ERIC
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How old was your child when they got oxybyutinin?

Hi,

I won’t write a huge story! But wondering when your children who are on oxybyutinin got it?

My daughter is 5 years, 3 months and still hasn’t got it despite input/ output charts, two plus years trying to get her help etc.

She wets several times daily and has frequency and urgency issues. She can’t hold her wee more than a few seconds so if a toilet isn’t within a few metres she wets.

Tried all usual. Only ever drank water, right amount, double voiding doesn’t work, etc etc etc. We are sure she’s got overactive bladder.

Also who prescribed it?

Gp won’t, health visitor couldn’t, continence nurse couldn’t, paediatrician wouldn’t. Seeing different continence nurse in March.

She’s soaked every day when I get her home from school despite school following health plan. They can’t do any more. She needs meds I’m sure.

Two year old, in contrast, is dry!!!!! Takes herself fine and only goes every 2 hours! I work in a nursery and nobody has a bladder like my 5 year old. I know she has a problem. Just want some meds!

4 Replies
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We found even a paediatrician to not be confident to diagnose or treat my son's bladder issue. Only started getting somewhere with seeing a paediatric urologist at a children's hospital. Can you push for that kind of referral?

He isn't on oxybutynin, as not straightforward OAB, but at least he is having tests now.

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Hi - I spent last night re-reading every post ever written on oxybuytnin and was contemplating messaging you to see how you were getting on! Sorry to hear no prescription yet. Our continence nurse asked our GP to prescribe it when my daughter was 4 and 3 months. They had done an ultrasound on her to check she was emptying properly, were happy we were following the drinking and double voiding efforts properly and were happy with bowel management. The nurse said she was pretty sure it was OAB so lets give oxybuytin a try. I wouldn't say the GP has been particularly comfortable about it but has been generally OK to accept advice of continence team.

That was July and we saw a gradual decrease in the number of accidents on a 2.5mg per day dose over the next 6-8 weeks. At the end of September the Continence Nurse advised upping the dose to 5mg per day and just wrote to the GP to say that was what she had told me to do. We then had about 8 weeks of total dryness - something I didn't believe was ever going to be possible. I won't lie, it was AMAZING! She was a different child: no refusing to go to the toilet, no battles with drinking and even some dry nappies at night (not that I give two hoots about trying to get her dry at night right now). We then got a different brand and the accidents started again. Just one or two a week, then one or two a day. The continence team said best to get back on old brand, which we did, but the accidents continued. Just little leaks but the urgency and frequency of before. We upped the dose just after Christmas to see if that would help but the nasty side effects are starting to show now and we are still 3-5 accidents a day. This is still nothing compared to old standards but it's still just rubbish and I hate giving her tablets that are now causing horrible dry mouth, tummy ache, shooting pains in her stomach.... I have actually avoided posting on here because I knew you had your hopes pinned on oxybutunin and didn't want to dash them. Sorry :(

We have our next appointment with continence team on 9 Feb and i think the next step is a paediatric referral although goodness knows what the waiting list will be.

On the positive side, I have dared to potty train my just-two year old and she has got it amazingly well and is even dry at night. It was your post on this that encouraged me to give it a whirl.

I still think getting on the oxybutunin is worth it if you can. It has definitely helped us manage the number of accidents and I find the whole issue so much more less stressful now I can truly see it is the condition causing the accidents and no fault of hers or mine. I agree with Little Cabbage to see if you can get some kind of paediatric referral if the continence team and GP aren't being helpful.

One final thought, in my re-reading marathon last night, I found someone who had found a chiropractor had helped her two sons with OAB. I've started ringing round some local chiropractors to see if they treat children and if they might be able to help. So far I've found one who said they have treated for it successfully before but no promises. Consultation next week so I'll keep you posted on what I make of that….

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Thank you so much for the long reply.

It hasn’t helped that we moved to a different county. Our previous GP said she’d have prescribed it now but obviously we are at a new one who seems less inclined to! The continence team in the last county said we were doing all they’d suggest and didn’t prescribe anything.

We are seeing the continence nurse here in March so maybe they may be different.

Glad your two year old is also doing well. My two year old asks for toilet for wees, goes two hours between wees and doesn’t have the sudden urgency of her sister. She has a normal bladder. Horray!!! Although has toddler diarrhoea, which is a different problem! Hoping she will grow out of that!

I know our five year olds bladder is not right. If she needs a wee she looks uncomfortable and walks to the toilet with her bum sticking out trying to stop it coming out! And that’s even if she’s been less than an hour earlier. If she’s at home it’s often ok if she’s very near the toilet. But if she was in the garden or doing PE at school or on the 10 Min walk home, or forest School etc etc she’d never make it to the toilet. Even with a toilet a few metres away she has to try hard not to leak on the way. When she needs it it’s right now. She cannot hold it at all. She’s never had a ‘full’ accident down her legs. It’s a small patch because her bladder never gets very full. Whereas my other daughters bladder fills nicely over two hours and empties.

I hope oxy works if she gets it! Sounds like it may or may not from your experience!

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Her symptoms sounds so similar to my daughter. Again, it's never a full wet. She tends to pull her knees up to her chest to try and stop it coming and there is very definite look on her face that I know means she's about to have an accident! When she had that dry phase I could ask if she needed the loo and she'd be able to tell me if she needed it a little bit or was nearly busting. When the accidents started again she said she had no warning: 'i didn't even know there was a wee there until it was coming'. Sometimes now I find that if I say it's toilet time, just the thought of it makes her leak. I end up trying to lure her towards the bathroom and then whip her on the loo in a few seconds! I think the science of it is that the constant pressure down of the bladder muscle onto the sphincter at the top of the urethra makes it thicken so it can't hold volume above as effectively.

Anyway, have you seen this before? eric.org.uk/flowchart-dayti...

This might be worth taking to your appointment. In theory you can tick off all the stages and show the prescription is now the next thing to try.

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