Tips on finding a maintenance dose of Movicol

[8019joanne]

Hi I'm new on this forum and struggling with a problem the professionals we see can't seem to help with...my daughter is four and half years old, just before her second birthday she had two bouts of constipation and began to stool withhold. The GP recommended movicol long term. She continues to withhold to this day. In all this time we have never been able to find a maintenance dose for her. By this I mean we have an ongoing problem of soiling in between bowel movements sometimes once, sometimes several times a day. Yet other at other times weeks can go by and there's no soiling in between. I think its unlikely its leakage around retained poo as she been on movicol for so long now and various professionals have felt her abdomen and say its seems fine. My GP thinks we should up the dose but the Peadiatritian (specialises in urology as she has been getting recurrant urinary tract infections due to stool whithholding) says her poo is too soft and we should reduce it.

Her poo is ALWAYS on the soft side whether she has two or three sachets a day, type 6 on the bristol stool chart. Everything I've read suggests she's getting too much movicol but I'm so confused that on the same dose we have such different results.

I have recently read a book by an American child psychologist who specialised in encopresis and he mentions some children can be really sensitive to movicol and to try measuring the dose in teaspoons rather than giving a whole sachet but he doesn't really elaborate beyond that.

I've not come across anyone with this problem but has anyone else experienced this regular soiling or anything similar, do you measure out the dose more exact? I'd be so grateful for any advice.

[KCM23]

Your post is so familiar it's almost as if I could have written it myself !

My almost 5 year old son has been exactly the same until the last few weeks.

A bit of background about him - developed severe constipation as soon as solids were introduced at 5 months old. Tried various different diets, no dairy, gluten, lots of fruit and veg, what seemed liked gallons of water but nothing made a difference to his straining. He would strain for hours on and off and only produce a tiny poo each time. Over a few days he would eat less and less until he was hardly taking anything in.

When he was about 18 months old, I took him to the gp who prescribed Movicol. To start with we were on 3 sachets a day and I have slowly weaned him off so now he has one sachet at breakfast time. His diet is packed full of veg and fruit (has to eat two pieces of fruit before he gets any treats at mealtimes) and has a special water cup with measuring lines so I can see how much he is drinking. He gets a sticker if he finishes the whole lot and once he has 20 stickers he can choose a toy from a special box I made up with cheap and cheerful toys in it (think pound shop toys).

I have also started a regular toilet time half an hour after each meal (as recommended by others on this site) - he gets one sticker just for sitting on the toilet and having a go, and an extra sticker if he actually does a poo. This regime has stopped the frequent soiling, which I am so pleased about, but it has been a long road and I suspect whilst we are in a good phase at the moment, I'm nervous that this is just a phase as well.

Sorry for the long post, but it can help just by knowing you are not the only person going through the same thing - the people on here are so friendly and supportive.

There is also a Facebook group - Encopresis Support U.K., join that as there are so many helpful suggestions there too.

Kirsty x

[8019joanne in reply to KCM23]

Hi Kirsty thank you I appreciate your comments and empathy! it sounds like your son has a fantastic diet which must be so frustrating for you. I know how much work and energy we put into feeding my daughter as good a diet as we can. I have been using a star chart but need to revamp to something similar to yours. She does sit when asked but I think we could tighten up a bit on our timings of this. Since Sat we have been reducing her two doses of movicol by 1/4 after its been made up, no poo on Sat or Sun but lots of accidents. This morning we got a more formed poo so I'm thinking if she goes every other day and the soiling reduces then we are on the right track but like you I wonder how long will it last? I will look at the facebook page you suggested as well

[SallyandPaul]

We have had exactly the same issues with our eight year old daughter, she has been on movicol for nearly five years. Been to nurses, doctors, consultants etc . The most helpful thing I found was a a YouTube video by a nurse Sandra Hanson called tackling childhood constipation with macrogol (movicol). It's brilliant but getting the dosage right is a nightmare. She still has at least one accident a day but with maturity it has improved. Just wanted to say that I so empathise. Good luck. Xx

[8019joanne in reply to SallyandPaul]

Thanks SallyandPaul I found the video helpful, I just find none of the professionals really take me up on the constant soiling thing or mention it except now I've been researching any parent with a child on movicol has the same experience. When I cornered my GP he did suggest she needed more (than 2 sachets) as it was a sign her bowel wasn't emptying properly but I've not had much success and this is the same GP who thinks three sachets a day is a lot!? I am going to push on with aiming for a formed poo rather than a mr whippy every day, and lots of accidents, at this point I have absolutely nothing to lose

[77mummy]

