Hi

Hope everyone is well and had a good summer?

Ben has had a few urine infections this summer and as for the past 3 years his urine output is irregular. On one occasion I had to call an ambulance because he was in such severe pain and I couldn't get him in his chair to travel in our van.

He is waiting now for kidney ultrasound, cystoscopy and urodynamics.  I know other families have mentioned urine problems and wonder what experiences other older children have?  Ben is 7 and 3/4

I suspect Ben may end up with a catheter which is fine if it solves the problem, I wonder what experieces you may have had with using them please and any recommendations?

Best wishes to all

Sally & Ben x

helllo sally

my kids havent had any problems with urine but the doctor did stop his diamox because it does cause kidney problems and kidney stones i dont know if he might have kidney stones and is making him not urine as much and i know it is very painful because i have had them and it causes urine problems and urine infections just didnt know if in the UK you know of diamox i hope this helps you out a little bit

good luck  feel better ben!

Gershie hasn't had any UTI's, but will go hours with a dry diaper, sometimes even overnight, even though he feeds 2-3 cans overnight, or 8 or so after his am change, and than be sopped. I think his being on Baclofen is what has been helping him not to have infections. It is often used for older people with retention problems as it relaxes the bladder, just like it does his other muscles, which is why he has been on it for almost 16 years. I would not take the idea of a catheter lightly, as it will not stop infections and would need lots of care to avoid infections. I hope they find a cause that can treat him and not need a catheter. Good Luck!

Debby

Gershie's mom,

Hi

Thanks for your replies.  Ben is on Baclofen 5mls 4 x daily and Doxazosin, the first one to relax his muscles and the second to relax his bladder. He has had unusual irregular dry nappies for about 3 years but recently has been running into infections.  Woudl be happy to avoid catheter if there's a way to.

Best wishes

Sally

paul is the same he always had an empty diaper at night and wakes up dry also paul and harleeGrace are on baclofen paul is on 1 ml 2X a day and harleeGrace is on .05ML at night just  for there tone because it seems at night they are more tight than during the day the only time during the day they get tight is when they are overly excited playing during play times or if they get scared or upset