Holding bowels in Aspergers children.

[qwerty]

My 7 year old boy with Aspergers is refusing to use the toilet for his BMs. Ever since he was a toddler he has not had a regular consistency poo, it has always been, as my husband affectionately calls them, sheep droppings. Even though both my sons would eat pretty much same food, my oldest always had the pellets.

 

Last summer my son started holding his poo, claiming it hurt to go on the toilet. We were prescribed Lactulose and senokot (35+ml & 10 ml a day), but they did't help him. While we waited and waited (and waited and waited and waited) to see the "bottom specialist" at the hospital, my son got so bad that he stopped using the toilet for BMs completely and would only go in the nappy.

It has been 8 months now and we still haven't been able to convince him to use the toilet. My son is on Movicol now and has a clearout pretty much every 1 or 2 days.

The "bottom specialist" from the hospital told me we should be getting free nappies for our son, but the kind ladies from the continence team didn't seem too eager to help us with the "products" as they called them. They kept working out a schedule for my son to follow, but my son absolutely refuses to sit on the toilet once he starts feeling that the poo is imminent. They gave him bubbles to blow, he didn't like the bubbles popping in his eyes. They advised to use a bench to move his feet up, but that made his thighs hurt against the toilet seat. I have not contacted them and they have not contacted me for some months now.

 

Is anyone here having similar problems? Has anyones child with Aspergers reverted in his (or hers) toileting skills in this same way or have you had a positive outcome?

Edited February 13, 2010 by qwerty

[trekster]

i found only gluten free living sorted out my bowel problems which were also painful.

[coolblue]

A sincere welcome this time, qwerty

 

Does your son have issues with balance? (Persistently twizzles, hangs upside down, unsteady on his feet etc.) My son refused to sit on the toilet and used his nappy for years and I think part of the problem was that he found sitting over a big gap very unnerving. He used to have to sit on the seat very, very gingerly, constantly checking behind him.

 

In the end we bribed him because he loves coins. A penny for every time he sat on the loo. We lengthened the time he was expected to sit in order to get the reward and after about a month... He was seven at the time.

 

Having said that, he does have dietary issues I'm sure. We haven't yet tried a GF/CF diet, but have found making sure he has one daily high fibre item, effective for the 'sheep droppings' problem. Wholegrain cereal bars, brown rice, organic fruit with skins on (this was a big problem because he struggled to eat the skin on fruit), prunes and the F-plan 'fibre-filler' - which he loves - have worked. Although you need to have plenty of water with the high-fibre cereal.

 

cb

[sesley]

oh toliet troubles and consitpation as well because of his fussy and very limited diet. He would not use school toilets up until last year and he is in P6 now. He does now. He somehow got it into his head he was not allowed.Don't know where that came from. Now the poo or brown smell as he calls it, he gets so into whatever he is doing,he ignores his body telling him to go to the toilet,so we get dirty pants, with motivation he does try and make the effort ,then he goes back to his usual self and forgets. He is on movical 3 times a week,while he goes regular and i get him drinking orange juice to help. My nurse said to get him to drink plenty as that keeps him regular, Its a on going battle while his diet is poor and i ahve to hide veggies in his meals ot hopefully help him.I also stopped dairy milk and use soya,it does seem to make a difference, he has some vanilla ice cream when we were out lst October and he had constipation troubles back,so maybe he is sensitive to the dairy content. My P sqauts on the toilet he won't sit properly so his weight breaks the toilet seat,his solution is to put the seat up and sqaut on the solid rim We tried blowing balloons and he won't do that.

[coolblue]

... My P sqauts on the toilet he won't sit properly so his weight breaks the toilet seat,his solution is to put the seat up and sqaut on the solid rim .....

 

 

My stepson used to do that - until he fell in!

 

 

cb

[sesley]

poor soul i had another dirty pants tonight,he just does not want to stop what he is doing to go and answere the call of nature.

[trekster]

poor soul i had another dirty pants tonight,he just does not want to stop what he is doing to go and answere the call of nature.

 

He might not be aware he needs to go. i need to be reminded to use the bathroom at age 30!

