I don't know where to put this, My Ds1 still has no bowel control, he is 10 and has cerebral palsy

[SparklyGothKat]

he is in year 6 now, and I am so worried about it. He has always struggled and never been clean since he was toliet-trained at 4. Everyday we have at least one accident and believe me, its not very nice (the smell I mean) He cries when it happens, even though we just lift into the shower and clean him up.
My washing machine is going to give up the ghost soon, the amount of clothes I have to wash.
Anyway he had a x-ray a few years back to check for blockages etc, but that came back clear. Consultant thinks he has problems with his nerves there and doesn't feel it until its too late.
he is in mainstream school and I don't want him bullied because he smells (I know its not nice but its not his fault) How can I help him??

[chipmonkey]

Sorry SGK, no answers but wanted to bump for you. Can he tell you when he has just gone?

[FanjolinaJolly]

Poor boy

That is very hard for him especially if there is nerve damage and he doesn't get the sensation of needing the toilet.IYSWIM.Does he have a support worker of any kind when he is at school (Sorry,i have no idea of the type of CP he has)If so do they help him with toileting ta the moment?

Have you tried posting on SN?

[Loshad]

your poor ds ((())) for him

[SparklyGothKat]

No he has no support in school, as he is very very bright! and has no learning problems. I try to make sure he doesn't smell and give him clean clothes all the time

[1dilemma]

I'm not sure I have anything hugely helpful to say sorry
When did you last see a specialist? was it a specialist or just another Doc?
I wonder whether a continence advisor might be able to help?
(Havn't a clue how to get hold of one sorry)
Is there anything diet wise that might help?

Poor ds

[SparklyGothKat]

we saw his consultant, who specialises in cerebral palsy. I am going to have to phone her this week and ask for her to see him again. Its been a while since we saw her last,

[FanjolinaJolly]

When I mean support,I guess I meant for help with his physical needs,not with regard to his intellectual capacity Sorry if that came out wrong!I know a person with diplegia who has a peron who accompanies them at school for some of the physical assistance though their intellectual capacity is fantastic.i wondered if a similar thing was in place for your ds.What about a continence advisor,or paed nurses,do they have any tips/ideas??Hugs to ds

(I shudder at the thought of potty training dd.She DOES have an intellectual learning delay.I see us still in the nappy stage when she is 21 EEK !!!!)

[SparklyGothKat]

not support at all!! He is on SA+ mainly for his writing (he struggles with that) but no support. I am going to have to talk to the consultant and school. I just wish he could stop it, and then he won't get upset..

[SparklyGothKat]

err yes I think so KM I did think about it myself tho..

[FanjolinaJolly]

.I wonder if a continence advisor would be of any help.Does your ds attend the paediatric ward at all?It might be worth seeing if you could access t he continence service.You may even be able to get a referral through your GP you never know.They may have some ideas.My dp has continence problems (Yep my family are falling to bits!!)and gets free continence pads from them.(This is for urine not poo though,sorry no way to put it delicately!)

Is there any pattern to when he goes?Would a regular time for toileting be of any use?

pOOR DS,it must be upsetting for you both

[SparklyGothKat]

It might be that I have to remind him to go at regular times (yes?) thats how you train a LO so it might work

[BitOfFun]

I have this issue with my dd2 (7) who is autistic - I dream of the day she is toilet trained but can't see it happening. I worry about how we'll cope with periods etc too - I'm sorry I can't offer anything constructive, but if it's any consolation, you are not alone!

[FanjolinaJolly]

Its a tricky one,because if it IS nerve damage he will not get the sensation,bless him.I think the best thing would be to speak to your consultant about all this stuff like you say,and ask if they have any ideas.

I hope you get some good ideas/help soon xx

[SparklyGothKat]

thanks everyone

Bitoffun, I believe Ds1 also has AS, but the hospital refuse to look into it. My sister has worked with many kids with AS and she even believes he has AS too.

[BitOfFun]

I hope you can get a referral to have it investigated...I am no expert, but I think bowel issues may be connected to autism anyway, and sensation issues definitely are. Good luck, thinking of you x

[SparklyGothKat]

The hospital said that there was no point dxd AS because he has a Dx of CP and he gets everything anyway (DLA etc)

[BitOfFun]

Perhaps you could contact National Autistic Society (not sure what it's called) or something similar? I know you get the DLA, but the point is to get appropriate care, so someone like them should be able to back you up - don't be fobbed off, it's important to have your LO looked after properly.

[SparklyGothKat]

thanks I will do that on monday. Am off to bed now. Thanka again

[LilRedWG]

SGK - have been researching this myself this morning (for totally different reasons to you) and came accross the Anal Plug. Sorry if this is totally not appropriate for your DS or you have already considered, but might be worth you discussing with his doctors. In is on here.

[LilRedWG]

It says it is available on prescription.

[TabbedBrowser]

There is a boy in ds1 class who was liek htis btu NO cp.
i think now he takes some kidn of midecation.
i THINk they ruled out physicla probs