Help with movicol.

[youarenotkiddingme]

My ds has been taking movicol for about 6 years on and off now.

He's had all sorts of regimes and has always suffered impaction even though we've kept him regular.
I've never managed to find a correct daily amount.

So for past 2 weeks he's been on 10 a day. He's had the runny poo and some lumps. But hasn't gone for past 3 days. 30 sachets should move something!

I've run out now so will have to ask for on the day prescription on Tuesday.

But this cannot be right can it? Should I be asking for a re referral to a pead or something?

[ramnikmathur]

Yes, that's a lot of Movicol. I presume you are talking about Movicol Paediatric Plain. How old is your kid? Dis-impaction regimen can be upto 10-12 sachets a day, but for maintenance, you should NOT be needing that many. If the diet and fluid intake is adequate, then you should definitely see a Paediatrician, as soon as possible!

[StUmbrageinSkelt]

Can you go to a paed gastro? It sounds like he definitely needs a good work up to figure out a regime that works for him. That's a lot of movicol.

[youarenotkiddingme]

Yeah he needs about 6-10 sachets a day as maintenance.

We do di impaction and then do the lowering 2'sachets a day to keep him going daily. Then when he doesn't go for a day we up by 2 sachets. Problem is that he then still gets impacted even when he seems to be going.

I'm going to have to ring 111 and ask for a prescription today as I've used all we have and he has been twice in 2 weeks. I darent stop a day.

[blibblibs]

That's alot for maintenance. DD takes that much to get her going again but only one a day for maintenance, although for her a poo twice a week is good. We've never tried to get her to go everyday.

[youarenotkiddingme]

Ds has had 60 sachets and not been at all

Even on 4/6 sachets a day it seems to build up and I have to up the uptake iyswim?

But good news is I've found some sachets so that will do for today and tomorrow I'll ask for on the day prescription. I'm sure after a BH they'd rather do that than waste an emergency appointment for one!

I'll then make an appointment and ask for referral cpback to his consultant pead. I also think I'll contact his school nurse and see if she can make a referral to a continence team.

[feesh]

Movicol is pretty nasty stuff; it is starting to become known that it is linked to possible neurological issues (it used to be thought that it wasn't absorbed, but that view is beginning to change). My son was on it for a very short time and I took him off it when I started to read up on it. In the US (where it's known as Miralax) the FDA are currently investigating paediatric use of it.

There is a brilliant Facebook group called 'Parents Against Miralax', which has loads of good advice for serious long term constipation issues. We have successfully managed our son using the methods learned from this group; I really recommend joining it. A big part of it has been significantly increasing his magnesium intake (there is a theory that we are all severely depleted in magnesium these days due to modern food production techniques).

Good luck, it's so stressful.

[nevermindagain]

Hi OP, I have read a few of your posts before so I remember about your DD and you have also been very kind to me I have NC since.

How long has it been since his last properly went and how is his stomach looking/feeling? Is he uncomfortable?
I expect he is feeling very bloated as movicol in a large volume causes a lot of gas!

I would be really concerned he has an obstruction and that is why the movicol is not working.
I would ask yourself if there has been a time where he has not responded to it as expected beofore? And if not then that would ring alarm bells.

At this point, I think an X-ray is the only way to find out what is actually going on in there.

You know your child and you know what a huge quantity of movicol that is.
I really would trust your gut, if you feel something else is going on please don't hesitate to seek help.

Doctors are so obsessed with pushing movicol that they don't stop and listen to parents when they say it isn't working, the answer is always more movicol!

The next step would be a stimulant
(if appropriate for him)
A gentle one like Senna?
Movicol adds water to the poo but it doesn't help push it round and out, the stimulant gives the nerves and muscles a kick start moving things along.

Best of luck and thinking of you and your Ds

[nevermindagain]

DS sorry silly auto correct

[youarenotkiddingme]

Well he's been

It was like water with pebbles in it! So I'm going to give 8 again this evening and see what happens tomorrow.

I'll go back and read posts now - thank you for responding