Amanda32 Report post Posted April 2, 2005 (edited) Morning all..... My son (nearly 9)as you know as problems getting off to sleep and lately he as not been feeling tired until after midnight. He still cant get up in the morning and dread him when he goes back to school to do work. He still plays with his toys Actionman comics etc but really find it difficult to get off to sleep. I have tried all the massage etc but still wide awake. As anyone been prescribed medication for their child for getting off to sleep or just if the child wakes up alot through the night? If so do I ask my GP to put him on trial as I can see his school work being affected. In his other school he used to fall asleep in class and sometimes I had to pick him up or carry him home. Now he his getting older he needs to start working harder and not be tired if you know what I mean. Please any advice about medication and whether you would recommend me doing something about it as he really wears me out not just the getting to sleep. Many thanks Amanda <'> Edited April 2, 2005 by Amanda32 Quote Share this post Link to post Share on other sites
Jadensmum Report post Posted April 2, 2005 I have just had 2 nights sleep with just one interruption and a lay in on a Saturday for the first time in 2 years!!!! Paedatrician prescribed Melatonin on Thursday. I gave J the slow release capsules in milk 30 mins before bed and apart from waking up once at 3-4am he slept all night (going to bed at 8pm) and slept in til 9am this morning!!! I feel human today for the first time in ages. I know it doesn't work for every child but I'm glad we've tried it. He's even happy when he wakes up!! Denise Quote Share this post Link to post Share on other sites
Minxygal Report post Posted April 2, 2005 We've been using melatonin for a year now and it has helped us no end. We give James 6mg about an hour before he goes to bed and it really does help settle him. You can watch him wind down and then get sleepy. I don't think we'd be able to cope without it. He's still up with the birds at rediculous times in the morning but at least we get a little time when he goes to bed. Quote Share this post Link to post Share on other sites
mossgrove Report post Posted April 2, 2005 Amanda The main effect of melatonin is to regulate the sleep cycle and help people get off to sleep. There is conclusive research that suggests melatonin will help people (adults and children) get off to sleep. Research about the effect of melatonin for keeping people asleep has been less conclusive, but many parents report that their children stay asleep better when they have taken meltatonin. I think it would be appropriate to use melatonin to help your son get off to sleep. Some GP's are reluctant to prescribe it so you may wish to speak to your pediatrician. Simon Quote Share this post Link to post Share on other sites
poppy Report post Posted April 2, 2005 Well we are still going with the dreadful anti-histermine with side effect of drowsyness,which Im not happy about.When he takes it he sleeps,if not stays awake.BUT....I have been onto suggested web site and have ordered some Melatonin.Awaiting arrival with crossed fingers! and hopes of Matt going peacfully off to sleep. Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 2, 2005 Hi poppy You said you went on a suggested site to get melatonin. Can you do this without your GP? is it safe etc as always thought you had to get the all clear off the GP first. Amanda Quote Share this post Link to post Share on other sites
Minxygal Report post Posted April 2, 2005 Hi Amanda, most GP's won't prescribe it because it's not that readily available in this country. I was told that there isn't a manufacturer here that has been licenced to make it yet. Most peadiatricians don't see a problem with it though. I do know a few people that order it fromthe states over the internet but we are lucky, our pead is happy to prescribe it for us. Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 2, 2005 thnx Minxygal Is there a web site i can get a trial that your paed recommended? not sure how anyone else have got it etc. Thanks Amanda Quote Share this post Link to post Share on other sites
Minxygal Report post Posted April 2, 2005 (edited) I found this link you might find helpful. Apparently you can buy it in health stores in the states but not here, again it's something to do with the licence. Ax About Melatonin This was the only UK link I could find...Hope it helps Vitaminuk.com Edited April 2, 2005 by Minxygal Quote Share this post Link to post Share on other sites
