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Original poster

Kidnaps 2mg melatonin - help please!!!...

55 replies

Becaroooo · 25/01/2012 11:11

Got a private prescription for this from ds1's aped last night.

Had 2 quotes from local pharmacies....1 was £260 for 200mls and 1 was £160 for 200mls!!

We sinply cannot afford this along with all his other supplements/therapies etc.

The paed did mention that you can buy it online but am unsure about this...has anyone here done that and if so could you direct me to the site??

Thanks!

OP posts:

ohmeohmy · 25/01/2012 12:03

Rip off merchants. I did buy some online but can't remember exactly where, no help to you. what about this or here

ohmeohmy · 25/01/2012 12:04

A paediatrician can prescribe it, we recently got a prescription from paed dispensed by hospital pharmacy. Did yours say why they wouldn't?

cansu · 25/01/2012 12:49

There is no reason why you should be paying for this. For ds1 it has been prescribed by GP for the last five years or so. For dd2 she has circadin melatonin tablets which I crush to a powder and put in her milk - again on NHS. The tablets are apparently much cheaper and are fine for dd2 as she doesn't seem to detect them in her milk. ds 1 has to have kidnaps as he is more suspicious by nature! I know that PCT's have been trying to stop doctors prescribing medicines likle kidnaps which are called specials and are more expensive. My doctor tried to cancel ds prescription but gave way when I appeared in the surgery and explained how difficult this would be for us. I personally would challenge this decision. You will probably also find that you will need to up the dosage as dc gets bigger / older. ds1 started on 2ml and is now on 8ml aged 10. It seems totally unfair that you should pay when many others are getting it on the NHS. Plus, sleep is a major factor in being able to cope both for you and your dc.

Original poster

Becaroooo · 25/01/2012 13:53

Hi all, thanks for the replies.

The prescription was from a private paed (nhs one we saw was dire )

Have managed to find a pharmacy that does it for £80 - which is better

Apparently in my county the NHS doesnt prescribe melatonin for anyone under 18.

Sigh.

OP posts:

Original poster

Becaroooo · 25/01/2012 13:54

You know the irony?

I could walk into a pharmacy in europe and buy it over the counter as a food supplement !!!

OP posts:

cansu · 25/01/2012 14:28

Where are you becaroo? This sounds completely mad.

Original poster

Becaroooo · 25/01/2012 16:58

Am in Leicestershire.

Its a "black listed drug" apparently

Hey ho.

OP posts:

rosie39forever · 25/01/2012 17:09

Becaroo, I am in Leicestershire and get kidnaps and melatonin capsules for dd free on the NHS , the capsules are prescribed by the GP under paeds authority and kidnaps are prescribed by CAMHS. I have never had any trouble with getting melatonin for her and they are deff not "black listed", they are not licensed for use in children but are widely prescribed under pead authority in Leicestershire. I think someones been telling you porky pies!!!!

Original poster

Becaroooo · 25/01/2012 17:19

Wouldnt surprise me rosie

Is it because its a private paed prescription do you think?

Ds1 has never been under CAHMS.

OP posts:

rosie39forever · 25/01/2012 17:28

Maybe because of the private prescription and i know that kidnaps is expensive but even £80 is daylight robbery, the generic capsules which i split open and put in juice are quite cheap apparently. The only way you may be able to get them without paying is getting your GP to refere you back to an NHS paed, you are allowed to choose where you go, you don't have to go to the one you went to before, you're quite entitled to choose any one in the country. We go to Loughborough hospital and have never had a problem with any of the consultants as regards melatonin.

SydneyScarborough · 25/01/2012 17:31

This reply has been deleted

Message withdrawn at poster's request.

Original poster

Becaroooo · 25/01/2012 17:32

We went to Loughborough too rosie and the paed we saw was awful...wont name names but just completely disinterested and actually told me an asd dx for ds1 "wouldnt help"

Anyway, really like this paed (shame we have to pay!!)

With any luck we will only need 1 lot! My BIL travels alot and apparently its really easy to get abroad...might ask him if we need more.......

OP posts:

Original poster

Becaroooo · 25/01/2012 17:33

sydney Its a food supplement in the USA and Europe, sadly not here

Still cant get over the £260 I was quoted at Boots!!!

OP posts:

cornsilxsxy · 25/01/2012 17:34

I don't think a GP can prescribe it. We get ds's through CAMHS.

JaneMare · 25/01/2012 17:36

GPs in the next county can prescribe it, just won't do it without a consultant 'script..it's the unlicensed thing

Becaroo have PMed you

Original poster

Becaroooo · 25/01/2012 17:38

Depends on the PCT I think, corn Ours doesnt, sadly.

Just so fed up.....dont get me wrong I would sell a kidney to ds1 the help he needs but we have spent so much on private therapies (which have all really helped) and supplements etc.....I just though this one thing might be on the nhs, you know?

Feeling rather bitter about it, tbh. If it werent for generous GPs we wouldnt be able to afford any of it anyway.........

OP posts:

SydneyScarborough · 25/01/2012 17:41

This reply has been deleted

Message withdrawn at poster's request.

rosie39forever · 25/01/2012 17:41

You must have been really unlucky with who you saw, having said that its been a couple of years since we last went so maybe they have had staff changes. If you really want to push for a diagnosis and in our experience it has been invaluable for getting treatment and services you can always go down the CAHMS route, we see the learning disability team in Leicester and they have been great, willing to try different strategies and medication and also refereing us for other services. Your GP can do a referal to them, as well as diagnosis they specialise in sleep problems in kids with ASD.

cornsilxsxy · 25/01/2012 17:43

I'm not surprised you feel bitter. I nearly jigged round the room when the psych said she'd prescribe it - it's an absolute nightmare when things are so bad and they need it and don't have it.

Original poster

Becaroooo · 25/01/2012 17:44

The Loughborough paed was not prepared to dx as asd. The private guy is but ds1 has made a lot of progress over the past 2 months so am holding off for a while.

Wrt help - getting his dx of severe dyslexia hasnt helped at all No 1-1 at school, no interventions, nothing....

OP posts:

Original poster

Becaroooo · 25/01/2012 17:45

oh, and you only get £4k for a kidney! I googled it....not much is it????

OP posts:

cornsilxsxy · 25/01/2012 17:46

yes we got very little help from school /the LEA with a dx of dyslexia but CAMHS saw it as very significant funnily enough.

Original poster

Becaroooo · 25/01/2012 17:51

Ok, I am v v dense.

What, exactly, are CAHMS and what do they do?

The hostility I faced in the last parent/teacher meeting was so shocking...am still staggered by it tbh. I had the temerity to disagree with a professional opinion!!!! Been telling anyone who would listen since he was 5.5 that he was dyslexic....did they listen? Ha!!!! If only he had got help back then..........

OP posts:

Original poster

Becaroooo · 25/01/2012 17:53

corn its not just the dyslexia either...he had dyspraxia too which we have just about cured (with RRT) He also has major anxiety issues/ocd ish behaviour.....sound familiar????

OP posts:

cornsilxsxy · 25/01/2012 17:58

god yes that sounds very familiar Becaroo. How do you cope with his anxiety?
CAMHS are child and adolescent mental health service (I think) BTW

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