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tolterodine for urinary incontinence

Has anyone got any experience with tolterodine? My nearly 7year old son has been prescribed this for his incontinence. He has been taking it for about 6 weeks now. When we first gave it to him he had extreme personality changes. He became very angry and reckless. Jumping off of high climbing frames and running off etc. Over the last week or two he has calmed down a lot but his incontinence hasn't improved.

I had high hopes this would work and feel really disbarred that it hasn't. Im wondering if my son actually doesn't know how to stay dry. He has never been dry. He wears pads in his pants and goes to the toilet every two hours being reminded by his wobl watch. I don't know what more I can do.

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Have you had any tests or potential diagnosis? My daughter is on the same (she's 8 and being specifically treated for an overactive bladder) but we were only prescribed it by specialist consultant once overactive bladder had been confirmed, the GP and hospital pediatrician only ever offered oxybutin and, if I'm honest, did so whilst I felt they were really just guessing at what might be the cause of her incontinence and didn't really explain what it was trying to do.

You may be aware of this but my understanding of overactive bladder is that the muscles surrounding the bladder are tight (and often twitch/spasm), and what all of these drugs are intended to do is to help relax the muscles which in turn allows the bladder to stretch. Bladder control in children tends to be difficult unless the bladder is able to stretch to it's proper capacity. The drugs themselves will not give the control but by allowing the bladder to grow we then need to go back to basics and retrain the bladder by gradually holding on for longer each time. We have been on it now for 4 months and when I last did wee diary (measuring what liquid went in and how much came out), I was really pleased that we had quite a few wees where the bladder was holding 200ml+, as opposed to never getting over 130ml on previous diaries so feels like progress. We are still having daily accidents though and have next appointment coming up so am assuming we now need to really kick back in to trying to re-train.

In terms of side effects, we were warned mostly about risk of constipation but luckily have not had that nor any mood swing side effects.

Not sure if any of this helps but happy to answer any other questions as sounds like your son is in very similar place to my daughter.

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Thank you for your reply. What test did you have to get to the diagnosis? My son has seen a specialist and she has said it's overactive bladder. He had a ultrasound scan and bladder function test. He has only ever been able to hold 90mls. He has also been diagnosed with dyspraxia and muscle and joint hypotonia. I'm worried they have made a diagnosis of over active bladder before fully investigating. Feeling a bit disheartened that he is still so wet. Maybe I should keep a diary again and start remeasuring to see if there is any improvement.

How are you planning on retraining? This was another thing I was wondering about. He currently has his wobl watch which reminds him to go to the toilet every two hours but he is still wet. I'm not sure he knows what it feels like to stay dry or how to do it as he has never managed to do it. Xx

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We were referred (eventually) to a children's bowel and bladder clinic in London. They did same tests you've had but my confidence in the diagnosis came from the consultant herself doing the ultrasound when she could actually see the bladder twitching! Until then, a number of generalists had said they "thought" it was overactive bladder but I could almost hear the uncertainty in their voices every time they said it and it felt like too easy an answer. The specialist consultant was in no doubt at all!

I have same questions and worries as you on re-training, I've got appointment next Tuesday and that was going to be one of my questions for them. My daughter also doesn't seem to feel when she's wet (it's usually me smelling something suspicious) and I wonder if that's because to her, as you say, wet is now the normal. My view right now is that we'll need to set Wobl watch to shorter periods, possibly even starting at 1 hour, get the feeling back of being dry and then start to increase the time gradually. It will be a long haul but hopefully worth it. In our case, she has routine that she goes each breaktime and that seems to mean that she stays dry at school but then all the accidents are at home when she is tired at the end of the day and there is less "structure". If you'd like I can let you know what they say next week?

Other issue for me is that whilst she has never been constipated and clears bowel every time (seen on ultrasound!), she does do very large poos, these clearly put pressure on her bladder. When we did the diary recently, the couple of wees before a poo were back to being only c100ml. That can't be helping control so that's the other thing I want to talk to them about.

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Yes please let me know how you get on. It sounds the same as my son. He has extremely large stools but never had any trouble passing them. We had him on sodium picosulfate throughout the summer, but he just kept soiling himself and was getting really upset by it. It hadn't helped with the wetting so we stopped it when he went back to school as I didn't want him soiling at school.

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Hi there, just got back from appointment and thankfully consultant seemed as pleased with progress as I had hoped. We're sticking with Tolterodine for another 3 months and doing another 6 week burst of TENs. Back again in another 3 months.

She confirmed that bladder appears to be stretching now, our max output was 250ml (up from only 140ml previously) and she's said normal would be only 270ml so we're getting close. She didn't seem worried that we are still having accidents, that she thinks will sort itself out later. And also said that the twitches can sometimes be large (which triggers the pelvic floor to react) but also that she's observed using ultrasound smaller twitches that are enough to cause an accident but not "strong" enough that the child notices and therefore doesn't contract pelvic floor muscles to hold it.

In terms of retraining she's said not to push it for now but to consider a concentrated effort over Xmas hols (at the end of next round of TENs and tablets) but to think about using Wobl watch again for when she's at home just to try and get her used to staying dry. Her view is that the denial of feeling is a coping mechanism which also makes some sense.

On big poos, as she's not constipated, the view was not a lot you can do. Yes, it will push on the bladder but over time the bladder should learn to cope with it.

Last thing she's said is that maybe next appointment we'll also start to work on night times too.....I've taken that as a really good sign as last time she quite strongly said, don't even worry about that until we're starting to get daytime under control.