mossgrove Report post Posted April 3, 2005 Minxygal Melatonin is freely available in the USA because it is classed as a food supplement and not a drug. (It occurs naturally in the body in small quantities). Simon Quote Share this post Link to post Share on other sites
Minxygal Report post Posted April 4, 2005 Yes thanks for that. Silly how there is no license for it over here. My doctor had no concerns what so ever about prescribing it because as you said the body produces it naturally anyway. My daughter took a couple during her exams to help her drop off to sleep and they really helped. Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 4, 2005 Just rang the surgery and am taking my son up but have to wait a while as i have not got an appointment. Will ask about medication or Melatonin etc let you know what they say if not will have to try and get in touch with the paed. Its difficult as i always get locums so never know who to call....... Will print out info on Melatonin etc and say about the site i can get it from and see what they say about that too. Take care Amanda Quote Share this post Link to post Share on other sites
Rachelp2 Report post Posted April 4, 2005 Hi, I've just read the last few posts... The paediatrition should have no doubt perscribing Melatonin although I'm not sure on G.P's as i only ever get a hospital perscription for Dan's. Just out of curiosity, how much is it to buy from the U.S? If it's expensive then it might be worth you being persistant with the paed, and letting him know that others here in the U.K are being prescribed it?! It's so unfair how some of us get what we need without a battle when others are having to trapse about struggling to get what they need I guess it's just the same as me having to pay �30 per month for my Ritalin when others have no problem with their G.P's perscribing! Good luck Rach x Quote Share this post Link to post Share on other sites
Minxygal Report post Posted April 4, 2005 You're right Rachel, we have trouble with this all the time in Nottingham as half of us fall under the county and the other half under the city. Unfortunately availablity and access is not concistant between the two. Quote Share this post Link to post Share on other sites
mossgrove Report post Posted April 4, 2005 Cost isn't a big issue, �20 would buy you enough melationin to last a couple of months or more, depending on the doseage. Given the positive effect it has had for us, we would still buy it if we couldn't get it on prescription. (And I do buy it to use myself) The reason for the reluctance is that it isn't specifically licenced in this country for use to help kids with ASD's sleep. Pediatricians tend to be a bit more aware of the issues and are happy to prescribe based on the being almost no known side-effects. GP's are typically less melatonin-aware and are likely to be much less willing to prescribe. Simon Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 4, 2005 Thnx everyone for the advice....... My son keeps having different peads and end up with locums, managed to get through to the last one who will probably see him again. She is off this week but left a message with the secretary. I told her my views and she said doubt it very much with getting it. Will see what she says next week and i will be persistant. I have an appointment later see what the GP says as no harm in asking. I dont really want to order it without having consulting first with paed or GP. He needs something as it does not help our children if they cant concentrate at school especially as they get older. I missed the genetics councellor this morning, blame it on the easter hols your allowed to forget things. Keep up the good work everyone you are all doing great and dont let anyone put you down. Amanda Quote Share this post Link to post Share on other sites
Jadensmum Report post Posted April 4, 2005 Hi, What Simon has said about GP's is exactly what J's paed said on Thursday - as i said before we were prescribed it on Thursday - but I think j might be one of the kids it doesn't work for!!! Thursday night wasn't too bad but Friday, Saturday and last night were terrible!!! First of all I tried one in his milk and then one went he woke up in the night. Then I tried 2 together - I think tonight I will try one in his milk and then 1 when he wakes up again. I am so disappointed - but I suppose I had got so excited over the last 3 months while waiting for it to be prescribed about finally having a decent nights sleep. Never mind - try again tonight. Good luck to everyone else trying it. Denise PS Minxygal - I'm from Newark:) Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 4, 2005 Hi all Seen the GP but he said did not know much about Melatonin and i showed him all the paperwork on it, so recommend i seen the paed for that. He prescribed Phenergan Elixir 5mg 10 mls at night for now. What he told me was it should be used for rashes and allergies etc but can make a child drowsy. See how it goes for now until i get to see the paed again then hopefully he will get to sleep earlier and wakeup and be ready for school. Take care Amanda Quote Share this post Link to post Share on other sites
