8yr old needs support!

[duzzlightyearsmum]

To preface this thread my DS was referred to CAMHS 2 years ago aged 6 for a variety of reasons and we are still on the waiting list. He's seen someone for 2 appointments and now he's on the next waiting list. I'm hoping some of you might be able to suggest some strategies to help while we wait.

Initial CAMHS referral was made when DS was 6 due to anxiety issues (arrival at school, not finishing work, unexpected changes), he began to eat inedible items (glue stick, paper and plastic) and he began to click, flap and jump incessantly. 18 months down the line he had a getting help assessment which as led to him being referred to the Neurological team.

Fast forward to now, 2 years from initiall referral and things have got worse. He now isn't sleeping well at all, several different things tried to help and he will now go to sleep at a reasonable time but wakes several times a night and he has started wetting the bed again.

He has begun chewing on anything he can find, o have now bought him some chewellery so at least this is done in a safe manner.

He flicks his own cheeks and neck, hard enough to leave marks but he seems to be enjoying it.

He has meltdowns over everything, he appears to be in a heightened state permanently whereas previously he would go up and down.

CAMHS have said the waiting list from here is 24 months with very little chance of it being any earlier to access support or diagnosis.

We are all struggling, we are exhausted because he isn't sleeping. We are exhausted because every task has become a battle and he is struggling to show empathy and is hurting me and his sister unintentionally (ie squeezing her too tight when hugging). Any ideas of what we can try to improve sleep? Empathy? Relieve some of his stress/anxiety to reduce meltdowns?

[SinkGirl]

Has he has an ASD assessment yet? I know each area varies but usually this is a different pathway

Does he have an EHCP? You can apply for one yourself, that process would include assessment by an educational psychologist and they should set out necessary provisions for him at school.

Could you speak to your GP to see if there are any other services in your area they can refer to? Portage have helped us massively, but he’s too old for that - I’m wondering if there’s anything similar for older children

How about an OT referral giving his sensory seeking and pica?

[SinkGirl]

Unfortunately I have heard of kids getting to the top of the CAMHS list and being told they can’t do anything because the child has ASD traits and therefore they need those assessments. I am just worried that you’re waiting endlessly and may find that when you get the top of the list they won’t help, but if he’s already been assessed that may not be an issue.

[ThatsWotSheSaid]

Has he always had anxiety issues? If not have you looked at PANDAS?

[Coolcucumber2020]

Pay for an ADOS assessment privately

[duzzlightyearsmum]

Thanks for your replies. As far as I have been informed the neurological team will do an ASD assessment when they see him, so a way off but we are on the correct pathway for that as such.

The getting help team did an initial ASD assessment at one of the two appointments and highlighted that this is the most likely 'issue'.

He doesn't have an EHCP, do you think he'd likely get approved based on your experience? I'm wary as I know it is seemingly increasingly difficult to get one approved!

I have always felt that he is 'different' to his peers, but this wasn't something that was highlighted until he was 6 by others. Will take a look at PANDAS, roughly what is it? Do you know where I might be able to get some information?

How much would a private assessment be?

[duzzlightyearsmum]

Also would my GP be the place to story for an OT referral?

[SinkGirl]

Yes I think he should at least get an EHCP assessment from what you’ve described. If the LA refuse to assess I would appeal that. It’s easy to apply yourself, there’s a template letter on the IPSEA website.

I’m not sure whether the GP can refer to an OT, but you could try. If you can afford it you could consider a private OT assessment which should give you some ideas for strategies to try at school and at home.

[duzzlightyearsmum]

Thanks for all your suggestions. I will speak to school and look at the EHCP assessment.

Will take a look into the OT situation as well and see the best way forward with that.