lisann Report post Posted October 23, 2005 Hi Char is 4 now and his consultant has been trying to get us to use Melatonin on him since he was 2 due to extream poor sleep. We have used the natural remedies without any luck and the sleep diary and the calming down period.Nothing works we gave in to non herbal meds at the begining of the year and was prescribed some anti hisameens ( excuse spelling) these had the wrong effect and Char was bouncing off the walls throughout the night and crashing during the day for 40 mins then back up and off we go again.We have been suffering in silence since August when we stopped the anti his' and the sleep is getting to me and my hubby.He normally drops off at around 8 / 8.30pm then back awake at 12.30pm and four more times on a good night and 7 / 8 on a bad one.He just comes in our room and jumps on the bed takes himself downstairs floods the bathroom or shouts "Dad come here or Mum do this or Dad get shower ". It is driving us mad and as you can imagin we are constanly tired but Char is full of beans throughout the day. I don't want to give in to the Melatonin but if it helps us get a few hours sleep it must be worth it?? Has anyone had any dealings with it and does it work???? Lisa Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 23, 2005 Lisa You may wish to read this thread here.... http://www.asd-forum.org.uk/forum/index.ph...18&hl=melatonin Simon Quote Share this post Link to post Share on other sites
sue1957 Report post Posted October 24, 2005 I'm a complementary therapist and work with children with hyperactivity and sleep problems. Although its natural, melatonin is a form of medication that treats the symptoms, but not the causes. That in itself isn't necessarily a bad thing, if it means the family as a whole get a decent nights sleep. But over the long term, there is a lot that can be done to find out why a child cannot sleep. It may be that a child's seratonin/melatonin pathway isn't functioning as it should, in which case melatonin supplements might appear to work. Another option is to look at why it isn't working. It may be a nutritional deficiency, or lack of light, etc. If melatonin supplements don't work then the problem may be something completely unrelated, such as ongoing chemical stress, or a high carb diet stimulating adrenaline, etc. It may answer why melatonin seems to work for some but not for others, or only be partially successful. There are often several causes. It takes me between an hour and one and half hours to take a case history, preferably with the parent alone, and then I do an observation on the child. It is then possible to work with the parent to introduce some strategies such as toxin reduction, diet adjustments, perhaps full spectrum lighting, etc first, depending on the individual circumstances. You say that you have tried natural remedies and that they haven't worked. My experience is that in the long term they sometimes don't, unless you remove causes as well. Sometimes removing the causes is enough for the body to relax sufficiently and the remedies aren't needed at all. Whilst not every cause will be open to influence, quite simple changes can have positive effects, not just on sleep but on mood, anxiety levels etc generally. Quote Share this post Link to post Share on other sites
loulou Report post Posted October 24, 2005 Hi Lisann, I give my son (7) Melatonin as he finds it very difficult to get off to sleep. Once he's asleep he stays asleep. Melatonin is the hormone our bodies release naturally when we get into "time for sleep" mode. Giving melatonin will help a person drift off to sleep, but will not necessarily KEEP them asleep. It's definately worth a try though. Best of luck, Loulou x Quote Share this post Link to post Share on other sites
lil_me Report post Posted October 24, 2005 My son has been taking it for a while now, it was either that or he could stay awake for days on end. I was speaking to a pharmacist last week and he said the capsules last them longer if they will take them than the medicine or tablet form. We're trying those from next week. Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 24, 2005 The best bit about the capsules is that you can open them up and hide the powder in something, e.g. jam or a milkshake. Simon Quote Share this post Link to post Share on other sites
