Trying melatonin with ds

[PeterPan]

I found a 5mg melatonin gummy by Natrol and a 1mg tablet, also Natrol, so I thought we'd give them a try. Even with significant 5HTP (150 at night, 100mg day, 12 hours apart), he still doesn't get tired very well at night. It's better than it was, and he goes down more quickly with the 5HTP, sure. But still, he just hasn't been getting tired. At the 5HTP doses I'm taking (200mg morning and night), I actually get TIRED. I've never gotten tired in my whole life! But he hasn't been. 

I tried the 5mg on him for tonight, because I've been trying to adjust his sleep/rise times earlier. It's very inconvenient to have him trying to sleep till 11am each day, and that just wasn't going to be a good set-up for fall and getting more work done. He's ready to do more, but I'm just not gonna work 1-6pm, mercy. It zonked him out faster than I was expecting. 30 minutes and he was noticeably tired and on the floor and dragging. He went to bed willingly at 9:45, actually into his bed, not up playing legos for another hour.

It seems like people can take high doses of melatonin and STILL not sleep, so I was sort of reluctant even to try. But this so far seems good to me. We'll see how long it hangs in his system. That was a 9pm administration of the gummy. 

[Storygirl]

Melatonin was like magic for DS14. Before, he would be rattling around in his room for two hours before falling asleep. With melatonin, he fell asleep within 15 or 20 minutes. Yay!

We did try different dosage levels. And at some point, the pediatrician recommended giving half the dose an hour before going to bed and the other half at bedtime. We didn't need to do this, but I guess it works for some people. Maybe to help them have a calm time before sleep time.

So you can play around with it to see what works. I think we started at 3 mg, and now he uses 5 mg. Some people just use 1 mg. Now DS14 takes an extended release version, because the regular was helping him fall asleep but not helping him STAY asleep. He still wakes up occasionally in the middle of the night, but it's been better.

[PeterPan]

Oh dear, then that 5mg may be high!! Oops. One night won't hurt. I could cut the gummy in half or try the 1mg. That divided dosing is interesting, hmm. It worked so fast, I probably wouldn't need to do that. Still, interesting. Really though, he was already tired and just didn't know it or know how to feel it.

So you found an ER 5mg? Interesting. Yeah, right now ds sleeps fine. I usually sleep fine too. I know people who don't. Well I'm saying that, and sometimes ds does wake up at a weird hour. But I think that's infrequent, not common enough to need a constant plan. But you're right if it happened another 1mg might boom that.

Well that's good to know I'm on the right track! I didn't know it would be so potent or fast.

[Guest]

15 minutes ago, PeterPan said:

Oh dear, then that 5mg may be high!! Oops.

The ped recommended melatonin two years ago for my 9-year-old. She wrote down 3mg and we bought a gummy with 2.5mg. It was helping him fall asleep fast but we did see an uncommon side effect so keep your eyes open. Also, check forums from mothers of ASD kids if you want to confirm what you are seeing may infact be a side effect. We used it for 4 weeks, came off for 2, back on for 1 week and same side effect. We have never used it since.

Hope all goes well!

[Storygirl]

18 minutes ago, PeterPan said:

Oh dear, then that 5mg may be high!! Oops. One night won't hurt. I could cut the gummy in half or try the 1mg. That divided dosing is interesting, hmm. It worked so fast, I probably wouldn't need to do that. Still, interesting. Really though, he was already tired and just didn't know it or know how to feel it.

So you found an ER 5mg? Interesting. Yeah, right now ds sleeps fine. I usually sleep fine too. I know people who don't. Well I'm saying that, and sometimes ds does wake up at a weird hour. But I think that's infrequent, not common enough to need a constant plan. But you're right if it happened another 1mg might boom that.

Well that's good to know I'm on the right track! I didn't know it would be so potent or fast.

The bottle is upstairs, so I don't know the brand, but we find it at Kroger.

Since the 5 mg had a great affect, you might try a lower dose tomorrow night, but at least you know it works for him! Evidently, for some people it has no effect.

