I don't know what else to do...

[dandeloin]

Hi All,
hoping someone can advise please. So, my 10yo DS has "extreme anxiety" and ADHD, both diagnosed by CAMHS. I absolutely agree with both of these. He's had CBT and OT therapy from CAMHS. Next step, was to try ADHD meds. Home life is challenging and sometimes toxic due to his behaviors so I was in favor of trying the meds. He refused point blank to take them, so we were discharged from CAMHS as they could do no more (??). Anyway, DS has this ongoing pain in his tummy, it's been ruling our lives for nearly 4 years. He has at least annual checks with the pediatrician, we're in & out to my GP, he's had an ultrasound on his tummy, all clear. A months prescription of strong antacids seemed to work late last year, until it was too good to be true and the pain was back. So the pediatrician booked him in for a "scope". That was meant to have been Monday of this week, DS refused to go, we could not get him out of his bed that morning. How stupid does that sound, but he is a big guy and its not so easy to "force" him. So we had to cancel that appointment at the last minute (very bad form, I know). I just don't know what else to do. He's telling his 5 year old sister to go kill herself & that she's the fattest person he's ever seen (she's like a bean pole and she eats very little as it is), he physically attacks his older brother and in general is very difficult to live with - he has no empathy whatsoever, his thinking is so rigid. Everything is a problem, someone else's fault, too much like hard work, he doesn't socialize, or go outside much. The playstation has been taken from him but he's still so defiant and aggressive. I have no patience or energy left. I'm waiting on a private appointment with a local psychologist for further support (£££) but I am just at the end of my tether with it all. His anxiety based motor tics are back with vengeance, his face is red raw from him rubbing and infecting his lips, he is very sensory about walking on his tip-toes (and has been since a toddler). I don't know if perhaps there's more to this, and I do acknowledge that he is bold for some of it, but I really feel lost at sea. Any words of support would be appreciated, as always. Thanks for reading....

For siblings, your local young carers service and Sibs can be supportive.

I would request another referral to CAMHS. There is more than medication they can support with. Also, at 10, they may think about covert medication if necessary.

Speak to the hospital about DS’s anxiety about attending for investigations. Have they offered any support with supporting DS to attend? Would bribery work?

Does DS have an EHCP? If so, you need to request an early review. If not, you should request an EHCNA - IPSEA has a model letter you can use.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS.

Does DS have his own room at home he can decompress in? Do you have any sensory equipment at home?

That does sound so so hard for all of you
it Does sound like his stomach pain has impacted his behaviour and ability to regulate my son has had gastro problems and when he is in pain he is almost unmanageable
I have also found that if he “told off” when he is in pain or struggling it just makes everything so so much worse
i have found normal parenting strategies around discipline don’t work when my son is anxious and of anything makes him go more the other way

this website was very useful

https://yvonnenewbold.com/resources-on-send-vcb/violent-challenging-behaviour-the-basics/

have u got a date for another scope yet?

it might be worth giving him back his PlayStation if it helps him regulate and reducing traditional discipline as much as possible to lower his anxiety. Hopefully this will make him calmer and when it comes to the new scope date he might be more responsive to going if he is calmer and perhaps you could bribe him to go with a new game?

i know this might feel like rewarding bad behaviour but really the goal would be to get him to that appointment so you can see what’s causing him pain.

Has he been assessed for autism? I only say this as walking on tip toes is a very common trait. Also how is his diet? It could be he’s intolerant to something eg gluten etc. And his bowels, does he ‘go’ regularly ?