Need help please, we're desperate!

Hi, my 7 year old son has been soiling since potty training at 3. He's been on movicol for the last 18 months, initially to clear out the impaction and since then is on a low dose to keep everything soft. He's not constipated now (although he was when he was younger) but still soils himself almost daily, sometimes several times a day. His main problem seems to be that he hates actually going to the toilet. We have to remind him that he needs to go which invariably ends up with him bursting into tears/screaming/lashing out. He seems to be mentally unable to get past this fear/revulsion of the toilet and we don't know how to help him. We've tried everything from charts and reward systems to full on bribery and nothing seems to be able to get him over it. He will disappear into his bedroom rather than just go to the toilet and it's breaking my heart. We were seeing a pediatric consultant last year but we moved house and had to be discharged. We've been waiting for an appointment here with a paediatric continence specialist since January and have been told we won't be seen for another few months due to long waiting lists. Our GP is no help.

Is there anyone who has had experience with their child having an extreme reaction to the toilet? Any advice would be very gratefully received!

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  • I'm going through the same with my 4 year old, his terrified of going on the toilet and with holding his stools. We are waiting to see a continence paediatric. Could you contact your health visitor or school nurse to see a continence nurse? Although she went through alot of what I had already tried with my son it was nice to feel supported and have a review in a few weeks. With it being an anxiety could the school refer your son to Young healthy mind's? My older son had session's with them at his school when he was around 8 years old, he became very anxious and picked up some OCD . I hope your son gets the help he needs x good luck.

  • Really sorry to hear how desperate you are feeling. Have you phoned paediatrics at the hospital you are waiting for an appointment at and asked about any cancellations? I did this when waiting, rang a few times and they put me on a cancellation list to call if something came up. It did help bring appointment forward a bit and made me feel like I was being proactive.

    I agree with other post that maybe trying to get advice from school nurse. If there is a psychological barrier there with your son then maybe there could be another resource he could access.

    I can very much relate to the frustration and desperation that the soiling brings. Although things have greatly improved for my daughter I will never forget the worse times. This forum is a great place to share your feelings...someone always answers.

    Keep doing what you are doing x

  • I agree with asking about cancellations (and making clear to them how desperate you are) - my daughter was facing a 10 month wait for a consultant appointment. I got upset on the phone to the receptionist (I didn't mean to, but got a bit weepy). Having told me that there was no way of an earlier appointment, and only a remote possibility of a cancellation, she phoned me back an hour later with an appointment that week....

  • Seven's not too old to be taken to the toilet by an adult and made to sit, even if he says he does not have to go. He may be resistant now but if you're firm about taking him 3 times/day, everyday, he will soon learn that 'resistance is futile.'

  • You could try speaking with one of thr ERIC advisors? They may be able to help until you can get an appointment with a continence specialist. Agree with seeing if you can get on a cancellation list.

  • Thanks for all your replies! I'm waiting for a call back from the GP (a different one) to see if they can refer me somewhere else. I'm hoping they will be able to see he needs psychological support as well. If the GP is no help I'll definitely try the school nurse route. We are already on the cancellation list with the continence team but they're so understaffed that the waiting list is huge...

    We were told that we had to keep the whole toilet process positive ie not let him get upset about it but that's near impossible when making a 7 year old do something they don't want to do! I had thought that after several years of this he would have discovered that 'resistance is futile' but he's clearly a lot more stubborn than we are.

  • It is very hard to get a stubborn toilet avoider to cooperate, even at 7, it can become a battle which you don't want either. It's tough going. You are on the case though and trying your best to help your son which is great. Hope you get some more support via the new GP.

    I have got upset to various people over the years, health visitors, GPS, hospital administrators. Not intentionally just because I was exasperated by it all. I think sometimes that is a good thing though as they see what an effect it has on the family. X

  • Try only changing his dirty pants in the bathroom allow him to sit in the loo in his pants and have a foot stall to rest his feet on. Distraction techniques like reading or having a chat about his day or favourite game. Do this everyday at the same time, after school worked best for us at first. Our son turned 8 this week and has only been using the loo for about 6 months we tried everything too. We saw a psychologist who said that he wasn't body aware enough and that it would eventually come when he was ready. I found the hardest part was staying calm when he soiled and felt i was somehow to blame for his problems. You're doing your best and just have to keep on trying. I myself was afraid of the flush when I was little I've heard some people don't like the thought of the loo water touching them so I put paper down first in case this was my sons issues, it turned out that he just didn't want to sit there. When he finally went for the first time I bribed him and said if he would sit every day and try he would get a toy, this finally worked for us but he does have to have a Nintendo ds with him while sitting!! I think I was "played" there!!

    Keep trying, keep on pushing with the appointments and things will get better.

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