fragile x syndrome

[stephanielittl7]

is there anyone out there with a young adult with fragile x? would love some advice on how to deal with his bedwetting please! [ not pads weve been down that route and it doesent work!] is there anything else i can do? thanx

What sort of help are you looking for Stephanie?

I thought someone should try to reply but my son has ASD and LD ( not FX) and we struggle with primary eneuresis too. Ds will not usually wear pads, so we do a lot of washing. Life got a little easier when I bought a waterproof duvet, and this may seem mean but I no longer put a cover on it - just wipe it down each morning after turning it in the night if needed. Ds wears comfy PJS to keep the duvet surface away from him and can change those himself when needed, but I have to change the lower sheet and bed pad. I use washable bed pads, under the sheet with a well protected mattress. I do believe OT and continance services should be able to help with waterproof bedding although often will class learning disabled children and youngsters as not eligable until adults.
I would love my son to be dry so after trying all the medical options ( desmopressin, oxybutanin, alarms etc) we have started retained primative reflex therapy - a type of OT. Its very expensive but I can only hope!! I do understand it may not work.