Can someone talk to me about melatonin?

[hazeyjane]

Ds is nearly 3, and has a genetic condition and various health problems.

He has always had disturbed nights, and his going to sleep routine relied on me cuddling him to sleep, with a dummy, it would take around an hour.

We took the dummy away about 3 months ago, and now bedtime can take a few hours. He just can't seem to settle, he thrashes around - sometimes laughing hysterically, sometimes screaming, and sometimes thumping himself or me. If I leave him he gets very very upset and as he has a tendency to choke, so this is not an option. He is totally wound up, I can feel his heart racing.

Is this the sort of situation where melatonin would be a consideration? I don't like the idea of drugging him to sleep, but also don't like spending every evening wrestling a large, clammy boy.

[cansu]

We find melatonin v useful in helping ds to feel like going to sleep. It may not however keep him asleep. You can get some slow release stuff in a tablet but ds will only take the liquid variety in is juice. I would definitely try it. We were on our knees when this was first prescribed. It certainly helps.

[Rumours]

My ds has melatonin, he could never switch off. It's a natural product we all produce and I was told that it would only work if he wasn't producing it. The first night he took it he was asleep within 20 minutes. It doesn't keep him asleep though as it is out of their system within 2 hours, but it has given me my evenings back. It's worth a try.

[hazeyjane]

That is interesting, Rumours. Ds has had it once, when he had an EEG. It sent him off very quickly. I think we could cope with the not lasting through the night, because the things that wake him up in the night are things like needing to change position (he gets reflux) or his chest, so I kind of don't mind the sitting up with him then, and he usually goes back to sleep quite well then.

It is just this mania, that we get in the evening, I can see he is tired (he gets very exhausted in the day) but his eyes look like he is on speed!

[hazeyjane]

Thankyou both - it really is draining.

[MumuDeLulu]

Fantastic stuff. Nearly hugged the dr on the follow-up visit after the 'trial'

[infamouspoo]

we use it as ds would scream for hours as he couldnt switch off. Leaving him was not an option as he can choke or have a seizure. It doesnt last the night and he still wakes every hour or so for turning or a bit of yelling but at least the 9pm till midnight screamathon has mostly stopped. Mostly. Its not 100%. He has the liquid form as he is tube fed.

[MumuDeLulu]

Might not be forever. This didn't happen for us, but we were told that for some dc, it establishes the 'habit' of getting to sleep and helps so much that they eventually 'learn' how to fall asleep without it.

[amumtothree]

We had it for our ds when he was 7. He was really struggling to get off to sleep - he just couldn't switch off. After talking to a friend with a medical background who confirmed what rumours said we gave it a go.

For our DS he took it for just over a month and it seemed to help him establish a sleep habit.

I would not hesitate to use it again if his situation were to change.

[infamouspoo]

ds has never established a sleep habit. He is 10. He's currently screaming his head off despite melatonin at 8pm. at 9.15 we move onto chloral hyrate. Before his last op though the malatonin had got him onto a 5 nights out of 7 falling asleep without screaming. Since the op 4 weeks ago he's maybe fallen asleep once in that whole time without yeling and needing stronger drugs.

[ouryve]

It really helps DS1 in the late summer, when he's struggling to settle to sleep. By July, he's usually bouncing off the walls until after 10pm and then struggling to wake up for school and just plain dog tired. After his ADHD diagnosis, his psychiatrist prescribed it to help him settle and it's pretty good. He's never had problems with night waking, just settling.

And it's not technically drugging him. Melatonin is a natural hormone that is produced in the brain at the end of the day, which tells the body that it's time to shut down and go to sleep. This response is often lacking in people with ASD or ADHD. And me. It's taken over 4 decades to get my drug of choice, though!