lil_me Report post Posted October 24, 2005 The downside she said is with that it removes the coating which is what helps it last longer from what I gathered from the conversation. My sons usually ok with tablets so I am just hoping he'll be ok with the capsules as 4-5 hours per night still isn't much Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 24, 2005 You can also get slow-realease melatonin capsule, which sounds like it might be what you need. In the case of our DS we culd hold a noisy party in his room after he falls asleep and he may well sleep throught it. It's getting him to sleep in the first place that is the issue! Simon Quote Share this post Link to post Share on other sites
lil_me Report post Posted October 24, 2005 (edited) When my son is asleep nothing wakes him, all of his bedroom furniture was built in his room when he was asleep etc but he doesn't sleep for very long and is difficult to get to sleep. Edited October 24, 2005 by lil_me Quote Share this post Link to post Share on other sites
mici Report post Posted October 24, 2005 my son is n melatonin it seems to be great to get him off to sleep but still is waking up 2 - 3 times. must say though its so much better with the melatonin. consultant perscribed 2mls before bed then at 9 oclock 3mls but the slow releasing one but to be honest i found these a little much as he was quite drowsy in morn. so at the mo just sticking to 2mls and coping . consultant mentioned about reducing the 3 mls slow release to 2mls but not really sure about that as ifeel that it is not concering the real problem and if i could would much prefere to try and sort his sleep out naturally. some times i wonder wether im dreaming but thats what i hope to do. can only try !!! found this site few bits of good info here hope it helps http://www.autism.org/melatonin.html hope it will help good luck mici xx Quote Share this post Link to post Share on other sites
lisann Report post Posted October 24, 2005 Hi all Thanks for all the replies will have a good read and hopefully get some Melatonin this week fingers crossed!!! Lisa x Quote Share this post Link to post Share on other sites
ange Report post Posted October 25, 2005 hi there My son has been taking Melatonin for about a two years now. Before he was prescribed this it took ages to get him off to sleep. Now he goes off to sleep quite easily. A couple of times we have run out, and it's been a nightmare!! It dosen't keep him asleep all night, but it certainly works at getting him off to sleep. My local doctors surgery refuse to prescribe it for him, so i have to get it direct from the hospital. The consultant isn't really that keen on continuing to prescribe, she keeps getting us to wean him off...but then all the problems start up again. We went for 2 weeks without it once, and got hardly any shut eye!! We'd be lost without Melatonin. My son dosen't understand when he is tired, or just dosen't get tired. BUT when he takes his Melatonin his behaviour really improves.....cause everyone including him needs to sleep!!! Quote Share this post Link to post Share on other sites
lisann Report post Posted October 25, 2005 Yep sleep getting worse phoned his consultant's receptionist and was told I couldn't have an appointment until January!!!!! Got a little anger and had a few choice words and she promised to speak to the consultant and try to get us some prescribed without us going in for visit phew!!! Let you know end of week how we get on. Thanks everyone for advise Lisa x Quote Share this post Link to post Share on other sites
Calsdad Report post Posted October 25, 2005 Hi all this is my first post and just wanted to say hello before I comment. My son (9) has been diagnosed with autism for a couple of years now and at the beginning of his diagnosis it was suggested that he try melatonin and I was very reluctant to try any form of medications "natural" or otherwise, but it became obvious that he just wasn't going to get a fully natural sleep which resulted in him being very aggressive the next day and would often just be sent home from school for violent behaviour over what was perceived as a minor issue by others. So a year ago he started on Melatonin 6mg slow release, it helped him to start with but only a month later and it seemed to not be very affective and if he had a day which was "different" or perhaps someone would have said something he didn't understand etc etc etc he would just be awake all night thinking about it. He was only getting 1 or 2 nights of good sleep a week. It was affecting him greatly at school as he hasn't been able to be in the classroom environment for more that a few minutes a day and has 1 - 1 support all day. Yesterday (half term holiday) the SEN teacher from his school, his class teacher, myself, his doctor and a couple of others met at our house to discuss what other help could be offered so that he can maximise his potential at the school because to be honest he is very smart it's just the autism behaviour that means he misses out on so much. To cut a long story short and so I don't hijack this thread he was precribed Risperdal tablets which may help with his impulsive behaviour (fingers crossed), so i've come full circle with my son as at the beginning of this journey I was against all medication and now I realise (in my son's case) that he is in need of help so he doesn't miss out on his education etc. Malc Quote Share this post Link to post Share on other sites
