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Getting worse on Movicol, what are we doing wrong?

Thank you for sharing your stories, I’ve read some and although it makes me so sad to hear other people are going through the pain of this too I am grateful that You have shared them. My son is 8 and we have been trying to cope with this since he was 3yrs old. We’ve tried everything- seen GP and community continence specialist nurse and now Paediatrician- but no better. School are very supportive, separate toilet available, he’s allowed to go whenever he needs to, has a box in there with everything he needs to change. We’ve been doing regular toileting after meals at home for years. He’s back on movicol one sachet a day but it’s getting worse. He’s now soiling 3-4 times a day and regularly soiling at school (before it was usually only at home with weekends and holidays the worst). He says he knows when he needs to go but doesn’t want to stop what he is doing but I am not convinced. I think he has just learned to say this as perhaps he thinks we’ll stop asking him to go. This morning we have skipped the movicol as i am not convinced it’s helping. It’s impacting on what we do as a family, what he can take part in - despite our best efforts to make sure he doesn’t miss out. A friend wants to pick him up from school to take him to a birthday party for me which would be an enormous help but I can’t risk it in case he has an accident. I just don’t know what else to do.

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I can fully empathise with this, and my daughter's only 5 1/2.... But she doesn't go to anyone's houses after school in case she has an accident. I get so stressed when we have playdates - especially at other people's houses. Public transport is especially traumatic (I don't drive)... We are in a similar situation but my daughter wets all the time and soils 3 or 4 times a day (she never says she needs the toilet). We are on movicol and sennacot. We were told that movicol loosens everything and senna makes the bowel contract to help push it all through. To be honest I've noticed zero improvement, but it might be worth requesting a "stimulant" like senna to see if it helps. After breaking down at school pick up one day (made a bit of a scene..... Cringe....) I had a meeting with the lovely senco and explained how it was all affecting our family. She suggested looking into waterproof pants. I checked with the continence nurse to see if this was frowned upon or not and she said they are fine as long as they still make the child "feel wet" - not like nappies that suck it all away... Anyway, I've bought a couple of pairs that are suitable for wetting and soiling and it has really really helped with my mental well-being. She is still wetting and soiling, but no one else needs to know about it.

It really is so so hard for everyone.... Good luck xxxxx

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Thank you, that’s really kind of you to message. Where did you get the pants and what are they called? We’ve tried senna but that led to even more accidents. It’s heart breaking, no one ever invites him to a play date and I do wonder if it’s because of this, although both he and the teacher say the other children have never said anything g to him. It’s not like I don’t have other children round to play - although that is enormously stressful too as he often has accidents when they are at our house. At age 5 our son really did respond to lots of praise for just going to sit on the toilet after meals. I gave him a ‘token’ each time and he exchanged them for TV time. Expect you’ve tried all of this but thought I’d mention it in case not. Keep strong. Xx

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Hi there

We have very similar problems to you and you son. My son is 10 now and has had soiling problems on and off since3. I too was very skeptical about movicol. But since watching a video recommended by a poster on here we are back on it, 3 a day at the min to clear out before we find our maintenance dose. I am still learning re all of this so someone more knowledgeable will reply soon probably but i would

recommend the videoto watch. If you google “Poo Nurses” on you tube, it will come up, Its two experienced nurses who run a clinic in south of England. They explain whats happening in the body brilliantly and your son could watch it too so it might help him

understand whats happening. Sending love and hugs to you both from us, its a horrible problem which seems so unfair but always remind him its something that is happening to him, it doesnt define him...someone on the forum said this to me and it really helped me xxx

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Hello, I'm following your post as I'm in the same boat. My daughter has to wear pull up nappies at school as she soils. I have bought the pants (nearly £10 a pair! They are noisey! But ahe likes them). My marriage is on the rocks from the impact of this strain as its effected my mental health and how we function(or not!) as a family. I want to know why my daughter suffers (she also has chronic eczema) constipation and stop being fobbed off with Movicol/laxido/senokot and steriods for eczema.I firmly believe that movicol causes loss of bowel control and leakages not 'overflow' or the child. I have got her a Vibralite watch which has a silent vibrating alarm it has made her go to the toilet lots😀but they are expensive and the first broke in a week. Sorry for not offering an solutions! You are not alone, keep going! X

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Thanks for replying. I agree with you. We have tried movicol, laxido, lactulose and senokot and I think it makes matters worse. Every time my son had been examined no doctor has ever found evidence of constipation or impaction but having said that the definition for constipation is quite broad and he did in the past show other features so the consultant thinks that he may have had constipation in the past and withholding but that now it’s more behavioural so so has taken him off movicol - see other reply. The alarm sounds like a really good idea. There is also a book I am going to get from the Eric website. We will all get there in the end but it’s one hell of a tough road.

