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
First of all, that wasn’t a rant, you were simply expressing yourself. And the second thing is why are you doing what the doctors say? You know your daughter better than they do. If the gummy bears work, keep on using them, I would say.
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.
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.
Tramadol is handed out very freely on the UK as well not as easy I know but docs here have no problems giving adults pain killers and sleeping pills but won't help kids, at least that's what I find, I currently have pain management trying to double my doses on tramadol stick me on antidepressants and tranquillisers as I'm in pain and can't sleep
Obviously told them no as I can't take sleeping pills as my daughter doesn't sleep and I get the lecture!
Worth adding that the UK has similar problem with methadone supposed to get people clean but they end up stuck on that instead