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whirlingmind
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16 Mar 2013, 9:37 am

Melatonin is a naturally occurring substance in the body, which is extensively used and studied: http://www.ncbi.nlm.nih.gov/pmc/articles/pmc2670334/.

In the UK, parents are expected to make health care decisions for their children, based on what they feel is in a child’s “welfare” or “best interests” http://www.nhs.uk/NHSEngland/AboutNHSse ... 117353.pdf.

Have any parents bought their own off-prescription melatonin for their ASC (or other condition) child with sleep problems? Under what circumstances did you do so?

(I am fully aware that the potential exists to buy something without being sure of the content or origin, so I'm not looking for advice about potential issues in that regard.)

I'm talking about known brand, from a reliable manufacturer with safety and purity procedures, known ingredients list and awareness of the type of melatonin (standard, time-release etc.) as well as the dosage within.

There may be variation between countries with regards to what is available on and off prescription, in the UK it is considered a prescription-only medication.

I would add that I am also aware that melatonin is a medication unlicensed for use in children, despite this it has been used for years in clinical practice in children and there are very few medicines that are licensed for use in children.


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MiahClone
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16 Mar 2013, 10:07 pm

It is not prescription based here. I have been told several times by doctors to use melatonin with my kids. My best friend who has a kid that has severe sleep issues among other things has been told the same thing. He has been put on some stronger prescription thing I think now, but used it for 6-7 years. We've always just used whatever brand was available at the store. Her kid has been able to swallow pills since he was 3, so she has always used the inexpensive swallow kind that is not time release. I believe her kid was up to 9 mg by the time he was 5 (He was physically the size of an average 10 year old by age 5). I have used the liquid, the chewable, and the standard swallow pills with my kids. My husband and I use it also from time to time. The liquid and chewables kick in faster than the swallow pills. I think constant use builds up a tolerance to it, so we always take a break from time to time.



Eureka-C
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17 Mar 2013, 7:58 am

My kids have no sleep problem, but my husband does. He used it but said it made him have vivid dreams he didn't like and weren't restful.

Others I know think its great!


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InThisTogether
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17 Mar 2013, 8:04 am

I have given it to my daughter and taken it myself. No one reported ill-effects.

I am a chronic insomnia sufferer. What I find is true for me is that if I start a bout of insomnia, it is important I get it under control right away or it grows legs and has a life of it's own, and within a span of a week, my sleep will be so disturbed that it ruins my life. I would rather start with melatonin than a rx drug like ambien to try to get it under control, to try to get myself back on track.

My daughter had a hard time getting to sleep when we moved. I used melatonin to help her during the transition and she no longer needs it.


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whirlingmind
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17 Mar 2013, 9:37 am

You guys in the US/elsewhere, will be surprised at our situation then.

The paediatrician liaised with the GP to prescribe melatonin to my daughter following her HFA diagnosis. Another paediatrician who was part of the assessment team, had put in writing in the assessment report, that the GP could prescribe either of two types of melatonin. Following our GP being utterly paranoid, and despite him having a copy of the paediatrician's letter naming the two types of melatonin, he was panicking and doing endless liaising with the paediatrician and research about melatonin, because when he checked his drugs manual, he saw it was unlicensed for use in children (as are most drugs).

Eventually he calmed down and prescribed one of the two aforementioned types, stating that it would have to be closely and regularly reviewed. It worked in getting my daughter to sleep but didn't keep her asleep. I then found out about time-release melatonin and my research led to realise that of the two types mentioned in the letter that the GP could prescribe, one of them (Circadin) was in fact time-release.

When my daughter's prescription was due, because I am planning to cease home-educating her and she is to start school, I requested that we have the time-release Circadin because she would not function well at school with such broken sleep. She gets distressed about it, and is extra grumpy and resistant to learning the less sleep she has had and inevitably it will also affect her health. I got a phone call from the GP surgery saying that she had been prescribed the capsules. I asked whether they were the time-release one, but the secretary couldn't say. What ensued was fruitless phone calls back and forth to the paediatrician and the GP to find out, it also got passed on to the SEN social worker who had no knowledge of either the situation or melatonin.

Eventually I found that the capsules were not the time-release ones, and there was clearly a problem with my request for those, so I asked for the paediatrician to call me to find out what the problem was. When he did, he was rude and would not listen to me as a parent, who knows my child and they don't and my knowledge of our situation. He said he would only listen to the views of the SEN health visitor (who has never even met us) who would recommend changes to environmental issues affecting her sleep and that medication is not meant for long term (which I never suggested it was). There are no environmental issues affecting her sleep and despite me telling him this he would not listen!

I asked the GP to change the capsules back to the tablets she was on before as they were the same dosage, not time-release and would be more difficult to swallow. I then ordered some of my own time-release melatonin off the internet, and I mentioned this to the SEN SW (who went red and replied "I would be really concerned about that") and someone from CAMHS - who sent me a really stern email with parts in block caps, telling me not to give my daughter this as it was unregulated and I didn't know what it contained! She added that due to the seriousness of this she had reported me to the duty social work team!!

I replied saying that I was not an idiot and I had researched the manufacturer and the ingredients of the melatonin and would not just give anything to my child. It's the same dosage as her prescription one, it's just time-release (which actually is probably a more natural way for the body to receive it anyway). I also emailed information about how legally I have the responsibility for my child's treatment, and even to prescribe medication to my child they need my consent.