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Hey,

Just reading your post as you mention your daughter also has eczema as well as soiling. Have you looked into her diet as my friends daughter had this. It wasn’t impaction at all. She was allergic to milk and soya. Nothing showed up in blood tests. But cutting them out completely stopped both!

Also, you are right about what movicol does to the sensation of needing a poo! I know for a fact that movicol removes the feeling because (and this might be TMI) I was on the adults version And I was caught short myself! Lol. It was horrible! Didn’t feel it coming at all! So overdosing the kids on it causes soiling as my daughter who was 5 years old also experienced it.

Xx

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I don't know if this helps but I do find movicol is quite hard to get the right dose for the child.

Give you an idea I thought my son was to wet. I tried to reduce the dose the accidents got more frequent and worse and he stopped going on various day's . We were told to put his dose up by the paeditrian because she thought he had overflow and now he is a 5 to a 6 on the Bristol chart. He is going alot more and the quantity coming out it not the best but the accidents are not as severe and less. I find the wetter my son is it tends to be better for him which seems odd.

I would be tempted to try a higher dose for a period of time and see what happens.

I was in your position where it was getting me down and didn't know what to do and we couldn't do anything. I resorted to putting my son into pull ups and I found it gave him and myself freedom. Personally I struggled initially to take him out in public as it was stressing me. My mum did it and it went better than I expected and it gave me the courage to try. My son has got some freedom back and I think that has helped the situation.

The other thing is I tend to be honest with my friends what is happening with him and that it makes me apprehensive and low. I have found they try to support me and keep an eye on him and help indirectly. This is quite often where I take my son for play dates. But taking that initial step is hard. Thinking of you

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Thank you so much for all your replies. I didn’t get a chance to reply yesterday as I managed to get an appointment to see the Paediatrician. She has actually suggest we stop the movicol and completely back off and let my son take control to see what happens. No reminders to sit on the toilet etc. She thinks that he does have a certain amount of control and does get a signal to poo but chooses to ignore it. I asked about CBT but there is no service to provide this. I am actually pleased that she has taken him off the movicol but am very nervous of backing off on the regular toileting regimen but we will see. My son has decide to have a poo campaign and he’s designed a logo and written an action plan and designed his own tally chart - the consultant suggested he keep a diary to show her at the next appointment in 3months. But of course this morning he was so busy writing his campaign he didn’t do to the toilet before school. It was the hardest thing to leave him to it and not nag him to go to the toilet. Let’s see what happens...

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This exact same situation happened to my daughter. She was on two movicols a day. But all of a sudden, she started soiling herself! It didn’t cross my mind about reducing the movicol until I came on here and a mum suggested reducing it!

I reduced it to one a day and the soiling stopped!!! Then reduced it to 1 every other day... she now poos nicely once a day and if it becomes too loose or hard again, we adjust it daily. Sometimes she has one a day, and sometimes we miss it out.

Xx

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So far so good. My son has really taken responsibility and is doing really well on no movicol. Only 1 episode of soiling in the last 48hours and he has actually got a signal and gone to do a poo this morning! Still early days but I am hopeful. Thanks so much for the support and replies, it’s really helped.

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So glad to hear.... x

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Can i ask how you reduced to one sachet every other day? We have been advised to do this and I don’t want to do it too quickly!

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As soon as it was suggested I literally didn’t give her any the next morning! She would usually have had two. Her soiling was quite bad so a complete break for a day was needed I think. Then the following day I gave her just one. The soiling stopped on that day. I think that 1 days break helped a lot. Then her poos went to nice soft, yet solid consistency. I then just realised that I needed to manange her symptoms and adjust accordingly. She’s been through boughts of only needing 1 every other day and then gradually it gets a bit too hard and then we go back to 1-a-day. If she’s not eaten much fibre and starts to get constipated I’ll give her 2 on that day.

She’s never soiled since and I never let her get constipated.

I hope this works for you... it’s a total misery for all. I feel for every parent on here.

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Our son, who is now 11, has been on Movicol since he was 4 with varying success. We've never had more than two weeks where he's poo'd the 'magic' once a day and never gone more than three weeks without soiling in all that time.

Two weeks ago I decided I'd had enough. Our boy begins secondary school in September and I really didn't want him having to change for showers etc. So we saw the GP. I said I was almost sure Movicol was part of the problem. We just couldn't get the dose right to stop the soiling and get the 'one a day' bowel movement but I also explained that my sister only does a poo every four days (supposedly a sign of constipation) but it's a regular four day cycle and she's been like that since, well she doesn't know when!

My GP's view is that the one a day poo doesn't happen for some people. It's the regularity that matters whether that's every day or twice a week - if it's regular, normal and there's no discomfort it's your body's way. So he took our son off of Movicol. Two weeks in and he's pooing every 1 to 3 days - hasn't got to four days without a poo yet. They're a number four on the chart and no soiling.

