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I am trying to get my son a urology referral- I am almost there as the bladder nurse said she would finally do this but not had confirmation yet tho!

I am in the West Country - can I ask what to expect when I eventually get there. My son is wet day and night and has low muscle tone.

I have kept charts for bladder nurses and he is on oxbutynin and desmopressen.

Any insight would be useful and what info to provide- my son is 10 and I am getting really desperate for us all to keep our sanity!

5 Replies

I'm not sure how much I can help, but I pushed our GP for a referral to our local children's hospital. First, we saw general paediatrics, who weren't much help. Then we saw a urology nurse, who measured urine flow speed (son just weed into a special machine), and scanned his bladder after to see how much urine was left.

Then we saw a consultant urologist who has booked him in for cystoscopy.

Has your son had these tests? How do you know he has low muscle tone? And which muscle(s)? Bladder wall/urethral sphincter/pelvic floor?


Thank you for reply. His low muscle tone is his general trunk and arm muscles and now finally under a OT and physio for this.

We are under a bladder nurse but all they ever do is try and alter his meds and keep a diary. Nothing has ever come of it. He once had a bladder scan but that was about 3 or more years ago.

The OT wondered if link with his general muscle weakness and maybe his bladder/ bowel issues.


Oh I see. It sounds like just speculation at this stage then as to whether the bowel/bladder issues are related. I would recommend insisting on being referred to a paediatric urologist - not just a general paediatrician, and not just a urologist.

You say that you are in the west country, and people on here have said that Bristol Children's Hospital is quite good for these problems. Is it daytime and night time wetting that your son has issues with? It really sounds to me as though he needs an actual diagnostic work-up, rather than just fiddling about with his meds without an underlying diagnosis.

Good Luck.

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Can I ask where you are? No worries if not. We are in Gloucestershire and just got told they don't use oxybyutinin here???? We want a urology referral too. My daughter is only 5. Maybe that's why no referral? Her daytime wetting is terrible though and frequency and urgency. How can they not use oxybyutinin in Gloucestershire?


Sorry not replying before. Wow not in Gloucestershire but how can they not use oxybyutinin???

We tried alternatives but didn’t agree with my son at all. Good luck x


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