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Break from Melatonin


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#1 loulou

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Posted 24 December 2004 - 09:37 AM

Hi,

My son has been on Melatonin now for 5 days and it's been fantastic. He's so much happier now he's getting a good sleep at night, and having time to myself in the evenings has been bliss!

Does anyone give their kids a "break" from Melatonin ie at weekends or holidays? Does it have any negative affects, for example they can't sleep at all without it?

I don't like the thought of giving to him every night, so was wondering what other people's experiences are with this.

Loulou x

#2 mbrown

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Posted 24 December 2004 - 10:28 AM

Hi Loulou, You can have a break from the melatonin with no ill effects. I don't take one. It is non-addictive, and there are no withdrawal symptoms as such so to take a break shouldn't cause any difficulty.

I don't think there is a problem with giving it at weekends and holidays and while it is still effective we continue to use it then as part of th eusual bedtime routine.

Merry Christmas
Mike

#3 mossgrove

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Posted 24 December 2004 - 10:54 AM

LouLou

We have not been using Melatonin for long with Jack, but according to reports I have read, with the effect of the melatonin can reduce over time, not for all children, but some. The effect can restored by taking a break for a week or two and then resuming as normal. Probably too soon to worry about it this Christmas. Just enjoy your new-found time to yourself.


Simon

#4 cmuir

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Posted 11 July 2009 - 06:28 PM

Hi

Ran out of melatonin for my son whilst on holiday in US - UK chemist messed up prescription just prior to going away. Went into well-known chemist and asked for melatonin, stating it was for a child. The dosage is the same (3mg), but I've noticed that the label says 'not intended for under 18s). In a bit of a dilema - do I give it to my son? Again, the melatonin I purchased is a well-known brand (Americans apparently consider melatonin to be a vitamin/health supplement rather than medication as we do here in the UK).

Any advice.

#5 lynne

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Posted 11 July 2009 - 09:17 PM

Its the same in Spain and France they state not for children.

Also in England we tend to get 2.5mg and 5mg strengths so we can alter the dose to suit our son. Again we can have the melatonin the same strength but in different types of bottles because they come from a different manufacturer.



#6 sandyn

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Posted 11 July 2009 - 10:20 PM

Hi. We are the only county in the world where melatonin isn't available over the counter, Melatonin is a natural hormone that everyones body produces. It basically gets us ready for sleep. Most children who have ADHD / ASD don't produce enough melatonin, therefore they have lots of problems settling down to bed. Dont worry too much about the warnings. Paracetamol has warnings just like every other medicine. Its fine.... Enjoy your US holiday. We are going on Friday smile.gif cant wait!!!!

#7 KezT

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Posted 12 July 2009 - 06:56 PM

When we were discussing melatonin with our GP he said it wasn't fully tested/licenced for children, although reasonably widely used for ASD kids. The US packaging is probably reflecting that. If he has it at home, I am sure the US stuff is the same

#8 lynne

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Posted 12 July 2009 - 08:55 PM


Kez us correct there is no melatonin licensed for children. Even in the UK it is used off license which is why some GPs will not prescribe it. If a doctor uses a drug off license than if there are unknown side effects they are responsibe. Hence some doctors are reluctant.

#9 mossgrove

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Posted 13 July 2009 - 12:08 PM

Melatonin has never been through the drug approvals process for children in the UK (not sure about adults) as it is not a 'drug' in the same way as entirely synthetic compunds. Out GP does provide us with prescriptions, but only under the direction of our Community Pediatrician.

Simon

#10 Sooze2

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Posted 13 July 2009 - 06:15 PM

My GP practice won't prescribe Menetonin either, much to DS's consultant's discust. He says that as it hasn't been tested enough that if there are unknown side effect he may get sued to it's not worth the risk- he was nice about it though. I think the consultant is gutted because it has to come out of her budget rather than the GP's.

#11 lynne

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Posted 14 July 2009 - 09:03 PM


A GP has every right to refuse to prescribe Melatonin. Also there will never be any drug trials on children as it is not ethical to test children. Hence, the problem will continue.

