Five-year-old on long-term Movicol with accidents, unsure about disimpaction

[JollyWasp]

My son is 5 and has been on movicol since he was 9 months old. We have tried to reduce it a few times over the years but it never worked, so we stayed on it.

When he was 3, he got put on sodium picosulphate because he still wasn't really going enough, which really helped for a while.

However, last summer he started having more and more accidents, really sloppy ones. We had already reduced the sodium picosulphate to 2.5ml, so we started reducing the movicol to half a sachet a day (making it up and keeping the other half in the fridge for the next day). He was always having accidents at school, we thought it was just because he wasn't listening to his body. At Christmas we nailed it, he was fine and understood when he needed to go. Then he went back to school and all was ok until April. He started having a few more accidents (wee and poo). And then at the end of last week, he had 2 huge sloppy poos on Thursday, again on Friday, and then little bits yesterday. We stopped the movicol on Friday. Today he has done a sloppy poo, which was then slightly firmer... There was loads of it!!

The doctor thinks we need to do disimpaction, I'm reluctant and going to push for an ultrasound as I'm not convinced he's backed up. They think it's overflow, but I don't understand how there was so much and why it was so soft! Also, he gets very upset when he has accidents (we also suspect autism/PDA), so I don't want to put him through pooing himself for a week if I don't need to.

Any thoughts? Advice?! Not sure whether to continue with movicol or keep him off it 😩

Is his tummy hard and swollen? Usually there would be signs of impaction. Have him lie down and gently press and feel his tummy. I would push for an ultrasound if that's what your gut is telling you. Doctors have a horrible habit of fobbing people off with medication to treat the symptom without fully investigating the cause.

It's a really tricky one to know, and I sympathise as we've been on the same journey with my daughter. Are you under a consultant or just the GP? By 5, I would be looking for a referral to either the continence team or paediatric clinic (it'll take an age so best to get the ball rolling).

In general, and apologies as this is a bit gross, but if what is coming through is pale, I'd say it's too much meds. If it's darker and smellier, I'd say it's impaction with backed up material coming through. And as mentioned also a hard tummy with impaction. Also worth getting some urine dipstick test strips from Amazon just so you can work out if the wee accidents are due to pressure on the bladder or if by any chance he's picked up a UTI (which can happen if there has been a lot of soiling).

Also, this is totally anecdotal, but my daughter tolerates laxido better than movicol. They're meant to be identical, but we found a difference in that it seems to soften the stools whilst causing less soiling.

Oh, one other thought, my daughter used to get in more of a pickle in warm weather. I don't think she was drinking enough to compensate for it, so it upset the balance of things. So if nothing else at the moment, up the fluids if you can, even if it means sticking some sugar free cordial in (We've been hiding elderflower in my daughter's school bottle for ages as it's colour free and it means she actually drinks it, as recommended by the continence nurse).

No, it's quite soft. I tried the other day and thought I could feel something along his gut but he doesn't have a swollen belly. It's just so hard to know!!

He's just under the gp, the paediatric gastro team effectively discharged us previously! I know it can take forever to be seen, so I think I 'd probably look for a private one off appointment instead..we did it before and it was excellent.

I would say it's a normal colour, sometimes paler, hardly ever dark..always absolutely stinks though! I feel like the medication makes it worse!!

Good shout on the UTI, he keeps saying his willy hurts and then denies it. I'll order them now!

Very interesting about laxido!

I do feel your pain and frustration @JollyWasp - it’s a tough situation. I had a 5yo who was soiling for years. Movicol never worked right for him, we couldn’t get the consistency right. We used it for disimpaction (I reckon we must have done this about 3 or 4 times overall), but sodium docusate was the medicine that really worked for him. He went on it aged 5 or 6, and we finally weaned off age 11 or 12.
Very normal to have set backs where it’s been going well, and then they get backed up again - often down to dehydration, an illness, travel (holidays / visiting family), eating at unusual times for whatever reason.
There’s a strong link with ASD and propensity to constipation, also hypermobility as well (my DS has AuDHD and is hypermobile)

Personally I would advise you to do the disimpaction, especially if you can be at home more with the summer holidays starting. And you’ve got to do it deadly seriously - do not start reducing down until you are at brown water stage consistently.

If you are near London, I can recommend Dr Mark Furman if you want to see someone privately (www.paedgastrolondon.co.uk)

I would push to be referred to the continence team. They are much more useful for us than the GP. My DS is 12 and still on sodium pico as we could never really get anywhere with Laxido etc. he is still a bit up and down with consistency etc. He has EDS which definitely affects his digestive muscle tone.

That sounds incredibly tough for both of you, especially when he's so distressed by the accidents.
Overflow soiling can actually be surprisingly loose, which is why it can be mistaken for diarrhoea. If there's a large amount of stool backed up, softer stool can leak around it, so the fact that it's sloppy doesn't necessarily mean he isn't constipated.
That said, if you're unsure, it's reasonable to ask the GP to explain why they think it's overflow and whether any further assessment is needed before starting disimpaction. I wouldn't stop or change his medication without speaking to the team managing his constipation, as that can sometimes make things more difficult.
If autism is also being explored, it may be worth mentioning that too, as sensory differences and interoception (recognising the body's signals) can sometimes play a role in toileting difficulties.
I hope you get some answers soon, it sounds like you've been managing this for a long time.