Published on 12, July, 2020
Hi everyone,
I’m new here and looking for some advice - and mostly looking for support and to be seen and heard by people who understand. It’s the first time I’ve signed up to something like this, but I just get so lonely sometimes with the worry of it all. I feel like we’re on our own with this problem.
Stool withholding is such an issue right now for my 6 year old ASD son. It gets better, then it regresses. He will hold it through fear of it hurting and from not wanting to use the toilet. The fact it pulls him away from what he wants to do also contributes and he just sees passing a stool as something he hates and therefore doesn’t want to do. He holds and holds, until he’s very backed up, and then eventually, days, over a week later, after much calm gentle coaxing, lots of fluids, lots of tantrums and tears, he goes, and he’s so relieved and happy. Then it begins again. The doctor prescribed lactolose which he takes twice per day but I don’t feel it makes much difference. What works is talking to him, coaxing, support, rewards… but although it works short term, it doesn’t seem to break the back of the association. My son is very communicative and intelligent and we even talk at length about it, about how the body works, why he needs to go, but nothing has made much difference.
It disrupts his school week, and he misses out on things sometimes because he needs the toilet. He’s been referred for further help but they just seem to refer me to the ERIC website and tell me it’ll get better once the constipation is cured but I just seem to be stuck in a cycle.
I also can’t try movicol as he won’t drink anything that isn’t water, he has quite a restricted diet so fibre can be an issue too.
does anyone have any other tips? Or at least, just understand
I feel like i’m failing.
Hello, Sending lots of understanding. Our teen daughter has just successfully graduated her program. It's been a long haul - not quite as bad as your child's but it's been difficult and has involved emergency hospital visits.I've even been referred to the ERIC website at some point from here in Australia!The turning point for us was getting into a clinic at our local children's hospital. It took years of struggle to get to that point. We probably had one or two visits in the hospital before covid struck, then we went to online consults and it has been wonderful. We got this wonderful, upbeat, experienced senior nurse. My child has never liked to talk about it (can't stand talking about poo, won't communicate well about it, just says yes to everything, never even reported soiling but I had to do the washing!) but managed to 'tolerate' our lovely nurse, who has seen us through to now. My child told some whoppers to the nurse, I'm pretty sure, but I think things sunk in with her nonetheless, through repetition and me accepting that we couldn't talk about it too much, just give the reminders. I also suspect the threat of having to see a physiotherapist about how to use the toilet (not intended as a threat by the hospital, but I knew how my daughter's brain works) was what really motivated her to get it together in the end - but then she's older.So I really hope you can get into a clinic - even if you have to wait, it will get better, I promise you. There is a lot of this going on as you've undoubtedly been told. I can tell you stuff that helped with constipation but can't really help you with the issue of not wanting to use the toilet. Except maybe if you could get him to sit on the toilet (and reward him) without any condition of having to actually do anything? And you, stay strong. I know how demoralising it is. If you can't work on all the points, tackle what you can.What worked, aside from the crucial fact that we were in a clinic and had someone guiding us through - - squatty potty to help sit in the right position. Very helpful.- the chart we had to fill in (she almost never did it, I wound up having to)- timed toiling - getting her to sit on the toilet (for three to five minutes) about 20 minutes after breakfast (and possibly dinner as well) - the clinic said at least once a day was helpful. - drinking lots of water- exercise - diet (yes it's tough - try your best to find foods he likes that have fibre - our mainstays are hommus (I think the chickpeas help), carrot and broccoli that thankfully she eats, and a bit of apple (doesn't eat much fruit) - our daughter did take movicol (she's just graduated it!) - there is a flavour-free version, although of course it does have some taste. But you could try it in water???This will not last forever. I'm telling you this from the other side
This is going to sound weird. Consider teaching him to squat on the toilet. It relaxes muscles around the rectum making it easier and less painful if constipated. On the other hand if you have the runs squatting parts the buttocks so there will be less mess when he wipes.
most importantly giving him, even just as a placebo effect, it gives him a thing he can do to help him feel he can control the process.