#12 KezT

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Posted 14 July 2009 - 09:21 PM

QUOTE (lynne @ Jul 14 2009, 10:03 PM) <{POST_SNAPBACK}>
A GP has every right to refuse to prescribe Melatonin. Also there will never be any drug trials on children as it is not ethical to test children. Hence, the problem will continue.


but some drugs ARE licenced for children. How does that come about then?

#13 lynne

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Posted 15 July 2009 - 08:27 PM


First all drugs are tested in the lab and than some on animals. But you can not get 100% realistic data without testing on adults.

To get a licence to test drugs the drug company needs to go through an ethics committee for approval. So for example if the drug is for pain they would test on adults only (healthy) and adults with a specific problem to get the control groups. They would than compair the results from both groups to find out the reaction of the drugs side effects etc.

Because its likely that children will have pain they would than obtain a licence to test on children hence how a license can come out for children.


However you would not get a license to test melatonin on children as it would not be granted a license to proceed with the drug trial. Its too controversal and you would not get the trial data. Hence no license. Its also the same as trying to get a license to test drugs on pregnant women. They would not be granted a licence because it is ethnically wrong. (I hope this makes sense)

Also the drug results is on trial data so you only get confirmation of true side effects once is it being used on a regular basic. Which is about 5 years unless lots of problems occur, whicdh happedn with thalidamide.

#14 cmuir

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Posted 15 July 2009 - 08:54 PM

Hi

Thanks for info. Yes, I'm aware that melatonin is unlicensed - our GP is great, but the chemist all create a performance and have messed up hence reason I had to buy melatonin whilst on holiday in US. Label states unsuitable for under 18s. I'm sure that said, it's probably same stuff, just a different brand, I've not given kiddo it. He's having a melatonin break (and I'm taking it because I can't sleep!). I certainly notice the difference when R isn't taking it - he's up until after midnight. I'm knackered, but can't sleep if that makes any sense!

Caroline.

#15 Special_talent123

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Posted 09 August 2009 - 11:05 PM

QUOTE (cmuir @ Jul 15 2009, 09:54 PM) <{POST_SNAPBACK}>
Hi

Thanks for info. Yes, I'm aware that melatonin is unlicensed - our GP is great, but the chemist all create a performance and have messed up hence reason I had to buy melatonin whilst on holiday in US. Label states unsuitable for under 18s. I'm sure that said, it's probably same stuff, just a different brand, I've not given kiddo it. He's having a melatonin break (and I'm taking it because I can't sleep!). I certainly notice the difference when R isn't taking it - he's up until after midnight. I'm knackered, but can't sleep if that makes any sense!

Caroline.


i used to take that when i was 13/14 years old, and it gave me nightmares . they should only be prescribe if you had a prescription u have to hand that over for proof.

#16 NobbyNobbs

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Posted 02 October 2009 - 04:57 PM

does anyone know of an adult dose of melatonin? or is it the same as a childs? i'm planning on going to my GP to ask if i can be prescribed it but anticipate that it will either be a no or she'll have to look into it. i find it easier to deal with if i know about it so that i can be sure its 'right'. i'm currently on sedating anti-depressants, but the sedating effect is beginning to wear off and i'm back to long nights of no sleep.

#17 lorryw

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Posted 02 October 2009 - 06:07 PM

Hi ,
My son is 24 and takes 3mg, 30 minutes before going to bed.
We bought his on the internet having bought his first bottle of pills in a supermarket while on holiday in Orlando several years ago. Its sold as a health food supplement over there!

#18 JsMum

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Posted 02 October 2009 - 06:25 PM



It doesnt go by age but by your own personal tolerance, my son started at 2mg and if required upto 4mg, from the research I read it is fine at these doses but if the dose is higher it may cause nightmares, headaches in the morning ect,,,
my son takes kidnap a liquid form and it takes just 15mins to work, he mixes it in a little bit of milk.

Good Luck, it has made a massive difference to Js and My life.

