Help, advice, support

[BellaBoo99]

Hi there, we are new to the site. I have a 12 year old son who is still not dry at night. We sought Drs advice years ago and was prescribed desmopressin nasal spray for years followed by the syrup followed by the tabs, we then tried an alarm. We have seen the local nursing enuresis team who sadly said there’s nothing more they can do. We have seen a consultant who prescribed movicol as a magical cure but we are still not seeing an improvement. It’s got to the point where it’s now holding my son back from participating in certain things such as school trips and his peers are beginning to notice him frequently going to the toilet and his refusal of school trips. Tonight he is very upset as he been given the opportunity to go on a residential trip and he feels he can’t go. Desmo doesn’t seem to work for him and continence pants (I buy the boots ladies size small occasionally if we are staying over somewhere) will show through his pyjamas.

Any help or advice would be so greatly appreciated here. If anyone can recommend some continence washable pants which aren’t too bulky this would also be greatly appreciated too.

[Lmd12]

Have you not been referred to a specialist doctor.thats terrible they said there is nothing more they can do look up the nice guidelines that they should be following you can find on google.does your son have issues with. Bowels or just bladder?bug hugs you will get good advice on here x

[BellaBoo99 in reply to Lmd12]

Thank you so much for your reply.

It’s just his bladder. We were prescribed movicol as the consultant said that he must be constipated and that as soon as he was pooing frequently his nighttime wetting would stop and discharged us. We have also been told that if he is not dry when his next surge of hormones kick in then he may not ever be dry.

We have waited for the hormones but they don’t seem to be coming (how do we recognise them other than a dry bed)?

It’s got to the point now where it’s really effecting him and his willingness to be away from home or participate in school trips which isn’t great for him.

[Lmd12 in reply to BellaBoo99]

Did you notice an improvement with the bladder when taking the movicol?or do you not think it is linked to bowels?i guess he has a scan on his bladder and kidneys as well?

[BellaBoo99 in reply to Lmd12]

Yes we had a scan and he had to wee in a jug and then wee again ten minutes later and the consultant said he needed to try to squeeze out more wee at the end of each toilet visit if that makes sense?

If I’m honest the movicol just seemed to give him very soft poops and not much difference noticed in the nighttime wetting. He’s very conscious of the need to toilet at high school also (we’ve all been there) so hates using the movicol.

The movicol and the water intake seems to have left him now very deflated in confidence (if that’s the right word).

[Lmd12]

My son is 13 he is a withholder from starting secondary school.this is our 2nd year struggling.my son only had a problem with his bowel to start with now he is wetting but mainly in the day.he is taking oxybutinin to stop his bladder being so twitchy.we have just increased the dose.going to school.i know my consultant is following the guidelines,they have to do lest evasive first and then when no luck will look into other help.i will look at incontinence ones .havevyou spoke to someone at ERIC they may be able to advise x

[BellaBoo99 in reply to Lmd12]

I will be completely honest and admit that up until this point we have only really spoken to GPS nurses and the consultant.

It has been quite a lonely journey and I’m amazed to find that there is a whole online community. I have only very recently stumbled across ERIC when googling waterproof sheets.

[Lmd12]

I meant to say going to school has been the issue for my son he hates the toilets .i sent him on a school trip to Germany he survived with no boys noticing I had a case of pooey pants. I was worried the whole time but did not want him to miss out.the schjool teachers were made aware and were there to support.my eldest was a bed wetter and he did grow out of it by 11.just happened on its own.the continence nurse should be able to provide you with a good continence pad for overnight .its so frustrating when you never get the help but have to fight for everything x

[BellaBoo99 in reply to Lmd12]

Thank you - its been a lonely journey so it is so good to receive a reply from another parent who is experiencing the same.