[Pegs]

My DS takes 1.25mg about half an hour before bed. We use 5mg gummies by sundown naturals, which I cut into quarters. It's a dose which makes him sleepy enough to recognise that it's time for bed, but doesn't completely knock him out. He listens to audiobooks in bed until he falls asleep.

[PeterPan]

Ooo, thank you!!! You're right that just him being able to feel it and get that interoception work is useful. 

[Pegs]

56 minutes ago, PeterPan said:

Ooo, thank you!!! You're right that just him being able to feel it and get that interoception work is useful. 

Yep. That's exactly how and why we're using it.

[Guest]

In case this is useful to you or anyone else.

- Melatonin: Not a Magic Bullet for Sleep

https://www.psychologytoday.com/us/blog/sleep-newzzz/201102/melatonin-not-magic-bullet-sleep

[displace]

Thanks for mentioning delayed release.  That may help us!

[PeterPan]

Well happily, ds woke up very rested! This is good, because I was getting tired of the grouchiness from trying to move his sleep time. I don't think he's groggy from the dose, but that doesn't mean he wouldn't be if he had it every day, dunno. I was just really surprised how well he woke up, very energetic and his perky self! Love that. 

[Lecka]

It sounds like it’s working well for him!

[Guest]

The reaction here started about two weeks into it. This was why I said, keep an eye on him. I wish I had read that article back then! But I went on what the ped said and didn't follow my gut and do some research. I may have still tried it but I would have lowered the dose like Pegs, or I would have done what I had been doing up to that point whenever he messed up his hours. I would have brought him full circle, stretching his wake up hours a bit every day until he is back to normal sleeping hours. It's pretty brutal on me, I get very little sleep during that time, but it works well for him. Unfortunately, that too is not alarming. I always did my best studying at night; peace and quiet, easier to focus. He gets it from me!

[Pawz4me]

I have to be very careful with melatonin for myself. I've found that .5 mg is all I need to help with sleep. Even with that tiny amount sometimes I'm groggy for a good part of the next day. Since I've settled on that dosage I've yet to have to take it for more than one night at a time, so I don't know how it would affect me. In the past when I took 1 mg. for multiple nights in a row I'd start having bizarre dreams by the third or fourth night.

[PeterPan]

Pawz, I will be very judicious then, wow!

[kbutton]

When we use melatonin here, we try to take it a bit before bed, and we take bi-layer tablets by Nature's Bounty. The layers are what make it "extended" release. It's 5 mg.

[Guest]

1 hour ago, Pawz4me said:

I have to be very careful with melatonin for myself. I've found that .5 mg is all I need to help with sleep. Even with that tiny amount sometimes I'm groggy for a good part of the next day. Since I've settled on that dosage I've yet to have to take it for more than one night at a time, so I don't know how it would affect me. In the past when I took 1 mg. for multiple nights in a row I'd start having bizarre dreams by the third or fourth night.

 

Bingo! Sorry you have had to deal with that but good to hear from others that have also had that experience.

[Guest]

We had used the 2.5mg Nature's Bounty gummies.

[PeterPan]

He's saying he has a bit of a headache today, which is probably how he's interpreting groggy. I'd probably definitely cut it down to dose it again, mercy. I'm also watching because (after the fact) it hit me that melatonin is probably a methyl donor. So I'm just watching it. I'm getting him back in the swing of things with his language work, so I expect him to be a little crunchy till he snaps back. 

Interesting on the bilayers. He stays asleep fine, so I think I'd only want the smallest dose that lets him get to the fatigue and get into bed. He wouldn't need extended release, not for his situation. He's generally a fine sleeper.

[Guest]

Posted temporarily for PeterPan; now deleted.

[PeterPan]

MO-I never saw whatever you wrote before you deleted it.

[Guest]

Don't worry about it. If you see something out of the ordinary,  you will know.

[PeterPan]

Out of the ordinary? He was good today. I took it down to 1mg tonight, though he was already getting tired (mildly) at 8:30. He had the 5HTP and 1mg melatonin at 9pm and was in bed, curled up, trying to sleep, by 10pm. That's really good for us, a huge improvement. That's with a 9am-ish rise time. If we could get that rise time to 8 am (meaning a 9pm lights out), that would be amazing. 

