ERIC
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Four year old & Movicol

I could really do with some help. My four year old son started soiling his pants last year. It seemed to coincide with complaints of tummy pain, and increasingly angry behaviour and tiredness. I saw our GP twice, he had plenty of blood tests at the hodpital which were all normal and he was then eventually prescribed Movicol for severe constipation with overflow (it's always "leakage", never a full poo). We've been using the Movicol for a few months now and although we saw an improvement at first, he's now soiling himself regularly again... Often three or four times a day. The tummy pains seem to have stopped, but I'm worried about the leaking, especially as he starts school in September. Our GP has just said she can't really help more as she's not a paediatric specialist and so he's referred him to the paediatric gastroenterology department at our nearest hospital. Got the appt through this week... 20th December before he can see anyone! I'm feeling a bit lost. Really want to help him, but no idea what to do and this seems a long wait. His dosage is either half a sachet or one sachet a day, but I'm wondering if I should temporarily increase this in an attempt to "flush out"? My GP won't really say; just says it's trial and error...

Any advice would be so welcome. It sounds stupid, but it's really having a big impact on us all and I really don't know what to do.

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Hi. It doesn't sound stupid. This impact this can have on the whole family is enormous! My 4.5 year has soiled since coming out of nappies and it's been a very stressful 2 years. He was recently diagnosed with faecal impaction and we did a full disimpaction with Movicol in May and haven't looked back since. I would definitely recommend it (there's a very clear guide to disimpaction on the Eric website). I think the problem with giving just small amounts of Movicol is it won't clear a big blockage/large amount of poo but doing a disimpaction clears everything and you can then start afresh and find a maintenance dose which works...xx

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Hi, he’s not on enough movicol. My son is on it as he started woholding after potty training and he takes a maintenance dose of 1 sachet which we hope to reduce after he starts school. He got constipated again when we went away in March and we were down to 1/2 a sachet at that point. Our paed told us to up his sachets for a few days to help him go again . It wasn’t a full disimpaction as he’d never leaked but we were told to do 6,4,2,2 sachets on consecutive days. On day one he sat on the loo for most of the day and that was only after 4 sachets so I never needed to do the whole amount and adjusted it according to how my son had cleared out. You do have to plan to stay in all week really. We then managed to stick to the maintenance dose of 1 sachet until now and we will look to reduce it - but only after he starts school as the paed said not to do it before hand. He is fine going to the toilet now but will hold it in as long as

possible.

I’m not sure if funds allow but perhaps you could see the paed privately before the appt in December? Big hugs x

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Hi Triciaroo

Don't worry you are definitely not alone.

Just to add to the replies below maybe check out the video by the Poo Nurses.

I have spent years debating with myself over doses of movicol and being told Trial and Error by the professionals. The Poo Nurses Video really helped me to understand how the movicol works. It was very very helpful. If you Google poo nurses or find the video which i think is available on here.

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Thank you so, so much for taking the time to respond to me. Have just burst into tears reading this... I think just from relief.

Will have a look at the guide and videos this morning. I've got a lot of London commuting this week, but think I might try upping the sachets next week to see if we can clear anything. Had also never thought about trying for a private consultation so that might be a good back up plan.

You have no idea how much better this has made me feel. At least I have a couple of avenues to explore now. I think I'm a bit "can't see the forest for the trees" at the minute and have just been feeling pretty useless.

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If you go back to your doctors and say you need to see someone quicker and it is drastically effecting your life. They can write another letter to the paeditrian to try and pull that appointment sooner. It does sound like you need to increase the movicol and knowing what I do now I would look to do a discompaction programme and hopefully start from a place where they are empty. Eric would be able to give you advice on what your child maximum dose would be.

It is hard to get the dose rate right and I find you are having to adjust it quite frequent. Good luck, you are defintly not alone and we all feel your pain.

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Hello,

Have a read through this thread from a few days ago

“Getting worse on Movicol, what are we doing wrong?”

Xxx

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