My little girl (she will be 3 in July) has been struggling with constipation for nearly a year. She was prescribed Movicol which helped and all was great. We managed to toilet train her in November and she was doing really well until a week before Christmas when she started having up to 10 soiling accidents per day. The GP thought this was overflow so asked us to continue with Movicol. It got worse and worse so she ended up back in nappies in January this year as she had since developed a fear of the toilet (linked to this issue) and we couldn't keep up with the amount of dirty washing she was producing due to it.
The GP examined her abdomen and did not think there was a blockage but advised us to try disimpaction anyway. We did that but there has still been no change. We have now been struggling with this for five months. The skin around her bum is constantly red raw and she is so upset about it because she is so sore. The GP kept getting us to play about with the doseage of Movicol for 2 weeks at a time to try to find the "maintenance dose" but so far it has made no difference.
We got referred to paediatrics and I explained that in addition to this, she also has a very bloated and hard feeling stomach in the evenings. They asked us to try her out on a dairy and soya free diet which made no difference. We are now waiting on results from a blood test to check for Coeliac Disease, Hirchsprung's Disease and thyroid issues. The paediatrician is now asking us to try different doses of Movicol again to see if it helps but it has been 5 months of trying different doses and I'm so stressed out with it as she is no longer toilet trained (and I feel like she never will be) and is constantly sore due to nappy rash from constant soiling. One day last week, she needed 13 dirty nappy changes.
Has anyone been through this with their child and has any positive outcome from it?
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Scottishmumma
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HiWe've been through this. Our journey will have lasted 7 years next month.
I would disimpact again fully and find a maintenance dose. Perhaps your daughter needs a stimulant too. Do you have a toilet plan in place? Regular toilet sits have really helped us.
You can disimpact as often as you like. We used to do it every school holiday so we knew he was poo free. I'm sure this helped too.
There's no easy fix for constipation and it's a long term condition.
My son (now 9) was doubly incontinent from 2.5 years old due to chronic constipation. He ended up with a distended bowel due to the constipation. He lost all feeling of needing the toilet due to the constipation.
It's been a difficult time and very stressful for us as a family so I know how you are feeling. It's awful. There isn't a lot of support out there for families going through this.
My son is a lot better now but has an overactive bladder. He's on Oxybutinin for it. This is a result of the constipation but the Paediatrician told us this might happen.
Don't give up. I've been where you are and I couldn't see an end either. You will get there eventually but be prepared for a long haul.
Look up the Movicol Mummies group on Facebook. facebook.com/groups/8607938.... There's over 8,000 members who are going through a similar thing. Once I found out we weren't the only family on this journey I felt a little better.
Thank you for this. I have requested to join that Facebook group. I never knew it existed so that is a great help!
We don’t have a toilet plan in place anymore as she ended up so upset about her accidents that she ended up associating all of the negatives with it and stopped wanting to use it. She has only started showing an interest in using the toilet again recently so we’ve sort of just been taking it slowly to get her used to using it again with no stress until she’s comfortable again (she’s still wearing pull ups).
I’m glad to hear that your son has improved! Thank you so much for replying to me. I’m at my wit’s end! 😩
Hi, just wanted to add further to last reply that the stimulant worked great for us. It’s short term but definitely improved things. Best of luck, I know it’s very tough going.
Thank you. My little girl’s paediatrician is due to phone me next week again for an update so will ask her what her thoughts are on giving my little girl a stimulant to help her ☺️
You could also try giving lots of water. We ensure our son drinks one cup of water before breakfast, has his Movicol, has one cup mid morning, a cup before lunch, one cup mid afternoon before snack, one cup before dinner and Movicol too. We then sit him on the toilet with a 5 minute tv show on our phone before bed (and before school). This seems to be helping, it’s slow but it is getting better. Our son is 4 years so you will need more water than this. Hopefully things will improve.
There is always hope. We were in exactly the same position as you are.
As a guide whe you do a discompaction programme. Half this rate and that will give you an idea where the maintenance should be when you start again. Leave it a couple of days before you change the dose. On some children half a sachet can have quite a dramatic impact. If you dont think your child is discompacting on just movicol i would be enquiring about stimulant drug ie senna/ senokot.
We tend to find Bepanthen nappy cream worked for us.
Pose the question about an xray, transit tests. This will give you a better idea how blocked they are. With my son when the gps examined him they said he was not blocked but an xray showed something completely different.
It is a very stressful time and i found this forum a great help. My thoughts are with you.
We started the journey when my son was four he is now eight. He is out of pull ups (he was seven)has now got sensation. He is of his NHS meds which i never thought i would see. But he sees a chiropractor and a function medicine practioner regularly and he is holding his own. Sometimes he goes backwarda very quickly and it petrifies me as i dont want to go back to that child and how it made me feel. There is hope and just follow your instincts. You know your child better than anyone. Good luck.
Hi what is her maintenance dose currently? This sounds exactly like my daughter a year ago (she's 3 now and been withholding since 8 months) it took about a year of two sachets a day to get some decent improvement from her so I really would keep it up and keep working on her using the toilet. I really do appreciate how frustrating it is changing dozens of dirty nappies that only have small amounts of poo in so keep calm about it all they can sense any frustration you are having. I got my daughter prescribed a barrier cream when she was really bad called 'Cavilon' specifically for irritation caused by incontanace and that worked amazing for her sore bum so see if her doctor can get that for her. Good luck with everything
She was just changed last week to 1 sachet per day so we’ve to try that again for 2 weeks then feed back to the paediatrician when she calls. We already tried a maintenance dose of 1 sachet per day when the GP advised it but I got the impression that the paediatrician is just upping her dose a bit at a time. I’m expecting her to tell us to increase the dose again next week. I’ll also ask about that barrier cream. Thank you for that 👍
We've had a big breakthrough over the past couple of weeks with her pooing on the toilet so she's doing really well at the moment. It's been a lot of progression and regression, taking baby steps each time. It's definitely not something that can be a quick fix. I would say she got a lot better when we upped her one sachet a day to two. I didn't wait for our GP to up the dose I just told him I'd done a lot of reading up on websites like this and I think she needs the extra sachet a day. He was happy for me to do that. With my daughter it was really about keeping her stools soft enough so she couldn't hold it in.
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