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Dd on movicol for a long time now, advise/reassurance needed

29 replies

Cupcakemummy85 · 01/02/2013 18:57

Hi all. Dd has been on movicol since she was around 9 months. She is nearly 19 months and we've battles with constipation for such a long time. She drinks a lot of fluid, juice, water, milk, squash, whatever I can't get her to drink, it's not easy though. Her diet is pretty good when she is doing a lot of poos and goin regularly. If she is blocked up she goes off food and fluid really quickly. I've seen the doctor so many times and we r goin back Thursday. She is on 2 sachets a day and I tried to lower to 1 and 1/2 like the doc told me but it has blocked her up again. It's like her body gets used to the movicol when we up the dosage. I really don't understand. Is anyone else going through the same or has any advise. Our conversation with dh and grandparents are litreally about dd poo lol and I would really like to get it sorted. Most kids have a cup of orange juice or a load of cherries and will have the squits or days but it doesn't effect my dd. I would understand if she ate crap like nuggets and crisps and chocolate but she doesn't.

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kathryn77 · 01/02/2013 22:08

My four year old has been on It for 12 months. He has 2 a day and If we miss one dose he gets sO c

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kathryn77 · 01/02/2013 22:10

Sorry! Constipated it's horrible. Went tO drs this week tO check we should continue and she said yes until he eats better and is old enough to understand. My little one is fussy but is getting better .

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Justaoneoff · 01/02/2013 22:30

My DD has been on movicol since she was about 18 months. She is now coming up to three and a half. We found that she used to scream when trying to poo, and she would then hold it back and make the problem worse. It was really distressing. We hoped things would improve once she was potty trained, (this had been the experience of a friend with her child), and tried to drop the dose when she had been out of nappies for a few months. Back to square one.

Even with the movicol she doesn't go every day, but at least when she does she isn't screaming and crying which would be the alternative. She drinks loads of water and has plenty of fruit and veg so diet is not the issue and never has been. I've no idea how long we'll be on movicol for, but if it helps I'm happy, having been assured by the doctor that there is not a problem with using this medicine for a long time.

It's probably not what you want to hear, but they're all different, so you might be luckier than us!

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attheendoftheday · 02/02/2013 14:07

I have a 20 month old who's been on movicol since 10 months, you are not alone!

Have you considered that your little one might be withholding rather than constipated? I.e. pooing has hurt them in the past so they now hold the poo in, which makes it hard to pass and reenforces the cycle.

I found this book useful.

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squalorvictoria · 02/02/2013 22:23

Hi, my DD has been on Movicol since she was 7m and she's now 16m so I do sympathise.

Are you seeing a paediatric gastroenterologist about the constipation or just your GP?

I don't think there's any point in trying to reduce the dose at the moment. The consultant who sees my daughter is always quite firm that reducing the dose is pointless right now. My DD is on 1.5 sachets a day, going up to 2 if she goes a day without pooing.

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FlipFlopFloss · 02/02/2013 22:30

10 months is not that long in movicol terms tbh.

My DD almost 12yo has been on it for almost a year now and we are still only in the first stage of loering doseage and its causing problems. Her paed has said this is normal and to expect DD to be on movicol for a very long time. I suppose it depends on the underlying reason but in our case we have been told the bowel muscles need to retrain and this is a very long process. The Paed also said that one serious back up or a virus causing the runs for a day or 2 can undo months of muscle progress. I am no expert but everything I have been led to believe is that movicol is a very slow and longterm process to some kind of recovery, but that it does work.

My own experience is that I am on adult movicol and have been for 3 years. It has transformed my life. They dont expect me to ever come off it. I am on 2 to 3 sachets a day currently which is slightly up on what I started on 3 years ago. However I do now find that if I skip a day I am not completely out of synch anymore. In the 1st year if I missed a dose I knew about it. So there is improvement.

Hope this helps.

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FiveGoMadInDorset · 02/02/2013 22:35

DD has been in senakot/lactulose for over three years now.

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ItsOkayItsJustMyBreath · 04/02/2013 17:54

Ds 2yrs has been on movicol (up to 8 sachets a day) and senna for over a year and movicol on its own since he was about 10 months. We are currently undergoing consultant care to get to the bottom of what's causing his constipation. If you can, try to look when your DD is having a poo, does she push and strain or squeeze her buttocks together and try to withhold? Ds has a partial prolapse when pooing as it takes so much effort.

Also keep a diary of pooing and food and take to your GP.

Good luck.

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Cupcakemummy85 · 04/02/2013 21:14

That's a good idea, keeping a diary. Thank you. I will start tomorrow and take it Thursday. I just feel sometimes that GP's do not take me seriously and they just say keep going and try and reduce the dose but whenever I do it has a terrible effect. 1 sachet used to b enough for dd but now two keeps her regular, where as a few weeks ago it was flushing her out. So what is going on? I don't get it. A bit fed up if gp's now, the last one insinuated it was the food I gave her. He even made me cry!!!! Prat!! Lol

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squalorvictoria · 04/02/2013 22:49

You really must insist on a referral to a consultant. I really don't think your GP understands enough about constipation in young children.

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BoysAreLikeDogs · 05/02/2013 11:46

Yes do get a referral

In the meantime here are some things, dietwise, to think about. All anecdotal, not medically trained, just a parent with experience.

Avoid weetabix, banana, white bread, these can produce hard stools that are difficult to pass. Avoid excess milk too for the same reason. Lots and lots of water.
Lots of raw fruit and raw veg, too. Carrot sticks and cucumber sticks with a home made dip work for my kid.