Minxygal Report post Posted April 4, 2005 If it's any concellation it took a little while for the melatonin to work effectively for James and the doctor upped the dose gently until we found the right level. I think it took a couple of weeks to get him into a good routine but it now works fab. Jadensmum, we're in Arnold. Small world eh?! Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 4, 2005 Hi all Just tried my son on phenergan 5mg tonight about 7.45 believe it or not hes still wide awake.... He said im not sleepy mam not yet.... He knows he as to take it as thought i should say what its for. What made me upset though is when he said does this make me sleepy and i said yes, then he said mam will i wake up in the morning... . It makes you think that what s going through his head, does he think im poisoning him? well see how it goes anyway. Thanks alot Amanda Quote Share this post Link to post Share on other sites
denise2 Report post Posted April 5, 2005 this was my son's biggest concern before taking the Melatonin for the first time. He was very frightened it would make him so sleepy he would not wake up. He was very brave the first night, but then after that it has been plain sailing. With regards to the Phenergen I have heard that it can have the opposite effect on children and actually send them hyper, has anyone experienced this? Quote Share this post Link to post Share on other sites
Rachelp2 Report post Posted April 5, 2005 Hi Denise, Yes Phenergen had the opposite effect on my son, gosh it was years ago, he's 10 now and was only 3 at the time, before we even knew he had Asperger's! Someone mentioned it to us. I'll never forget that day, we were at the airport and i had the bottle of phenergen in my bag and was really worried about giving him any, but it was 2 hours before the flight and he was hypo so i took a deep breath and gave him some to hopefully calm him and have a sleep (he was never a toddler who had sleeps!) well he went more madder than i'd ever seen him before!!! This was scary stuff! I couldn't control him at all!!! so much for trying to be considerate and let passengers have a peaceful flight, it was the flight from hell!!!! Melatonin is a godsend though and would be lost without it, Dan even lets me know if he needs a tablet or not, i don't use them school hols or weekends but he stays up till 2am without one! We used to look like this before Melatonin, now this year were like this lol!! Rach x Quote Share this post Link to post Share on other sites
mossgrove Report post Posted April 5, 2005 Rach You experience of Phenergan was exactly the same as hours. We used it once only a few years ago before a flight as eveyone told us it was a good idea. We are never going to give it to him ever again! Simon Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted April 13, 2005 Morning everyone Just been on the phone to my son's paediatrician and told her the Dr prescribed Phenergan but dont work. She said there should not be a problem with him having Melatonin but need to get recommendations of other people that deal with him first. She also said in which i already know that it sorts the sleeping cycle rather than sedating the child. Let you know how things work out with him. Take care Amanda Quote Share this post Link to post Share on other sites
lisa Report post Posted May 18, 2005 Glad I'm not the only one. Our experience of Phenergan was exactly the same, 3 years old in the airport!!!! This was also before we knew he had AS but when he attended a special needs nursery, and a "caring and understanding" air stewardess told us that if we didn't keep him under control they were going to call the captain!! We were embarrassed and struggling to cope as it was without kicking us down even more. My daughter had her first dose of Melatonin last night thanks to tip off from this forum and she slept from 9pm right through until 7.30am. It was wonderful. We tried 3mg on my son which didn't do anything so I'm going for 6mg tonight!! Wish us luck. Lisa Quote Share this post Link to post Share on other sites
lisa Report post Posted May 23, 2005 I can't believe it's 10.15pm and all my kids are asleep!!!!!!!!!!! THANK YOU MELATONIN!!!!!! Quote Share this post Link to post Share on other sites