[qwerty]

Thank you everyone for your replies and ideas! My son toilet trained quite late, can't remember, around 3 years old or so. His diet has been good so far, he's eaten almost everything I have given him, lentil soup, vegetables, fruit, etc. , he has always drank a lot of liquids but his poo always was a pellet consistency.

Only lately he's started to get pickywith food, and when I asked how come he always ate it in the past, he replied that it was because I kept giving it to him! Now heeven won't drink his chocolate milk, because the sediment at the bottom "makes him cough" (apparently).

We have tried the rewards with really tempting prises, but he is afraid of using the toilet, because he is convinced that if he pushes the poo on the toilet it WILL HURT, but apparently it is ok in the nappy. I cannot convince him otherwise.

[sesley]

mine person was late out of nappys too, in despair i delibrately left him in a dirty nappy for a hour listening to his protests,because he knew i would clean him up and he could continue,but making him suffer a bit i persauded him to use the toilet and got him to understand how better it is in the toilet. Even now when he has a accident he hates the mess and demands i help him. He does feel it coming,but he puts off doing anything about it until he has made himself a mess and then he says, its my bodies fault oh the joys

[lil_me]

We tried alsorts inc diet etc

 

Eventually found out he's scared of using other toilets/germs, been working on this for several years now and he's much better but he still will not use them at school/if it's dirty/strange ones. Caravanning has helped, he has to at least go once in every place we visit.

 

<'> know what it's like, we've had all the meds to try to flush when he's not gone for almost a week before. We had to stop the nappies too, which did help even if he was reluctant (just has them for bed now)

Edited February 16, 2010 by lil_me

[baranigirl]

DD1 is still 'scared' of using strange toilets and she is now 16 and definitely not on the autistic spectrum, she suffered from really bad stress enuresis aged 5 through to 13 although she was clean and dry day and night at 2½

 

I just don't 'do' toilet training here until they tell me they want to use the toilet as my experiences with DD1 put me off!

 

DD3 is still wearing night nappies and is 4 thi month, I can see her starting school in Sept and still wearing them, am not bothered if it saves me clearing up a huge wet / poo bed each morning, yes she waits for the nappy before pooing too and will wear it all night full!

[LoubyLou]

DS (10) also has problems with fear of germs, does squat with feet on toilet seat but only at home (won't sit on seat, even with foot-stool), so has accidents at school due to 'holding on'. Also we're often late for school because the urge to go comes just as we're about to leave the house. I'm quite worried about how this is going to work out at secondary school.

 

He also insists on using the moist toilet tissue, which is much easier than when he got through enormous quantities of the 'dry stuff', but both of these do make it really difficult if we're out & about.

 

GP wouldn't address the issue & sent him to the school nurse, who we have to call & ask for repeat appointments so have only seen twice over the years. Using movicol. Eating reasonably healthily.

 

It's been a problem ever since infant school did a 'germs' video lesson, a friend was also really frightened by it, but once they've seen it they can't un-see it! I've bought travel-soft-wipes & paper seat-covers but even if these could be used at school it would be yet more stuff for him to carry around - really would like someone to specifically work with him on it, will have to keep pushing along with all the other stuff (yawn!) I know there are adults who still have problems but wouldn't it be wonderful if we could 'fix' this one for them!

[kittycat71]

My DS (7) is currently on Movicol once a day to try and regulate him as he was just far too busy to sit and wait "it" out on the toilet and also has a fear of falling in the toilet!

 

The Movicol is working as he has gone from opening his bowels every 8-10 days to every 2-3 days! Would help if he ate more of anything but, that is also difficult as he is too busy and only eats for fuel and then he is off...adamant that he doesn't want/need anymore food, until about an hour or so later!

[Paula]

I could write a book to rivel war and peace on bowels and my son who is now 16.

 

He refused to do a poo on the toilet he would sit on the toilet but wouldnt go he held it in.His stomach was all boated it was horrendous.We were seeing the peadiatrican and he was put on movicol,and suppositries that contracted the bowel and cream to stop him from stopping the poo comeing out..........dont ask where wed to put the cream.

