Incontinence in nearly 5 year old , anyone managed to get help

[Beeharris]

Hi all

My 4 yo has been physically delayed in many ways, he's had scans and blood tests and he has no issues (us and the family Dr suspected light cerebral palsy for a bit) , so it's likely to be a learning development issue that they think they'll be able to diagnose at a later date. He gets support from speech, physio, consultant, and orthopedic but non have really found anything.

He goes through stages of being OK pooing, then not pooing at all (it got to two weeks last week!) to having to flush him out with cosmocol (it's really stressful trying to remember when he'd last pooed)
Usually he's a little bit leaky, which is really embarrassing for him and sometimes I get to him from nursery and he's very sore.
But since this last constipation issue he's almost totally incontinent that way, and I'm having to put him in pull ups, and now I'm keeping him off nursery (without making a fuss to him) because they don't seen to be able to check him and the other kids ask about his pull up, which is heart breaking.

I'm so worried about school in September for all these reasons. I've been to the doctor so much but they don't seem to know what to do with this - I either go when he's constipated and they say wait till the episode is over and prescribe cosmocol and senna, or I go when he's leaky and they say its not bad enough to take further.
I've tried to balance cosmocol over the years with senna, just senna, bits of cosmocol I just can't get it right.

the leaks + constipation go together & are often caused by too much poo backing up.

the GP should be giving you Movicol and a daily dose would keep things moving. you have to try it to work out the best dose.

we had to get a referal to a gastroenterologist before we could get the movicol but it was really worth fighting for the referral and getting the right meds.

There is a book by Cohn called 'constipation withholding & your child' which is very helpful.

Hi thank you.
We've been using cosmocol for years and and does work for constipation, but 1 per day and there's literally nothing solid, then half a day and he seems to back again.
We've tried so many different ways and now my heart hurts for him when he says his bum hurts or whatever or he has to wear pull ups

Seriously, Parietal is bang on. This sounds very, very typical for a child who has been constipated so long that the hard rocks in their rectum have stretched it up. So, they struggle to poo, but the bum hole is also stretched, so they also struggle to hang on. Loosen the poo a little, and the rocks don't shift, but the looser poo from higher up can come through, and does so unexpectedly. So then you cut back the movicol, and the rocks set even more like concrete.

The only way to make progress is to empty out all the rocks, with a full on clear out regime of movicol/laxido (the term to use to your GP is disimpaction regime) - basically, you pour it in the top end until you've had vast amounts of gravy pouring out of the bottom end for at least 3 days. That gets shut of the rocks, but the rectum is still too stretched to work. The next step is to keep giving the movicol/laxido for many months, at whatever amount gives daily pain-free soft squidgy poo. That lets the rectum, and the bum hole, shrink back down. So they get better at both pushing it out, and hanging onto it.

Have you looked at the eric website? Tends to be useful. www.eric.org.uk/

Totally agree with posters above. My child had faecal impaction with these symptoms. It was diagnosed by a specialist: you will need a referral. He had massive doses of movicol (up to 8 packets I think in a day) until he was totally empty. Then a gradual reduction to one a day. He had a relapse after starting school and we repeated the treatment. His symptoms were leakage, and very rare bigger poos. Never a solid poo. So it really did look like diarrhoea incontinence. Only really toilet trained for poos after he was treated at about 3.5. His bowel was full of solid poo, so much so that they couldn’t do his colonoscopy! The bowel had become stretched and the muscle powerless to push the poo out. The movicol allowed it to all come out, and the ongoing lower dose keeps things moving until the bowel retrains. It’s important that he does not wait to poo, or hold it in, the movicol makes it hard for him to. My understanding is that he will need to stay on movicol indefinitely, probably till at least age 10-12. He now poos once every day. They’re a bit soft still. Google impaction and floppy bowel.

Wow ty guys these are very detailed and give me much more practical info than the doctor gives.
I've got a feeling I need to keep with a higher dose (but it's really hard to know when they're done!)

How did everyone cope with nursery and school? Nursery for my boy seem totally unprepared for it in the preschool room so I'm worried school will be even worse

I also agree with previous posters. Push your gp harder for disimpaction regime and also ask for a referral to the bladder and bowel nurse. There are NICE guide lines on this that must be followed.
The Eric website is also a really useful resource.

Our school were very good, cleaned up a few accidents and were happy to encourage drinking movicol at school as well as allowing free access to the toilet during lesson time.

OP the bowel is empty of solid poo once the poo has turned to watery liquid with just flakes of poo in it. Once you are sure you’ve got to this point you reduce the dose slowly using the Bristol stool chart for reference.

Nursery suddenly cooperated once we had a letter from consultant.

School (YR) have been fine, he drinks the movicol at home, but is allowed free access to the toilets (while others are encouraged to wait till breaks). When he’s had accidents they’ve been very lovely and are happy to shower and change him, though we were expected to provide gloves, aprons, bags, wipes and change of clothes. We did very briefly revert to pull ups while we treated his relapse.

Thank you.
He doesn't really know he's had an accident. He's very different in those kind of respects, not quite with it sometimes and other things he's great.

The knowing when he's done is still difficult tho.. That kind of brown water is leakage around it too so I'm never sure.