ASD and bowel problems / soiling.

[Rosietheriveter28]

Hi there

Was wondering if anyone else has experienced something similar with their AS children?
My DS is about to turn 12 and start Secondary but really for as long as I can remember, he's always had problems with toileting. He essentially (I think) holds off going for so long he becomes constipated / has bouts of diarrohea on a very regular basis. When he was younger it was that he seemed to not want to stop playing etc, whereas now he will only really go at home or at his grandparents - which means he never goes at school / at a friends house.

To be honest, even the above is a stab in the dark (apart from not going at random places) We've checked him out for any medical reasons why this might be happening and he eats a very good balanced diet with plenty of fluids.

We keep having to resort to long term doses of Movicol to try to help him out (which always does) but I really don't want us to depend on this. It seems like it's a psychological thing. If left to his own devices, he would strip naked and spent 30 - 45 minutes on the loo daydreaming and I wonder if its all because he's not able to do this in public places that means he wont go. Not that I encourage this at home I should add - but he definitely needs chasing every time.

He ends up soiling himself a great deal when not on the laxatives and of course, going into secondary school, I am extremely worried about how this will play out.

Has anyone had anything similar?

[dolfrog]

You may find this article of some interest
A Gut Feeling for Immune Dysregulation & Neuroinflammation in Autism

[EllenJaneisnotmyname]

Sorry, Rosie. No advice, just sympathy. DS2, 11, ASD just started at MS secondary yesterday, still soiling. Usually when he's absorbed in a computer game but not regular enough to help. Also, it's only a small amount which I smell and then send him to the loo. It's been like this forever it seems.

[IndigoBell]

Have you read the GAPS diet??

It's very interesting. It's a diet designed to improve bowel problems for kids with ASD etc.....

[intothewest]

Sorry ROSIE,just another one with similar problems(but younger DS) -We have just given up on the movicol again as it seems to make things a lot worse(which I anticipated)...but never any better.
I would be interested in any special diets,but GAPS is rather 'meaty' ? and we're veggies

[madwomanintheattic]

yy. not necessarily as/asd but 'quirky' - currently calling it inattentive add (with maybe a touch of H), generalised anxiety/ poss phobias and the continence. ds1 is ten in jan.

have you read up on encopresis etc? tried social stories such as 'sneaky poo' etc?

our current plan (as of today actually, new paed ) is three days of 3 enemas, a month of lansoyl, and a six times a day toileting routine which he must adhere to. review in a month (having kept diary etc)

i'm on the GAPS support thread that's just started as he seems to be a prime candidate really. but not going for it 100% until this month is out of the way. adding in good stuff though! easier for us as not vege (although he does have some self imposed food restrictions which sometimes feel a bit like that!)

if it helps, ds1 came home from cub camp with an entire bag full of soiled pants and faeces as he didn't use the toilets whilst he was there. he won't use public washrroms of any sort. goodness knows how this month is going to go (he has to sit down and use the washroom at school three times a day) - we're giving it a go.

it's nightmare though. i sympathise x

[Rosietheriveter28]

Toileting routines have worked for us in the past at home, however, it all just gets ignored and forgotten whilst at school. The movicol at least is very easy to manage and he really benefits from it. He's a different child this week to the one last week when he wasn't on it.

I have to be honest that I am not keen at all to start playing about with his diet. He eats really healthily and putting him on diets would make him really, really unhappy and probably batter his self esteem even more.

Good to know its not just us though. Thanks all.

[Ilovetoread]

There is a good website ERIC (www.eric.org.uk/)that might have some stuff to help. Good luck

[madwomanintheattic]

yy. eric are reasonably good. they have no idea regards ds1 though. even the forum was naff all help.

[Claw3]

Ds who is 7 years old has had problems ever since he come out of nappies. At first it appeared he had limited sensation around going and he told me he didnt realise he needed to go until 'it pops out' he would then run to the toilet to finish it off. leaving a mess in his trousers. This would happen at home and school.

He moved schools a year ago and he hasnt soiled himself in school, but he tells me he has never used the toilet in school.

So it now appears that he is holding onto it until he gets home and this is what is causing him to soil himself at home. However if he had limited sensation im not sure if he would be able to 'hold onto it'.

Paed thought he was constipated (although it is always quite runny) apparently this is a sign of constipation, not going for days, then quite runny. Motivol didnt help, just made him soil more often.

Nurse told me to sit him on the toilet at regular intervals, bit like toilet training again, this didnt work either.

Not much help, as i havent had any success, but might be something in there for you to try.

[dolfrog]

A few research paper collections which may or may not help explain some of the issues.
A collection papers that cover a wide range of gastrointestinal disorders issues
Joint Hypermobility Syndrome
CiteULike Group: Autism - library 208 articles
and
CiteULike Attention Deficit Hyperactivity Disorder (ADHD) - library 95 articles

[Claw3]

Thats interesting Dolfrog, the one that jumped out at me immediately was joint hympermobility, which ds has. Will have a read, thanks.

[madwomanintheattic]

claw, sometimes it's the witholding that causes the lack of sensation - as the rectum gets stretched and the nerve endings lose sensitivity. paed told us that for this sort of thing, the proper sensation and 'messages' to the brain might take 6mos to reconnect after the behaviour (witholding) stops. as the pathways mend etc... no idea if that helps or not.

[Claw3]

Madwoman, thanks always interested in trying to make sense of it all. I was thinking that he wouldnt be able to withold, if he had limited sensation, as before he would soil because he didnt know he needed to go. So how would he withold if he didnt realise he needed to go, if that makes any sense!!