Anneuk Report post Posted May 23, 2005 Hi Everyone, Jacquleine has started taking melatonin she had her second dose tonight. She has never slept well (she's nearly 11) most nights awake after 11 then on and off throughout the night and when asleep had severe night terrors. Luckily (for me) Since being fairly small she has stayed put in her room but the trauma for her has been big, even at 10 she has bags under eyes and I'm sure the lack of sleep doesn't help her ability to cope. Anyway.... Gonna keep my 'melatonin diary' but so far... Her new dr, told us that in her opinion that children can often become resistant to the effects of Melatonin and that her patients have most sucess when they don't use it every day so it has been described thus: 2mg a night for 7 nights If there is no improvemnt in sleeping pattern, then the dose has to be upped to 4mg for 7 nights, again if no improvement, the dose needs to be increased to 6mgs for 14 nights. If after 14 nights there is no improvement it has to be discontinued as it isn't going to work The dose should be carried on at the rate it starts to work ie 2mg, 4mg or 6mgs... I was also told to ensure that her bedtime routine 9ie wash, wees, teeth, and reading etc) is completed half an hour BEFORE she wishes to be asleep, then she takes the medication and lies quietly, with quiet music or soemthing but no excessive stimulation. So far then... 1st Night Medicine given at 8.30, by 9.05pm when i peeped in she was snoring soundly, she had no night terrors last night and she didn't awaken until her alrm went off at 7am. When she got up, she was chatty and relaxed, much more able to cope with morning routine, and most importantly the after school daily meltdown DIDN'T happen!!!! Tonight Medication given at 8pm She was fast asleep again within 30 mins, I await to see how she is tomorrow. Anne Quote Share this post Link to post Share on other sites
loulou Report post Posted May 23, 2005 Hi Anne, I'm so glad it worked for your daughter Lets hope it carries on working. I'm sure she'll be happier if she's getting more sleep. My son has been taking it for about three months or so (every night) and it's still working. It only doesn't work if he doesn't go straight to bed and relax with his story tape or video. Hooray for melatonin! Loulou x Quote Share this post Link to post Share on other sites
Anneuk Report post Posted May 23, 2005 Yes Loulou, the doc said that to us, she said it was like the melatonin operated the switch for sleepiness to occur, but if you stimulated yourbrain too much the window of opportunity would be lost. She said it's the same as anyone, you can be totally shattered and ready to drop off, then you remebr you haven't locked a door so you get up to do it and by the time you get back to bed you're wide awake again.... I really hope this works too...... Anne Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted June 9, 2005 Had a letter for an appointment to see the paediatrician as not heard from her in 7 weeks about my son taking melatonin. She sent me information about the effects etc so it looks promising have to wait 4 weeks to see her though so should get a prescription off her then..... Take care Amanda Quote Share this post Link to post Share on other sites
Amanda32 Report post Posted July 7, 2005 (edited) Took my son to see the paed but came out without any melatonin. She said to see her again in 4mths time and see how he his then. I have to try different ways to help him go to sleep, the paed told me that if i say hes got to go to sleep by 9pm let him stay awake longer but be quiet in his room and not move his toys/furniture around late at night. So looks like ive just got to let him stay awake playing with his megablocks until hes tired whatever time it may be. At the moment hes ok to get up in the morning but that might be the weather. See how it goes as she said its not that hes up until 2am so keep off the melatonin for now. Take care Amanda Edited July 7, 2005 by Amanda32 Quote Share this post Link to post Share on other sites
hopeful Report post Posted August 5, 2005 As a child I slept wonderfully. Since my teens I have suffered from insomnia to varying degrees at different times. Over the past week or so my sleeping has been going through one of its better phases. If only this 'phase' would last forever. Quote Share this post Link to post Share on other sites
Minxygal Report post Posted August 6, 2005 We've been using melatonin with our 13 year old for about a year now. I can honestly say we've noticed no side effects and they really have helped him settle of an evening. My son takes ritalin too and the melatonin really helps after his early evening high. Quote Share this post Link to post Share on other sites
