help me get the movicol dose for dd right

[kaz1119]

Dd is almost 5, asd. Has been witholding poo a while (about 1 BM a week).

Paed put us on movicol. We had a clearout after increasing the dose for the first 10 days and then eent down to a maintenance dose of 3/day. This was a month ago. BUT, Dd still only hss 1 BM/eerk. No overflow and when things finally move then it is an entire day where she just keeps pooing.

Impossible to reach the paed & GP useless.

Should i increase the maintenance dose? Trouble is, getting down 3 is already a struggle...

No idea what to do. Desperate for some advice.
Ta

I find if we go from a clear out to maintenance that it doesn't work. bring it down slowly, half a sachet a time and wait a few days. when it's at an acceptable level, stop. it might change the maintenance dose or you might go down to your normal one.

I'm getting a little frustrated with one of mine. off laxatives we get a blockage, on anything (even 5ml of lactulose) and she has no control!

Thanks - i think we might have put down the dose too quick (from the 6/7 clearout sachets to only 1 or 2. Will aim for another clearout and reduce v slowly.

Will see if i can get hold of paed but tbh, he is beyond useless (we also see him re Dd's asd).

keep, what are possible long term problems if impactation is not under control? Paed made it sound easy (just movicol and all will be fine).

That is a big drop, I can usually clear out my eldest with 4 and it'll be days before she stops running from that. The good thing about Movicol is that you can't overdose it (it'll just keep them on the loo) so do try it a bit until you work out what's right for you.

Long term it can over stretch the bowels and break the elasticity so leave them incontinent and the pressure on the bladder can make them incontinent that side too BUT it takes a long time to get there. My eldest has been on it for four years and we're still not perfect with her - just her natural variation I think - but no incontinence issues.

One thing to watch short term is that if they get used to not being able to go to the toilet, they may not recognise when they need to go and you end up having to potty train again.

The reason why it takes a long time to settle down, is that the bowels are stretched and so 'hold' the poo. Also, if the impaction was severe, there could be some nerve damage, so they don't know when/how to push. So firstly, you need to keep a high enough dose going so that it clears frequently, to enable the bowels to shrink - this could be a matter of weeks or months. Secondly, if there is nerve damage, the only thing that will work is routine, and working with the body. There is apparently a chemical change in the body after a meal which means that the bowels will 'push' the poo out. Make your DC sit down on the loo after a meal, for a period of time, it could be up to 30 -40 minutes. Boring for them, but give them a book or something, but the nerves usually heal in time (could take longer than a year though).

confuddled - i've been using 1 teaspoon of flaxseed (linseed) on DS1's breakfast cereal and that's helping. He doesn't really need movicol anymore, we were down to 1/2 a sachet for a few weeks, but stopping entirely meant he stopped entirely. Flaxseed has kept him going reguarly, usually every second day.

Thanks DIY, I'll look into that. We had to go up yesterday, you could see a ridge down her belly from her ribs. Poor thing, she's so teeny but it took three adults to hold her still so we could put medication in My nieces were there (we were over at my parents) and one stood with her back to us to give her privacy and as the other couldn't stop looking and looked like she was about to burst into tears herself! She eventually managed to get rid of it in two goes, they were wider than her leg, her dad and mine looked shocked at it and thought it would hurt them.

Afterwards she flopped on Nanny's lap, pale and pouring with sweat. Slept well though! Gave her 5ml of lactulose this evening before bed but she's probably going to end up with the runs now because she is having something.

We're fortunate our girls have never got really bad and we can have the eldest manageable in a week, the younger as I say doesn't take well to being on them.

It seems to be a family trait on his side, straight to their Russian side, he thinks it's the Russian genes not liking the British diet...

Confuddled - Wouldn't surprise me, that's MY genes too!!!

I think we may have to get looking into Russian diets! My children are 1/8th Russian, so it's not a lot but my husband is quite Eastern European looking and one of my daughter's (the one who's suffering) looks a different race to her sisters (and they're all darker than British milk bottle me) so there's definitely plenty of the genes around. I guess you can never go far enough away from genetics though.

Oil - it has to be oil. My DParents have a far oilier diet than I do (I am genetically 100% Russian, so DSs are 50%). They add oil to almost everything they eat, they eat a lot of carp, which is a very oily fish, leave fat on cuts of meat, etc (and salt, but I'm not going down THAT path!!).

When I spent some time in Moscow I found it really difficult because the food was far fattier and oilier than I was used to. I think that's why the flaxseed is helping, because it contains a lot of oils.

Interesting! I'll talk to their dad about it. His great-grandparents were royalists and came here about 100 years ago and his grandmother was born here so we don't really know a lot about Russia other than what you see and read. Both his mother and grandmother had/have problems like our girls.

My sisters and I have similar problems. My Grandparents left Russia around 100 years ago too, but via a rather different route, and my parents married within the Russian community. Their diet isn't completely traditional, but still along those lines.

Thanks diy - the stretched bowel makes sense. Just said to DP the other day that her bowels must be really stretched... i think she knows when she needs to poo as she pro-actively holds it in.

That's good that there's no nerve damage, kaz. My DS1 doesn't feel it, and doesn't even know what muscles to use anymore. Apparently the healing can take 2 or 3 times longer than any the length of time there were problems with impaction.

The mental/emotional problem is just as much a problem if not more. If she is holding it in, then it's probably because she's expecting it to hurt. She has to learn to not hold it in, which means it has to be runny enough to stop her holding it in. That will also take time.