We have a little girl of nearly six who has suffered throughout her life with frequent invasive urine infections. She has real trouble controlling her bladder and sometimes bowel. We have been under a urology consultant for the last year, but they've not been much help and she's been passed on to an enuresis specialist but our appointment is not until late November and we have almost reached crisis point as she refuses to go to the toilet. It's a bit like having a teenager who's just stroppy and moody a lot of the time.
I really think she may have some sort of internal problem as she has only once ever asked to go to the toilet. We have worked with a very supportive community nurse over the last few months, but even she is now beginning to think something may be wrong. She doesn't believe the problem is psychological and she like me thinks that DD doesn't know when she is weeing.
Does anyone else have any similar experiences or any advice? I'm really stuck at the minute and have a bit come to the end of my game plan! I just want to be able to support her, make her comfortable and less aware that she is different, especially as she is moving up to year one in September.
Have they suggested that she goes on antibiotics all the time as a preventative? a low dose can be prescribed as a prophylactic against the most common infections. Ds used to take it as he had bladder stones which can act as a "seat" of infection.
Thanks everyone for your kind and supportive words. She was on a constant dose of Trimethoprim, but they took her off it a while back. She's had the tests for reflux and they said it wasn't that. She's had dye in her kidneys etc etc, although last year, at the age of three they mostly thought that she was too young to comply with the tests. She was asked to wee on demand which is the one thing she can't do.
She is clearly in a lot of discomfort, although she is now on a strong weeks course of antibiotic (given by my other daughter's epilepsy consultant, because my surgery said there was no evidence of bacteria in her urine!!!) Thank goodness for his support. She has also been put back on Movicol, but now as an older child, she detects it and is refusing to have it. Its a catch 22 situation.
Today, we were supposed to be going to her friends birthday party and instead she is curled up on the sofa in her PJ's with a blanket on. I just feel so sorry for her. She said she didn't need a wee this morning then got in the bath and promptly did a massive wee. There's obviously something not right.
Thanks for all your help though, especially Jilly. Thanks for sharing those things. I totally understand how you must have felt and I'll try and PM you back