Fed up (understatement!)

I would call the NHS local PALS team and speak to the duty manager and clinical lead at your local CAHMS to make a informal complaint as sometimes they don't take you seriously enough and the NHS is going downhill as they just don't care. Good Luck and keep fighting

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 

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

I think you need to write to the PALS at CAMHS and log formal complaint or a informal complain to get a manager to look at this for you. Maybe you can contact the local paed you were with and speaking to you GP about esculating the matter for you and getting another referral sent to CAMHS Peadtraician or community peadtrician at your local hospital. And getting in contact with senior manager at CDC to speak to someone about the issue as matter of urgency and esculate via that way. As they wont listen until you call them again and again and you need to put your footd own and raise complaints as this is the only way that they will get things done,. I would speak to your gp to raise this and get another referral sent as a matter of urgeny. as this is beyond a joke. I had to do a similar thing and finally I ended up logging  complaint and im still waging a war with them

Nope. Camhs have just sent us back to cdc with no one any closer to helping her.

Have you had the melatonin prescribed from your local pead or local cahms?

I'm speaking to mine about melatonine next week. I'm in the east midland and it's good to know it can be done

I have been chasing them round and round since she was 4, the main problem seems to be that each department say she needs to be seen by another department so no one takes responsibility for actually treating her! 

At least the gp I saw yesterday was very supportive and witnessed some of the behaviours I have expressed concern about she also took copies of my sleep logs and agreed it's not good enough she is pushing camhs to see her asap and recommending that they start treatment for the sleep problems so fingers crossed 

The local peadtrician should be able to prescribe melatonin as I had to call my 5 yr olds peadtrician every day as that is the only way they will listen to you if you leave they won’t get things rolling, my 5 year old was prescribed small dosage of 2mg then all the way to 7.5mg of melatonin’s tablets which worked and their is a liquid format too , I’m now getting other issues like anger with him and I’ve had the greatest support from my Gp based in the Midlands , just keep fighting and chasing your local peadtrician and cams for better proactive results as nhs do have tendency of not taking parents seriously 

The local peadtrician should be able to prescribe melatonin as I had to call my 5 yr olds peadtrician every day as that is the only way they will listen to you if you leave they won’t get things rolling, my 5 year old was prescribed small dosage of 2mg then all the way to 7.5mg of melatonin’s tablets which worked and their is a liquid format too , I’m now getting other issues like anger with him and I’ve had the greatest support from my Gp based in the Midlands , just keep fighting and chasing your local peadtrician and cams for better proactive results as nhs do have tendency of not taking parents seriously 

Thanks for the reply, no she is not diagnosed yet, I'm really sorry to hear that you are having problems to, it's just not right, it is cruel making her wait not understanding why she is different.

We do talk to her about it but are reluctant to disclose what we think to her in case we are wrong ( really don't think we are) so we just call it her quirkiness but even she is starting to notice that she acts different from other children, she keeps asking me if she's weird and it breaks my heart 

Don't forget that the Samaritans are there for you.

Look after yoursel as well.

Your rant isn’t pointless. The tooing and frowing between loads of professionals who don’t actually appear to have achieved anything between them is pointless and unnecessary and actually quite cruel when all you are trying to do is get your child diagnosed so you can get the best possible support for her. Does she have a diagnosis yet? I do feel your frustration. I’m in the process of trying to get a diagnosis for my 23 month old, I did think she was autistic but to be honest I’m thinking more along the lines of some rare genetic disorder now. She was supposed to have her review with the paediatrician back in August but hasn’t had it yet. Luckily she now has a date for review at the end of this month but only after me chasing them incessantly. Also when the paediatrician initially saw her back in April he said he would refer her to audiology, as she’s not speaking yet or responding to her name, his letter states ‘i will refer her to audiology’. He never did though. I actually managed to get a telephone call from said paediatrician in December after I’d given a list of her symptoms to the secretary and demanded a review ASAP. He said we needed to make an appointment with the GP to refer her to audiology! (Even the GP queried this) but I did as instructed and got her referred to audiology who saw her last week, she has moderate hearing loss and needs hearing aids which should help with her speech and understanding BUT this could and should have been sorted months ago, 10 months is a long time at her age! So I know you need to chase and fight and generally kick up a stink in order to get anything done. Luckily my Aspergian tendency to perseveration comes in handy sometimes! 

let me know how you get on

Thanks for the reply, as I said just feeling really let down today, 

I have tried omega oils before and she won't swallow them . We do have her on multi vitamins as her diet is not good. So far the gummies were all that worked. Oh well at least I had a few days sleep! 

Thanks again for the reply it's just good to get it off my chest x

Sounds like your really going through it at the moment.

I went through this when my daughter was 8 and I thought a lot of it was hormonal as well as the autism.

Haven't used those gummies but the reviews seem positive

I was saying on another thread that I've started giving her just a shop brought multivitamin and a Nordic dha liquid gummy capsule and that seems to have really helped her.

I think we all need to start getting a bit political and standing up for ourselves. 

If the help isn't there ..then who wouldn't take it on themselves .to do the best they can?