It really matters, because I have to have him up by 8am to get his dosings in on his stuff to have him workable. He's not even stable and safe to work with without his supplements. We can do read alouds, but we can't make demands or do anything taxing till those are in. So if he's staying up late and bouncing off the walls, that makes it really hard to get him up. I don't want to be doing school all afternoon. He needs to be able to wake up in the morning and work. 

Frankly, there is nothing I'm doing that could POSSIBLY mess him up worse than the psychiatric medications they would have put him on. I have one goal: keep it safe. If we're safe and we're working together, then he's growing. I accept imperfection, side effects, etc., because we were in a very bad place before with behaviors. Now we have stable behaviors. I just need to be able to dose those things starting at 8am, and I can't get that consistently and comfortably for him without an earlier bedtime. And if I have to force that, that's fine, because it's for the greater good.

I cannot force sleep issues with him as a compliance thing and I cannot live an utterly chaotic life. This seems good so far. There's a melatonin tincture, so if I want a lower dose than even the 1mg I could probably get it that way too. It seems evidence-based for adjusting sleep schedules, and that's exactly what I'm trying to do. And personally, given how challenging he is, I don't even care if a teeny tiny amount of melatonin because a normal part of our bedtime routine. It seems to me that would be counter-productive and the body would decrease it's production. I really don't know about that. Just seems logical to me. But there's also a point where I don't care. My line is safety and function. He can have very challenging behaviors at night as he starts to get tired. He tends to stim a lot right before, so he'll be running in circles around the house and flapping, and it's just a really unsafe, challenging situation. This is pretty nice, frankly, him just going to bed nicely. And if we can reset his expectation for what it means to go to bed, that's good too. That's what our other supplements did. They let him feel how he SHOULD feel, so it raised the bar in his own mind for his behaviors. So now, even when he's not on those supplements for whatever reason, he has better behavior, because he picked up the clue phone on how it should be.

Edited July 30, 2018 by PeterPan

[PeterPan]

10 hours ago, Pawz4me said:

I've found that .5 mg is all I need to help with sleep.

How are you getting the .5mg? Did you already tell me? I have these 1mg quick dissolve Natrol tablets and I could fiddle around with cutting them. Having pre-done dosing gives me options. I saw a tincture, but I didn't look at it. That seems like such a small amount, .5mg, that it would be tricky to get accurately, I would think.

[Guest]

I'm sorry, PeterPan! I didn't realize your boy was still this challenging to work with. I really would share something if I thought it would be helpful, but our situation is completely different.

My kiddo does not get tired unless he has been up for at least 14-15 hours. Lately he had been sleeping about 8 and the odd time 9 hours. With the Feingold diet, or getting natural vitamin D from the sun, or likely a combination of both, he has been sleeping for 10 hours on some days (unheard of for him, for several years now). His problem is that he can go as high as 17-18 hours without sleep and that is when he messes up his hours on me. He starts to stretch bedtime, even when he is in bed. He'll keep coming out, or he'll turn on the light and play with his stuffed elephants (I limit the toys allowed in his room because of it), or he will take science books or his Bible stories off his bedroom bookcase to read, etc. When he is only sleeping 8 maybe 9 hours I can't really wake him up earlier or he will hardly get any sleep. This was what I was trying to adjust with the melatonin at the time. In his case, the side effects was not something I was prepared to accept so I took him off. Anyway, rambling now, but it really doesn't mean that your boy will have any. I was just saying to keep an eye out.

[Pawz4me]

7 hours ago, PeterPan said:

How are you getting the .5mg? Did you already tell me? I have these 1mg quick dissolve Natrol tablets and I could fiddle around with cutting them. Having pre-done dosing gives me options. I saw a tincture, but I didn't look at it. That seems like such a small amount, .5mg, that it would be tricky to get accurately, I would think.

I cut a 1 mg. tablet. The ones I have cut easily in a pill cutter, but I don't have the quick dissolve.