I cannot believe this response. You'd think I'd said I was going to lock my daughter in the car boot or something! They are refusing to give her what she needs despite the other paediatrician recommending it (and my research shows me that Circadin is the melatonin of choice in other area health authority's CAMHS departments), and this is just added on to them not offering her any help with her anxiety despite her being referred, and the school virtually promising a 1-2-1 support for her when she starts (it's mainstream because the ASC unit is full) and then changing their mind purely on the basis that academically she is ahead of her peers!

I'm sick of the system here in the UK.


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InThisTogether
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17 Mar 2013, 11:46 am

Wow. I don't even know what to say. That is awful.


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Logan5
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17 Mar 2013, 4:05 pm

The NHS has freaked out about sleeping pills. Thanks to the world wide web, however, it is fairly easy to get melatonin ( http://en.wikipedia.org/wiki/Melatonin ) in the UK without a prescription. The packaging always looks professional, and I have never had any problems, but I have never investigated the manufacturer (on the label).

As with any substance, people vary in how they respond to melatonin. I do not know what dose the GP prescribed, but I recommend starting with a very small dose. Melatonin is regularly sold in tablets and capsules ranging from 1mg to 10mgs, but to help put those numbers into perspective, I am an adult male, of average height and weight, and I typically only use 1mg to 2mgs, and even lower doses for the time-release variety. (At the risk of stating the obvious, the regular form is useful for problems with falling asleep, and the time-release formulation is useful for problems with staying asleep.)

As an alternative, some people take amino acid precursors, such as tryptophan ( http://en.wikipedia.org/wiki/Tryptophan ) and/or 5-Hydroxytryptophan (5-HTP, http://en.wikipedia.org/wiki/5-Hydroxytryptophan ). I have found these to be less effective than melatonin, but they can usually be purchased from a local health food store.

Finally, with regards to "environmental issues affecting sleep", the doctor is probably referring to sleep hygiene ( http://en.wikipedia.org/wiki/Sleep_hygiene ; also see, "BBC: Science & Nature - How to sleep better", http://www.bbc.co.uk/sn/tvradio/programmes/sleep/ ). The NHS is pushing this instead of pills. It can take a considerable amount of time before improvements in one's sleep hygiene result in improvements in one's sleep.



whirlingmind
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17 Mar 2013, 6:54 pm

The paediatrician had recommended the GP prescribe 3mg, which is the tablets she was on, so I bought the same dosage but in time-release form.

I looked at the sleep hygiene stuff, and as I thought there was nothing really applicable to us. She has no TV, computer or electronic gadgets in her room, she is scared of the dark so she does her door open how much she wants it, the temperature is fine, there is nothing going on in the house that could disturb her sleep and her bedroom is cosy and just with her soft toys.

They have been ridiculous. I think they must be used to dealing with clueless chavs who play loud music at night or something.

I only want the melatonin for as long as she needs it, which will hopefully break the pattern she is in. That's why they call the UK a nanny state!


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Wreck-Gar
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22 Mar 2013, 2:20 pm

I am in the US, I buy melatonin in gummy form. It works well for my son. The packaging does say its not for kids so I just give him half a dose (adult dose is two gummies, I give him one.) We have never had any issues.



whirlingmind
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22 Mar 2013, 2:26 pm

Thanks Wreck-Gar.


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Adamantium
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22 Mar 2013, 2:33 pm

I used to love the NHS, but this is completely mad.

Is the time release more expensive? This is the only motive I can imagine for this bizzarre conduct.



whirlingmind
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23 Mar 2013, 8:27 pm

Adamantium wrote:
I used to love the NHS, but this is completely mad.

Is the time release more expensive? This is the only motive I can imagine for this bizzarre conduct.


Got it in one, this was what I suspected. I just found out this today (and have released my wrath on all concerned by email and fax):

http://www.ljf.scot.nhs.uk/SharedCarePr ... 0FINAL.pdf

Quote:
"Cost
£183 per patient per year at a dose of 2mg/day (Circadin®) and £94 per patient per year at a dose of 3mg/day (Bio-Melatonin®) in primary care. (Prices exclusive of VAT in primary care)Shared Care Protocol and information for GPs – melatonin for treatment of sleep-wake cycle disorders in children."


I also found out that despite their awareness of Circadin (the time-release one), they state in their protocol that Bio-Melatonin, (the quick-release one), is the "preferred" option! Well now the game is up. They have underestimated my Aspie doggedness in researching high and low until I got to the bottom of it.

And when I think, they told me that melatonin "gets them asleep but doesn't keen them asleep" at our first appointment, knowing there was an option which does, but clearly they choose not to give a child that needs it that one because of the price. I don't mean personally they did it against us, but they are obviously hiding Circadin from parents as otherwise their overall payout would be higher as a lot of parents of autistic children would need that one. The other paediatrician who named both options in my daughter's assessment report has probably had her knuckles rapped over letting it slip in the letter. But I'm only asking for what my daughter needs to break her sleep-wake pattern.


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ASDMommyASDKid
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23 Mar 2013, 8:31 pm

I am not surprised that it came down to £££.



MiahClone
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23 Mar 2013, 10:45 pm

What's crazy is that the health services there are letting themselves be charged so much for a drug that has been safely non-prescription in the US for years. The real money saving thing would be to refuse to pay for it at all by making it over-the-counter. I have a suspicion that this had something to do with all the allergy medications that we take suddenly going over-the-counter when the patent went out.



ShelbyGt500
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25 Mar 2013, 12:41 am

Time of day matters, including how long before bedtime. I don't use it anymore, but when I did, I took it 1.5 hours before bed, so it was gone by time to get up.