Disempactation

5 yo disempactation:

Hi we started my son on movicol. He’s 5. Day 1 : 4 sachets, Day 2-4 : 6 sachets, Day 5-8 : 6 sachets. We though we had achieved disempactation on day 7 when the poo was runny milk chocolate light in colour no bits, but today we had a thicker (loose peanut butter) Dark poo?! I have a call with doctor on Monday but I’m confused. I thought we should see runny and lighter and lighter poos? Any advice? Maybe up the sachets?!

It could be he has been impacted for 18 months 😬 so perhaps just a lot more to clear?

TIA

[Yaleamanda]

For a child of five you need to work up to 12 sachets, stay there until you see rusty water looking poo, once you do remain there for 3 consecutive days before you start reducing the doses down very very slowly ie one sachet every 3 days until you reach a suitable maintenance dose to remain on. Don't be tempted to reduce too soon you will end up back to square one again.

[Hidden in reply to Yaleamanda]

How many days should this all take? We are on day 9 now and he’s up to 10 sachets. Perhaps I’ll wait to speak to his doctor tomorrow. Its like we achieved disempactation, had 1 day of water runny poo and now back to loose dark poo (cake mixture) with bits in it. Perhaps we have semi disempacted? And more in there?

[Yaleamanda in reply to Hidden]

You definitely have a way to go yet, it's not a quick process and unfortunately it most cases drs tell you to reduce down far too quickly. You need to achieve rusty water looking poo for at least 3 consecutive days before you start reducing down the doses. You need to be on the maximum dose too, don't rely on the 10 sachets being enough.

[Hidden in reply to Yaleamanda]

Thank you! Way to go... as in days or weeks or hard to know and keep going?

[Hidden in reply to Hidden]

Our doc told us it’s a 4 day programme haha! I think a bit more mental preparation for me would have helped

[Yaleamanda in reply to Hidden]

Drs are so poorly educated in this field it is unbelievable. Unfortunately it's difficult to say how long it will take as everyone is different, I have heard of some taking a couple of months but it worked and they are no longer having the same issues they did beforehand. Stuck with it.

[Hidden in reply to Yaleamanda]

Thanks for your advice. We have a check in with the nurse tomorrow anyway so will keep this all in mind. How to you manage if it’s a prolonged period re school? My son attends during lockdown due to his circumstances. We will keep him off this week but if we are looking at months... what’s the solution given the poo just keeps coming 😬

[Yaleamanda in reply to Hidden]

Be firm with the nurse, they're just as poorly informed. Speak to the school about the disimopaction. Regular toilet sits will help as will osnty liners in the underwear to catch any accidents. Send in a change of clothing too. It may not take that long, that's the worse case scenario, but it doesn't sound like you are there yet. After a week on disimpaction, a stimulant laxative such as senna should be added, this may help things along.

[Hidden in reply to Yaleamanda]

Brill thanks so much! It’s the hosp nurse tomorrow not school nurse. Plus I’m not sure during lockdown and staff ratio they would have my son if we add this to the mix... 8 March onwards fine if schools back but I think they’ll refuse to have him during lockdown due to this need for constant toilet

[Yaleamanda in reply to Hidden]

Even they don't have a clue. Speak to the school, he has a medical need and should help you.

[Hidden in reply to Yaleamanda]

Are you a mum with lots of experience or do you have training with this? It’s not a funny questions, I’m just interested. Your advice has already been very helpful and much more relevant vs the advice I’ve had from hosp... ‘4 day plan’ ... haha. Clearly not!

[Yaleamanda in reply to Hidden]

Just a very experienced mum. I know how frustrating this can all be,it's been a long journey for us my daughter is 11 year's old and she has been on movicol since she was 6 months old, we have seen consultants, nurses and most of them are beyond useless. It's only been through research, experimenting with doses etc that we are now starting to reduce the dose she is on, albeit very very slowly. Her maintenance dose was 3sachets per day but over two months we have reduced it down to two, we are staying there for a while yet before we reduce again, with the hope to completely have her off it by the time she is 12.

[Hidden in reply to Yaleamanda]

Good luck to you! That sounds tough and going on for so long. I will keep an open mind having your advice on board and ask for senna tomorrow. Wishing you lots of luck. The impact on our kids confidence is the worst part . Xx

[Yaleamanda in reply to Hidden]

Good luck to you too x