Sorry, ridiculously long post but hope it has some content that helpful and to be honest a bit of a download after all the information we got today!

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That's great to hear. Sounds positive. Gives me hope that we might start seeing improvement. I'm going to keep a wee diary this weekend to see if there is any improvement with bladder capacity.

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My daughter was on tolterodine, and it caused mood swings, she was incredibly anxious which went as soon as we took her off the medication. I didn’t feel we had a good result with the wetting, so it just wasn’t worth it for us.

She then tried oxybutynin patches, which caused diarrhoea, however it does seem to have increased her bladder capacity to 200ml at last test, previously 110ml approx.

She is now on one I think solfa? Not sure what its called exactly, on a very low dose and wait and see. Hospital have said that we keep trying until we find the medication that suits her best. My daughter is also 7, good luck with it all.

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Sorry new med is called solifenacin

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Thank you for your reply. I think I'll contact his consultant and see if it's worth changing the meds. It's just such a shame to see him so angry and restless when he is usually so placid and laid back. He has only been taking them for 6 weeks so felt I should keep him on them longer but maybe a call would be beneficial to see what they say.

I hope the new meds work well for you xx

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New meds only started a week ago, so keeping fingers crossed, I would ring the hospital to discuss further, at Our hospital once kids are over 7 they are allowed to prescribe more, and they are newer meds generally with less side effects, so I am told. We were in the middle of kitchen renovation when my daughter went on them, so kind of assumed it was cause we had so much going on, but within 24 hours off them, she was so much calmer. Good luck, I would make a phone call to discuss.

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My son is also on solifenacin. Also known as Vesicare. He was on oxybutinin the Tolterodine and now Vesicare 5mg tablets/day

Stick with tolterodine for a couple of months to gain the best results but obviously stop taking them if you notice any dramatic changes. My son turned into the incredibel Hulk when taking Oxybutinin but medicines will react differently for different children!

An different consultant we saw just wanted to double the dose of Vesicare but I refused saying if 2 previous medicines aren't working nor this current one then I don't believe doubling it will help his situation

Interesting someone on this thread mentioning TENS treatment And interesting how different areas of the country offer different treatments

My son is due to have urodynamics test next week I think just to confirm what we already know, that he has an overactive bladder. There's talk of him being a potential candidate for PTNS which is acupuncture Over 12weeks but the hospital have to apply for funding for it which is a long slow process!

Sorry I've waffled but it's good to hear other parents have kids in similar situation so you don't feel like you're making the bladder stuff up or going crazy!!

I'd be interested to hear how the TENS treatment goes as it sounds less invasive that this PTNS!!

Cheers

Amy

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My daughter is using TENS, from what I gather it's one quite often suggested by our hospital for bladder conditions (we're now under care of the Evelina in London) but like everything else it works for some and not others. We seem to be one of the lucky ones although we are doing it in conjunction with Tolterodine so not 100% clear whether TENs individually, tablets individually or combination of the two has made the difference.

I like it though for the reason you'd called out in that it's non-invasive and (other than need to get a child to sit still for an hour so watching too much rubbish TV!) it has no real side effects or risks. The stats I've been told, for use with overactive bladder, are about 1/3 it has no impact, 1/3 sees some improvement and 1/3 it can cure. Those stats are all word of mouth though; I've not seen them written anywhere but even if the numbers aren't quite right, I'd say no harm in suggesting it as a possibility.

My daughter used it daily for an hour for 3 months, then we had break with just tablets for about 6 weeks and now just starting another 6 week daily burst, reducing it down after that to 6 weeks of only using 3 times a week.

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I'd be really interested to hear what the urine charts show for just tablets and then the one for when she's just had the TENS!

Did you say they viewing her bladder "twitching" using ultrasound? Did they have to catheterise her for that?

That's what my son is having next week, using gas & air for the catheter part of the procedure

If I could chose for him not be on tablets I would as I don't believe they've helped with the urgency at all. His frequency has defiantly improved over the last 4years, though possibly a combination of maturity, strengthening his bladder by drinking the right amount daily and all the other things kids are told to do as part of bladder training like double voiding. He used to wee up to 19 times a day usually 50mls at a time and he's now doing the occasional 200mls. So things are improving but not the message getting to his brain telling him he has to go.

I may enquire about TENS as an option

Is your daughters school being supportive whilst she takes time off for this treatment?

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Unfortunately she's never been on just one or the other only both so can't answer your first question. We've been lucky though and she's had no side effects of the drugs hence why we're continuing with both. Am not keen to have her on medication but given the improvement we've seen am trying to push that worry aside for now.

When the consultant did ultrasound and saw the twitch, it wasn't intrusive in any way, just like the ultrasounds you have in pregnancy, "jelly on the belly" as my daughter calls it. I do think though that it helped that the person looking was the specialist herself and she really knew what she was looking for....but it was very pronounced for us and she was able to show me on the screen!

School not really an issue. She only has time off for appointments which is every 3 months. When in school she has permission to go to the toilet when she needs it which is great but she also follows strict routine of going every break time to limit the number of times she has to go out of class.

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We used TENs for 10 weeks for an hour a day but didn't see any improvement. But is worth a try as AliStan said, its non invasive so you have nothing to lose.

I'm finding it a real struggle with Tolterodine. I don't like my son having medication, but happy to try anything if we get positive results. I'm still keeping my fingers crossed for some good results.

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