Oxybutynin

[Highland-Lass]

My daughter has been on 5mg twice a day of oxybutynin. It’s helped massively and she now doesn’t dribble and finally dry at nights. My question is - is this something that we can now stop taking or how does it work? With the situation in the world right now I know it will be a while before an appointment with her paediatrician so thought I’d ask for advice! Thanks for reading and stay safe 😊

[PinkTCC]

We’ve got a phone appointment with my daughter’s specialist coming up, so it’s worth calling for an appointment and it will probably be via phone.

[Helen36]

Definitely need specialist advice but when we came off it we had a period of sustaining the effective dose and then a very gradual reduction until we finally braved dropping it altogether. Glad it’s worked for you

[Highland-Lass in reply to Helen36]

Thankyou. I will call Monday. When you guys came off it, did the issues come back? I’ve read so much that it just works while on the drug but as soon as you come off it your back to square one? Il be heartbroken if that’s the case!

[Helen36 in reply to Highland-Lass]

Not for us, fortunately. My daughter’s overactive bladder was caused by her bowel pressing on it and ‘irritating’ it until it was overactive. We got the bowel sorted and then the oxybutynin brought the bladder until control. She will still have wet accidents from time to time if she gets constipated but not in the same way as when her bladder was properly overactive which, as I am sure you know, is actually quite distinctive with the dribbling.

Our continence nurse described the overactive bladder as like the hiccups where it just can’t stop twitching. This causes the valve at the top of the urethra to thicken to try and withstand the pressure from the twitches which ironically makes it more leaky. The oxyb relaxes the bladder muscles so the twitching stops and then you just need a little time to make sure that valve has fully recovered and then a gradual reduction to ease off it.

I have a friend whose son has cerebral palsy and is on oxybutynin and who has never managed to successfully come off it, but clearly that’s a very different set of circumstances. It’s also very different for adults on it as again, different causes, that mean once you are on it, it’s usually for the long haul. So I guess it depends on the cause of the bladder being irritated in the first place. Do you have any idea of the cause?? X

[Highland-Lass in reply to Helen36]

We have no idea why. I’d say it is her bowl but I think naturally she is more constipated. We use movicol but she needs a really high doze to help and then when we try lowering it, she just goes back to square one. Her doc suggested we try stop the movicol as it doesn’t bother her and she goes daily (just always hard) and fully empties and just try tablets so that’s what we have done.

[Helen36]

Oh bless her. I’m not an expert but in the absence of any other factor it sounds like the bowel probably was the culprit, especially if movicol has helped reduce wet accidents in the past.The clinical pathway for day wetting is always to treat for constipation first, even if there are no signs of it, but it sounds like you do have some signs. I’m quite surprised you’ve been advised to drop the movicol as I would have thought it was prudent to try and keep her poos nice and soft to avoid a relapse on the bladder front- but my experience has been that it’s all about the bowel for us, so that’s always been my benchmark and every child is different. How old is she? Does she ever have soiled accidents?

I’d suggest watching her bowel like a hawk from now on and doing all the usual stuff like fruit and veg and as much fluid as you can get in her to help her poos. I’d also suggest getting her to try for a poo after her main meals to help try and keep the bowel moving as that should be your best chance of keeping the bladder in good order. Xx