Don't be afraid of butter/oil, use of these can ease the poo along.

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squalorvictoria · 06/02/2013 09:51

Funny you should mention bananas Boys, I didn't give banana to DD ever, and when I mentioned this to the consultant she told me to start giving them to her because she needs the potassium. I don't let her have loads just in case.

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ItsOkayItsJustMyBreath · 06/02/2013 13:29

Boys, I'm not sure if this is right but I read (on internet hence my disclaimer!) that toddlers shouldn't have too many wholegrains as their stomachs aren't up to digesting them properly so whilst fruit and veg is great, brown bread, pasta etc might not be the best thing.I tried cutting out stuff that we think may block you up (bread, porridge, rubbish) but it didn't make any difference and the consultant said it wasn't about that really but then ds may have a different problem to the OP.

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Gracie123 · 06/02/2013 18:10

My son was on 7 sachets of movicol and three doses of lactulose daily and still only going to the toilet every two weeks.

We finally saw a consultant who specialised in this and they dropped into the conversation the GAPS diet might help, seeing as how he has autism too.

After a bit more research we tried it, and within two weeks he was off all laxatives and going to the toilet every day (sometimes twice) for the last year Grin

It's not a diet for everyone (super hard work) but you might be able to incorporate bits of it. We are sugar free and grain free, and if he has either the tiniest bit of either of those he doesn't go to the toilet for a couple of days Sad

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Cupcakemummy85 · 06/02/2013 21:01

I've never heard of that diet before. Tomorrow is the doctors appointment. I think I'm going to ask to see a specialist as this isn't normal as I feel it's gone in too far. I just hope the gp listens to me this time. All i got last time was a shit printed out leaflet.
Just feel sorry for all our poor children that have to go through this horrible ordeal. Poor little things.
I've heard different things about which foods are good and bad. What would b an ideal day of food then, I'm very interested to compare it to my dd diet.

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squalorvictoria · 06/02/2013 22:38

Well my consultant told me that I should be giving DD brown bread, so opinions clearly differ!

Definitely ask for a referral OP, not least because - diet and medication advice aside - they might want to rule out bowel disorders like Hirschsprung's disease. Your GP isn't qualified for any of that.

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Lolaismyfavouriteandmybest · 06/02/2013 22:53

My dd has been on Movicol for 5 years! (since she was 18 months old) She's on a very low dose but we can't quite wean her off it. it hadn't really occurred to me that it had been that long until I saw this thread Blush

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Cupcakemummy85 · 07/02/2013 13:17

Well the doc said to increase the movicol and they will c my dd on a regular basis. They don't think she needs to see at pedeatrician at the moment and said its not her diet or the milk that's constipating her. So that was all very confusing. But tey r the professionals so I guess I will have to go with it. My dd is a little bunged up today I think because she seems super irritable and isn't eating a lot so hopefully three sachets should sort her out.

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MaitreKarlsson · 07/02/2013 21:19

Hi, just to post my bit of advice - we had similar problems with my DS and luckily after several painful months (clueless GP kept insisting more fruit & veg needed, which i knew was utter bollocks) discovered his severe constipation was due to an intolerance to cows milk. He loved milk and drank a fair bit, but it was bunging him up! Switched him to an alternative and have never had a problem since. He was on movicol for about 2 months only. Try dropping things from the diet and reintroducing.

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squalorvictoria · 08/02/2013 13:38

See, personally I don't think you should be eliminating things from a toddler's diet without supervision. Which is why a referral is needed! Could you maybe see a different GP, Cupcake? I find it astounding that your GP agrees there's no dietary explanation for your child's constipation, but isn't willing to make a referral to investigate what IS the problem! I think that's negligent.

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Cupcakemummy85 · 08/02/2013 21:07

Wet seeing the gp in three weeks so I think I might ask a few more questions then. Thegp sai it's just very common in children this age. But I'm worried my dd is scared to poo as everytime she does a poo she comes over to me and says poo poo and then wants a cuddle. She doesn't do a lot which makes me think she might be trying to withhold. I'm very worried about this as I keep reading on mums net it's a big problem!

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MaitreKarlsson · 09/02/2013 12:05

We ended up with a private paediatrician in the end who advised us on the cows milk thing, so in our case it was supervised. He was very keen that DS did not begin to associate poo with pain because of future problems. Cupcake, up to you but I think 3 weeks is quite a long time to leave it when it's as severe as you say...

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StuntNun · 09/02/2013 12:07

Off topic but how do you get them to take it? DS2 (6) just gags on it. I've tried mixing it with milk or Ribena but he just can't won't drink it. In the end I have up and went back to lactulose but I'm sure that's nowhere near as effective.

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Groovee · 09/02/2013 12:16

I'm currently on 2 sachets of movicol a day due to chronic constipation. Desire having high fibre/plenty fruit and veg and little fat. I get bunged up with white bread stuff and pizza. So don't eat them. I've been on them since feb 2011 after the surgeon said I had chronic constipation.

My GP has changed my prescription to laxidoo. Such an terrible name. :-(

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Cupcakemummy85 · 09/02/2013 12:29

To be honest I think I might just go in on Monday, dd has a rash so I might just go for that and drop into the app about dd constipation. Very very worried now as I'm worried she is trying to hold her poo :(
None of the GPS at my surgery seem to think its a problem I've nearly seen them all. Even my dh doesn't think is an issue. I'm pretty much alone on this one.
What do I do if dd is holding her poo and I would I know. She dd a huge one this morning I discovered when I got her from her cot.

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