Solifenacin - any better than alternative bladder meds?

[profyaffle]

My 11yr old son (starting secondary in Sept) is still wet in the day and night. He has been diagnosed with an irritable bladder, and has been on medication for the last two years to try and help but none of them seem to be working.

Oxybutynin improved his symptoms slightly (fewer big accidents, but still general dribbling of wee and max vols of 150ml) but had terrible side effects. Tolterodine was side effect free but only improved his volumes to about 200ml. The latest med we're trying is Solifenacin. We're only a week in so I admit it's early days, but it seems to be having no impact at all, we're back to lower volumes and full on wetting incidents

I'm so demoralised by it all. He's had uroflow and bladder ultrasound, we've tried bladder training, drinking schedules, alarms, vibrating watches, measured water bottles, bottles with special straws, a TENS machine, pant wetting alarms, but it just all feels so futile and he's now in total denial about the problem.

Has anyone had a positive experience with solifenacin over other meds? Or does anyone know what the next line of treatment might be if drugs really don't help?

Thanks so much for any help xx

[Teddy500]

Hi, my son seems almost exactly the same as yours, same age (dreading how he's going to cope at Secondary School in Sept), max bladder capacity with Solafenacin of 200ml, leaks urine when he gets the urge to go, wees in his pull ups overnight. I have no cure currently but we have had a first appointment with urologist last week and they're starting with an MRI scan. Solafenacin takes 4 to 5 weeks to take it's full effect, so you may yet see more improvement yet. The urologist also mentioned biofeedback which is something that he may have as the next step after the MRI. In the meantime we've started pelvic floor excercises twice a day. I'll let you know if we find anything that really helps, best wishes 🦋

[profyaffle in reply to Teddy500]

Thank you that's reallly reassuring about the Solifenacin. He was doing ok on the Tolterodine but not brilliantly, so I just need to be patient I guess. We've been dealing with it since Reception and my mantra has always been 'as long as it's sorted by secondary' and now it's obviously not going to be, I'm really dreading it for him too.

Can I ask how your son does his pelvic floor exercises? I've tried to explain how I do mine but I don't think it makes as much sense for a boy, and I do think it would help with his leaking.

I'll have a look at pumpkin oil too, thanks for the tip. One thing that's helped my son was a TENS machine - it improves his capacity by about 50-100ml. Only when he's wearing it unfortunately, there's no after effect, but it does help and he doesn't mind wearing it when he's around the house.

Best of luck to you guys too, I figure we've still got 6 months to make a difference!

[Teddy500 in reply to profyaffle]

Hi, so the instructions for pelvic floor (from the physio) are to sit on a firm chair, feet flat on floor or on something if he can't reach the floor, take a deep breath in and out, then squeeze the pelvic floor muscle which is the same as when he's trying to stop a fart from coming out 🙂 to do this squeeze 10 times quickly then hold it for 10 seconds, it shouldn't involve the clenching of his bottom 🙂. To be honest I'm not sure if my son fully gets it right. The other way to try to get them to identify the right muscle is to try and stop weeing mid flow and think about the muscle being used, or to do a strong blow when finished weeing and this also helps to fully empty the bladder. We're also doing daily kegal excercises which are squats, lunges and the one where you lie on the floor knees bent and raise your middle (they're on You Tube) with a few star jumps and stretches thrown in for good measure, it's keeping me a bit fitter anyway if nothing else 🙂 I'll see if I can get a TENS machine to try, thanks!

[profyaffle in reply to Teddy500]

Amazing thanks, we'll give those a go! This was the cheapest we could find the TENS, recommended by our consultant. I know some clinics do rent them though. It's P05 you need, pads go in the small of his back. shop.desmitmedical.com/neur...

[Teddy500 in reply to profyaffle]

They're not as pricey as I thought, think I'll just buy one.My sons physio suggested he tries a 'bladder drill' which will have to wait for the Easter school hols, but the instructions were to try to gauge how long after having a wee he then gets the urge to go again. If my son has had a big drink it's possibly only 30 mins. That's the starting point/time. So when he gets up on a morning we set a timer for every 30 minutes and he has to go for a wee every 30 minutes whether he feels he needs to or not. He does this for 3 days. On day 4 the time is increased by 15mins. On day 7 increased by another 15mins and so on. The idea behind it is to get the 'urge' to 'chill out' as he's having a wee before the urge to have one comes along. Have you tried this before? I'm so used to asking him to try his best to 'hold it' to therefore stretch/increase his bladder capacity, but I think we need to try it, as 'holding it' isn't getting us very far 😕

[Teddy500 in reply to profyaffle]

Thank you for suggestion and link for the TENS! 🙂

[CT_44 in reply to profyaffle]

that’s really helpful sharing the link for tens machine - was thinking of using it for bladder condition - did it help you ?

[profyaffle in reply to CT_44]

Hi CT_44 - it was my son who used it (he was around 9/10 at the time) and it did make a difference to his symptoms, but only really while he was wearing it. Once he took it off the urgency tended to return. Hope that helps and good luck!

[Teddy500]

Forgot to mention Pumpkin Seed Oil.....we're also looking into that at the moment, pretty desperate to try anything and everything at this point 🦋

[Aaateam]

My son has just been put on solifenacin. It's been a week and like your post if anything we have gone backwards. Did you end up having any success with it?

[profyaffle]

Hi Aaateam, I'm afraid we had a bit of a disaster on Solifenacin. One of the known side effects of all these drugs is anxiety. He developed quite bad anxiety after he was first put on oxybutynin, but there were other issues going on at the time so we were never sure if it was the drug or not. It didn't do much for bladder control so they later switched him onto Tolterodine which seemed to be marginally better anxiety wise and in terms of bladder control, but wasn't a complete success so we discussed alternatives. They then suggested switching him onto Solifenacin but that triggered absolutely horrendous anxiety and panic attacks. By the time we got back to see Dr Wright three months later he wouldn't let her touch him and was cowering in the corner, it was horrendous So we put him back onto Tolterodine. The panic subsided very quickly after he stopped taking Solifenacin and the Tolterodine, though not perfect, did take the edge off his symptoms.

That was two years ago. He is now nearly 13 and has been off meds for about 6 months. He still suffers from anxiety and one of the reasons for stopping is that in the back of my mind I still couldn't be 100% confident that the drugs weren't making it worse. I do think his anxiety has become more manageable since he stopped taking it. He no longer has accidents in the day time and is now dry at night (though he has to wake for a wee most nights because his bladder capacity is so small). I suspect (and Dr Wright had advised last year) that this has just happened over time as he grows and matures. He still drinks hardly anything but the days of endless wet pants and accidents are, I think, finally behind us.

Not all kids suffer anxiety as a side effect - my son is prone to it anyway, there is a family history of it - so that's no reason for you not to persevere with the Solifenacin, I had high hopes when we first started and Dr Wright had been optimistic it would help. I don't know how old your child is, but I guess I'm here to say if they are still pre-teens then hang in there, it can and does get better! Good luck!