Movicol advice

[1981trouble]

My ds is 5 and has never managed to reliably toilet train. About a year ago we identified he was constipated and used movicol (were living abroad so worked it out ourselves), never really got on with it - would have 4-5 good days, an explosion and then 3-4 days of diarrhoea and would stop using it.
After a few months, moved to lactulose and have gone through good and bad phases with it. It was particularly bad in spring through the end of June, at which point we went up to 10ml a day and were referred to paediatrician.

At the same time as upping to 10ml, also went gluten free and have had a brilliant 8 weeks, gone from 2-3 poo in pants and 4-5 wet pants a day to 2-3 a week. (He is also dairy and soya free from birth due to allergy)

Used private health care and saw paediatrician this week, he moved us back to movicol, started 2 sachets a day since Wednesday and it's been awful ever since.
Paediatrician said to let it settle and then go up or down to 1-3 sachets a day as maintenance dose.
We can't go out as he is wetting/pooing constantly. It's now 2pm and he has had 4 wet pants and 3 dirty pants today. His behaviour and mood is absolutely vile and he is food hunting constantly

I've read various things about movicol so I get that it needs to let the bowel unstretch and that these effects were expected but I didn't realise it was going to be so bad. Ds had just started to get his confidence back and I'm having a wobble as to whether to stick this out.
We go away tomorrow (luckily we have a washing machine there!) and just know it's going to be a shower of shit all week.

So now you know the life story, I'd appreciate any words of wisdom - how long could this go on for? Should we be sticking it out or going back to lactulose? Stay on 2 sachets or drop to 1? When will he get some form of bowel and bladder control back?

Sorry, dashing out (apart from to say I'm disgusted your private paed hasn't explained more than that!!!), but link below goes to similar thread, and 2nd post gave a fairly long explanation:

www.mumsnet.com/Talk/childrens_health/2207509-advise-please-about-chronic-constipation-still-at-18-months-old

Hope some in it helps.

Thank you so much that does help a bit. I'll come back tomorrow to write more

Get your DS tested for coeliac disease. This sounds a lot like what we went through with our DS before he was diagnosed.

Agree re testing for coeliac.

Have you done a dismpaction? Instructions should be on the patient info leaflet, but, essentially, you increase his dosage over 4 days or so until he is on 12 sachets a day for up to 3 days, and his poo is basically brown water. That way you clear out any blockages, and old poo left behind in his colon and affecting his vowel control. Then you go back to the maintenance dose.

After going up to 6 sachets for disimpactation, Dd is on .25 dose a day for maintenance. Get checked for coeliac and maybe look at low fodmap diet. We're in the earlystages of low fodmap and it's improving things.

Since our DD was young we were told to use movicol but it's only ever worked when the constipation was mild. We eventually settled on: child-size glycerin suppository to shift the back-log, maintain movement with high soluble-fibre diet and lots of fluids, and just use a bit of movicol if movement looked a bit 'hard'.
Lactulose was a hopeless fir us at low dose as after antibiotics she had intestinal yeast which caused constipation and was made worse by lactulose.

Oh and at age 7 if DD gets constipated she still has problems having to rush for a wee and occasionally has accidents.

We had to clear DD out when she was impacted and basically start from scratch
When we first got movicol we did the same as you - but it's not clearing the big blockage. Our consultant told us to take 1 movicol, 2 the next, 3 the next until it all came out..... then experiment with a maintenance amount.

It's taken a long time to get we are now. Even when we got in under control DD would still soil, be unwilling to go to the toilet etc need to wee constantly (from holding poo).
We used to have to sit on the toilet for long periods of time to help her go.

She's 8 now - we use nothing, she eats well and drinks lots and takes herself to the toilet.

Hers was caused by coeliacs disease -
It takes years for your bowels to recover and my experience with DD fits with that (she's been GF for 4 years)

Hi all, thanks for the responses.

Coeliacs screening has come back clear twice previously.

He isn't impacted (I don't think anyway). When on 10ml lactulose daily, he has a bowel movement daily which is fully formed and "normal" (sausage like on the Bristol scale😀). And seems to be coping ok with wees.
The movicol was making bowel movements every 1-2hour and were sausage shaped but squishy if we got to the toilets mostly in pants totally unaware he'd done it.

We have come back onto lactulose since Sunday - away on holiday and just couldn't cope with the poo whilst away! He is straight back to really consistent and dry/clean. We will review it again once back to get to watery stage - it's going to mean a good week off school though I think.