I'm new to this forum. I have a 10 year old daughter who has been soiling herself since coming out of nappies. She has been on high doses of laxatives (prescribed by paediatrician) for a couple of years now but nothing seems to work. When she was younger she was oblivious to it and it didn't seem to worry her. Totally different now - she's really anxious, constantly in tears and it badly effects her school work.
I've been reading a lot of posts on this forum of people in a similar situation. I wonder if anyone has any success stories they can share to help those who are getting nowhere see that there is light at the end of the tunnel?
Thanks
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Louloubelle23
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Sorry not really. Our daughter is nine and this has been on going since she was three. Recently we had a referral to another consultant and has had two different types of scans. We are waiting to go back to the consultant who said that they may be able to inject Botox into her bowel to tighten the muscles so I'll post on line if they do and it works!!!
Oh that's interesting - not heard of that as a solution before. What sort of scans did she have? I suggested a scan to our doctor last time and she told me they would't do a scan, it would be an X-ray - and they don't like x-raying children! Seems ridiculous to me, I'm sure one x-ray isn't going to do any damage!. When we go back in July I'm going to try to really push for them to do something different! I don't understand why they think keeping on doing the same thing will give them a different answer. Isn't that a sign of insanity?!
Good luck with your daughter. Do let us know how it goes
So there are scans they can do then - not what the doctor told us! Do you mind me asking if that was through the NHS or did you go private? I'm willing to pay for anything the NHS can't offer if it helps!
No definitely not private, NHS. She is having all these investigations because over the last year she has had loads of urine infections caused by the soiling. I was interested in topsyms reply, I don't know if I would have the courage to go cold turkey and withdraw all laxatives, I'd be worried that she'd get in a terrible state but it is tempting!! X
Ps I have found that most gps really don't get it. I would definitely ask for a referral. The consultant we've been seeing couldn't believe that this has been going on for over five years. You've probably seen it but the pooh nurse video is quite helpful but I haven't found it a complete solution. Things for us never really improve and she has accidents every day, I've just rinsed out four more pairs of knickers. Having said that I don't really mind as long as she stays infection free, they are my biggest concern x
Any chance of asking the name and location and specialism of your consultant? My son is seeing the gastroenterologist this week and I have a feeling I’m not going to get anywhere so I might try to get a second opinion. The paediatrician we see will defer to the gastroenterologist who seems to see movicol as the answer to everything even though it’s clearly not working x
Thank you, that’s really kind, sounds like he wants to get to the core of what is going on which is great. Post on your progress if you get time further on down the line. I’m so grateful for everyone’s knowledge and experience on here, without it I would feel quite depressed
Sorry, it is a paediatrician that my daughter is seeing, with Southampton Hospital - was just easier to type doctor! The Paed seems a bit stumped with regards to what to do next to be honest and really doesn't fill me with confidence. She keeps saying it's probably her anxiety that's causing it now - but if she didn't have the accidents she wouldn't be anxious in the first place. It's very frustrating to go and see her once every couple of months, just to be told to carry on with the laxatives!
Oh bless you, it is such a pain. It affects all of our lives all day everyday. If I get any joy I will certainly let everyone know, but I'm not holding my breath. Just a little thing that you probably do already, our daughter wears a sanitary pad which she can just about manage to change herself. This means that she doesn't always have to change knickers tights etc. Keep a stout heart as my mother would say!! X
Yes I saw a few people say that their children wear sanitary pads - I will definitely try that. It will work for the smaller accidents, probably not the big ones but is better than nothing.
Thanks
Hi Louloubelle,
My Grandson is 9 and has suffered with constipation since he was 4 months . Years of laxatives got him nowhere , it stretches the bowel . he has been off laxatives for a year now , wouldn't have any trouble passing a stool , no hardness just extremely large but soft . He has a superb diet and is a very active boy .
Like your daughter he would have overflow and soiling and it wouldn't worry him .
Since he stopped laxatives (my daughters decision ) the overflow and soiling stopped but he still with held going to toilet and would go once every 7-8 days , sometimes 10.
We tried homeopathy and excercises with some success .
But mostly he would sit on the toilet and say 'I can't feel it '
My daughter had a chat with him ,as it was obvious it was starting to worry him , and said we'd work together through the half term at him sitting on the toilet after breakfast and dinner everyday .she left him to process this thought and he was happy to start the regime the next day . (He'd always resented any talk about the problem before )
Well , that was a week ago and he's been brilliant , he's gone to toilet every day even gets up from mealtime and says I'm just going to try and cones back giving us the thumbs up !!
