Question for anyone with child on Movicol maintenance dose

[PollysPoppy]

DD, 8, has been on Movicol since Feb. Started with the disimpaction regime and then onto a 2 sachet maintenance dose. About 8 weeks in, she missed a few days poos and started soiling again. Increased dose for a week or so, then pulled it back to 2 and, on advice of GP, back to 1 per day. We've had 6/8 good weeks with no soiling ... until she, again, didn't poo for 3/4 days. Poo'ed Sat and Sun, lots of soiling Monday and more again today. What's going on? How do you know when is the right time to reduce from 1 to 0.5? I'm suspecting she got a little bunged up over the few days but would have thought Sat and Sun would have cleared her out.

Back to school in a couple of weeks and this is really affecting her confidence. She's very down. Not sure what to do. Any advice please?

Thanks

I think at that stage what I did was if she hadn't gone for over 24 hours I increased the dose to 3, if she still hadn't gone I went up to 4.

However it sounds like she may have got a bit bunged up, so I might go for a couple of days on 4-6 sachets to try and clear. I'd probably ask my GP to phone first as they sometimes used to like to check her.

But it sounds like you decreased too soon from my experience. We used 2 sachets for getting towards 2 years before decreasing, and then we decreased slowly, so were doing 2 on one day then one for at least 6 months before coming down to one a day.
You have to keep an eye on it and if she hasn't gone immediately up the dose. When they're reliably going daily without problems for quite a long time you decrease slowly. Going straight from 2 to 1 is halving it, which is quite a decrease.

I think the advice to reduce to one sachet was a mistake. The consultant who my DD occasionally sees wasn't even interested in discussing whether to reduce her maintenance dose (of three sachets) at her last appointment. She's been on Movicol got most of her life!

I do think GPs in particular can be way too hasty to recommend weaning off Movicol. If it ain't broke, don't fix it. Since February is not long.

Can you ask for a paediatric gastro referral? Someone with a bit more knowledge of chronic constipation in children?

DD is nearly five, btw.

We have the double dose if no substantial movement in 24 hours. On hot days fluid intake really counts too.

Thanks all. Think I'll ask for referral .... DH and I had a chat last night and agree with what a PP said re GP not, perhaps, having the experience of Movicol. I've spoken to the ERIC Helpline on quite a few occasions - last time they thought the 2 a day was quite a high maintenance dose. GP saw her at start of July - the soiling had stopped again by then and although she wanted me to go to one sachet, I did but down to half for a week then down to 1. Until last week the had textbook poos on one a day - it could well be lack of water. She's a really bad drinker. Will plan to ring GP to ask for referral - thanks for the advice.