 

I remember id sit him on the toilet and hed sream the place down saying he didnt want to go sometimes hed be sat there an hour and do nothing.......hed got constant anal leakage.

 

 

We looked into his diet and cut out all the rubbishy foods and gave him a lot of wholemeal stuff and fruit at one stage but still he had this problem.

 

 

I wish i could offer a solution but we never found one...........Time........was the cure for our son.he got older hes now 16 and hes fine now in fact he goes to the toilet twice a day most days with no problems.I guess he just grew out of it maybe his bowel matured,maybe he started to reconise he needed to go well never know .Youre son might do the same.

[Chris P]

I'm sorry to read that this has become such a battleground for you: it can't be doing you, or your son, any good at all!

 

I believe there's quite a lot of evidence that autism-type conditions are often matched by bowel problems anyway. If a person is distressed by variations in routine, then an irregular bowel habit will mean that bowel movements, when they happen, can easily become one more distressing variation to be resisted!

 

When I was around your son's age I had toilet problems: looking back and analysing, I think a few things were coming together to cause this. In addition to the disruption of predictable routine, I think there was quite a lot of sensory overload stuff: disliking the 'feeling' in several different ways, not least because of a razor sharp sense of smell! Also I was certainly afraid of toilets because of their appearance and mechanics (was? if I'm totally honest with you I still am slightly!)(Mind you, if you want to see scary toilets, try a holiday in the villages of France..... ).

 

My parents played all this pretty low key, as just one more oddity I would grow out of, and I did. Of course we now know that I have Aspergers: although they are both dead, it seems likely that they both had Aspergers as well!

 

Hope this helps: stay sane!

 

 

[qwerty]

he would sit on the toilet but wouldnt go he held it in If my son agrees to sit of the toilet, that's exactly what he does, too!

 

Has anyone here managed to get nappies for their children from the incontinence teams?

[Paula]

yes i managed to get nappies for my son from the incontenance team.

 

I went via the health visitor route ........my son was four or five i forget now its so long ago..........and he still would wet and soil the bed............his reasonoing at the time was he was comfy in bed and couldnt understand why hed to get ut of bed to go to the toilet it was easiet to do it in bed hed never react or alert us to the fact and would lie in the bed all soiled till we smelt or spotted it and changed it.............thankgod this is another thing he grew out of.Anyway i couldnt get nappies to fit properly due to his size i explained this to either the health visitor or gp and they refered me to the incontance place and they issued nappies.My son is 16 now so maybe things have changed.

 

 

I tell you what helped my sons bowels flax seeds and oil in his breakfast............i also used to give him bergen bread its available in most supermarkets,its full of flax seeds and oil this would get his bowels moving just a couple of slices a day sometimes helped.My sisters little girl NT has tried this bread due to constipation and its worked wonders for her too.

 

 

Also i would sit my son on the toilet in the dark......i read somewhere that sometimes this helps something to do with reducing stimuli...........and id turn the tap on so he could hear the water running he once said at the time this calmed him.......sometimes hed sit there for an hour before hed relax enough and feel safe enough to go to the toilet.........he would say that he alwasy fealt better when hed had a poo and id say well then why dont you go more often his answer was he couldnt be bothered.............

 

Like i say try not to worry........i could have saved myself years of worry if id known hed grow out of it which he did.

Edited February 19, 2010 by Paula

[westie]

My stepson used to do that - until he fell in!

 

 

cb

 

I thought my little one was the only one who does that! He is almost 5 and he HAS to be naked and squats on toilet just like you say. He is not constipated or fearful if we let him do this so I let him get on with it (does mean he will not go outside house/ relatives house though) - is a bit of a worry about what he will do when he is bigger!

 

my older son has lots of issues around BM's, prescribed movicol, wont take it and waits days then it hurts him. He is paranoid about having a dirty bum (when he was younger his pants were soiled a lot because it used to leak out involuntary and this has affected his thoughts and behaviours. He blocks the toilet sometimes even though there is NOTHING there. It is really sad. I have no idea how to solve it. its been like that since he came out of nappies.