Soiling issues (again)...any ideas?

[RockinSockBunnies]

So, DSS (eight in a week, diagnosed with ASD and in process of being statemented) has begun to soil himself again.

Some background - soiling issues have been ongoing on and off for a few years. I've been with DP for a year now and DP has shared custody of DSS with his ex. DSS is at a mainstream school (though having lots of problems and school and parents are pushing for a 1-to-1 statement at the moment and trying to put in place strategies in the meantime to help DSS).

Anyway, soiling has started again. DSS says that he doesn't know that he needs to go to the loo and that it suddenly comes out. I can't quite fathom exactly how he doesn't realise, given that he doesn't have diarrhea although does have fairly soft stools (he eats lots of fruit and muesli etc, and has phobias about eating anything that isn't 'healthy'). He is soiling himself at school, at home, and basically just puts his clothes in the laundry , covered in poo, leaves a trail of poo-strewn tissues in bathroom and loo, then calmly sticks on another pair of trousers (without cleaning himself up), then tells someone (his father, au pair) that he's had an accident.

He doesn't seem massively concerned about the issue - he is embarrassed to a degree, but also quite matter of fact. He doesn't seem to notice the smell or the fact that children in his class obviously react.

We're fairly sure that the soiling is related to anxiety - he is worrying at the moment about sharing time between two homes (and it's quite obvious that he's paraphrasing a lot of negative stuff coming from his mother). He is coming up with some bizarre reasons as to why the soiling is happening - "I ate fibre two weeks ago", "the commute to school is causing it" (half hour bus journey). We're trying to deal with the anxiety, reassure him, get books on how the body works etc.

In terms of actually dealing with the soiling though, any ideas? Our amazing au pair (special needs experience) is trying a strategy of having DSS sit for ten minutes on the loo after each meal (with books), praising him for sitting (whether there's a result or not), doing a star chart for each day that he doesn't soil himself, but all in a fairly low-key manner.

I've ordered some books from Amazon too on the subject. But does anyone have any experience of this? Also, DSS's school isn't especially helpful - if he soils himself at school, they aren't allowed to clean him up (apparently owing to health and safety) - they give him spare trousers but let him get on with things (so he doesn't clean himself up properly, smells and gets further ostracised by other children).

Any advice?

[chocolatespread]

I don't really know how to address the soiling (wish I did!!!), but I do think that the way the school handles it seriously needs to be addressed. My five year old frequently soils, and they have to clean him up at school, they simply couldn't not. I really, really would talk to the school about it until some idea is reached, because their not handling of it is going to have serious social effects on DSS, as you say. Sorry, I know that's not incredibly helpful. Hope you get somewhere with that.

[niminypiminy]

I wish I knew how to deal with soiling as we have this problem too. But here goes with some coping strategies that work for us.

Have a bag with a few pairs of extra trousers, clean pants, carrier bags (to put dirties in), and baby wipes/moist toilet tissue at school in a place that he knows where it is. The baby wipes etc are key because it is much easier for a child with proprioceptive problems (all that reaching around the back) and/or fingers that won't do what you want to use, and much more effective at cleaning off poo than toilet paper.

Have baby wipes etc next to the toilet for the same purpose, and a bin to put them in.

We treat pants as disposable (not very green but hey). We keep carrier backs in the bathroom so pants can be put straight in a bag and then into the dustbin.

We have had some success with a social story about 'why don't people like it when I smell?' as I realised ds1 had no idea that other people could smell him and couldn't imagine why they would find that unpleasant. Explaining this in a calm and rational 'this is something you might find interesting' way has helped get his co-operation.

Sitting him on the toilet at set times is a good idea. We also bought a fantastic book called 'Beating Sneaky' from Eric which was very helpful and informative. It gives you a code name for use in public (is sneaky coming?) and makes it the poo's fault, not the child's.

Hope that helps

[niminypiminy]

sorry apologise for spelling -- carrier bags I meant!

[IDontLikeDisciples]

Have you asked to be referred to a continence nurse?

DS has issues, mainly with wetting himself and witholding poos when he is anxious or has a change of routine etc which leads to awful constipation.

