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.