JsMumxxx


#19 Special_talent123

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Posted 02 October 2009 - 10:45 PM

the melatonin dose is the same as child

#20 NobbyNobbs

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Posted 03 October 2009 - 11:46 AM

thanks! i know there are a couple of ASD children (courtesy of a doctor who suggested a good smack would fix them) in our village so wanted to check incase it was different for adults.

#21 Tally

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Posted 05 October 2009 - 07:14 PM

Just to let you know that a GP is not allowed to prescribe Melatonin. You would have to be referred to a consultant who could prescribe it. It seems crazy that it is so tightly controlled when it is freely available over the counter in other countries.

Bear in mind that it is not a strong sedative. If you have a lot of difficulty sleeping, it may not be enough.

#22 lorryw

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Posted 06 October 2009 - 08:54 AM

It is crazy, when we bought our sons in Orlando it was on offer....buy one get one free!!

#23 NobbyNobbs

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Posted 11 October 2009 - 02:20 AM

hmm. the likelihood of seeing a consultant for anything remotely relating to sleep or ASD is zero so i guess i'll have to keep complaining until they give up and send me to someone. i'm now having 3 nights a week of not sleeping. i took the tablet 4 hours ago tonight and i'm still wide awake so no sleep for me tonight. i think they just dont realise that i'm not exaggerating when i say i dont sleep for 3 nights in a row. last time they just gave me high dose sleeping tablets, told me they were addicting and i shouldn't take them and pushed me out the door rolleyes.gif

#24 peaches

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Posted 13 January 2010 - 06:01 PM

Raphael is 7 and has never been a brilliant sleeper. He has difficulty gettting off to sleep. He has a diagnosis of ASD (High Functioning Autism); ADHD; Developmental Coordination Disorder and Early Attachment Problems.

Not getting off to sleep at night means he has difficulty in getting up next morning for school. Its bad enough to get him going, ready, breakfasted etc on time but if he is tired it just makes it worse. He has seen a Consultant Psychiatrist and a Psychologist for his diagnosis, and we were asked if we were interested in medication for him but I declined. We have moved house and he has been referred to psychiatry in new area but we havent had appointment yet. If I were to see GP and ask him for melatonin would he prescribe it?

How is it presented? The other problem I have is that he doesnt take medicines. Full stop!

#25 cmuir

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Posted 13 January 2010 - 08:04 PM

Hi

The big problem is that melatonin is unlicensed in the UK. Some GPs aren't happy to prescribe it at all. In very similar circumstances to yours, my son's consultant suggested it to me, I said no, we moved house, couldn't cope with lack of sleep, then went back to consultant to say 'yes please'. Consultant had to write to GP to say under shared care protocol could he please prescribe medication once trial period under her care had passed. GP wasn't happy intially, consultant phoned GP, and GP eventually wrote prescriptions.

In my son's case, it's made a huge difference. Initially he refused to take it, but once he's realised that it helps (he's no longer pleading with me to knock him out at 1am because he can't sleep), he takes it readily and will even ask for it if I forget. It can be prescribed in tablet form or capsule form. I know that some people put the power into a drink for example.

In our experience, R takes a melatonin break during school holidays generally - usually for 3 weeks at a time. Have to say, it's only then I realise that I take melatonin for granted and that it really does help a great deal.

Best wishes

Caroline

#26 joybed

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Posted 14 January 2010 - 10:17 AM

Melatonin was prescribed to Marcus by a paediatrician and then our GP prescribes it. It is a special order med so you need to give the pharmacist a bit of warning but we have had no problems. Marcus happily takes tablets but one night said he thought he could manage without it after 3 hours he finally gave in and took it, he has never refused it again. He has a break at his Nanna because she doesn,t approve of "drugging" a child to make them sleep no amount of reasoning will make her see sense. We have capsules that easily dissolve in a drink and are undetectable.

#27 Suze

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Posted 14 January 2010 - 01:03 PM

My son takes it and it has helped enormously particularly with nightmares/hallucinating, and sleep walking which virtually stopped when he was prescribed it.We get it from our GP , It has helped my son alot as he would get very stressed about getting/trying to go to sleep.