Hi, watch this video. It is very useful and does explain things that I found GP's didn't. It may help?

vimeo.com/179497116

[8019joanne in reply to 77mummy]

Hi thank you I've watched this a few times now to take it all in and its really easy to follow. So, again there is a mention overflow soiling rather than soiling because the dose needs adjusted - so strange that most of us parents are experiencing this same problem but it doesn't seem to exist in the medical world

[SallyandPaul in reply to 8019joanne]

I know exactly what you mean. We have all done the disimpaction often enough to know what is overflow soiling and just too much movicol but getting that dose right seems nigh on impossible!! And I so agree that so many medics just don't really get it xx

[ANormand]

I've been following this post with interest as we are also having difficulties finding the correct maintenance dose. My 5 year old son went through a disimpaction regime during the summer holidays but is still having quite large, loose soiling most days. This is despite doing at least one well formed poo a day. Having watched the video, I've been reducing a two sachet dose by a teaspoon every few days but it's not proving very successful. I'm really confused as to whether this is due to too much Movicol or the leaky poo because there's still a blockage. A recent examination by the GP suggested there isn't anything still stuck in the bowels but I would be hoping we'd see an improvement by now. We have a toilet routine; a high fibre diet and we try to get my son to take on as many fluids as possible. The paediatrician said it would take 6-12mths to fully sort but gave no indication as to what we should see in terms of progress over time. We should also be receiving an appointment to see specialist nurses but are still waiting for this. It's quite frustrating as I don't think all GPs have the specialist knowledge to give the most appropriate advice. Any comments gratefully received!

[8019joanne]

I only recently heard about adjusting the movicol using measuring spoons, once in the past we were encouraged to up the dose to three sachets a day, the soiling stopped. For a few weeks. Then started again. Then stopped and started and stopped and started. No matter if she had one sizeable bm most days the soiling happened randomly on and off but mostly on. I'm 7 days in to reducing the am and pm sachet by one tablespoon just to see what if any effect this has. I'm aiming to see if we can be guided by the bristol stool chart rather than the soiling. My daughter has had a bm each day since Monday, its still very soft. She is still experiencing four to five soiling accidents daily. Bizarrely yesterday I found her on the toilet at 7am having a bm. No prompting. Then today she went to the toilet four times herself including a bm again I didn't need to prompt. Her friend was visiting today, I went upstairs to check on them and could smell poo, fearing the worst I found them in the bathroom with a thousand Barbie dolls scattered everywhere. My daughter proudly told me she'd done a poo and her friend said she'd helped her wipe her bum! I was speechless.

[SallyandPaul in reply to 8019joanne]

Ha so been there! We have been struggling with this for nearly six years, identically to all of these comments. Last night my daughter went to brownies and after one small accident sorted herself out. However when she got home there was quite a lot in her knickers ,she obviously couldn't be bothered to go and sort herself out again, having too much fun bouncing around on a space hopper!! I'm now worried that she'll have another u.t.i as you can imagine the mess that that created!!

[8019joanne]

Just out of interest have any of you heard about Dr Daum? usatoday.com/story/news/nat...

[Allyem1976]

I need help too! On maintainence dose of 4 sachets a day ; 2 morning 2 evening as prescribed by consultant when we were last admitted 2 weeks ago. Very soft, mushy bordering on liquid poos a day up to 6 times. Soiling. Diet is good. Added extra fluids, flaxseed on cereal in mornings, extra fruit and fibre. Come home from her dad's last night ( was supposed to be there all weekend) as vomiting again. Watery bile. Up all night. Consultant says this is caused by anxiety not constipation. She can't be constipated or impacted as she is going everyday! Now I am back in that vicious circle where I can't give her a laxative in case she's impacted as she's throwing up! But I can't stop the vomiting unless we go back to a & e so they can give her anti sickness. Such a nightmare. Impacts on school, daily life, my work. I'm a single parent. I am losing the will to live.

[Misty10 in reply to Allyem1976]

Hi try taking her off the wheat not too much fruit as it contains sugar lower her milk intake and see if the sickness stops. My LG was the same but no more sickness since I've changed her diet.up her water intake. Hope this helps feel your pain.

[Misty10]

Yes I could of wrote this too my LG between 5 and 6 on the poo chart.what I do is up her movelcoil only to six then drop it down 1 a day then increase it up to 8 she can have over a period of four days.also up their fluid intake.its so frustrating I feel so alone.

[Misty10]

Back to type 7 on four sachets. A mth after disimpaction being on eight sachets everyday for a mth.when does this stop.helpless so unfair on the Littleones and very uncomfortable for them.