[ThursdayNext]

We have an ASD 7 year old who slept very little from 3 months to 2 1/2. That's when we started melatonin. After that, he learned to speak and stopped falling all the time. So melatonin is a miracle for us. We've tried going off, but he still needs it. The only alternative is 4 solid  hours of active outdoor time.

D has trouble falling asleep, but once he is asleep, he is out cold. For us liquid melatonin works much better than gummies, tablets, or quick dissolve. We use this brand. https://smile.amazon.com/gp/product/B002VPEE7M/ref=oh_aui_search_detailpage?ie=UTF8&th=1

Perhaps for some a fast acting liquid and a timed release tablet would work.

[PeterPan]

2 hours ago, ThursdayNext said:

We have an ASD 7 year old who slept very little from 3 months to 2 1/2. That's when we started melatonin. After that, he learned to speak and stopped falling all the time. So melatonin is a miracle for us. We've tried going off, but he still needs it. The only alternative is 4 solid  hours of active outdoor time.

D has trouble falling asleep, but once he is asleep, he is out cold. For us liquid melatonin works much better than gummies, tablets, or quick dissolve. We use this brand. https://smile.amazon.com/gp/product/B002VPEE7M/ref=oh_aui_search_detailpage?ie=UTF8&th=1

Perhaps for some a fast acting liquid and a timed release tablet would work.

How much are you using? That's amazing the improvements you got.

 

[Guest]

Product info from Feingold Foodlist and Shopping Guide shared temporarily; now deleted. 

Edited August 3, 2018 by Guest

[Guest]

Product info from Feingold Foodlist and Shopping Guide shared temporarily; now deleted. 

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[Guest]

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[Guest]

Product info from Feingold Foodlist and Shopping Guide shared temporarily; now deleted. 

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[PeterPan]

He was kind of hyper and stimming a lot today, so we're not sure what's up with that. I gave him .5 mg tonight, because that continues our decrease. It definitely wasn't enough to COMPEL him to leave what he was doing and go to sleep, but it was enough that he actually sounded tired and looked tired. I need to do a little research and figure out if the melatonin was causing the revved up state or if it was a one-off or what. Dunno.

[jboo]

There's a recent article on Melatonin at Slate Star Codex here:

http://slatestarcodex.com/2018/07/10/melatonin-much-more-than-you-wanted-to-know/

Among other useful information, the pseudonymous psychiatrist writing under the guise of Scott Alexander cites quite a few studies suggesting that the most effective dose is only .3 mg, as well as suggesting that timing matters as well.

 

 

[PeterPan]

2 hours ago, jboo said:

There's a recent article on Melatonin at Slate Star Codex here:

http://slatestarcodex.com/2018/07/10/melatonin-much-more-than-you-wanted-to-know/

Among other useful information, the pseudonymous psychiatrist writing under the guise of Scott Alexander cites quite a few studies suggesting that the most effective dose is only .3 mg, as well as suggesting that timing matters as well.

 

 

That was interesting! Definitely worth reading through. I hadn't seen the part about cortisol suppression, but it may explain the behaviors somehow.

[sbgrace]

I use 0.5 mg from Pure Encapsulations, which I get from Amazon. It's a capsule, and when he was little I just opened and sprinkled. It has little taste. No fillers that could cause reactions. I use that to reset body clock with late afternoon/early evening doses, which need to be small. But for years we used that dose for night time too.

His sleep medicine doctors recommend Natrol brands, as they are standardized. My son didn't do well with that brand, but the ones we picked to try had b6 too I think, and maybe it was that. 

When I tried 3 mg, when he was younger, it seemed perhaps more effective, but he would wake as it wore off and I think we had more night terrors (could have been the age or sleep deprivation generally though). He takes 3 mg now, a Spring Valley I got at Walmart, and it's working great with no side effects. 

 

 

[kbutton]

12 hours ago, PeterPan said:

He was kind of hyper and stimming a lot today, so we're not sure what's up with that. I gave him .5 mg tonight, because that continues our decrease. It definitely wasn't enough to COMPEL him to leave what he was doing and go to sleep, but it was enough that he actually sounded tired and looked tired. I need to do a little research and figure out if the melatonin was causing the revved up state or if it was a one-off or what. Dunno.