[RippingYarns]

it's changed our lives, it really has

DD used to be up screeching and howling for hours, especially when she was in her animal phase.

she takes 3mg a night and on occasion another 3mg during the night if she can't get back off - she is still resistant to go going to bed, but generally speaking she is asleep within the hour now, instead of the previous experience of 3-4hrs

i was worried initially that it was causing her daytime anxiety to rise, but i think that was her just settling into having timed sleep.

i understand it to be a hormone replacement too, many people with neurological conditions over-produce adrenaline, the melatonin is the antedote to that. sort of, but it's def not a sedative.

hth

[hazeyjane]

thankyou everyone, it is really helpful to know that it is not a sedating drug. Ds seems to have real problems with energy levels, so I hate the idea of him being 'drugged'

I think I will call his paed next week, or can gp prescribe?

[FreshWest]

Hi hazey
Just to add to the other comments, we started dd on melatonin at Christmas as bedtimes were beyond hell. She was leaping around upstairs and we would be rocking back and forth downstairs with our heads in our hands.
It does not keep her asleep, but our problem was mainly "switching off" enough to go to sleep. For dd it absolutely works in that respect.
Could I also ask why you took the dummy away? Appreciate you will have justifiable reasons, just that dd is 5 and we wouldn't contemplate her not having it to go to bed as it all helps in settling her to sleep (she is not allowed it at any other times)

[FreshWest]

Also to add it has absolutely no effect on her energy levels. She is like the Duracell bunny the rest if the time

[hazeyjane]

Thankyou Freshwest.

Tbh, talking to dh last night (after ds finally went to sleep at around 10.30) he reminded me that ds would often do this even with a dummy! In fact one of the reasons we thought we'd try getting rid of it was because often ds would just scream through the dummy, or throw the dummy around, so it became a game. The main reason though, was because he has severe speech delay - no words, no babbling, and although we tried to restrict the dummy to just sleep time, he spends so much of the day tired, that he started to sign for it all the time. He also has a lot of problems with his teeth, and the dentist said that the dummy would only exacerbate the problems. Anyway, we thought we would try, with the proviso that if it was an absolute nightmare, or he got ill and had to go to hospital, then we would give it back, but tbh it hasn't been that bad, he really gave it up pretty easily, and the sleep issues have changed rather than got better, IYSWIM. It does mean that he sucks and chews on everything else in sight though!

[HairyMaclary]

My DS has Cp rather than ASD and we use it on an as and when basis. He struggles to drop off but will lie mostly quietly or read until about 9.30 when he starts to get overtired and worries about not being able to get to sleep (he's 8).

It's not established a sleeping pattern but it does give him the chance of a decent jight's sleep and reduces the anxiety. I decide at about 8.30 whether to give it to him or not depending on how he is. It's fantastic and th knock on effect of a well rested child the next day is brilliant - we can do Physio and a full school day without too many meltdowns!

[TrucksAndDinosaurs]

I take it myself (had PTSD for a decade, a baby who woke to BF every 3 hours til he was 18 months and am probably somewhere on spectrum though not dx, DS has an ASD dx) and it is wonderful. It just shuts off my chattering brain and makes me ready to drop off 20min after taking it. No hangover, no grogginess next day. I think it does make dreaming more vivid but a medical friend did after years of poor sleep I might have a need to dream harder and defrag my mental hard drive.

If DS ever needs it in future I wouldn't hesitate: I think it is a lovely thing to be able to surrender to a healing sleep.

[TrucksAndDinosaurs]

Did say, sorry
Missing word

[AngP2585]

My son has a genetic condition too he has just turned 3 years old. I find it helps him go to sleep quicker but I don't feel it keeps him from wakening during the night so much. It does settle him quicker at night as before he would run around his room a lot before he finally went to sleep.

[jocook]

My DD (ASD dx) has been taking melatonin for knocking on a year now and I cant imagine our life without it!! Helps her switch off and fall asleep really calmly and our paed scripts us enough so if were going through a rough patch (recently moved house....nightmare on sleep pattern) we have enough to be able to give her more during night to keep her chilled out. Doesnt always work...its certainly no quick fix drug but equally I wouldnt be without it!!!