JsMum Report post Posted November 24, 2007 J has finally been taking his easy fast melt Melatonin and the difference is amazing in just three days, its still quite late but he is asleep within half an hour of taking them. I cant believe it! It was 10:30pm last night, actually asleep, and the difference in J this morning is amazing, we are trying to night by night get J into bed an hour earlier each night, the aim tonight is 9:30pm. What difference has melatonin made for your child? JsMum Quote Share this post Link to post Share on other sites
Tally Report post Posted November 24, 2007 I'm not a child, but I find it helps me go to sleep at the right time. I am a night-shift worker, but even before that I could not get to sleep until very late, and then found it hard to get up in the morning, and felt tired all day because I'd only had a few hours' sleep, but still could not sleep until very late again. Now I work nights, I feel tired when I get home. I can normally go to sleep, but wake up around midday and can't go back to sleep. I sometimes end up spending all day in bed trying to sleep, and finally end up getting a few hours in the evening, but I am still tired for work. I am tired all the time, but still unable to sleep. It was like this before I worked nights too, so that is not what causes the problem. With Melatonin, I go to sleep after work. I only wake up once during the day, but I go back to sleep quite quickly. I get up early evening and have a few hours to myself before I have to go to work. It is a much better routine. I am less tired, even though I am spending less time in bed. This means I am happier and can concentrate better. It has given me a life back. I don't take it when I am not working. I find I build up a resistance to it. I normally take only 1mg, but sometimes by the end of the week I need 2mg. You might find an hour a night is too quick, but any progress can only be a good thing. Quote Share this post Link to post Share on other sites
ASue67 Report post Posted November 24, 2007 M takes melatonin but it is in liquid form in a drink at night time. He won't take it if he knows I am giving it him which is why it is in a drink! He needs about 5 - 6 mg but this doesn't always work now. He originally started on 2mg and it worked really well at first. I also use melatonin as I have M.E and depression which really affect my sleeping. I take 3mg each night and it really does help me get off to sleep (although it doesn't stop me waking up frequently and then not going back to sleep during the night) Quote Share this post Link to post Share on other sites
mbrown Report post Posted November 24, 2007 I agree that melatonin is fantastic. I find it hard when parents are having severe sleeping problems and wont even try it. Obviously it doesn't work for all and the effects vary but I think that for us it has been the safest and most effective med/supplement we have used. Still working after over 3 years with no ill effects, it enables our 13 year old boy with high stress and anxiety levels to at lkeast get a decent nighrt's sleep. At first we disguised the melatonin in a milky bedtime drink but now he quite happiuly takes the capsules without problem. Anyone considering it's use but not quite sure, hopefully our posts will enable you to make a decision. I found the following article very helpful in making our decision. http://www.autism.org/melatonin.html MB Quote Share this post Link to post Share on other sites
krystaltps Report post Posted November 24, 2007 I would go so far as to say that melatonin saved our family. For the first 7 years of C's life none of us knew what a night's sleep was, as he got older it got worse. By the time he was nearing 8, he was awake until 2am on average and not sleeping at all at worst. He would get bored and wake his siblings up to play. I couldn't sleep as he was far more unpredictable then and I was worried about what he might get up to. I was considering packing in my job. We were all stressed and C was in a permanent fowl mood that had lasted so long that we all thought that the sleep-deprived ogre was who C actually was. He started on melatonin shortly after his 8th birthday and he's been on it almost a year now. He has the capsules but we split them open and he pours them into apple juice. He alternates between 2 and 4mg. We keep him off them at weekends and holidays as best we can to prevent familiarisation. He takes them at 9pm and is out for the count by 9.30. He doesn't always sleep right through, and he has more nightmares and night-terrors when he has taken his melatonin (1 or 2 a week), but at least he's getting some sleep (and us!). Within a few days of starting melatonin, C was like a different boy. It's so hard to describe the many, many ways in which his behaviour improved and how he was so much happier. The school were amazed, as were the doctors. C was the first child on the island to be prescribed melatonin and the positive effect it had on him has led to several others receiving it too. I know it's effect can vary person to person and that it doesn't suit everyone, but to us it's our little miracle. I'm glad you're discovering the benefits too, Jsmum Quote Share this post Link to post Share on other sites
Caroline- Report post Posted November 24, 2007 Melatonin has been fantastic!! My son has been on it now for two months, he takes the powdered capsule & most nights he's asleep by 7:45!! Before this he would be up until 1am & beyond 7 days a week (not good when he has school in the mornings!!) having said that.........he fell asleep tonight at 7:45 but woke up half hour ago & is still awake now............... Quote Share this post Link to post Share on other sites
