Daytime wetting. Meds not working

[Poppymum]

Hi,

My daughter ( age 5yrs 8 months) has been on oxybutynin for a couple of months with no success. We started on 5mg daily rising to the max dose of 15mg daily and it didn’t have any effect.

My daughter gets very sudden urges for the toilet, her face will suddenly pull a face as if in pain, she will run to the toilet and by the time she’s there there’s a big patch of wee on her trousers. This has always been the case since coming out of nappies three years ago. The intervals have improved ( she can go over an hour between wees now, which she didn’t use to manage) but she will be talking to me one minute and very suddenly her bladder seems to spasm and although she tries she leaks before getting to the toilet.

Does anyone have a similar experience of this and oxybutynin not working? It did increase the intervals sometimes and make the wet accidents bigger but didn’t stop the big spasms so we were advised to come off it.

What is the next step in finding a solution? She weed on a special toilet and apparently the flow was normal. She didn’t have any spasms at the appointment though so they didn’t get to see that. I can tell by her face when she has a spasm.

Where do we go next?

[Helen36]

I’m so sorry to hear it’s not working ... I know you were really hoping it would. Ours took from July to October to really make a difference so I would say maybe don’t give up yet... they say it’s only in the system a few hours but I felt like it took a while of taking it to calm the bladder enough to stop it. Our continence nurse described overactive bladders as like the hiccups, it just can’t stop when it is going, and then keeps coming back like hiccups do. My only other thought is that we now know from a bowel scan that it is my daughter’s enlarged bowel pressing on that caused the spasms and when her bowel is packed, still causes wetting. (But she doesn’t have symptoms of constipation) We’ve actually found it more effective to control her wetting now through her senakot dose. We definitely needed the oxybutynin to stop the bladder twitching but now we’ve calmed that, the bowel is our key. My reason for saying this is to ask whether you know if this is a factor as well as you might find you need to be controlling both to give the oxybutynin a chance. I’m sure you’ve been down the constipation path before getting here but it’s the managing together that has helped us. Hope you have a breakthrough soon xxx

[AliStan]

I'd echo Helen36's thoughts and question whether there may be bowel issues combining with bladder.

Like you, Oxybutynin did nothing for us. We got diagnosed with Overactive Bladder well over a year ago now, we tried Tolterodine and also TENS which helped a bit but not a lot. It wasn't until this visit (3rd visit - and at specialist) that they saw on scan her bowel was absolutely full and stretched, yet she'd literally been to the toilet to clear bladder just before the scan. She's always been regular with poo, never any pain or problems passing it but yet, it was there, and very obviously so, on the scan and she'd had no sensation that told her she needed to go! Because of all that we'd never suspected constipation to be an issue but when I saw how much it was pushing on her bladder, it was amazing she was holding anything!!

Since then (which was back in April), we've added Senna to her daily routine and she's now doing 2 "good" poos (ie thin, smooth, sausages rather than great big and often lumpy poos) a day - first few days we had 3 or 4 but think that was just catching back up and clearing out. Senna apparently doesn't soften the poo like a laxative but helps give the sensation of needing to go so makes her poo more often and therefore keeps the bowel clearer, hopefully allowing it to return to it's normal size. We're also doing TENs (although to be honest not very regularly as struggling to find time around all her gymnastics!). The last element is that the consultant also seems to have finally got through to her that drinking is absolutely critical and so she's really trying (and succeeding most days) to drink 2 x 750ml bottles of water a day.

Result - not there yet but the last few weeks I've really noticed a difference. We've had the odd daytime accident but they really are damp patches rather than full accidents. We've thought things were improving before so I'm really trying not to get too excited but it does feel like real progress. Unfortunately it has taken a couple of months getting bowel under control before we saw difference with bladder control so not a quick fix.

Would suggest, if you've not already done so that you ask about bowel scan, if only to make sure you rule it out as an option.

Best of luck

x