kirstie Report post Posted October 25, 2005 Hi all, Not been around much of late but i was reading this thread with interest. My Son Lewis (6) has just been prescribed melatonin. I thought i'd try him last night with it. There he was hogging the telly when i gave him a drink of hot chocolate, (around 7.15 pm) and within half an hour he was fast asleep. I felt like an utter witch, and that i'd tricked my son in some really underhand way by 'drugging' him so he would go to sleep. However, my guilt was short lived when at 12.15pm he was wide awake again! So last night was spent trying to get our newborn to sleep (2am) then Lewis (3am) and then propping my eyelids open with matchsticks for the 4am feed and trying not to throw my alarm clock at the wall at 7am!!!!!!!!!!!!!!!!! maybe we tried it too early in the evening, i'll try it again tonight but if we are having more of the same, it's time for a re-think! Maybe he will need the slow release melatonin. Take care, and sleep well zzzzzzzzzz Quote Share this post Link to post Share on other sites
lisann Report post Posted October 25, 2005 Hi Calsdad welcome to the forum That's interesting hope the Melatonin works for us need some kip!!! Lisa x Quote Share this post Link to post Share on other sites
mossgrove Report post Posted October 25, 2005 Kirstie Remember the melatonin will help get a child to sleep, but there are limits on how far it will extend sleep. J goes to bed at 10.00 because we found that (even with MT) bringing it forward earlier just meantnhe was up at 6.00 or even earlier. It's still MUCH better than having him awake at midnight asking us to make his brain stop, but it's not a miracle cure either. Simon Quote Share this post Link to post Share on other sites
Calsdad Report post Posted October 25, 2005 lol, I know the feeling. Callum used to wander around the house freely at night time and would come and wake me up several times a night but he has got much better lately, I think it's because he doesn't like the alarm that has been fitted to his door, which was as a result of him messing with the cooker and leaving the gas on in the middle of the night, Every child is an individual and melatonin will and does work for some but not for Callum!! Good luck!! Malc Quote Share this post Link to post Share on other sites
lisann Report post Posted November 1, 2005 HELLO ALL WE GOT IT WILL TRY IT TOM AND REPORT IN ALSO GOT SOME SEDAIVES TO GIVE HIM DURING THE NIGHT IF HE WAKES UP.DOC WAS NICE AND SUGGESTED RESPITE FORM SS IF THIS DOESN'T WORK. LISA Quote Share this post Link to post Share on other sites
lisann Report post Posted November 2, 2005 Oh my god I gave Char his melatonin half an hour ago and he has just come up stirs and got into bed. Now feeling guilty maybe the dose is too strong. He's already fast on now he was very drosy and his speach was slurry.Have I done the right thing. Not felling like a good mummy at the mo!!!! Lisa x Quote Share this post Link to post Share on other sites
lil_me Report post Posted November 2, 2005 (edited) lisa some do 'zonk out' on the first dose or few doses. With my son I keep him off it some days now as I know children taking 4 times the amount he is as they have built up a resistance over time and I didn't want that. You might find it has the same effect as time goes by but takes a little longer to get into his system and take work, for example my son used to take his 1/2 hour before bed, recently changed to an hour. Don't feel guilty he needs his sleep as much as you do and all you are doing is helping him get that <'> Edited November 2, 2005 by lil_me Quote Share this post Link to post Share on other sites
lisann Report post Posted November 3, 2005 Hi Thank for advise last night lil me put my mind at rest. We had first night with only one wake up wow it was fantastic although had a banging headache this am thinks it was prob because I have never had more than 4 hours in one night. Fingers crossed for tonight. Can I ask can I give hima break at the weekend so he dosen't become use to it???? Lisa x Quote Share this post Link to post Share on other sites
