When was your child's overactive bladder diagnosed?

[Poppymum]

My daughter (5 next month) has always suffered with daytime wetting. She wees frequently and either knows she needs to go when the first drop is coming out and runs or doesn't get there. If she's not near a toilet she will wet. If she's near a toilet she will wet a tiny amount and do the rest in the toilet.

The school nurse wants us to do 4 days input/output charts. We did this once before and they weren't looked at although that was before involvement with school nurse. She only started school last week and we contacted school nurse straight away!

Last time we did input output she had 15-17 wets but lots of those were literally tiny tiny patches ( weighing 2g or so! We had to weigh pants!) so lots of tiny leaks and then a few big leaks each day. Normally we would probably only notice the few big wets a day as the little leaks are that small.

Our former health visitor is sure it's probably overactive bladder.

We've done the trying double voiding, making her sit longer to try to get a bit more wee out, ruling out UTI ( all tests have been negative and she's been tested lots of times), it's not constipation- poos are a daily soft sausage in toilet!.

Just wondered what age people got diagnosed? And do they get oxybyutin straight away? I've heard they don't give it til they're 5. She's 5 next month!

[AliStan]

Hi there. For us, I really had to fight to get a referral to pediatrician when my daughter was 6, despite visiting GP numerous times since the age of 4 during which visits I was made to feel like I was making a fuss over nothing and told she'd grow out of it until I finally got a referral by breaking down in the GP surgery with the stress of it!

The referral was to a generalist pediatrician at our local hospital and, to be honest, whilst she suggested overactive bladder and we got oxybutin at that point, it came with no explanation of what it was meant to do and a very vague description of overactive bladder.....I was far from convinced that they were really sure. 4 months later still no change at all and I forced a phone consult with the pediatrician who wanted "to try" something else (again with little conviction). I was worried that they were just pushing different drugs onto my daughter but without any conviction that they knew what they were dealing with .....it felt like trial and error to just shut me up.

On that call though, she mentioned (almost in passing) that she could "possibly" refer us to a specialist bowel and bladder clinic at the Evelina Children's Hospital. I was like a dog with a bone at that point and refused everything else until I got that referral!!

We had to wait another 6 months for an appointment but it was worth it (by this time my daughter was 7 1/2). The consultant there confirmed the overactive bladder diagnosis but explained clearly what she'd seen in wee charts, flow tests and ultrasounds that left her with that diagnosis. She then explained what she wanted to do and was clear there was no magic answer. The drugs would not stop the wetness but hopefully they would relax the muscles to allow her to then retrain her bladder correctly and finally "grow out of it"! Wasn't what I wanted to hear but it was a massive relief to finally feel like we really knew what we were dealing with and even though we had no promises, we really had support of someone that knew their stuff.

In terms of tests along the way, the ones we did for the Evelina were no different to ones we'd done before but the big difference was getting to someone who really understood what they were looking for. Difficulty for us (that we now know from Evelina) is that she actually has incredibly strong pelvic floor muscles. That's good news for longer term, but given the severity of the muscle spasm, she was having a lot less accidents than they would have expected, therefore masking the problem and making it harder for non specialists to diagnose.

Sorry, that's quite a ramble but hope might be of interest and happy to answer any questions it brings to mind.

[Meravigliosapaura in reply to AliStan]

Hi Alistan, hope you read me. Did your daughter grow out of it eventually?

[AliStan in reply to Meravigliosapaura]

Not yet.....we're still battling!

We now know that her OAB is also impacted by bowel. We'd just had a really good few of weeks, with only the odd daytime accident, and I was getting quite excited that this might be heading in the right direction but then we've had a really few days! She's currently on both tolterdine for the bladder and Senna to help the bowel.

What I realised yesterday is that the size of her poo has got bigger again, so I've just had to up the Senna dose to see if we can get that back under control, meanwhile, we're back to 3+ accidents a day again. It's so tough and a real rollercoaster ride with no clear end in sight.

Sorry, I wish I could give you better news.