#28 baddad

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Posted 14 January 2010 - 03:49 PM

Hi Peaches -
Don't know much about melatonin etc, but what did strike me was the problems you recount with getting your son up in the morning...
While getting to sleep may be anxiety related or something else like that, the fact that he can't wake up is contra-indicative to it actually being a 'sleep disorder' - it's more of a 'getting to sleep disorder', IYSWIM?
I'm sure it wouldn't be very popular with your son, but if you started the whole process of him going to bed significantly earlier in the evening, bringing any routines forward to accommodate that, wouldn't it have the same effect (and probably be better for him in terms of the quality of sleep he got) than medicating him at his current bedtimes?
If not already in place, very predictable routines with clearly defined and predictable stages and expectations can make a huge difference. Evening baths, wind-down time, bedtime stories, music, special lighting - whatever helps him sleep (rather than being a distraction that keeps him awake, as any of the last three can be for some kids) or gets him to a place in his head where he's ready for sleep...

Joybed - you mentioned that your son has a break from it when he's at nana's. Does he not sleep when he stays at nana's, or do his sleep patterns change while he's there? unsure.gif

Hope that's helpful

L&P

BD biggrin.gif



#29 cmuir

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Posted 14 January 2010 - 04:52 PM

QUOTE (baddad @ Jan 14 2010, 03:49 PM) <{POST_SNAPBACK}>
If not already in place, very predictable routines with clearly defined and predictable stages and expectations can make a huge difference. Evening baths, wind-down time, bedtime stories, music, special lighting - whatever helps him sleep (rather than being a distraction that keeps him awake, as any of the last three can be for some kids) or gets him to a place in his head where he's ready for sleep...
BD biggrin.gif



Hi

Totally agree with Baddad. We tried lots of things before seeing melatonin as a last resort. However, winding down time, avoiding exercise, drinks/food before bedtime, excitement, games or anything else that stimulates the imagination is worth avoiding. Routine is also important, eg a relaxing bath followed by supper (more of a snack with a small drink), then bedtime story, soft music, soft lighting, etc can really help create a relaxed ambience and encourage sleep. I try and encourage R to talk to me about his day in an attempt to establish if anything's playing on his mind. The Sleep Scotland website may we worth a visit also. Perhaps a visual story to depict the routine may help also.

Caroline.

#30 peaches

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Posted 16 January 2010 - 08:43 PM

Thing is, no matter how early we start the bed time process, he can still be going at midnight.

#31 chris54

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Posted 16 January 2010 - 09:17 PM

I just thought I would add my 2 penny worth, Bedtime routine stares at about 7, with bath, If we are lucky he is in "bed"by 9. Will be up and down a few times with "I need a drink of water" etc. We let him read till he is ready to go to sleep or we go up, then its lights out. He has no TV or music in his room. Most night he is asleep by 11pm, some night shortly after 9pm. ( he is 9).


On a different note. At work we have a resident who does not go to sleep until 4 or 5am, Well more than one but this particular one is unable to access or let you know what he wants, due to low mental ability, There are two schools of thought, do we put the TV, etc on to keep him company, or leave him in a quiet room to let him settle and sleep.
With the TV,etc on he is more settled but later going to sleep.
Without, he seems more agitated but will be asleep sooner.

#32 baddad

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Posted 16 January 2010 - 09:59 PM

QUOTE (peaches @ Jan 16 2010, 08:43 PM) <{POST_SNAPBACK}>
Thing is, no matter how early we start the bed time process, he can still be going at midnight.



