Difference of opinion with paediatrician

[HEfamily]

Hello! Bit of background. My 8 yo daughter has been on Movicol for 51/2 years. Up to now she has never been below 3 sachets and ended up having a manual evacuation under general. 6 months ago her new paediatrician prescribed senekot alongside Movicol and it changed everything! Within this time she has gone from withholding daily to going regularly and totally independently wiping etc. Never had this before. We saw him again last week but he wants to wean off senekot even though she has been fine even with a reduction of Movicol down to 2 sachets. I disagree and think that clearly the senekot is helping her and I want to wean off Movicol first. His argument is that Movicol is safer but I feel that after 51/2 years of hell and just 6 months of success the Senekot is clearly helping more. I am starting to think the Movicol has caused more issues but am aware if I make this decision I am going against his and most common advice! I would love to hear if anyone has any experience with weaning off Movicol? I can honestly say that the last 6 months have been like a different child.

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I would ask him to justify his opinion that a natural herb ie. Senna is not as safe as the Movicol.

[joannavince]

Same as my son been on movical for 5 years soiled daily. Then given senna and has been clean since xmas and can now feel when he needs to go. I've heard senna is only for short term use, not sure why. We go back to hospital end of May. Wondering what their advise will be. I would do what you feel is right

[Luella19]

I can totally relate to what you are saying. My daughter was on movicol for about 3 years, averaging about 1 sachet a day. She had periods of success but the soiling never stopped and could be daily and then we would have weeks when she was clean, very up and down. But still pooing regularly whilst the soiling happening (just pasty bits in her knickers) I often wondered whether the movicol was causing some of the soiling issues.

Finally saw a lovely paediatrician last summer and he too prescribed senokot to use with movicol. He prescribed 5ml daily and to use one sachet of movicol daily alongside and he suggested to up or lower the movicol dose if needed. The senokot improved things dramatically almost instantly, She ended up on 3/4 sachet of movicol and the 5ml of senokot for about 6 months, she was pretty clean this whole time but still with a bit of soiling. I then had a telephone consultation with doctor and he said to lower senokot to 2.5ml and to lower movicol as I saw fit. Ended up on half sachet. He also said we had to do a fairly strict sitting routine every evening after dinner, regardless if anything came out. We followed every thing he said.

During Feb half term she had vomiting and diarrhoea bug so I stopped all movicol and senokot. Then I just decided not to put her back on anything and see what happened...

Since February my life has changed (and gets) as she has not had any soiling! None! Not even a streak of poo! She is not taking any laxatives and does a normal independent poo in toilet either daily or every other day. The change is so wonderful and I'm tentatively optimistic that we are finally aged nearly 7 over her years of problems.

In my personal opinion I think movicol caused problems for her, I think it made poo literally leak out of her bottom in between normal poos. It was like the softer poo was hanging around and she just wasn't pushing it out, so it leaked out.

I think the senokot trained her to feel the need to push after years of trying to hold it in. Her poo was never that hard or dry to really need the movicol. I really have to watch that she eats well and gets ample fluid. And a couple of times her poos have been a bit big but not painfully so.

Our consultant said that he had prescribed senokot for up to 2 years before but I guess different doctors have different opinions. My GP also said that senokot at a low dose would be fine to use for longer than 6 months and she also said it was more 'natural' than movicol. I believe the concern is that long term the bowel can become reliant on senna as it's a stimulant laxative (whereas movicol adds fluid to the poo)

Perhaps ask if you can lower the senokot dose and then try lowering the movicol ever so gradually, a teaspoon at a time.

I really hope things continue to go so well. It's truly liberating for us at the moment...

