Advice re sleep, meltdowns, CAMHS?

[NigelGarage]

Hi,

I have a lively spirited 9 yo who has been, er, testing for some time. About three years ago, the school called us in and said they thought he had some 'issues', and we were asked if we wanted to go on a parenting course to help us manage his behaviour by the parent liaison person. We did this, which was run by CAMHS. It was very helpful and we tweaked a bit of our approach to DS2.

Issues at school improved a lot after DS2 started on asthma treatment - we assumed that what they saw as lack of concentration, slow work, friendship and physical/anger issues were down to poor sleep. They had also noticed some sensory issues (he lost it with the hand dryer or fire drills etc.) He is no longer on asthma steroids, because he has a very mild on/off version.

Since then he does fine at school academically. He doesn't have a lot if friends but he has one close friend and he plays in a local football team which is great for his confidence. He does not get into trouble now at school and certainly does not have there the meltdowns he has at home.

Just a few weeks ago, he started to have relentless night terror/sleep walking episode, like 4-5 times a night every night for two solid weeks, and then since then, every 2-3 days. This was very dramatic and distressing, although he doesn't remember a thing. The GP did a whole load of things to check him over and then contacted the local paed unit for advice. They suggested a referral to CAMHS based on his previous history.

CAMHS have just sent a letter saying they won't see him because "there has been no prior primary intervention" and have suggested referral to the school nurse. I don't really understand what the primary intervention bit means: doesn't the parenting programme (which was run by CAMHS!) and the GP count? What would a school nurse do in this situation?

I don't even know what to think about the idea of a referral to CAMHS. I've suppose I was hoping for a sleep specialist! I don't have an issue with getting a different diagnosis, in fact it would be good to be able to get some more help to help us deal with his complete violent meltdowns at home, but now that they've bumped us as not v high priority, I don't know whether to chase it.

Can anyone advise what our next step might be? Back to the GP but to ask for what? I'm v confused because I don't know if the medics think my son needs a special needs assessment or not. Would it be worth trying to find someone privately? Who would look at sleep and behaviour issues together, a psychologist?

Sorry to ask lots of questions but I'm a bit clueless in this situation.

It is all too common for CAMHS to reject the referral. My ds's were rejected twice before being finally seen and getting a diagnosis. It is worth going back to your GP and ask for a re-referral emphazing the behavioural issues as well as the sleep problems. My ds's got their diagnosis from a Community Peadiatrician in the end although CAMHS would have been able to do so - you could ask for referral to them instead. Does the sleep / behavioural issues correlate with coming off the steroids? - they are pretty non-specific drugs so possible could be having other effects as well as controlling the asthma.

Thank you. Yes, I will try to see if the GP can get back to them.

The steroids (inhaler only) stopped over a year ago, and I don't think there was a connection to other things, although I've never really been convinced DS2 breathes very well.

Is it common for kids who end up being diagnosed as having something like, eg ADHD, to be sort of "tolerated" at school and home so it just seems like typical behaviour?

I just don't know how much this is a problem, how much we might have accommodated etc.. We are certainly ground down with behavioural issues at home, and it is wearing on his brothers too.

It is really hard to know what is just stuff that needs to be managed and what needs extra help. Or what is us and our parenting style and what is him....

It is also helpful to know that CAMHS typically reject referrals. I guess they are just very stretched and need to prioritise cases.