Drowning in an avalanche of DS's night time laundry - has anyone found a solution?

[JCHL]

Lovely DS is an older teen/young adult and profoundly disabled, including double incontinence, and I am his 24/7 carer. I have posted under a previous username about him in the past.

I have managed the continence issues ok over the years and this is still mostly the case during the daytime. I have recently started to really struggle with the night time incontinence issues and would very much welcome any advice, practical solutions or solidarity from other parents, carers or professionals with direct experience. I will limit the very personal details as far as possible and I'm not seeking any in return, for obvious reasons. When I change him, I make sure that his penis is pointing downwards and centrally and that the nappy fits snuggly around the legs and waist. Naturally as an older teen/young adult it does not stay that way during the night, and all the urine leaks over the top of the nappy. This results in the bed mat, sheet, mattress cover, pillow, pillow case, pillow protector, nightwear and DS needing to be washed most nights/mornings and sometimes more than once. Sometimes this includes his duvet and weighted blanket and their covers too. He has no understanding of any of these issues.

So far I have tried reducing his bedtime drink to half a cup, and vests with poppers and sleepsuits with the zip on the back, but it hasn't helped. I have had to increase the size of the bed mat to a double to protect the sides of the single mattress. I have also tried the next size up in nappies to make the waist a bit higher, but DS is a slim build so they moved about, swamped him and still leaked. It has got worse recently, I have run out of ideas and it's all getting a bit much.

TIA

Have you tried different brands of products, some products work better for different people? You could also try adding a pad inside the slip.

Thanks for your reply FloatingBean.

They are on prescription, good quality and absorption. The NHS doesn't give an option for the brand of nappy, just size and absorbency. It isn't an absorbency issue as often the nappy is still mostly dry whenever we have this problem except for the very top section. Most of the urine misses the nappy and leaks out over the top. I think they need to come higher up on his waist. I do buy more nappies as the NHS never prescribe enough but I am yet to find very high waisted nappies, or even ones meant for tall people - he's not tall - might help.

You can try/get different types and brands on the NHS. You won’t be offered them without pushing for them but it is possible.

Different brands can fit/move differently on different people so even though it isn’t an absorbency issue it may be worth trying. As may adding a pad inside the slip.

My son is 16 with ASD and severe learning difficulties- he went through a short phase of being dry at nights, but it didn’t last.
He tried desmomelt for a while when he was younger, and it worked, but made him very aggressive when he went through puberty, so we stopped that and were referred to the continence team
We followed all their suggestions and filled in endless charts, hit and miss, tried their pads and nappies- they didn’t stay on nor hold the amount of liquid produced in the night, and then covid hit and we had no more communication.
I received a phone call about 18months ago from my GP, who had just read a consultants report which stated DS was still wetting at night.
she suggested a trial of Solifenacin, took a few weeks to kick in, he’s still on them now- takes a tablet in the morning and accidents have reduced to 1 or 2 a month
Would this medication be an option for your son?

^^

Thank you so much to pps for your replies and bumping - much appreciated. Sod's Law isn't it that after posting we've actually had a much, much better week on the laundry front?! Apart from one night, the nappies have been able to do their job. I know it almost certainly won't last but I'll happily take any available week off how things were almost every night before I posted! It has made such a difference to how I feel and therefore to life in general this week.

I will talk to the continence service about other nappies again and also see if we can manage to keep a pad in place where it would need to be, @FloatingBean , thank you.

Was your DS already continent in the daytime, @SlipperySlope99 ? Mine is not, day or night, and I wonder if that makes a difference with the medication as it has never been offered to us. I will look into it and speak to our GP about it though, thank you.

If trying different slips/pads doesn’t work you could ask to try sheath catheters. I haven’t heard of anyone using them for the reason you mention but it’s worth trying.

@JCHL he is day time continent, but we do make sure he’s asked/told to go to the loo every few hours or he will quite happily wet himself and sit in it and then sit looking at us with the most beautiful smile 😄