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
Hello @ NA39248,shocked to hear that you haven't received a prescription for Melatonin-my GP prescribed this for my daughter 2 years before her diagnosis of ASD-we live in Scotland-not sure if this makes a difference ,could be that a change of GP would be best.In addition to prescribing Melatonin,my GP made a referral to Paediatrics and CAHMS-we were both in agreement that two lines of assessment would be best-at this stage there was no mention of ASD-Shocking to know that your daughter has not had a formal assessment-You are doing the right thing by keeping a log-the more detail the better!(Seeking an independent way to help your daughter-no wonder!)X
Thanks for the reply, Scotland is slightly different. Spoke to different gp this morning and she was in total agreement with me and also has little doubt after spending 10 mins with my daughter! (daughter was having meltdown as out of routine ) she was appalled at how we have been bounced around and took copies of all my sleep journals and behaviour logs and is logging complaints with all departments that my daughter hasn't been seen. She is also pushing camhs to see her asap. She is supporting our request for melatonin but it has to come from paediatrics first.
Really hope that this has got the ball rolling with getting a diagnosis and the necessary support package
If you look in America a lot of items are easily available. Is it because there health care is private. The government isn't signed up to certain legislation as in this country that stops us from having access to items that are ready available in the states and have had testing and you can buy at a reasonable price over there.
I personally believe that if you break down an illness into into sections, components it's easier to handle. Vitamins, exercise, supplements and so on. Might not cure but the journey could be a lot smoother.
It's so annoying that children with cystic fibrosis are being denied that drug. politics and medicine ..they possibly all go hand in hand with huge profits whilst people's lives are deemed unworthy of them.
Sorry to moan!
Feels better though.
I hope so to, although it was a massive relief to have a doctor listen I won't get my hopes up to much as we have been let down so many times, now I just need the school and school nurse to put as much on paper as they can to support it and maybe we might get somewhere I really hope so! Last night was awful for sleep think we an hour and a half!!
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
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
Don’t be sorry. It’s better out than in, I always say
What appears good about the US system isn't necessarily good - look up their problems with Tramadol and subsequent heroin addiction for instance.
NAS50003 said:cystic fibrosis are being denied that drug
It's about resources. Funnily enough £100 000 per person per year is an enormous amount of money. There's a lot of things that can be done with that amount of money that can save more people. I happen to know something about cystic fibrosis - a lot of my childhood friends died in their early to mid 20s.