Hi! I'm new here. I've joined this forum as I am really hoping to find either someone who has a similar story or even to get some advise for what I can do to help my son. Sorry if this is long winded but it 6 years of story.
He's 12 and half yrs and never been dry at night. No day time wetting since a toddler (can't remember exactly when but it wasn't late), and he doesn't seem to have poo problems. No other medical problems other than Asthma.
He's been under the local continence nurses for 6 years but he is still no better now after all this time. We've tried everything out there - lifting & waking (he's too old to be lifted now), alarm clocks, bed and pant alarms, nappy type pants, we let him just wet to see if he wakes up himself, then we've tried all the medication available - Desmopressin, Oxybutin and Toltrodene (excuse the spelling). Nothing worked. AT ALL!
We were finally referred to the local hospital continence service recently, but the consultant refused to see him as he didn't deal in paediatrics, so we were seen by paediatric outpatients instead. Dr wasn't a specialist in this area so had nothing to say other than the usual I have heard for the last 6 years - "he should grow out of it". Needless to say, both me and son were pretty disappointed and just rolled our eyes at Dr! LOL! He's been given Desmoressin tablets 200mg again, but as you can guess - it's not working. We can up the dosage to 400mg in couple of weeks but I won't hold my breath.
He hasn't had many tests done - 2 urine tests and a ultra-sound on his bladder to check if he was fully emptying when going to urinate. All tests came back ok. No further tests in the last 4 years though.
I'm now at the end of the line for his treatment and don't know where to turn for help. We (son and I) are completely fed up. Son has no faith in the medical community because they just keep telling him this is normal, but they can't help him. I am fed up of washing bed sheets 1-2 times a day (the cost for washing liquid, electric and water is ridiculous), and winter is approaching so the opportunity to dry the sheets quickly is fading (I have 3 sets btw) - I work full time too so you can imagine!
So where do we go from here? What can we do? If this is such a common problem, why isn't there further help? I've researched the Internet and haven't found anything - but surely this can't be right can it? I mean, we don't even know what is the root of the problem, we just keep being told he'll grow out of it. Yeah - he's 12 and he is wet EVERY NIGHT. Not growing out of it then...
Can anyone help or have a similar story?