Movicol not working

[Vic5]

My 4.5 year old has suffered from constipation since she was 6 months old. She got referred to a paediatrician. We tried disimpaction with movicol in May/June 2019 - 8 sachets a day for 5 weeks. This did not work and we were told to take her to A&E by the paediatrician because he was so concerned about her bloated tummy and that the movicol wasn’t working. Eventually that resulted in a manual disimpaction and a biopsy for Hirschprungs plus endoscopy. The biopsy results were inconclusive but she showed some early signs of coeliac disease so was put on a gluten free diet. We continued with a maintenance dose of movicol and it was hoped that and the new diet would solve things. 6 months later in February she was back having another manual disimpaction and repeat biopsy. The results of that were delayed and due to having to wait for an expert pathologist to review we were first told she had Hirschprungs and finally told on Thursday she does not. Now referred back to gastro team but it’s impossible to get a response unless it’s deemed urgent. She has been on two movicol per day since February but it results in constant soiling. She also seems bloated so concerned there is another build up and the soiling is overflow. Because of the constant soiling she has not had any kind of routine in terms of sitting on the toilet (except for wees) and we did not try to start because of the doubt of whether or not she had Hirschprungs.

In the last few days we have started by not putting any knickers on her. She seems happy enough to sit and try and there’s been (very) small successes but how do we know she’s actually trying rather than the movicol making it fall out of her. It’s soft not liquid. How do we get her to do larger poos? Should we reduce the movicol?

Any help/advice from anyone who’s been in a similar situation greatly appreciated.

Anyone who’s had experience of movicol not working for disimpaction?

Is there anything else that could physically be wrong? Could it really all be down to withholding even with large doses of movicol?

I’m getting quite worried about her starting school in September.

[Robinia]

Have they not prescribed a stimulant to be taken alongside the movicol? My son’s maintenance dose (age 11) is at the moment 11 sachets of movicol a day, 3 Senna tablets and 1 bisocodyl tablet.

We’ve had 3 years of constant soiling, incontinence, abdominal pain and chronic constipation. It’s taken until now to get the soiling stopped. All I’m saying is that some kids need the big guns in order to solve the problem. My son has also used suppositories (both glycerin and bisocodyl) and trans anal irrigation. He’s had countless hospital enemas and flush outs with klean prep. Sounds like your child’s constipation needs really good consultant guiding the treatment. Might need another hospital clear out followed by very high maintenance dose. Picasulphate is a strong stimulant. My son didn’t get on with it- caused gastritis but lots of kids on here get prescribed it and it does work (nurse told me it’s like rocket fuel for the colon) .

[Teddy500]

Hi, we had to use Senna along with the maximum dose of Movicol and disimpaction still took 7 weeks, but my son is 9 and they may not recommend Senna for a 4 year old. Is she on the right maintenance dose? On the Bristol stool chart you're aiming for a type 4 or 5 with a bowel movement every day, so you increase the maintenance dose until you get that. Its also good to sit on the toilet after every meal with a footstool if her feet aren't on the ground. I got my son some liquid timers to entertain him and keep him sat for longer. Have they ruled out IBS? If you've gone gluten free but its not solved the problem could it be a different food intolerance perhaps? We also do the tummy massage for constipation and he has a trampoline to try to help things along. Sorry I can't really help much, I know its so difficult when you have a child who eats and drinks healthy and still suffers. My son drinks only water (lots of it) and has the 20g of recommended daily fibre in his diet and still gets constipated. Best wishes, hope you get the help she needs 🦋