Log in
ERIC
2,350 members1,084 posts

Coming off oxybutynin?? Any experience

Hello. My 4 year has been on oxybutynin for 8 months now. We saw a urology nurse this week for a flow rate test and she advised me to take my daughter off the oxybutynin.

She said she didn’t feel like it was doing anything.

I’m a bit worried about this, my daughter has always still had wet patches even while on the medication,has a lot of bladder spasms and sudden urges.

Today was the second day off it and it’s like she has no control and was leaking everywhere.

We’re waiting to go back and see the doctor next week but I just wondered if anyone else has taken their child off the meds and what happened?

12 Replies
oldestnewest

Hi

My son was only on Oxybutinin for 4 weeks and made him worse. Pediatrician said to take him off. We stopped immediately with no consequences. Waiting to start another medication after 2 weeks break.

1 like
Reply

Do you know what medication it is that he’ll be on next?

Reply

Yes we're trying Tolteridone next. Probably next week as he has a bladder scan this coming Friday.

Reply

Hope it works for him x

Reply

Thank you. Good luck when you go to the doctor.

Reply

My daughter was on Oxybutinin for about 8 months and it reduced her wetting hugely however I was quite concerned about her staying on it long term and then she started soiling on it so we weaned her off it and wetting returned. I think the medication helped reduce my daughter's twitching bladder so she could tell when she needed the toilet (ie had a full bladder) however without the medication she can't differentiate between a twitch and a full bladder and so has bigger accidents and wears pads. We haven't gone back to oxybutynin because I know that she also has some bowel issues which oxybutynin makes worse so we are trying to get on top of these first before even considering trying oxybutynin again...

1 like
Reply

Sounds exactly the same as us at the moment. Saw the nephrology dr again today and she basically said she’ll outgrow it and we just need patience and timed voiding/double voiding etc which is easier said than done with the fact she’s only 4 and at school. Feel like I’m back to square one again. Already gone through all this.

Hope we get all get some luck soon x

Reply

Hi, my son has been Oxybutynin for 3 years and a half now. He is now 7. We have been off it regularly. The first month he does quite well, but then symptoms are still there: urgency, frequency and holding manouvers... However until he was 5 and a half he used to soil daily (maybe due to Oxybutynin?) but we decided to go on because his symptoms were very severe and he was ashamed to wet (he had small patches only on his underwear)... Now things are slightly better but there are still bad days.. I was told overactive bladder improves with time and that 7 is a good age but not enough still. Doctors told us he will grow out of it before puberty... I think towards 9 or 10 years... So hold on! Should you need further information, please let me know! Good luck 🤞

1 like
Reply

So I may have another 3 years to go.

Thank you. Such a hard thing for them to go through. Breaks my heart x

1 like
Reply

My daughter is 8, coming up to 9 and on oxybutinin for the last few years. At first it made a huge difference, but not so much recently. She didn’t take it all through the holidays and only had a couple of accidents. The dr advised to come off it and she has been ok at school this term. I think perhaps she is just growing out of the problem. The poo withholding is another matter!

1 like
Reply

That’s great news that the wetting may have stopped for you.

Haha they stress us don’t they. I feel like there’s always something.

My little ones on and off with her poo holding/soiling.

I will keep her off the oxybutynin for now then and see what happens. Thank you

Reply

My son was on Oxybutinin, it did work but I wasn’t keen as it has been linked to dementia in older people (no research done in children as yet). As my son’s grandad has dementia anyway I wanted him of it. He is now on Trospium Chloride which has helped greatly. He now only has the very odd night wet.

1 like
Reply

You may also like...