lisann Report post Posted November 7, 2005 Hi All quick update Char has been taken mel' now for 4 nights.First few great last few not great last night was hell.He went to sleep at 7.15pm and was back up at 11.45pm and didn't go back.wWe are Nackered he watched tractor tom over and over the theme tune is embalked in my brain LOL!!!!! Decided to not give it to him tonite see if we can get any better sleep patern.We can up his dose by 2mg every fortnight up to 10mg but that seams a lot.He is already on 4mg and he's only 4 years old. Don't know what to do but can't have sleep gettting worse. Lisa x Quote Share this post Link to post Share on other sites
denise2 Report post Posted November 8, 2005 I wonder how they work the doses out? Our son is on 1 x 3mg capsule a night, he is 11 years old. We asked the paediatrician if this could be raised when he went through fazes of waking at 2 am and we were told we were not able to give him any more, just try to give it later. Denise 2 Quote Share this post Link to post Share on other sites
lil_me Report post Posted November 9, 2005 I spoke in depth about this with my sons paed, CAHMS advisor and psychologist. They said to regulate it myself when it comes to giving him a break from it. My son doesn't take it on a weekend usually, and we usually lay off it as much as possible in the holidays as I didn't want him on 10 which is what my friends son has ended up on at 7 years old. It's definately not an instant cure and my son still wakes through the night but it is better. We also now have a deal where he stays in his bed with his games on if he wakes before his alarm goes off, sometimes he won't and sometimes he is just way too noisey so I have to take him downstairs but most nights he's much better. I know exactly what you mean about the headaches, I get the same if I have too much sleep when I am used to 5 hours max, only happened a couple of times when he's stayed out. Quote Share this post Link to post Share on other sites
lisann Report post Posted November 15, 2005 Thanks lil me we decided to give the mel' a rest at weekends and we are putting the dose up on friday to 6ml.I decided he can't have any natural Mel' in his body cause I have never known a child have such little sleep yet still be full of beans!!!LOL He is now dropping off like a log at 7pm each night and back awake at 10.30 ish ARGGGHHH!!! We then go on to a further 4 or 5 wake up times and up for good around 5am.this wouldn't be so bad if he was quite and just watched his telly.But hell no he shouts the most strange things like Get shower dad! NOW!! Morning Breakfast! Pop! One hour now???? Driving us crazy infact we are now both awake at the same time cause the noise is crazy it is even waking his sister up who is at the other end of the house with her door shut!!!!!! Let see if the 6ml make a diff' Lisa x Quote Share this post Link to post Share on other sites
lisann Report post Posted November 24, 2005 YEPPIE we had the first ever full night sleep in 4 years and 4 months.He was spark out at 8pm and didn't here him until 5.30am there is a god!!!! Will it last me thinks not!!! Lisa x Quote Share this post Link to post Share on other sites
smiley Report post Posted November 24, 2005 Lisann - Excellent news! Bet it feels strange not being sleep deprived! I've had a good read through this thread (and some others i've found). M has just been prescribed Melatonin..... http://www.asd-forum.org.uk/forum/index.php?showtopic=4632 His sleep pattern is up and down at the moment, but do you think this will help with the emotional problems he's been having?? Very confused now! Quote Share this post Link to post Share on other sites
Cariad Report post Posted November 27, 2005 Hi there. Toby (9) has been on Melatonin for a few months now, first of all it worked but now it makes no difference , so i've stopped giving it to him. He still wakes throughout the night and i try to nap in the day to "catch up". If you do get it i hope it works for you . Quote Share this post Link to post Share on other sites
TuX Report post Posted December 3, 2005 (edited) Does anyone know of any reliable companies that sell Melatonin in the UK? I have wanted it for a long time,the GP doesn't even know what Melatonin is,and the last time I asked Holland and Barrats,they had no idea what it was either,unlike everyone here I'm unable to get it on prescription. [Edit] Anyone bought anything off Biovea before? Am seeing good reviews of them,but do not know whether to trust them. Edited December 3, 2005 by TuX Quote Share this post Link to post Share on other sites