As it is very early days into your diagnosis too can I suggest if you haven't you contact your local NAS branch? I could not have survived without them, they are wonderful and have helped with so many issues, practical, emotional etc.

[RockinSockBunnies]

Thank you for feedback! Have just been downloading things on the ERIC site which is helpful.

Babywipes and wetwipes haven't really helped - we have them by the loo but DSS really can't wipe himself very well and won't remember to use them anyway.

I'm interested to know whether there's any chance that the problem is purely physical (though I have a feeling it's not). Is there any way that can be determined whether DSS has any faecal impaction or bowel issues? Given the fact that when he does soil, he really does poo a lot, it seems unlikely that there are any constipation issues. From what he says (though it's odd to me), it's a kind of 'urge' incontinence - he literally is pooing himself within a second of realising he needs to go. Again, I'm not sure how accurate he is in telling us this, because he often says things that aren't quite true. Furthermore, most people seem to be able to hold on to their poo for ages and ages if necessary. I could understand if he wet himself if he got desperate, but people don't tend to get desperate in the same way for a poo.

I'm not sure what's happening in terms of a continence nurse/plan of action. I think there were strategies in the past used to try and deal with the issue, and he did stop soiling for around six months, but has started again.

[auntevil]

My NT DS describes soiling in a very similar way. He doesn't wet himself, he does poo on the toilet - but then still soils. He acknowledges that some of it comes out when he passes wind.
Impaction can be felt by a dr through simply feeling the bowel area. Most poo that leaks around an impaction is loose. Bowel issues would need to be diagnosed by a paediatric gastroenterologist
There are many medical conditions that could be causing him not to notice the signs quickly enough to be able to stop it. He could have had an impaction and the bowel is stretched so now it just falls out rather than builds up. The nerves get damaged so the build up sensation isn't recognised. Poor muscle control etc etc.
My DS has dairy intolerance and IBS. He is on a non irritating diet. We still find that 1 day he can eat a meal and it is through him in 20 minutes, another day is fine.
A strict regime for toileting is best. Half an hour after each meal is a good time difference. We also do a family queue when we go out. Everyone has to go...when they get up, before they go out, when they come in, before a bath, before bed - add the after meals. It all adds up!
We were also recommended that the reward from the star chart was 1-1 time with an adult of his choice doing an activity of choice. I.E - he sets the reward and gets to manipulate an adult!
Re school. If it is a medical need, the school hasn't a leg to stand on. My DS is on a scheduled toilet run. Although i don't think they wipe when he goes voluntarily, they do clean him when he has soiled - and remind him to wipe if he's been.
I'm with Nim - i use pants as disposables too. Some do manage to be cleaned - but some are past saving!

[RockinSockBunnies]

In terms of testing for food intolerances/IBS, how did you get a diagnosis? I wouldn't be suprised if DSS had some form of food intolerance.

[auntevil]

All 3 of mine have been tested in different ways - i think it is an age thing, or a dr preference thing. My 8 year old has had blood tests and hydrogen breath tests. My soiling 5 year old has had a colonoscopy, endoscopy, stool and bloods and rectal exam. My 3 year old has had a fluoroscopy and ph challenge and bloods.
During the colon/endo and fluoroscopies they take biopsies to test.
There are only certain intolerances/allergies that show up in blood.
Stool samples can also be tested for parasites, mucus and all sorts - dairy intolerance is often first shown in this.
IBS is a coverall diagnosis. Its a bit like developmental delay! If there is no immediate diagnosis, and investigations are ongoing, and they believe that there is something physically affecting the DC then it is a good all round term!
Just remember that you shouldn't remove any item from their diet if you are going to be tested as this will affect the result.
Soiling DS had 4 day old undigested food in his upper stomach during his endoscopy. Urrrgghh!

[IDontLikeDisciples]

With intolerance testing/ incontinence clinic, pretty much anything you really have to push or it. I learnt this after expecting to be reerred and hearing nothing, they re so overstretched you need to keep pushing and pushing.

Do you have a SN health visitor?