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dysfunctional voiding and very damaged bladder, anyone able to share experiences?

(7 Posts)
Flossish Thu 12-Feb-15 09:39:00

My ten year old has been diagnosed with this following a long awaited cystoscopy on Tuesday, where a huge trabeculated bladder with diverticulitis in multiple areas was found. Hes had a supra pubic (in through the tummy into the bladder) catheter inserted.
Original plan was to wait for 6 weeks and try to retrain the bladder, but a phone call yesterday ( from the consultant himself) suggests that they have changed their minds and have brought forward urodynamic testing we'd been told we would have to wait for at least three months for, to the week after next. Also an mri, ds has a small sacral dimple (I don't think this team is aware of this) which I have tried to point out previously.

I have been trying to get to the bottom of what is causing his issues for the past 16 months, since he had a bleed which was diagnosed, in the absence of pain or temperature, as pyelonephritis. he had his first uss 14 months ago which was abnormal but nothing was really followed up.
I'm a Big concoction of sadness anger, frustration and uncertainty. Ds has been in a fair bit of pain, all of his out of school activities are having to be stopped and he is anxious. He's never been a teeth grinder but he has started over the past two days.

A quick Google for support groups for him isn't coming up with much so I have turned to the mass wisdom of mn for advice and experience.

Flossish Thu 12-Feb-15 15:55:41

sad

Flossish Thu 12-Feb-15 21:43:05

Is it really this rare?

Really would have thought there would be support out there for children with this sort of catheter, maybe it is so far a few between. We

chuzzlewit Sat 14-Feb-15 07:43:19

I'm really sorry your poor ds is going through this.

I'm afraid I don't know anything about it, but am bumping for you in the hope that someone who does will see your thread.

Flossish Sat 14-Feb-15 13:00:41

Thank you so much, chuzzle smile

pudseypie Sat 14-Feb-15 17:39:00

There's a brilliant small charity called Breakaway which supports families with bowel and bladder problems and diversions. I belong to it as ds has bowel disease. It's on Facebook so you can apply to join it, it's a closed group but once you are in its a fantastic support group. good luck x

Flossish Mon 16-Feb-15 23:22:33

Thank you so much for that pudsey, I'll have a look. Thank you.

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