Best wishes x

[saramoll]

I am in two minds about Movicol, my daughter was on it for years and I think it did help the witholding, but I never gave as much as we were told to. It seems to be the go to answer, and any problems you are told to increase the dose. But Movicol is a stool softener, rather than a laxative. It just makes the poo softer so it is easier to pass and harder to hold onto. The senna is a true laxative in that it stimulates the bowel to contract, and makes a bowel movement happen. I am inclined to think a lot of soiling on Movicol is due to the Movicol itself, and this is based on my experience not anything scientific. I suffer from terrible constipation myself and the Dr prescribed me adult Movicol. I have taken every laxative under the sun, and it was my worst experience. It did not cause me to need to go to the toilet and have a proper bowel motion, but I was continuously going and doing a bit ( every hour or more). But the worst thing was that I had almost no sensation of ' needing to go'. Sound familiar? The child with filthy pants saying to you ' I didn't feel it coming'? Seriously, I gave it up after less than a week, because I could not be confident that I wouldn't be the one with filthy pants. So I am never surprised to hear that children on massive doses are incontinent. I think laxatives like senna are not great in the long term as the bowel can become desensitised to them. But I don't know how long that would take. I would push the paediatrician to explain properly to you. Could you perhaps drop to every 2 or 3 days with the senna and see how that goes? While dropping the Movicol back as well.

[Luella19 in reply to saramoll]

Really interesting hearing an adults perspective on using movicol. Thanks for that.

[HEfamily]

Thank you for such kind helpful replies 😊. Our issue with Movicol has always been when it's reduced, the movements firm up then the psychological barrier kicks in leading to withholding. They keep telling me she is constipated which annoys me because she hasn't been constipated for years and I really believe that she is afraid of "normal" sized poo due to having it soft for so long. My feeling is that the Senna may help to break that barrier whilst reducing Movicol so I will try it. She only has 2 senna tablets per day and the paediatrician said this is way lower than many kids are on. I think I will go with my gut and if in doubt I have a cupboard full of Mocicol as a back up!! Thank you again and good luck to you all! It's hard going sometimes xx

[Georgina1475 in reply to HEfamily]

I went the other way my son was on 5ml pico and movical for years and he had a bug so I stopped everything until he was well enough. I then put him on 1 movical daily without starting the laxatives again. Admittedly his poo is very soft but he does go most days and we hardly have soiling I now wonder if I should try a small amount of senna instead next school holiday to see if we have better poos if that makes sense.

[Eloise8]

This is so interesting. My son has been on movicol for 7 years since he was 3 and apart from a few blissful months when he was 5 he rarely knows he needs to go and despite not being constipated always leaks. He goes regularly to the toilet (after breakfast and eve meal) and so doesn't have big accidents. I've tried lowering the movicol but he ends up constipated, leaks even more with the odd explosion. I keep meaning to try senna as one Dr did recommend it but not really for any other reason than to stop leaking by getting the last bit of poo out rather than for him to regain feeling the urge to go.

He went to GOSH for years - had every test going and saw a psychologist and has been discharged. This thread has given me a bit of hope that by changing meds he might improve. He eats virtually no fruit and veg despite me trying hundred of different strategies (he is an adventurous eater when it comes to all other food). I've bought some senna tablets online and will try to work out how to lower movicol and up that.

He was one one sachet a day and we cut it down to half and it's got worse since so we've upped it again.

[HEfamily]

It feels like it will never end doesn't it? 😞. I think my daughter's issue is that she has become dependent on the soft movements from Movicol. She is now on one sachet and seems ok still. She has a Brownie camp coming up and I am trying to get her to understand that she needs to be able to take care of herself when we are not around.

[Eloise8]

Yes that step is very scary. My son has had a one and a two night school residential and it seemed to go ok. He was due a 4 night one and I was very scared about that but the school became SATs obsessed and decided they couldn't possibly go for a cheaper PGL in Feb but the more expensive one in July. The 2 day one then costs as much as the 4 night one earlier. So I'm feeling sorry that my son doesn't get the full experience but it's a relief too.

I can honestly say my life is shit! Or at least revolves around it!

[Nearlygreen]

It's so hard to know what to do isn't it. Afraid I can't help much as I was told by my paediatrician to only use senokot once an impaction is cleared to help stimulate the bowel and then only for a few weeks. We get a lot of runny poos with Movicol but if we don't use it and just use senna we just get smudges of poo on the pants and nothing else, no proper poos! I guess this is where one size doesn't fit all - every child is different and what works for one might not work for another whether the medical book says it should or not!