Yes, know that feeling. Then he slept in 2hr 'shifts'. The only cure was perseverence - there was a period of many months when i spent most of the night sleeping on the landing so I was on hand straight away to steer him back into bed when he got out. That was it with my son, two hour stretches of sleep max with long bouts of waking in between, and he never needed calling in the mornings!
He still wakes at five-thirty six most mornings and wakes a few times in the night, but he amuses himself rather than bothering me because he learnt years ago that bothering meant back to bed! (actually, he does wake me, but I keep an ear open rather than both eyes, iykwim). He'll also now go to bed when told as he knows 'resistance is futile', and now will take himself to bed because that's often preferable to sitting up with me once i take over the remote at nineish...
Some kids just don't need that much sleep, and so they just have to learn that parents do, and not to disturb them. Other kids do need that much sleep but rally against it (sorry to say it, but they can usually be spotted by the fact that they can't wake up in the mornings - if you think about it, it's logical sad.gif) For some kids it's more complicated and they need sleep but can't get it, but usually in those cases the problem is apparent night and morning and through the night too..
When you say 'it doesn't matter what time we start' is there a pattern of behaviour that you can predict - i.e. does he get up for drinks, to say he can't sleep, because he is 'angry', or because of noises/monsters/etc etc? If so, have very clearly defined responses to those things, all of which lead very quickly and firmly back to bed. Do the camping on the landing thing if necessary so he doesn't get any further than that - back into the living room/whatever is fatal.
Hope that helps

L&P

BD biggrin.gif

#33 joybed

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Posted 18 January 2010 - 11:05 AM

His routine is completely different at his Nannas because he has no school. They stay up later and then watch a DVD in bed he never falls asleep alone even though he is 14. He is also allowed to sleep as long as he wants in the morning, actually he does what he likes all the time. AT home he has school and is put to bed has a story and then left to sleep. Without melatonin he would become very distressed and lay awake for ages and then wake shorly after falling to sleep. As I have such a busy life and have loads to do after the kids go to bed I was exhausted as i would spend my time answering repeated requests for things but the real problem was that Marcus was exhausted and not functioning at school this impacted on his behaviour.
The other 2 don,t sleep either andi have tried every bedtime routine under the sun, reward charts, night lights, heated bears to sleep with, IPOD pillows to try to keep there head on the pillow nothing works. I think the problem with them is that they are twins and wind each other up, they have there own rooms but tend to sleep together and short of locking them in there room (which obviously I don,t do) I can,t keep them apart. I can cope with anything but them constantly shouting downstarirs and running around is really challenging especially when I have had a hard day at work.

#34 JsMum

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Posted 18 January 2010 - 12:55 PM

he has difficulty in getting up next morning for school. Its bad enough to get him going, ready, breakfasted etc on time but if he is tired it just makes it worse.


Interesting this statement as its almost a carbon copy of J when he was in a mainstream school, and not getting his needs met educationally or socially, Could I ask how things are at school? bullying, social skills, ability levels, motivation ect.

When my son had these behaviours they where there to aviod a situation he was going to struggle in, School!

Js has had a fair few expected and unexpected changes lately and this has caused a few difficulties in settling in the evening and he has been home for a week and due to not requiring school he has been left to get what sleep he can get!

JsMumxxx




#35 peaches

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Posted 18 January 2010 - 09:57 PM

Tomorrow I have his review at school. He seems to be doing better at his new school and Im happy. He basically wants to stay at home all day and play DS or Wii.

My husband does his bedtime routine tonight and I made him put him to bed an hour earlier (both of them protested). He actually went to sleep! I will see if he gets up in the morning, if he does we might have it cracked.



#36 baddad

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Posted 18 January 2010 - 11:43 PM

QUOTE (peaches @ Jan 18 2010, 09:57 PM) <{POST_SNAPBACK}>
My husband does his bedtime routine tonight and I made him put him to bed an hour earlier (both of them protested). He actually went to sleep! I will see if he gets up in the morning, if he does we might have it cracked.


Don't count your chickens! laughing.gif
But really, really hope so...
At the very least it is a good step in the right direction, and however much they protested both the bedd-er and bedd-ee must see the value in that.
He may still need dynamite to get him out of bed in the morning, but either way he'll have had more sleep than he usually gets, which has got to pay dividends at school thumbup.gif
Tell him very well done smile.gif

Very best for that review, too.
L&P

BD biggrin.gif

Edited by baddad, 18 January 2010 - 11:43 PM.


#37 JsMum

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Posted 19 January 2010 - 08:41 PM

QUOTE (peaches @ Jan 18 2010, 09:57 PM) <{POST_SNAPBACK}>
Tomorrow I have his review at school. He seems to be doing better at his new school and Im happy. He basically wants to stay at home all day and play DS or Wii.