He appears much happier in himself and my daughters so happy too !! Well , we all are !!
I found an excellent piece by a pelvic physiotherapist, I'll post the link if I can find it .
Please keep your hopes up for your daughter getting through this , I can't believe how common this is , I'd never heard about it before and I'm 61 !!
There is light at the end of this tunnel , it's finding what works for each child .
Thanks for your reply. So glad to hear your grandson is having some success I'm starting to think that the laxatives are making the problem worse rather than better for my daughter. I'm definitely going to suggest weaning her off them (or cutting them down drastically) next time we see the doctor.
Our son was on movicol from just under 4 years old until 11 years old as he was withholding and then constipated. We never managed the 'magic' poo every day or every other day that some people in the medical profession say 'should' be happening. He couldn't feel the poo coming either and would soil practically every day. He was due to start senior school this September and in June I took him to our GP as I couldn't bear the thought of communal showers for him at school and someone finding out he soiled.
I was convinced that Movicol was making it worse as the poo was really soft (Mr Whippy type). But we'd stayed on it trying to get him to the one or two day poo cycle. If we weaned him off he'd get to four days and we'd panic. My sister, who I mentioned it to, said to me that she poo'd every four days and had for years so wasn't constipated, didn't soil, no tummy pains. So I mentioned this to the GP who said the magic 1-2 days poo cycle was beginning to be seen as 'old hat' by some people. The thing to get to was well formed soft poo, regular to the person's cycle (whether that was every day, once every four days or whatever), no soiling, no discomfort. He told me to try DS off Movicol - straight off. If he suffered any discomfort, the poo felt stuck or he went to a week then he was to go straight back on, call the GP and he'd see us immediately.
DS has been off of Movicol now for four months. His poos are well formed. He's had three soiling accidents (all three were during PC use...) in all that time. He goes every two to four days. I just get to the panic of 'oh my word, it's been four days' and he poos. And yesterday he came running in from school with the words 'I need to do a poo'. I could have cried. Such a simple phrase but I felt like I'd won the lottery. He's finally feeling the need to use the loo.
Definitely worth having a chat about a phased laxative withdrawal. If you do go down that road keep a very careful eye on everything and be ready to reintroduce the laxative quickly if it doesn't work. I keep a diary which has helped me identify our son's pattern - then I can intervene if the pattern slips. Our son also makes sure he sits on the loo for about 10 minutes after breakfast and before his shower in the evening to train his bowel.
Good luck. You know your child best, trust your instinct.
Hi there, thanks for your reply. Since my post I’ve taken matters into my own hands and have slowly been reducing the laxatives. We are down to 2.5ml of picosulphate now but I do still adjust up or down a bit depending on type and frequency of poo. I went lower at one point and, like your son she only pooped once every 4 days so I got a bit nervous!! I think you’re right though, everyone’s got their own ‘normal’ frequency. I’m just worried the years of laxatives have made her bowels forget how to do it on their own!
Anyway, since reducing things have been massively better. Only around one very small accident every couple of weeks , and that’s usually on a time I’ve upped the laxative a bit! 😁
So glad to hear your son is doing better too. I definitely think the laxatives are good up to a point but then they go too far!
I hope your success continues, nice to know there is light at the end of the tunnel!
Our problem started more with wetting, then the soiling started (wetting still a big issue)! My son is 9. He saw a psychologist which really helped and I suggest you push for this for your daughter. We also put him on a sitting routine. Before the summer, I think we got him to sit too much as it was bothering him so reduced it. I was randomly talking to a mum friend of mine about it and she said that her daughter had the same issue! After not really getting anywhere with the docs she tried fibre gummies and hasn’t looked back! May half term I went through disimpaction with him then started on the gummies! He was pretty much clean all summer!! He’s recently had a slight relapse as he’d stopped taking the gummies as we ran out. Movicol just exasperated the problem for us. The only issue is that these fibre gummies can’t be found in the UK - they’re widely available in the states however. I have told the consultant about them too.
Hi I just read your post you have mentioned about fibre gummies can you please explain about them bit more and where I can get them from Thank you. Ivana
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