kazemporium Report post Posted November 25, 2007 HI All how did you get the melatonin prescribed, was it through your GP's or Paed ? I mentioned it to a the gp once but it was a locum and they were not impressed by my request, just told me to try all the usual, no tv, playstation etc at bedtime. My 7yr old son is a nightmare, the lack of sleep is really affecting his school work, and his temper through tiredness at home is driving me crazy. he through a temper tantrum for an hour after school last week, it was like having a toddler at home again. I cant cope on the amount of sleep he has so god knows how he keeps going. Quote Share this post Link to post Share on other sites
krystaltps Report post Posted November 25, 2007 Hi Kaz, My biggest piece of advice is to read as much as you can about melatonin, then speak to your boy's paed. In my LA the paed can't prescribe it but she can tell the GP to prescribe. It can be different in different LAs. I told C's paed at one of his review meetings that his sleep pattern was getting progressively worse, that it was a battle to get him up in the mornings, that the whole family was suffering and that I was at the end of my tether. She said she would look into it.... Shortly before Xmas, the area network support co-ordinator (who's now my boss) met me in the staff toilets at my school and made the mistake of asking me how C was getting on - well, I told her the whole story with tears and snot and all (I know, not very dignified, alas - but I was exausted). She was due to go into a meeting with the paed and said she would talk to her, see if she could rush things along a bit. Within two days the paed phoned me at home to say she was contacting the GP to request melatonin and that he would phone me. The GP was reticent, as he'd never prescribed it before but I made it clear that we had tried all the usual stuff and that I had read up on melatonin, talked about regular breaks to prevent familiarisation and to keep the dosage low. He obviously realised I wasn't an idiot and agreed to prescribe. We didn't get it until late January simple because the pharmacy on the island didn't stock it and had to order it in for us. I dont think the Gp can prescribe it without the recommendation of the paed, but as I said, it varies from LA to LA. Hope this is of some help Quote Share this post Link to post Share on other sites
kazemporium Report post Posted November 25, 2007 Hi Kaz, My biggest piece of advice is to read as much as you can about melatonin, then speak to your boy's paed. In my LA the paed can't prescribe it but she can tell the GP to prescribe. It can be different in different LAs. I told C's paed at one of his review meetings that his sleep pattern was getting progressively worse, that it was a battle to get him up in the mornings, that the whole family was suffering and that I was at the end of my tether. She said she would look into it.... Shortly before Xmas, the area network support co-ordinator (who's now my boss) met me in the staff toilets at my school and made the mistake of asking me how C was getting on - well, I told her the whole story with tears and snot and all (I know, not very dignified, alas - but I was exausted). She was due to go into a meeting with the paed and said she would talk to her, see if she could rush things along a bit. Within two days the paed phoned me at home to say she was contacting the GP to request melatonin and that he would phone me. The GP was reticent, as he'd never prescribed it before but I made it clear that we had tried all the usual stuff and that I had read up on melatonin, talked about regular breaks to prevent familiarisation and to keep the dosage low. He obviously realised I wasn't an idiot and agreed to prescribe. We didn't get it until late January simple because the pharmacy on the island didn't stock it and had to order it in for us. I dont think the Gp can prescribe it without the recommendation of the paed, but as I said, it varies from LA to LA. Hope this is of some help Thanks for your advice, i have looked up a bit of info about it. Am worried that it may have an adverse effect and that he may become reliant on it to sleep. I have not seen anything to suggest that on the info i have read. I just have to establish some sort of sleep pattern for him. As he is obviously exhasted and the stress i have every morning is starting to take it toll on all of us. I cant believed i have to dress a 7 yr old everyday just to get him to school. Thats after taking an hr to get him out of bed. Quote Share this post Link to post Share on other sites
JsMum Report post Posted November 26, 2007 Hi Js Peadatrition and also his psychiatrist has both perscribed melatonin, we have a photo copy from the psychiatrist to give the gp for repeat perscriptions, they start on very low doses at first for any allergic reactions and then after a week up the dose if needed. for J it is taking around half an hour before he is asleep, he takes it between 9:30-10pm. I am not aware of any side effects but I know if he doesnt take it then there is more health implications such as stress, headache, increase anxiety and challenging behaviour. Keeping a routine for bedtime defo helps and we have visual displays, alarm bell, and other auditory support but what makes it hard for J is his Anxiety rises at actual bedtime, we dont have any electronic devises on past 9pm and these are not the problem areas usually it is J phsically feeling shaky and aggitated and obvous stress about the next day. I would keep a diary of the evening routine then after five days give it to the gp to see that its not that he is getting too stimulated with videogames/dvds. It is still going really well, and he is defo asleep by 11pm now and it has also made a difference to my sleep pattern too, I am actually asleep before 12am. JsMum Quote Share this post Link to post Share on other sites