Sometimes if I sleep better after being tired, I am "more" tired for a couple of days as I catch up. If he typically stims more and gets hyper to keep himself awake, it could be that it's helping him sleep better, and he reacts to better short-term sleep with wanting even more. 

[PeterPan]

3 minutes ago, kbutton said:

Sometimes if I sleep better after being tired, I am "more" tired for a couple of days as I catch up. If he typically stims more and gets hyper to keep himself awake, it could be that it's helping him sleep better, and he reacts to better short-term sleep with wanting even more. 

So you're saying then ride it out, see where he ends up? This idea of tamping down the cortisol levels a bit is interesting to me. He's finally waking up ON and himself, like he used to be. If the melatonin is helping his brain wind down, that's good. There's sort of a side story there, but we've had people in our family develop blackouts (treated with seizure mediations) and the neurologists said their brains basically weren't sleeping, weren't turning off.

Sbgrace, that's interesting to hear you actually did the earlier administration like what the article was suggesting! I'm watching him today. He was really wet last night, soaked, so I'm not sure what to make of that. Usually that means something extreme or stressful happened. It could be a combination of things, but I'm just saying that was pretty extreme and something we had't had in quite a while. 

His clock is getting reset, so that part is really good. It's just if he has major side effects like that continue, I'll have to axe it. So we'll see.

[kbutton]

18 minutes ago, PeterPan said:

So you're saying then ride it out, see where he ends up? This idea of tamping down the cortisol levels a bit is interesting to me. He's finally waking up ON and himself, like he used to be. If the melatonin is helping his brain wind down, that's good. There's sort of a side story there, but we've had people in our family develop blackouts (treated with seizure mediations) and the neurologists said their brains basically weren't sleeping, weren't turning off.

Sbgrace, that's interesting to hear you actually did the earlier administration like what the article was suggesting! I'm watching him today. He was really wet last night, soaked, so I'm not sure what to make of that. Usually that means something extreme or stressful happened. It could be a combination of things, but I'm just saying that was pretty extreme and something we had't had in quite a while. 

His clock is getting reset, so that part is really good. It's just if he has major side effects like that continue, I'll have to axe it. So we'll see.

I am offering a possible perspective on why he's hyper and stimming--I am not sure it's right. Just that it's possible.

Some people wet from heavy sleeping. 

It's hard because you have a history of these issues being negative, but yet, kids who are tired and on their way to crashing often act hyper or stim more; kids who wet are often super hard sleepers--it's not very clear. 

If you think his behavior is unsafe, you have to make the call.

If you think it's helping, but the side issues are too hard, maybe you try again when you have some days where you can afford to deal with them via extra help, a clear schedule, whatever. 

We have had issues where it gets worst just before it gets better--like really better. I just don't want you to miss that if you think this is helping, but I can't help much on making the call.

[kbutton]

...and NO ONE responds really well to adjustments in sleep, unfortunately. It's hard!

[sbgrace]

I would give it time before I connected daytime behavior changes to melatonin directly. It's got a really short half life, and I suspect, if there is a connection, it might be more due to increased sleep than the melatonin itself. I hope so, anyway. Good sleep can make a huge difference in executive skills across the board here (including impulsivity, emotional regulation, as well as attention and similar).

The wetting, though, I would wonder if that is because he's sleeping more deeply. 

At one point in my son's too long struggle with insomnia, early evening melatonin fixed him. I did keep doing night time melatonin too--I want to make that clear. But the late day small dose melatonin is good for resetting sleep patterns (at some point it became less helpful for us--but I think that's because his anxiety around sleep had spiked so high). My son's sleep medicine doctor is very good--he said sometimes it's just body clock alone, and sometimes it's more. In my son's case it's body clock plus a lot. So evening melatonin fixed one issue of many here. 

[Guest]

Bedwetting was not an issue we encountered but if you Google bedwetting and Melatonin you will see that others have. You will even find it in articles from MDs.

