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Paediatric Movicol experts - advice please

(11 Posts)
JinkxMonsoon Sat 02-Jul-16 11:57:35

Quick history of DD - chronic constipation virtually since birth, Hirschprung's/coeliac etc ruled out. Quite a long family history of sluggish bowel, especially myself (and I get through quite a lot of Movicol too!). She's been on Movicol of increasing doses since seven months, and she's now 4.9.

She takes a maintenance dose of three sachets per day, which is quite a lot obviously, and her stools are very loose and splattery. I often try to reduce the dose a little, and always regret it as she gets bunged up rapidly and we need to flush her through with lots of extra sachets before going back to three per day.

She starts school in September though, and struggles with bottom wiping, exacerbated by having such loose poo. So again I tried to alternate her maintenance dose 3-2-3-2 and, predictably, she didn't poo at all on Thursday and yesterday (Friday) kept running to the toilet and complaining that the poo was hard and not coming out.

The problem, I think, it's that the poo isn't hard per se (we're not talking rabbit pellets here) but that if the poo doesn't just flow out of her when she sits on the toilet, she interprets that as "hard poo" and then withholds because she thinks it's going to hurt. It's like she literally has no experience of a formed poo, and so withholds any poo that doesn't just flow out of her.

She had seven sachets yesterday (usual three plus an extra two once she started complaining and a further two before bed) so there's no doubt in my mind that all she needs to do is strain to get this small blockage out by the exit, and the backlog will be basically water. But she won't. Claims she doesn't know how to strain, but I think she's fibbing and basically withholding instead because she doesn't want to strain. Again, afraid it'll hurt. I won't lie, I'm finding this SO frustrating because she's making things so much worse for herself (and I know more than most, being a sufferer myself). We also stayed in all day yesterday, and will have to do the same today, and may have to cancel a visit to see family tomorrow, because a car journey of one hour plus with a child stuffed to the gills with Movicol is... dangerous, obviously.

So, since my hunch is this is a psychological rather than a physiological problem (and let's just say she's a very very stubborn character hmm) how do I proceed from here? Cut up an adult glycerine suppository (because you can't buy childrens ones OTC, right) and shift the bottom blockage that way?

She hasn't been seen at the outpatients gastro clinic in over a year, so I'll have to see about getting an appointment to talk things through with a doctor, but that could take months, obviously.

Anyone else with any experience of successfully reducing a dose over time? And/or psychological issues due to being used to liquid poo?

littlemaemae Sat 02-Jul-16 17:34:28

Hi, I'm sorry you are having such a horrible time.
I can relate to the poo not 'flowing out' when she sits and tries and the horrible splatters from the movicol.

Sorry if you have mentioned it and I have missed it, but have you tired her on a small dose of picosulphate or Senna daily or a few times a week?
It's a stimulant and contracts the bowel forcing it out rather than turning it to sludge which is messy, unpredictable and down right miserable.

My dd literally can not poo on her own and I have the same experience with movicol, it just doesn't make it happen as it should and the poo is never rock hard like people would imagine.
If the stimulant works you could reduce the movicol down to keep her poo a consistency you are both happy with, but without the mess.

My dd starts school next September and I am already worrying about this issues.

You have all my sympathy as I know it is not long and you must be desperate to find a solution. flowers

littlemaemae Sat 02-Jul-16 17:38:57

Oh and you can buy children's suppositories OTC but I think that would be a last resort.
I found the stimulant helped my DD get over the fear because it forced to to deal with the uncomfortable sensation of needing to poo and having no choice but to let it out. If your DD's issues is psychological, then regularly repeating the process and getting used to it and realising that it is coming out and making peace with it could be the key to getting over it. It will be relatively mess free and predictable and she might feel like she has achieved a proper poo by herself and feel very proud like my dd does.
Senna liquid can be bought OTC.

Is dd under a local continence nurse? Do you have any practical support?

blackteaplease Sat 02-Jul-16 17:42:22

Yy to sodium picosulphate. Dd was on 4 sachets daily but it was too runny and she was going 4/5 times per day. We know have 2. 5ml sp and1 movicol daily and dd I as now doing 1/2 more formed pools daily.

No tips on wiping though. We just keep wipes and spare clothes at school in case it is really bad.

blackteaplease Sat 02-Jul-16 17:43:13

Sorry for typos, am feeding ds2.

JinkxMonsoon Sat 02-Jul-16 19:41:15

Oh that's interesting. I must admit I'd been wary of adding any stimulant laxatives to the mix, because I know they can cause horrible gut cramps and I worried about them making her bowel movements more urgent and increasing the risk of accidents. As it stands with her three Movicols a day, she doesn't have any accidents and has a bowel movement (or sometimes several) daily without any problems. The problems only start when I try to reduce the dose.

But maybe picosulphate + Movicol is an option. It's something I'll have to mention when I get an appointment with the consultant. I guess I'm scared of the unknown though. Movicol works well enough as long as she has three sachets.

She doesn't see a continence nurse Little, but she did see a consultant at his gastro clinic every six months or so. Last time, however, we saw a different doctor who said she'd give us an open ended appointment rather than schedule one for us. That was 14 months ago! I just didn't see the point of making an appointment since things were ticking along well (apart from aforementioned issues) but now I think we need to decide which is better: three Movicols or fewer Movicols + a stimulant.

Thanks all. Still no closer to considering a medication-free life though. Oh well, I can't imagine ever not needing the stuff either grin

NattyTile Sat 02-Jul-16 19:45:26

Could you get her to sit but then do things like blowing bubbles or those windmill things, or have a cup of water with washing up liquid in and get her to blow until there's an ocean of foam on the top of the cup? Anything really that'll get her slightly straining without thinking that she is.

And for school, would wet wipes or moist toilet tissue help at all?

JinkxMonsoon Sat 02-Jul-16 19:49:38

She hasn't started school yet, but I have considered sending her in with moist toilet tissues. Not sure how the practicalities would work though, like would she block the toilet if she used too many, and where would she keep them? Wouldn't be practical to have to leave the classroom to access her peg (the coats, etc are hung in the corridor) every time she needed wipes. And if they were kept on a high shelf in the toilet, either the teacher or TA would have to hand them to her. And they're obviously quite keen on Reception pupils being totally self sufficient in the toilets. It's something I can speak to the teacher about when the time comes, I suppose.

littlemaemae Sat 02-Jul-16 19:51:23

I'm glad to hear that she is managing to go regularly.
WRT the wiping, I know it might turn out to be expensive but what about using face tissues that have the balm on, if wet wipes are making her sore. Normal tissue just doesn't work on my dd it needs to be wet because of the stickiness.

The GP should be able to tell you if you have a local continence team and they can refer you, they are there to call whenever you need a bit of support or advice, instead of having to wait for the next consultant appointment.

I had the nurse send a letter to nursery outlining DD's needs and reminding them they had a duty to cater for those needs in any way necessary.
Maybe you could have a chat with the school nurse before the school closes for the holidays.
She might have some good ideas for how to deal with it in school and put you and DD at ease.

littlemaemae Sat 02-Jul-16 19:53:30

They are legally obliged to make an area that she can get changed and have everything she needs to hand and a bin for wipes etc.
Look into ECHP educational
Health care plan.
It may be applicable.

JinkxMonsoon Sat 02-Jul-16 20:05:34

School nurse is a great idea, I hadn't thought at that. We have a visit/play session next week, so I'll mention it.

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