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At my wits end, stool withholding, asd, warning tmi!

(17 Posts)
Toni27 Thu 26-Sep-13 11:23:02

Hi my son has moderate asd, comprehension is improving but not complete yet, he holds his poops in, he hasn't been for about two weeks, he's on movicols, he drinks water, I've tried cutting out gluten and then dairy in the past which made no difference, his problem is in his head, he just will not let himself go, he's just started school last week and his behaviours are getting typical of when he really needs to "clear out" but I just can't get him to go, he's constantly leaking tiny bits of loose poop, even as I'm changing his nappy its leaking out in pea sized amounts, I've upped his dosage of movicols but he won't poop, I've been massaging his tummy, pulling up his knees, even promised rewards for a poop and tried taking away things like the tv until he does a poop. He just won't go and it's making his autism worse if that makes sense, loads of head banging, not cooperating, loads of echolalia, it's heartbreaking to see as he had a lovely summer and made loads of progress.
Has anyone experienced this?? If so did your child grow out of it? My son is 4 1/2. Does anyone know of anything that could help break this fear of pooping? Thanks x

chocnomore Thu 26-Sep-13 11:49:24

have you discussed it with the paed (or whoever prescribed the movicol)? what is/was your maximum dose.

DD had this problem and we were told to up the movicol so she won't be able to keep it in any longer. Paed said you cannot really overdose on movicol. during the initial clear out we had 10/day. we were then an a fairly high daily dose (think 5-7/day) for a long time go keep things moving.

Toni27 Thu 26-Sep-13 12:40:06

Thanks for your reply! He's been on movicols since he was 2 and paed just said to keep him on them till he loses the fear of going, his poop is very loose ATM tho, he just won't let it out, I used to be able to force him into a sitting position when he was with holding and he would fill his nappy, but this has stopped working, he's waking up in the night now where poop has leaked out n his sleep and its hurting his little bum, I'm up all hours changing him for just a tiny smudge of poop, il try putting him on 5 sachets to see if it makes a difference but his poop is like water anyway and he still manages to keep it in, he's just making himself so ill with it and as much as I try to explain that he needs to do a poop to stop his tummy hurting he just won't go.

Toni27 Thu 26-Sep-13 12:44:05

He's been on 1 1/2 sachets for a few weeks which I upped to 2 1/2 yesterday which made no difference, he used to be on a lot more but I weaned him down it took months, he was then doing a normal poop for the first time ever with no movicol, daily, for about 1 1/2 weeks then did an acidic poop that hurt his skin and then was it back to with holding again worse than ever.

Stuck4Ideas Thu 26-Sep-13 12:54:52

Are you using any stimulants?

Flax seed oil/ prune juice are very good and work very effectively as a laxative... Movicol makes the stool softer but you still need something to give it a push iykwim.

zumbaleena Thu 26-Sep-13 13:10:00

You need to look at enemas! Do it yourself enemas!

bialystockandbloom Thu 26-Sep-13 16:10:25

It might be anxiety/behavioural related if it has just started around when he started school. Is he happy to use the toilet for weeing? My ds was terrified of pooing in the toilet for ages so we had to break things down into tiny steps to get him over the fear. School was even worse - took him till halfway through Y1 before he'd use the school loos!

You could up the rewards for when he tries to go. Try not to show him how stressed you are about it, but take him to the loo at regular intervals, making it very matter-of-fact, sit him down, give him a reward (something he really likes) for sitting for 10 seconds, then 20 seconds, then 30, etc. When you feel he's comfortable just sitting there, then scale down the rewards, saving them for if he actually does something. If he actually does do antyhing, go crazily overboard with rewards. I woudln't use the 'removal of rewards' method actually, as imo this adds to the stress - positive reinforcement is shown to work much more effectively than punishments.

We also learnt that the more of an issue we made it for ds, the more stressed and anxious he got about it, so keeping it as a very bland, neutral sort of thing helped - taking him to the toilet should become just part of the routine like cleaning teeth. Like yours, my ds's behaviour and autistic symptoms got much worse when he needed to go but couldn't - probably due to the pain and stress of withholding, and trying to distract himself!

