Published on 12, July, 2020
Hi all
Not sure why I'm posting, just feel so low and tired today.
We noticed at 2.5 that our daughter was showing signs of autism as well as sleep problems hv advised us to wait awhile before pursuing anything as daughter had complications after birth that we were warned could cause delays in development.
At 3.5 took her to gp about sleep and repetitive behaviour and diet, he laughed at me but referred her to paediatrician who agreed she was showing signs he asked gp to refer her to camhs so I waited gp it turns out never referred her.
At 6, school nurse got involved and got camhs to come out and see her they agree she needs assessment great! No they mess up referral and daughter is rejected due to the wording on her referral letter! School nurse stands by us sets up ehp gets us a support worker (didn't want) all to document everything to support re-referral.
Daughter is now 8 and still not sleeping she was making herself Ill (as well as me) tried gp again told they can't help. So I brought her melatonin gummies and it worked for the first time in years she was sleeping and happier in herself but school nurse found out demanded I stop and take daughter back to gp as it's best from doctor, so I do this and guess what they won't help and don't want her having them so we are all back to no sleep constant meltdowns. It just seems ludicrous that I am the bad one for doing something that actually helped my daughter and they do nothing! Apparently sleep deprivation is better for her!
Sorry pointless rant I know just feel so lost
Well done for getting it off your chest. We had melatonin prescribed, so it can be done.
Have you tried changing your GP? You can register wherever. Did you try finding some people using melatonin locally? How did they do it, which GP, which consultant? You now need the real progress, the full diagnosis and EHCP. Who is the gatekeeper for EHCPs, camhs or paediatrician? insist on both referrals, use PALS complaint to smash some barriers and make progress.
You also need support for yourself. Get a referral for yourself, your MH, some respite. One of the things you could do is carers needs assessment. If you don't sleep, it can't work. Do you have local carers organisation? see whether they have any advice ho to make progress
Thanks for the reply, but melatonin can't be prescribed by primary care physicians in Sussex, I didn't believe the gp so they actually showed my their prescription guidance on it. Camhs or peadiatrics can give it.
She has now been taken on by specialist health visiting team who are putting together a sleep plan for her based on behaviour and routine (I know it won't work as have tried all that before) also half their stipulations interfere with her stimming routine, and they are insisting she has a bath to relax each night but she is terrified of the water so has meltdown can't see how that is going to relax her! But when they assess for improvement after 8 weeks they can then ask for melatonin for her. So might get somewhere with that.
I have emailed local health watch with all the details so hopefully they can give me some ideas
I am just frustrated and run down and with all the other problems it just makes me want to scream!
Thanks for the advice