Need help with son's moods & screaming

[woodsandwaves]

Hi, I don't know really what I'm hoping for with this post as I just don't know what to do anymore. 12 year old DS2 has complex epilepsy along with a mild physical disability. We can't get on top of the epilepsy (tried keto and he's currently on his 5th AED) - big seizures are controlled but huge amounts of nighttime seizure activity and daily absences still happening.

Our biggest problem is that his memory is badly affected and he is muddled and frustrated frequently. He keeps clashing with everyone as he will deny we've had conversations about things and then scream at us. He's regularly screaming at us/hitting/scratching and yelling at the top of his lungs that he hates his life and wishes he was dead/we were dead etc. He's recently been seen by CAMHS and has regular appointments with a neuropsychologist but as he denies there's any problems in front of them they are struggling with how much therapy they can actually provide him with.
It's got to the point that the neighbours must hear this on an almost daily basis and him and my other children (who've always been really great with coping with his behaviour) are really clashing. It's making life miserable and the rest of us feel like we are walking on eggshells around him. Does anyone have any suggestions at all please?

Anyone?

Rather than direct therapy what about more indirect therapy/therapeutic provision. For example, animal assisted therapy? I presume DS has an EHCP? It could be written in there.

Separate to that, are you receiving any social care support?

For siblings, it is worth contacting your local young carers service and Sibs.

@ThomasWasTortured that's a really good suggestion about indirect therapy. He does have an EHCP (although council have breached the statutory deadlines for review and the objectives are very out of date). I could look into this myself and force the issue a bit more (school provision is good but I've become jaded with the whole EHCP process).

Will look at carers support for other children. Thanks

No social care support. Would we have to be referred for that or can I self refer do you know? Thanks again

You can request social care assessments yourself. On their website Contact have model letters you can use. You want a carer’s assessment for you and an assessment for DS via the disabled children’s team.

If the LA is in breach of their statutory duty to hold an annual review email the Director of Children’s Services threatening judicial review. If that doesn’t work contact SOSSEN for help with a pre-action letter.

Lots find Mindjam helpful, too. They have a waiting list, but it isn’t extremely long like some NHS services.

Thanks for all your help @ThomasWasTortured I hit a wall over the weekend with it all but now feeling a bit more energised to start asking for the help you've suggested.