Toni27 Thu 26-Sep-13 17:06:02

Thanks guys I can't toilet train my son yet mainy cos of the with holding problem and also cos I only got him a full time statement cos he's in nappies and if I toilet train him the LA will reduce his hours of school support. Does flax seed oil taste of anything?? He would never have prune juice, he hates fruit dammit! But I might beable to sneak oil into his food.... And tell me about enemas, what do u do, don't want to do anything scary but also desparate to flush his guts out, I swear his poops in his guts are poisoning him. He's just started puking today, which is what we get when he's not been for ages poor little boy sad

Toni27 Thu 26-Sep-13 17:07:33

Oh and has anyone tried their kids on activia, I just got some, do u think it might make him want to go more?

You can keep upping the movicol until he cannot keep it in.. trust me there is a point where he can't . When my son was impacted he had to have the de impaction dose of 16 sachets in a day !!!

To be honest I think you'd be wasting your money on activia.. a prescribed stimulant (again so he can't keep witholding ) would be more appropriate..senna or the like.

Mini enemas are great for getting poo out..they really are tiny tubes..nothing major...if he's holding for two weeks then you really do need to push for more active treatment.

Good luck ..witholding isn't fun, but it can be helped with the right combo of meds.

I wouldn't NOT toilet train him because he might lose hours tho.. have to say as a TA I wouldn't be impressed with that attitude towards Statementing. If he needs support in school his hours should continue in our out of nappies as presumably he hasn;'t just got them for nappy changes!

Toni27 Thu 26-Sep-13 18:36:47

Okay cool, thanks, no really they only agreed to full time statement for nappy changes I know it's unbelievable, I wanted to toilet train over the summer but was warned his hours would be reduced. Really peed off about it but that's another story. Just got him to drink down 5 in a fruit shoot. Il keep going till he's cleared out, try and up the ante tomorrow. Do u mean push for more active treatment thru the paediatrician? Or is mini enema an alternative therapy? X

jomaman Thu 26-Sep-13 21:31:48

Sorry that you are going through this. We had similar problems with ds and the advice from hospital and GP was to use more and more movicol and senna but we didn't see any improvement.
My suggestions are:
- try to get your gp to refer you to a paediatric gastro specialist
- I know you've tried diet, but we found the specific carbohydrate diet to really help (google 'breaking the vicious cycle' loads of info on line)
- its going to sound a bit mad but there is something called the spinal gallant reflex which infants ususally lose. As part of a retained reflexes programme we worked on settling this reflex and after a short time of working on it he became able to control his bowels. I realise this sounds bizarre, but I wish I had known about it sooner as I really saw it work
- another thing that was recommended a lot to me in order to effect a 'clear out' was this thing called 'oxypowder'. We never ended up trying it but thought I would put it out there too.

Toni27 Thu 26-Sep-13 21:47:14

I asked his paediatrician for a referral to a gastro specialist and she just said " I am one" but that's as far as I got, just got told continue with movicols. Defintely going to google those things jomaman and all the other suggestions. Next time he has his paed appt which s coming up ext month I will be armed with a list of suggestions to try and sort this out! X

Toni27 Thu 26-Sep-13 22:04:27

Did u have a retained reflexes programme thru your paed or is that something that u organised your self privately?? Never heard of it all before but just did some quick googling and it sounds really fascinating and something I want to explore x

jomaman Fri 27-Sep-13 10:46:30

Hi Toni, I just PMed you smile

Queenelsarules Sat 20-Aug-16 23:05:41

Ask for sodium picosulphate, we've been going though this for the past few years, seeing a continence nurse regularly, for persistent witholders movicol is not enough in itself, the picosulphate irritates the gut I think and forces them to go. It worked for us when nothing else did. Hth, good luck with it, I really do understand how challenging it is X

Queenelsarules Sat 20-Aug-16 23:06:54

Oh didn't realise this thread was so out of date! Prob sign I should go to sleep!

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