s sat.
We had tried the exercises, the biofeedback, and it wasn’t making any difference. So it was the beginning of second grade and we go in to the doctor. I think it was like the first or second week of school, and I just said to him, “This is just not getting any better, and she doesn’t even know she’s wet!”
Mother of Meghan, age 8
They recommended the sensor
Mom: And up until about a month ago we were still using pull-ups at night but we had gotten to the point where they weren’t working because they weren’t big enough, they don’t hold enough. So we called in and they recommended the sensor.
Meghan: And I got that thing and the only bad thing about it is that it goes beep beep beep in the middle of the night and you have to get up and take off your underwear. And you’ve got to sleep on an angle. That’s the only bad thing about it – seriously!
Mom: But seriously, how many times in the last week has it gone off in the middle of the night?
Meghan: Zero!
Mom: And we had a couple of nights that she slept without it…we learned her pattern really fast, cause it would go off at like 9:30, so now we just get her up at 9:30 to go to the bathroom. And then it would go off around anywhere from one to three and it did that for the first two or three nights and then it stopped going off because she kept herself dry.
Her goal with the overnight is to get off the sensor and have a dry bed for a month, so that for her ninth birthday in June, she can have a sleepover.
Meghan, age 8, and mother
You get tired of all this!
Now she does the Kegels, she does them herself. But when she was little, she used to push a ball between her legs, like that, and relax. But then as she could figure out how to do Kegels, like for the past two years, she’s been doing Kegels, because she can control that.
Last year, I said, “Okay, this is it. I want to get her out of this.” We gave her all these laxatives, she was almost in diarrhea-state, and she would do the exercises, like, four times a day. I would monitor that very closely. But from July until now, I don’t know if we got tired….I mean, you get tired of all this! I’m not monitoring four times a day. You know, I prescribed that number, they just say do exercises…so twice a day she does it, but I think probably once she will do it at night.
Sometimes I ask her, “Please Naomi, do the exercises.” Sometimes she remembers. And then, as I’m telling you, the laxatives, we kind also of tapered them off, because we got tired of everything and seeing that she was not responding a lot.
Mother of Naomi, age 10
We thought his situation would improve
Ryan continued being wet constantly through first grade. We tried different doses of Ditropan (Oxybutynin), the Oxytrol (Oxybutynin) patch, etc. We also tried biofeedback with the Urology Department of a local teaching hospital. After first grade, I asked the doctor where the top pediatric urologists in the world were found, and he answered Boston Children’s. So we made an appointment and set out for a week of appointments in Boston. The urologist here was wonderful. He performed many tests including a urodynamic study, VCUG, KUB, and a neurological assessment. He discovered that Ryan had posterior urethral valves. We stayed a few extra days and he ablated the valves in outpatient surgery. He added Detrol (Tolterodine) to our mix of drugs and thought that his situation would improve over the course of the next year. Unfortunately, that was not the case.
Mother of Ryan, age 11
No bladder medication option
We returned to Boston and he doubled his dose of Detrol (Tolterodine). Because of this, his bladder was no longer able to contract on its own to urinate, so Ryan began to have to do intermittent self-catheterization. The idea was that the Detrol would quiet the spasms in the bladder that caused the accidents – but at the same time it caused him to not be able to fully empty his bladder on his own. We began this course of action in the spring of 2009. By fall, it had become routine for Ryan and for all of us, but he was still having urine leakage despite it all. We returned to Boston in August 2009 and left with a plan of staying the course a little while longer. However, about a week after we returned, in early September, our pediatrician came across a new FDA report that Detrol and similar drugs could cause Long QT Syndrome, a potentially fatal heart condition. She sent Ryan for an EKG as a precaution. The test came back positive for Long QT Syndrome.
We worked with the urologists at Boston and locally as well as the cardiologist. We decided to stop all bladder medications for a month and see if the heart condition resolved. Once the medicines were out of Ryan’s system, he could empty his bladder on his own so we stopped the intermittent self-catheterization. During that month, he was not allowed to do any physical activity at all because of the cardiac risk. This was extremely tough because he is a typical very physical and athletic boy. At the end of September, they did a thorough series of cardiac tests, including an exercise stress test, with no medication in his system. Fortunately, the condition had resolved. However, this left him with no bladder medication option.
Mother of Ryan, age 11
Hoping for a sudden breakthrough
Once we knew that Ryan could no longer be on the anticholinergic medications, our local doctor at Duke began really brainstorming on other treatment options. He found this treatment called PTNS (Posterior Tibial Nerve Stimulation) and found a local doctor who was doing it on adults. Nobody else in our state was doing it – and very few people have tried it on kids. Believe it or not, we live in a major metropolitan area and yet have to travel to a practice out in the country for our treatment! At treatment, he removes his shoe and she puts a pad on the bottom of his foot. Then, she inserts a very thin, long needle in to his leg just above the ankle. When the needle touches the nerve, she looks for signs with his toes. Then she turns on a small box which runs an electrical current through the needle and to his posterior tibial nerve. We wait for 30 minutes – and Ryan passes the time by reading or occasionally playing a game on the iPod. Sometimes he says it hurts, but most of the time he describes it as a fluttering sensation in his foot…We began PTNS treatments about three and a half months ago. We have seen some minor improvements and so are continuing the treatments a while longer, hoping for a sudden breakthrough.
Mother of Ryan, age 11
Switching around her meds
The other thing is we started switching around her meds. Like now, she didn’t get up until 8:30, because it’s the summertime, and we’re not back in school yet. She didn’t take her meds until about 9:30, so if she doesn’t take her meds until 3 or 4 in the afternoon, it’s not a big deal. But in school she’s up at 6:00: she has breakfast, she takes her meds, then goes up, takes a shower, gets dressed, and brushes her teeth. So I’ve been thinking, “Oh man, by noon it’s been six hours already!” So we started giving her afternoon meds at noon, at lunchtime, to kind of cut down those hours so she gets a little more jolt of the Ditropan (Oxybutynin) while she’s in school. We’ve kind of just been messing around with that here and there. She was on prophylactic antibiotics all this time, and her urologist has told me before we could stop it, and I kind of was like, “Let’s not mess with a good thing,” but we finally did stop them this summer and she seems to be doing okay without them. She’s doing great actually.
Mother of Kayla, age 14