No melatonin= No sleep = extra use of respite hours

When Dinky was being diagnosed I joined parent groups- as you do. What I didn’t expect was the hundreds of negative experiences with CAMHS, not just one particular camhs- but camhs up and down the country.

With them it seems that their first port of call is to send parents on parenting courses. I was so happy Dinky had been turned away 5 times! We went via Paeds and I was counting my lucky stars, I was also (very annoyed for other parents) thankful that the CDC made an exception in Dinky’s case because the PDA diagnosis was really the start to things getting better for her.

SO when Dinky was referred to camhs I was a little apprehensive but I made the cardinal error- I thought to myself It is Just for ADHD assessment and then med reviews, I mean how bad can it get? My granddad always used to say that it is a bad idea to tempt fate. We grew up with that saying so I really should know better!

Wow, have camhs been as useful as a trap door in a canoe which holds a chocolate fireguard on a water ladder!

Dinky’s ‘assessment’ was a farce! She has been to the camhs building twice and both times had epic violent meltdowns thanks to the ‘ADHD nurses’ lack of understanding of autism/PDA/anxiety. The last time was a joke! Dinky was in her special buggy with a blackout cover and I said to the nurse “this is the only way I could get her here”- so what does the nurse do? Completely ignore the obvious ‘I don’t want to talk’ barrier and try to communicate, and then when dinky tells her to leave her alone, does she stop? of course not, because camhs live in opposite world where they do the opposite of the child’s wishes! I was severely unimpressed!

The letter from the assessment turned up 7 months late and was so wrong I wonder if he was thinking of another child or whether he realises he actually attended that appointment!

So fast forward. The consultant in November (I think) changed her melatonin and decided that it should come via signed for post to my address. I mean what could go wrong?

Let me tell you- two weeks before Christmas I phone and say “We only have a week left”, the week before Christmas still nothing. Thankfully I have some of the old melatonin left. So I phoned camhs ‘we are sorry’ SORRY- have you ever tried to look after an autistic demand avoidant ADHD, SPD child when you have both had 4 hours sleep, during a period of excessive change and stress? No? somehow  ‘sorry’ doesn’t quite cut it. I wont lie I did hope she would choke on her turkey while I had no sleep! I called the PA and said we have enough in her budget for extra hours- I am going to need them! It was a very stressful week- lack of sleep seems to ramp up PDA behaviours!

Saturday we got the melatonin in the post. I was so happy it didn’t dawn on me until I went to give her one, that they had posted out 2mg instead of 5mg capsules. I mean I know some people get 2’s and 5’s mixed up, but they tend to be in early years or like Dinky have SEN.

As soon as CAMHS opened today I was on the phone to them. Thankfully they phoned back in the afternoon and said that a new script for 5mg had been faxed off and that I will get her meds in the post.

Surely this should be simpler?

So I have to give 2 capsules instead of 1- double demand, and wait.

Although I do now have over 50 capsules (granted of 2mg but better than nothing) so if they don’t send out the script again I have spare!



4 thoughts on “No melatonin= No sleep = extra use of respite hours

  1. Pingback: No melatonin= No sleep = extra use of respite hours | meggiemom342

    • I wish I could have but I was sure Dinks had ADHD and that meds would help her in school- it sucks being right 😂

      If it wasn’t for the fact that we need a secondary care physician to sign off on the controlled and unlicensed drugs I have consented to give my child (for her benefit), I would tell them in a not-even-close-to-polite way to do one, the muppets. But I have to play nice and go above their heads to get the service manager to do his job and manage the blinking service!

      We have zzz’s as we have 4mg which is ok, and back to her sleep- wake at some ungodly hour for an hour or two-sleep routine, new meds should come tomorrow. I just hope I’m in 😳

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