Melatonin (worried mom)

[Loui]

Hi ,

 

My duaghter has ASD. One of the major problems is that she just does not sleep. She wakes every morning at 5am and often does not go to sleep till 1am. Half a hour sleep seems to give her 5 hrs of awake time. She has been on Melatonin since February and is on a dose of between 6mg and 9mg . She takes 9mg nightly ahour before she goes to bed. I thought at first it was working but she seems to be awake longer and longer now. I'm wondering if she has become immune to them??? Any ideas. She has been given test on her brain over the last few months for possible seizures they seem to have come out clear so far. I'm now a little worried that Me Me... has been complaining of what she calls the "STILLS" . She says she wakes up and trys to call me but she can't call out and she can't move. She isn't time aware so she isn't sure how long they last . Does anyone have similar experiencs? Any ideas anyone with similar experiences?? Could it be the Melatonin??/ I have made another appointment but would be real grateful for any advice .

 

Thanks in advance

 

Loui

[aro]

Has she had a 24hr EEG, some seizures can cause paralysis on waking. I'm sure I've read of people suffering this for other reasons too but NOT from melatonin. I would phone your paediatrian.

 

Melatonin is not great for prolonging sleep in many people, but helps get off to sleep initially. And, yes, you can develop a tolerance, many people take regular breaks from it to try and stop this happening.

 

Good luck,

 

A x

[JsMum]

9mg sounds a lot, the average dose tends to be 4mg so she is taking twice as much, I would ask for a referral to a sleep clinic and have her observed especially as she is paralised on waking up, that really does need further assessments but this could also be a sign of severe sleep deprivation, the brain can go very disaray without sleep, people have done tried to stay awake days on end and ended up with severe mental health problems so sleep is vital for the brain activity, sleep clinics are very specialised and can monitor using cctv and record brain waves, I was sent information on a clinic nearest to me by the Sleep Foundation you will need a referral from a gp or peadatrition, but I think it would be very important to have the sleep analysed too.

 

I have a friend with Epilepsy and if she goes without sleep it triggers the siezers, also I was told that just because of clear tests of ECGs it doesnt nessacarily meen they dont have Epilepsy.

 

I do think though that the paralyse is connected with the lack of sleep and could be contributing to more symptoms to epilepsy.

 

JsMum

[cmuir]

Hi

 

When medication is involved and given the 'stills', I'd be insisting an urgent appointment/medical advice over the phone. 9mg sounds a lot particularly since she's been on it a relatively short time.

 

Caroline.

[Loui]

Hi

 

When medication is involved and given the 'stills', I'd be insisting an urgent appointment/medical advice over the phone. 9mg sounds a lot particularly since she's been on it a relatively short time.

 

Caroline.

 

Hi ,

 

Thanks all for your comments . 9mg is the max dose they can give. Mia's sleep is seriously affected. That is why they gave her the max dose. I think the sleep clinic would be great. Mia has had a 48 hr digital ambulatory but sadly she never had one of her wobbles (that is what she calls them). I think Mia is sleep deprived. Its so hard going. I feel like im banging my head up a wall, We are still waiting for appointments 9 months later. I'm at the end of my rope at the mo. I will see if the gp will send her to the sleep clinic, I know there is one in oxford as she has been there before. When they were checking for the

eplispy. Mia's melotonin is a slow release capsule so she has 6 mg then 3mg in the early hours. To hear my 8 year old cry and tell me "i just want to sleep Mommy but i can't " is cutting me up. School is affected.

 

Would you believe today that Mia coming running out telling me she hadn't had any dinner . She didn't hear the class call. I was so angry. The class assistant told me it's Mia's responsibilty to go to dinner and she could have gone to her. I told her that Mia has ASD and needs to be told more then once sometimes. Also to the fact Mia has communication problems and wouldn't go to anyone. GGGRRRRRRR Im off to the headmaster tomorrow . Im struggling to get the school on board.

 

I feel im fighting all the time even thou she has had her dx.

 

Any one got any advice on speaking to the head AGAIN.

[Loui]

Hi ,

 

Thanks all for your comments . 9mg is the max dose they can give. Mia's sleep is seriously affected. That is why they gave her the max dose. I think the sleep clinic would be great. Mia has had a 48 hr digital ambulatory but sadly she never had one of her wobbles (that is what she calls them). I think Mia is sleep deprived. Its so hard going. I feel like im banging my head up a wall, We are still waiting for appointments 9 months later. I'm at the end of my rope at the mo. I will see if the gp will send her to the sleep clinic, I know there is one in oxford as she has been there before. When they were checking for the

eplispy. Mia's melotonin is a slow release capsule so she has 6 mg then 3mg in the early hours. To hear my 8 year old cry and tell me "i just want to sleep Mommy but i can't " is cutting me up. School is affected.

 

Would you believe today that Mia coming running out telling me she hadn't had any dinner . She didn't hear the class call. I was so angry. The class assistant told me it's Mia's responsibilty to go to dinner and she could have gone to her. I told her that Mia has ASD and needs to be told more then once sometimes. Also to the fact Mia has communication problems and wouldn't go to anyone. GGGRRRRRRR Im off to the headmaster tomorrow . Im struggling to get the school on board.

 

I feel im fighting all the time even thou she has had her dx.

 

Any one got any advice on speaking to the head AGAIN.

[Loui]

Hi all just a update. Gone back to Meme's doctor. Told her the Melatonin is not touching Meme and not really getting her to sleep any earlier but most of all she is not staying asleep. I feel like i have had a newborn baby for 8 years. She also is concerned regarding meme's stills. She has now referred Meme to a sleep clininc in Oxford. She thinks there maybe a underlined prpblem as Meme's sleep is so affected. They have done some Brain scans and a Digital Ambulatory. Waves on the brain scan when Meme was in rest period was iffy. So hopefully we will find out why her brain is sooooo active all day and night. She has also referred Meme regarding her food . As she is food sensitive and its causing some problems as she only eats few foods. So keep ya fingers crossed we get somewhere/ Until then 9mg of Melotonin is to be continued its the slow release capsule and we have been told now to try it as 3 mg before bed then 6mg if she wakes up; Lol its not working . I feel like i shouldn't keep giving them her as they dont seem to be working. But i do trust Meme's doctor so until next time...............

[fruit cake]

Hi all just a update. Gone back to Meme's doctor. Told her the Melatonin is not touching Meme and not really getting her to sleep any earlier but most of all she is not staying asleep. I feel like i have had a newborn baby for 8 years. She also is concerned regarding meme's stills. She has now referred Meme to a sleep clininc in Oxford. She thinks there maybe a underlined prpblem as Meme's sleep is so affected. They have done some Brain scans and a Digital Ambulatory. Waves on the brain scan when Meme was in rest period was iffy. So hopefully we will find out why her brain is sooooo active all day and night. She has also referred Meme regarding her food . As she is food sensitive and its causing some problems as she only eats few foods. So keep ya fingers crossed we get somewhere/ Until then 9mg of Melotonin is to be continued its the slow release capsule and we have been told now to try it as 3 mg before bed then 6mg if she wakes up; Lol its not working . I feel like i shouldn't keep giving them her as they dont seem to be working. But i do trust Meme's doctor so until next time...............