Can anyone recommend a specialist in Essex/Suffolk or London to try for unresolved soiling? We don't mind paying to go private if we have to.
Son who is 9.5yrs soils most days, but only a small amount. Multiple times though. Rest in toilet. On 1-2 sachets of movicol daily, picosulpate 10mls a day, Desmopressin 250mg for night time wetting. Generally clean at school, only happens at home or relatives houses. It is hugely adversely affecting his behaviour, we have huge bouts of anger and physical outbursts to deal with. Again, this doesn't happen at school.
He drinks 1-1.5 litres a day.
School have been great working through helping him with anger etc but it doesn't change how much I am coping with at home.
Not sure if we need gastro specialist, behavioural specialist, or what!! GP has done a referral to EWMHS but I don't really think that's what he needs, and loathed to start that if it won't help him.
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Hopeful1234567
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That sounds exactly like how my son was. Very short tempered, angry outbursts etc. minor soiling everyday. He was severely constipated. We had to follow the disimpaction regime to empty him and now he is a changed child. No anger, happy etc. Unfortunately it has taken us a lot of time to get to this point. Drs appts, constipation nurses appointments and now he is under our local hospital. All i can say is keep pushing. He my need an xray to see if there is a build up of poo.
Thx for your reply Elephant 2401. We have done a couple of disimpactions, most recent one May half term. They last for a while but I find things like going back to sch at end of summer, or a weekend away can set him back. Anything that is a subtle change basically, and then once it's started it's like he falls in to a pattern again of witholding/soiling/refusal to toilet sit etc. Honestly not sure how we'll resolve it without another specialist's input, we have an appt in a couple of weeks time with local gastro nurse, but have been under their care for quite a number of years now and it's so disheartening that it doesn't seem enough knowledge or frequency of appts either, with them.
I'll see who else they can refer us on to, if anyone. Thx again for your reply.
What is hard to know is whether he’s with holding, backing up quickly or cannot feel when he needs to go. I am very guilty of getting angry at my son for having an accident and accusing him of being lazy not going to the toilet when he needed to go, only to find out he was backed up and has no sensation, therefore cannot feel the urge. We have only recently found that he needs to maintain on a high dose of movicol and keep him runny otherwise he backs up extremely fast. His bowel needs to shrink back to a more normal size which is going to take time. It does impact every day life and has for the last number of years as we had inadequate help to start off with. At the moment this is our life. We had to work really hard to try and change the relationship between child and toilet. He would scream and shout and throw hissy fits but now he will sit without any fuss. Toys, books, games, reading stories and reluctantly allowing him to play on the phone anything to create a calm environment. It took us probably nearly a year to finally get that calm, plenty of positive reinforcement and no shouting for us was the key. We just need to find out why he backs up to be able to help him further. I hope you have some kind of breakthrough, please keep me posted all ideas gratefully received x
Ah that is such a good idea Robinia, thank you! I've just finished a really helpful book, which gave me new impetus that we can manage this 👌🏻I'll try and post a link in case it helps either of you too.
That looks interesting. Was even aware, didn’t think about it to be honest, that there would be books on it. Think I’ve got so wrapped up in feeling so alone and out of my depth when the so called ‘professional’s’ we’re not much help I lost all ability to search and explore other help. Finding this site has been a godsend. x
No, I must admit, it didn't occur to me either til I saw it recommended on a Facebook page a week or two ago. The issue I find now is my son is so much older than a lot of the children whose parents are looking for tips online. Even the lady that wrote that book only had to treat her son for 6 months with Movicol! It is a well researched book though.
My son has extreme problems with behaviour and anger and mental health as a result of chronic constipation. I totally agree with the other reply. From your description, you are disimpacting him but then he’s not staying disimpacted. That was the issue with my son. He now uses trans anal irrigation balloon system. My son also had hospital psychology for 2 years. Plez feel free to PM me if you want to talk it through. We have had very extreme severe problems with my son and now come through the worst of it. But it’s been very rocky road!!
My son uses Qufora trans anal balloon system daily. There is also another brand, Peristeen. It was prescribed by a paediatric surgeon. He also uses very high meds daily. You can Google the products.
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Day time and bed time wetting... help!!
My boys story. 