NikkiSmith Report post Posted December 4, 2005 Just thought I'd add that my 3yr old was taking 3mg of Melatonin and it worked (yeeehaw!) for about 2 weeks, so the paed doubled the dose, which again worked for a fortnight and then stopped (aaarrrggh!) So he went back to disturbing the whole house all night and having us all up by 4am! We have recently tried Vallergan Forte syrup and chloral elixir paediatrics - neither of which had any effect so out of desperation I gave him the 6mg of Melatonin and it has worked for 2 nights (oh the joy of a good nights sleep) So we have been told to give it to him every 4th night, so that (in theory) it keeps working. Tux - my dp buys his on ebay and in my opinion, is worth every penny! It makes him a much nicer person when he has had some sleep! Nikki. Quote Share this post Link to post Share on other sites
nellie Report post Posted December 4, 2005 Tux, You can't buy melatonin over the counter in this country, you can only get it on prescription. Your GP is being unreasonable, ask him to either find out or refer you to someone who will! Although this NAS link relates to children, it mentions melatonin. It might be worth showing this to your GP. Helping your child with autism to sleep better http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=367&a=3376 Good luck Nellie xx Quote Share this post Link to post Share on other sites
TuX Report post Posted December 4, 2005 (edited) Cheers NikkiSmith and Nellie!! Never thought of checking Ebay. Nellie,as an ASD adult would I be able to get it on prescription,or is it just kids they limit it to? I'll pay for it/buy it if I have to,just wondering about the options. I agree about the GP,I do not understand why he doesn't know what Melatonin is,and does,when I know what it is and am not trained in anything like this. He has also refused to give me a short supply of sedatives when I ended up missing over a week of college because I could not get any sleep,stating i'm on enough medication already(600mg of Tegretol daily,some people take over a 1000mg- for epilepsy and are on other medications) I spent over �4 on Nightol to see if that would work and even when I ODed it,it did nothing to help. Would it be better to see a GP who doesn't know me,rather than the usual biased GP who has no idea what a hormone is? Sorry for the thread hijacking,didn't want to make another thread of the same thing. Edited December 4, 2005 by TuX Quote Share this post Link to post Share on other sites
alibaly Report post Posted December 4, 2005 Tux, I buy it on the internet from Biovea. Quote Share this post Link to post Share on other sites
vastsarah Report post Posted December 4, 2005 hi all,my son is on 3mg each night . But most weekends we try not to give it to him. For harry it works in 3/4 hour and its great not only for me but his 3 brother who share his bed room. The youngest brother is really geting the benifits of having a full nights sleep . like some mums here i wasnt happy about druging him but im glad i did. And he isnt daft because he knew within a week that it wasnt a vitamin! from sarah Quote Share this post Link to post Share on other sites
TuX Report post Posted December 4, 2005 Tux, I buy it on the internet from Biovea. Cheers alibaly! Quote Share this post Link to post Share on other sites
lisann Report post Posted December 5, 2005 Hi Al Char now on 8mg of melatonin at night gets him off to slepp within half an hour but doesn't keep him asleep!!! We are still up 6 /8 times a night we had the Vallergan Forte and thats made him hyper and we have now got the chloral to try with the Melatonin but it does seam a lot of drugs for a 4 year old and if this doesn't work where do we go next !! Lisa x Quote Share this post Link to post Share on other sites
nellie Report post Posted December 5, 2005 Nellie,as an ASD adult would I be able to get it on prescription,or is it just kids they limit it to? Tux, No, it's not just kids they limit this to, adults can get prescriptions for Melatonin. If your GP refuses to prescribe this for you, you could ask for a referral to someone with expertise in autism/AS. It might help if you took someone with you for morale support. Nellie xx Quote Share this post Link to post Share on other sites
mossgrove Report post Posted December 6, 2005 As melatonin is not specifically approved in this country for sleep issues, most GP's will decline to prescribe it, but they should be willing to refer you to someone who can. In J's case it is prescribed by his community pediatrician.He takes 4mg but I believe they would go up to 6 if needed. Trial and error seems to be needed. I buy it for my own use from Biovea. Simon Quote Share this post Link to post Share on other sites
