DS and poo problems - your advice please

[Biscuitsneeded]

Can I start by apologising for posting here as DS doesn't strictly have special needs, although I'm having him assessed (read on) and your collective experience may indeed shed some light on what if anything is going on.
I'm at my wits' end. DS was very, very difficult to potty train, then was trained but would have occasional poo accidents for a while, then OK for about 6 months, but now we're going backwards. He claims he doesn't know he needs a poo until he REALLY needs a poo, and then if there isn't a toilet right nearby or it is occupied the poo happens in his pants. He makes it worse by trying to sort it out himself, especially if we are out somewhere, which often results in poo all over his clothes, legs, the toilet, the floor , the walls. I am almost at the point where I am so used to it that it doesn't even gross me out, but of course I'm mortified when we're in a public place and I have to ask for cleaning materials etc. I suppose I could just carry wipes, bleach, change of clothes around with me all the time but he's 6, not a toddler - we need to get it sorted..
He DOESN'T have encopresis. He poos every day, no impacted stools, no constipation. It isn't diaorrheah either. I am currently waiting for a paed referral for him because he is clumsy, over-excitable, finds it hard to follow instructions etc and is hypermobile. I think it all points to some kind of issue, and GP said maybe the poo problem is related to some sort of processing (neurological, not digestive!) problem, but I would love to know if anyone else has had similar experiences. Did the child eventually grow out of it (please say yes!) and was it connected to anything else?

Thanks in advance.

Well, I don't know if this is going to be very helpful. But seeing as you had no replies yet - I'll let you know about my DS.

He is nearly 6 and has v v mild cerebral palsy. It mainly affects his left hand.

Lots of subtle behavioural things are connected with CP though and one of those is DS's willingness to do a poo. My DS also says that he does not know that he needs to go. I can tell when he needs to because his behaviour gets bad/annoying. He invades people's space and becomes naughty and a tiny bit out of control.

At these times I always ask DS to go and try to do a poo. He usually says that he doesn't need to and I tell him that I can see that he needs to etc We have a mini battle about it.

However its become habit now that I tell DS to do a poo each day. I'll either send him after school, or when I see in his behaviour that he needs to go.

We've never got to a soiling his pants stage, but I wonder if that's because I've insisted that he goes once a day, routinely.

I know that children with any kind of brain injury can lack sensation in their bowels so that their body will not know when it needs to go - until desperate or too late. DS has lower sensation in other parts of his body too.

Although this may not be the case with your DS - lots of children and adults have mild brain issues that will never be diagnosed because they are too mild for the NHS to do scans for.

I hope that is helpful.

I don't know if it is any help, but DS2 has virtually the same as your description.
He is being seen by a specialist as both school and gastro consultant have thankfully recognised that it is an issue (postcode lottery again!)
He has EDs. his main issues are the hyper mobility and IBS.
FOllowing tests, it doesn't look like the muscles in his anus or sphincter are working properly. This could be EDs related.
You have to keep on keeping on nagging until you get help. Ask for second opinions and explain how difficult it is to carry out family activities/school etc with this issue and the psychological damage that this could be causing.

Auntevil - THANK YOU!

And everyone else too, but Auntevil's post just chimed so much.

Always feel free to PM me if you want support in nagging - this is my field of expertise