It's early days and we're monitoring very closely as is our GP. I'll let you know how we get on. Our son has a heart condition so Movicol, the GP said, was helpful when he was a young boy (straining can stress the heart), because he couldn't tell us what felt different. Now he's older he can explain how he's feeling, what hurts, what's working so monitoring is easier.

I really think, if a child's been on Movicol for a while, it's worth a review.

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Hi all, really interested to hear others say the laxatives are making things worse. This too was my thoughts. My daughters been soiling since coming out of nappies - she’s now 10! I think the soiling has been worse since being on all the laxatives. Every time I go back to the paediatrician and say it’s worse, they say to increase the laxatives! Then it gets worse again. She was taken off movicol a while back but that was replaced with sodium Pico sulphate (as well as a really high dose of Senna she was already on!). Well the poo just got more and more runny and the accidents got more frequent and huge! After being called to school for about the 5th time in 2 months to clean up a particularly bad accident I thought enough is enough! After calling the hospital to tell them what I was doing I completely stopped the sodium Pico sulphate and reduced the Senna by 5ml (so she has 25ml now). That was 3 weeks ago and she’s only had one minor accident in that time (better than the 2-3 huge ones she was having every single day!). I’m monitoring her poo’s very closely and checking they are still soft and there’s enough coming out to empty her. There’s been the odd time she’s not poo’d so I’ve given her just a small bit of sodium pico sulphate that night only. I’m just hoping when I go back to the paediatrician they don’t feel her tummy and say she’s backed up again! But for now, I’m just monitoring the poo’s and keeping everything crossed!

So, my advice to others would be to reduce laxatives if you think they are making things worse, and just get to a point where the poo’s are soft and easy to pass, but not so runny they can’t hold it. Then monitor and there might be the odd day you think they need more. I just think everyone’s poo’s differ day to day depending on what they’ve been eating and drinking, so a dose that always stays the same doesn’t seem logical. I would speak to your paediatrician first though of course!

Good luck everyone! X

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Absolutely agree! 100%!!

Movicol/laxido is good for when kids are initially constipated and a small dose for maintaining good normal bowel habits. Too much and there’s trouble! But it seems to be recommended for kids who aren’t constipated anymore as the movicol has done its job! Yet we continue on with the same dose! And then when they start soiling ‘impaction and leakage’ is the first to be diagnosed when they aren’t even constipated anymore!

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That is so interesting that your GP said that once a day is not going to be the case for everyone. I find that very reassuring. My son is doing ok - the weekend was tricky with a couple of accidents but better today and yesterday. But overall so much better than before when he was on movicol. He has lost interest again and is not as enthusiastic as he was last week but overall I don’t blame him.

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I posted a few weeks ago about our 11 year old son who has been taken off of Movicol after 7 years on it. I had come to the conclusion that Movicol was part of the problem - he'd never had a break so we had no way of knowing if he was actually still constipated or if the Movicol was working on 'normal' poo (so causing him to soil). So I asked the GP to support us taking him off of it. GP agreed and gave me the option of putting him on senna if he became constipated again.

At the time I wrote we'd been Movicol free for a couple of weeks and very little soiling.

We are now a month into a Movicol free zone (went to GP on 12th June and it's now 15th July) and...little or no soiling for a month and poos are coming between 1 and three days apart! All number 4 on the chart. DS still can't actually feel the need to use the loo but he's a regular 'sit on the loo at 6pm ish' boy and feels the poo about to come then. He had his transition day at secondary school recently and had no soiling. He was so happy - his biggest worry was that other boys would know because of the need to change communally. So he's now so excited about starting his new school.

I must admit I find myself wondering why I didn't think about the possibility that our son no longer needed Movicol. Instead we kept assuming the soiling was constipation rather than the poo being too soft for him to get any sort of signal. Going to chat it through with the GP was definitely the best thing we did.

So, trust your instincts. If you think your child has been on Movicol or similar for a long time without a break and like to try a few weeks without Movicol then talk to your GP, insist that you want to try and ask them how long you should allow your child to go without a poo. You need to know when the experiment has not worked so you can get them back on asap. Check the poos - if it's not a 4 or 5 on the chart or if there's pain or your child says they feel something but it's stuck, start on the Movicol or similar again. Don't wait too long. But if you're lucky you may finally crack this.

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Thanks. This is really helpful to hear.

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The thing I don't understand is that no one has EVER checked my daughter to see if she is impacted. No one has felt her tummy, or given her an x-ray. They are assuming she is imoacted because of the daytime wetting issue and occasional soiling.... Because of this, she was put on laxido in April and since then she has soiled at least 3 times a day ("oh she must still be impacted then") they keep.increasing the dosage and now we're doing a second disimpaction..... Which I wouldn't have an issue with if someone actually KNEW what the problem was, but it just seems like guesswork. Agh............!!!

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