Question for Cory - hypermobility and incontinence...

[asteamedpoater]

Hi, Cory,

You've said before that your daughter, who has hypermobility syndrome, suffers from incontinence, so was wondering if you could give me some advice??? My son also has hypermobility syndrome/EDS hypermobility type and since potty training has always tended to get damp patches in his pants (not enough to wet his trousers) during the day if left to his own devices in terms of deciding when to go to the toilet. He just doesn't seem to have much/any sensitivity as to when his bladder is getting full and seems also to have a bit of pelvic floor weakness, as he can consciously hold on when he realises he needs to go, but still little drips will leak out (a bit like an old lady with stress incontinence!). I have until now been assuming/hoping that this will resolve as he gets older, but he is now approaching 5 and it is getting worse - he now wets the bed (or at least, his nappy, now...) twice a night, whereas a year ago, his bladder could hold on all night (despite the fact that I'm quite sure he would never have woken up if his bladder had got full in the night). He has no problems with his bowel, fortunately, and has a very healthy diet and drinks plenty during the day. Could his problems be linked with the hypermobility, or is it more likely unrelated? There just doesn't seem to be much information out there on hypermobility and incontinence issues and anything there is relates more to the bowel than the bladder. I would be extremely grateful for any wisdom that you could impart!

I imagine it could be linked, though know very little about incontinence in boys.

If he were a little older, I'd get your GP to refer him to a urologist, but they may not want to see such a young child (bedwetting is, I believe, considered fairly normal in boys until age 6 or 7). But you can always ask your GP and see what he says.

Dd did end up on medication for a bit and is now a lot better (only minor leaks and rarely).

I didn't know there was a link but ds1 used to frequently have accidents - both ends. They've becaome less frequent now, but still occassionally.

I wonder if it is all linked to pelvic activity? ds1's pelvis tilts completley the wrong way which might explain pressure on the bladder. I'm only guessing though...

Thanks, cory. And thanks, ChopsTheDuck. How old is your ds, now, Chops, and at what age did the problem start diminishing for him? And have you had any professional guidance for your son's bladder problems? If so, did it go any further than reassurance that he would probably grow out of it? It's just that I'm not sure whether I should be doing something or not: I had assumed it would just get better over time, but because it appears to be getting worse at the moment, day and night (during the day probably only because I'm trying to get him to drink a lot more in the early part of the day, resulting in the damp patches getting bigger), I'm beginning to panic that it will start to be noticeable at school.

ds1 is 6, now in year 2. He hadn't completely grown out of it at school, he was still having quite a few accidents throughout reception. It started getting less in year 1, and I think this year we've only had about 3 accidents, so a lot better.

TBH he has always been delayed with everything, and has dyspraxia and social and communication difficulties as well as hypermobility so I jsut accepted it really and not made a big issue out of it. His were worsened with stress. One holiday when he was about 5 i think, he jsut didn't settle and was having accidents everywhere, both ends.

Is your ds stressed by anythign at the moment? Any big changes going on?

Hi, ChopsTheDuck. No stresses in my ds's life at the moment - he seems happier and more relaxed now than he's ever been. Thanks for the help, anyway - at least I know it probably will get better.

different condition for my ds, now aged 8, but he is incontinent. What can i help with?

Where are you? we see a marvellous specialist in london.

Hi, MABS,

I guess I'm really wondering how much sensation my ds has of his bladder filling up, as he never shows any signs of any discomfort, then will suddenly say he needs to go to the toilet and will have a small damp patch in his pants. I've even asked him 5 minutes before he has wet himself (and by this I do mean leaking a bit - he never loses all control, except when asleep!) whether he needs the loo, yet, or not, and he will say no, but then 5 minutes later... So I'm not entirely certain whether he is recognising the sensation of small amounts of urine leaking out and reacting to that, or whether he is actually feeling the sensation of a full bladder, but just a bit late (albeit that sometimes when he leaks, there doesn't seem to be a colossal amount of wee to come out - certainly not the amount you'd expect from someone who'd held on until breaking point). And if he doesn't really recognise the sensation of a filling bladder, then why could this be? Is it just because his developmental timetable in this respect is a bit slow, or are there physical causes for someone not to receive the signals their bladder is sending out that it is getting over full?

What is the cause of your ds's incontinence, by the way?