kazemporium Report post Posted November 26, 2007 I thought it was the games, tv etc. But have been trying to stop the games and hour or so before bedtime. It would just be nice for him to be asleep by 9pm. I am going to try one more time to discipline myslef by establishing a proper bedtime routine again. I just don't seem to have the time to read to him, settle him down etc. I dont mean to be selfish but the time never seems to be there. I seem to spend all evening shouting and going up and down the stairs to keep telling him things over and over again. I dont even watch tv until i go to bed myself. My task for this week, get a bed time routine established and also discipline my husband to do the same at wkends when i am at work. Thanks for your advice Quote Share this post Link to post Share on other sites
JsMum Report post Posted November 26, 2007 I thought it was the games, tv etc. But have been trying to stop the games and hour or so before bedtime. It would just be nice for him to be asleep by 9pm. I am going to try one more time to discipline myslef by establishing a proper bedtime routine again. I just don't seem to have the time to read to him, settle him down etc. I dont mean to be selfish but the time never seems to be there. I seem to spend all evening shouting and going up and down the stairs to keep telling him things over and over again. I dont even watch tv until i go to bed myself. My task for this week, get a bed time routine established and also discipline my husband to do the same at wkends when i am at work. Thanks for your advice Hello, sorry if I have made you feel like your not trying hard enough, my post was more to ensure there is a routine, established bedtime and a timeslot where there is time for calmer times, story/game time, I really dont think its about disapline either especially in Js case, he knows its bedtime but for him he gets very upset and there is no way he will sleep in those circumstances, if it that he really does esculate at bedtime what about providing things that help calm him down, J has an aray of things to support this, mostly sensory, so lava lamps, visual routine all displayed and explained to him the exspectations I have, time scales with alarm alerts, and consequences if he does not comply after a warning, so no PSP the next day with it displayed on the Whiteboard or I put in my notebook. I think from what you have described you are really trying, its very hard to get children to bed as it is, add in special needs and it is a real challenge, it not easy, I fail some nights too, I am tired, fed up, lost the drive to try, it gets you down, but when your stronger you are doing your best. Dont feel like its your fault, its a really hard job to do, and some nights are harder than others. Keep going you are already doing a good job. JsMum Quote Share this post Link to post Share on other sites
kazemporium Report post Posted November 26, 2007 Hello, sorry if I have made you feel like your not trying hard enough, my post was more to ensure there is a routine, established bedtime and a timeslot where there is time for calmer times, story/game time, I really dont think its about disapline either especially in Js case, he knows its bedtime but for him he gets very upset and there is no way he will sleep in those circumstances, if it that he really does esculate at bedtime what about providing things that help calm him down, J has an aray of things to support this, mostly sensory, so lava lamps, visual routine all displayed and explained to him the exspectations I have, time scales with alarm alerts, and consequences if he does not comply after a warning, so no PSP the next day with it displayed on the Whiteboard or I put in my notebook. I think from what you have described you are really trying, its very hard to get children to bed as it is, add in special needs and it is a real challenge, it not easy, I fail some nights too, I am tired, fed up, lost the drive to try, it gets you down, but when your stronger you are doing your best. Dont feel like its your fault, its a really hard job to do, and some nights are harder than others. Keep going you are already doing a good job. JsMum HI I wasnt offened by what you wrote. I just feel like i have been a bot slap dash with regards to his bedtime routine. Tonight for example i went up and turned his t.v off at 8.30pm. I asumed as he was quiet he was settled down. He has just come back down the stairs at 10.30 to say he wants a drink, took him back up, tv back on and playstation and remote positioned near pillow. I have now turned off the tv, snuggled him up and turned the light off, i have reminded him he has breakfast club at school in the morning which he looks forward to so he has to be up early. I know it will be a struggle to get up. Thanks for your advice Karen Quote Share this post Link to post Share on other sites
Pippin Report post Posted December 1, 2007 P's been on it for 5 years now and still only needs 1mg. It made a huge difference to our lives....and his. When the Paed first advocated it melatonin was not available on prescription here so we bought it off the internet. We still do (with the GPs agreement) as he didnt suit the NHS`brand so well. We take a break at weekends and holidays, but it really shows that he still needs it then. His little brother is also showing some signs of long term sleep problems (though he is NT) and we occasionally give him 0.5mg with amazing effect. Quote Share this post Link to post Share on other sites