Hello,
Please forgive me I have just joined, I'm looking for advice or trying to find a support group or any parent with significant more knowledge than I.
My son has only just turned 1 and three months ago was diagnosed with a condition call PUV and VUR. ( I've never heard of it, it's quite rare and effects 1 in 8000 boys ) He became very unwell at 4 months old in the height of the pandemic and fitted at home. After a rush to A&E and a week in hospital, it revealed he had a serious UTI, scans and tests revealed he had one tiny kidney which was scarred and the other was giant.. Many months and tests of MCUG's and DMSA's and ultra sounds and scans down the line we're now under Great Ormond street. He's on medication and sadly in August at 10 months old they had to operate and remove the smaller kidney due to poor functioning due to reflux which is the VUR condition. The other kidney has a reflux bug was compensating for it. He then had a cystoscopy which confirmed PUV. They're still unable to fix the VUR issue on the remaining kidney which is a reflux issue where the urine goes back into it. ( again can cause kidney fallout) As sadly with only one kidney left, it's too dangerous. He has a second cystoscopy procedure soon and we've been assigned to the PUV clinic at GOSH, I've read so much my head is spinning and I'm worried for his future with bladder damage etc.
We've had several more stints in hospital as despite medication he is very prone to infection which again is dangerous.
Please if any parent can understand this experience of can share information I'd be most grateful, I've tried joining a Facebook group for help, but request hasn't been accepted, possibly as may not be a UK support group.. any help, advice guidance I'd be most grateful.. best wishes x