My husband does his bedtime routine tonight and I made him put him to bed an hour earlier (both of them protested). He actually went to sleep! I will see if he gets up in the morning, if he does we might have it cracked.




Relieved to know your happy with school and that he is doing better, maybe there is a degree of that he has worked hard all day though and it tires him out, though do understand he also wants to go on his wii and ds too, when J was at mainstream school he didnt go on any consoles in school hours, it was home education/activities.

Anyway hope the review was positive.

Great news about the bedtime routine with Dad been successful, is it just your son asleep or both your son and husband!

JsMumxxx


#38 timewarpbunny

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Posted 10 August 2010 - 12:01 PM

Hi everyone,

I'm a newbie to the forum but thought I would post for people's personal opinions on this. My 4 yr old daughter was diagnoses about 14 months ago with an asd, probably aspergers.

We're coping quite well but the thing that is literally exhausting me at the moment is lack of sleep. Elodie only seems to need 4-5 hours a night. She didn't go to sleep until 2am this morning, despite being put to bed at 10pm. Then she was up before me at 7. I would like to say that's a rare occurence but it isn't. It's one of the reasons I had to give up my job, I couldn't do it properly with the lack of sleep.

I've been reading up about melatonin today and I think I'm willing to give it a go although right now I'd try just about anything. We're seeing her consultant today for her 6 month check and I will ask for it.

How readily do the NHS prescribe it? How long does it take to start working? Can it be put with bedtime milk as she won't take medicines? I do understand it won't work for everyone but I really need to try something!

Jen Xx



#39 justine1

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Posted 11 August 2010 - 09:08 AM

QUOTE (timewarpbunny @ Aug 10 2010, 01:01 PM) <{POST_SNAPBACK}>
Hi everyone,

I'm a newbie to the forum but thought I would post for people's personal opinions on this. My 4 yr old daughter was diagnoses about 14 months ago with an asd, probably aspergers.

We're coping quite well but the thing that is literally exhausting me at the moment is lack of sleep. Elodie only seems to need 4-5 hours a night. She didn't go to sleep until 2am this morning, despite being put to bed at 10pm. Then she was up before me at 7. I would like to say that's a rare occurence but it isn't. It's one of the reasons I had to give up my job, I couldn't do it properly with the lack of sleep.

I've been reading up about melatonin today and I think I'm willing to give it a go although right now I'd try just about anything. We're seeing her consultant today for her 6 month check and I will ask for it.

How readily do the NHS prescribe it? How long does it take to start working? Can it be put with bedtime milk as she won't take medicines? I do understand it won't work for everyone but I really need to try something!

Jen Xx

Hi
My four year old Dan got his prescription last week from the paed who diagnosed him.I told him while I was there about his poor sleeping habits and he gave me a slow release melatonin,I didnt have to ask he suggested it would be best.

You could speak to your GP given that she has a diagnoses I dont see there being a problem.I am not sure if you can put it with her milk,Dan has a tablet form,but you can ask when you go.

#40 timewarpbunny

timewarpbunny

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Posted 11 August 2010 - 10:30 AM

QUOTE (justine1 @ Aug 11 2010, 10:08 AM) <{POST_SNAPBACK}>
Hi
My four year old Dan got his prescription last week from the paed who diagnosed him.I told him while I was there about his poor sleeping habits and he gave me a slow release melatonin,I didnt have to ask he suggested it would be best.

You could speak to your GP given that she has a diagnoses I dont see there being a problem.I am not sure if you can put it with her milk,Dan has a tablet form,but you can ask when you go.


We went to the consultant yesterday and it's (another) new one. However she was brilliant, made a point of engaging with Eli, and as soon as I asked about melatonin she agreed although she doesn't like to prescribe it to children under 11. She had her first tablet last night , was asleep by 9:20!! She woke at 3:40am but was soon tucked back down with a drink and her tom and jerry dvd and slept til 10am!

She is slightly more hyper today, whether that's down to the melatonin or the fact she's just had a good nights sleep i don't know!! thumbup.gif




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