Paediatric appointment coming up

[Hannah1589]

Hi My 4 year old son has his first paediatric appointment coming up and I’m wondering what I should ask. He has been on movicol over a year, in the summer we disimpacted then did maintenance dose but continued to get wee and poo accidents including at school. Recently we actually reduced his dose and now he’s only on 1/2 sachet every other day and have seen some improvement. I’m now confused and not convinced whether he is even constipated. I’d really like to know if it is constipation or whether the issue has now become more behavioural. Are there tests or scans I should be asking for? Has anyone else experienced movicol actually making things worse? I want to make the most of the paediatric appointment but just don’t know what I should be asking for, I’m reluctant to try more medicines when this recent reduction in movicol seems to have actually improved things.

[Yaleamanda]

Are you seeing a paediatrician or a paediatric gastroenterologist? You need to be seeing a paediatric gastroenterologist for it to be any good. I would keep a bladder and bowel diary as well as a food diary. Is he still having accidents? Is he toilet trained? It could be you have found your ideal maintenance dose and therefore you need to stay on it for as long as the issue persisted in the first place, then you can start to consider slowly weaning off the movicol..

[Hidden in reply to Yaleamanda]

But depending on your geographical area people aren’t being accepted into bladder and bowel or gastro paed clinics, and so it’s managed by general paeds. In our area the bladder and bowel clinic is only accepting kids who also have a confirmed diagnosis of ADHD or Autism. Even being on the waiting list for assessment isn’t enough, and community paeds wait lists are at least a year long 😭

[lilaccat1981]

It made things worse for us and we also found all the appointments a waste of time too. We've swapped to 10ml lactulose every day to keep things soft, sitting on the loo 40 mins after after meal for 5 minutes whilst blowing bubbles and playing games. Turns out my son is autistic and rigid toilet behaviour which turns into constipation is very common, none of the doctors mentioned that as an option

[Hidden]

It really all depends on what the original issue was Hannah. My daughter’s initial difficulties were undiagnosed lactose intolerance and just a general lag in interoception. She also definitely has attention and transition difficulties, which made it really difficult for her to notice and act on poo signals even when she could recognise them. She wasn’t constipated throughout all of those 2 1/2 years and movicol would have made things far worse.

She did get stealthily constipated over last summer, probably because she was developing more control, and we’re on a similarly low maintenance dose (half sachet every other day, 15-20ml on the in between days). Giving her too much did make things worse short term as she’d have accidents that incredibly upset her. The general paediatrician said that once a kid gets constipated, even if the behavioural stuff resolves there’s a biological susceptibility to it for some time after, so she’ll be on this for a good 6 months I think.

Really it’s about good formulation. Write a time line if you haven’t already been keeping a diary and use the session for thinking about what’s underlying everything. Also 4 is still very young.