9 year old with high bladder pressure

[louiseclark80]

My 9 year old daughter has never been dry since potty training and after what feels like a very long process we have a very good consultant at the Evelina at St Thomas hospital. With them we have tried medication, TENs, Biofeedback and last week she had video urodynamics. The results showed that her bladder was highly pressurized and when the bladder was trying to squeeze the urine out, the valve was quite tight shut. I don't know what the next steps are yet but my was traumatized by the procedure. She got very poorly after with a UTI (she has had so many of them but this one was by far the worst) and I am wondering where we will go next with it all.

She can never empty her bladder fully hence the recurrent UTIs.

Has anyone had a similar experience and if so what happens next?

[Charlie5angel]

Hi Hun, my daughter is very similar, she had bladder retention which showed up also on video dynamics, her bladder was described to us as a rubbish emptying bladder, she was told she should try clean intermittent catheters but after 3 months of trying it wasn't working and it caused so much anxiety and trauma, they suggested she had a supra pubic catheter fitted, she has been able to empty her bladder fully with this, it's been brilliant apart from the fact she has had numerous UTIs where previously she never had one! We had it changed over for a second one last Thursday up Evelina then we see her consultant in Medway next month to see what happens next, I'm a bit nervous because I think they will get her to try the self catheters again and she isn't in the right head space at the moment which is a shame as it's the easiest solution but he may resort to surgery but it depends on what he is officially diagnoses her with as its been an ongoing investigation since 2012, best of luck to you xxx

[louiseclark80 in reply to Charlie5angel]

Hello lovely,

Thank you for your reply. Bless you. Your poor daughter. After the urodynamics last week if I even mention the word catheter my daughter runs a million miles. She found the whole procedure quite traumatizing. I really hope we don't have to do anything like that again but will obviously follow their expertise. I'll google the difference between the clean intermittent and the supra pubic as I haven't heard of these before. We are going back to the Evelina in a couple of weeks so will hopefully have a clearer idea of where we are going next. Like you, this has been ongoing since about 2012 also so it is a long process.

Good luck to you and your daughter too.

Louise xxx

[Juel1]

Hi Louise

yes I have a 11 year old daughter with similar problems.

If you do have to go down the line of catheters. I have a daughter who also can't empty her bladder and she has to use clean intermittent catheterisation.

She hated it at first she cried, I cried, she was scared but also she was very determined to get better.

She's been doing it now since she was 7 . She uses speedicath size 8 to start now using 10 but they are little and short in length.I can honestly say she does it easy as having a wee with no pain at all. 5 to 6 times a day.The only fuss she makes is because she is to busy doing fun stuff. (However if she has UTI it is really painfull)

Hope it doesn't come to this but if it does I hope this information is helpfull and encouraging.

My daughter found the urodynamics really distressing and painfull also and that was after learning to catheterise before hand so I hope this won't put her off as it is a very long tube they use and the speedi caths are very short

Good luck next week x

[louiseclark80 in reply to Juel1]

Thank you for your message. I didn't realize there were really small ones and I am glad they are smaller than the ones for Urodynamics. They told me it was the smallest one they have and I swear it looked huge. Thanks for putting my mind at ease. At least I can know maybe what to expect.

Bless your daughter having to go through that at such a young age.

Thank you again for your support.

Louise x