bed wetting autistic 12 year old son.

annmarie67

need information and help, my 12 year old son is severely disabled and is still incontinent, he has autism, adhd, global development delay, hyper mobility with low muscle tone, chronic lung disease and anxiety, he has also suffered with pneumonia when he was younger, up until nov last year my husband was working and through his workplace we would borrow a carpet cleaning machine to clean our sons bed every day because he wets the bed on a nightly basis, we have tried everything, waterproof mattress which he ripped, waterproof covers, houdini pjs, normal pjs, boiler suits, you name it we have tried it, we have asked our sons social worker for help but have been told that it will take 6 mths for them to get OT involved, she told us to go to charities and ask for funding and if that doesn't work then she will get OT involved, in the meantime our son is sleeping in his own urine, we do not have funding to be able to go out and buy him a bed, we are washing and cleaning his bed on a daily basis but it has gotten so bad the smell of urine is all over the house, we can barely go into his room because of the smell, it makes us feel physically sick, the urine is dripping onto the floor and as many time as we try to dry the bed we are failing miserably, we feel this is a health and safety issue, the school nurse has tried to contact the social worker for weeks now to no avail, we had a meeting in the school with all professionals there and not one of them where even concerned that our son is sleeping in a pee filled wet bed, we know this is a hazard to our sons health and we are at the end of our tether, the only option open to us now is to remove his bed and mattress and let him sleep on the cold hard floor.

Sam_Alumni

Hi @annmarie67 welcome to the community, this seems like such a stressful and upsetting situation. 

What does your social worker want you to ask for funding for? 

Are you aware of ERIC, they are dedicated to the bowel and bladder health of all children and teenagers in the UK.  There is lots of information on the website and there is also a Bowel and Bladder helpline that is open: Mon-Thurs 10am-2pm, Tel: 0845 370 8008 or you can email them at helpline@eric.org.uk. 

@Kirsty_Scope or @Debbie_Scope do you have any advice? 

trudy

Your doctors should have all the contacts to who to get intouch with about this.this is not right you all having to live like this.i would try asking your doctor and tell them how distressing this is for you x

jamieknight

Hello,

I have some suggestions and experience with similar issues.

Could you email me (see contact details on my website:  http://spacedoutandsmiling.com/) so we can discuss privately as I'm not comfortable sharing on a public forum.

Jamie + Lion

Chris_Alumni

A Twitter user has commented: "@scope have they been referred to neuropathic bowel and bladder? Recommend @EvelinaLondon Dr Anne Wright."

Chris_Alumni

And another... "I cannot access answers but have they requested Desmopressin? It's invaluable in these cases? Do they have a continence nurse?"

janine76

I have 2 special bedding from the continence team and you place it over the bed sheets and when the child wets the bed it stays on this special mat. It's also washing machine friendly.  My boy is 12 this year, he always wets the bed.. I am always washing his sheets to, so I know what your going through.