[Guest]

- What We Know (And Don’t Know) About Melatonin’s Effects On Kids by Judith Anne Owens, M.D., MPH (Director of Sleep Medicine at Boston Children’s Hospital)

https://www.huffingtonpost.com/judith-anne-owens-md-mph/melatonin-effects-on-kids_b_8537244.html

Edited July 31, 2018 by Guest

[PeterPan]

2 hours ago, kbutton said:

I am offering a possible perspective on why he's hyper and stimming--I am not sure it's right. Just that it's possible.

Some people wet from heavy sleeping. 

It's hard because you have a history of these issues being negative, but yet, kids who are tired and on their way to crashing often act hyper or stim more; kids who wet are often super hard sleepers--it's not very clear. 

If you think his behavior is unsafe, you have to make the call.

If you think it's helping, but the side issues are too hard, maybe you try again when you have some days where you can afford to deal with them via extra help, a clear schedule, whatever. 

We have had issues where it gets worst just before it gets better--like really better. I just don't want you to miss that if you think this is helping, but I can't help much on making the call.

Oh I hear you, it's a really interesting take. It's not so bad or out of line that we can't continue. I think I'll probably hold at the .5mg a while and see what happens. That will give it time for the fluff to die down. I am also going to think about it for myself. I only started getting tired at all at 42 when I started the 5HTP. Now I can, but I have to be really diligent and tell myself to go to bed. I think my brain has a tendency to stay awake even when my body is tired, and I think a dab of melatonin might be a way to deal with that.

[PeterPan]

1 hour ago, sbgrace said:

I would give it time before I connected daytime behavior changes to melatonin directly. It's got a really short half life, and I suspect, if there is a connection, it might be more due to increased sleep than the melatonin itself. I hope so, anyway. Good sleep can make a huge difference in executive skills across the board here (including impulsivity, emotional regulation, as well as attention and similar).

The wetting, though, I would wonder if that is because he's sleeping more deeply. 

At one point in my son's too long struggle with insomnia, early evening melatonin fixed him. I did keep doing night time melatonin too--I want to make that clear. But the late day small dose melatonin is good for resetting sleep patterns (at some point it became less helpful for us--but I think that's because his anxiety around sleep had spiked so high). My son's sleep medicine doctor is very good--he said sometimes it's just body clock alone, and sometimes it's more. In my son's case it's body clock plus a lot. So evening melatonin fixed one issue of many here. 

So then, just thinking out loud here, if I wanted to try the melatonin (and that's an IF, not a going to) and if my purpose was to tell my brain to settle down, not so much a getting tired, when would I take it? I first started getting tired, as I said, at 42 when I started taking 5HTP. I never ever basically got tired before that unless I was getting dreadfully sick. Like two times it happened, and both times I had something horrific that landed me in Urgent Care. So normally I just tell myself to follow my routine and wind down. And I actually fall asleep really well now with the 5htp. I used to have a measure of lag (20-30 minutes, sometimes hours, depending), and now I'm pretty much like boom, 3 minutes. I really my Bible a little and I'm OUT. So maybe I should just leave well enough alone?

The reason it fascinates me is I have a family history of these weird blackout seizures and I was told by a family member that they were told by a neurologist that the brain wasn't shutting off. So it's possible to sleep and still have your brain going I think. I don't know, don't even know how I'd know if that was happening. Really though, my brain probably is, because I usually wake up and immediately get out of bed and go do something or a bunch of somethings that my brain has figured out. I wake up very ON and my brain will have made new connections of what I should research or do next on my projects or whatever.

Well anyways, that's rabbit traily. I just think I violated my major rule with ds, which is that I usually take it MYSELF before I give it to him. So that's why I was thinking maybe if I took it myself it would be easier to sort out what it's doing to him.

[kbutton]

17 minutes ago, PeterPan said:

It's not so bad or out of line that we can't continue. 

 

Oh, good! I wasn't sure from how you phrased it, and I didn't want to be pushy if it was really bad. I thought the neurofeedback you did helped with sleep somewhat--am I remembering wrong?

[PeterPan]

Well to me, the neurofeedback was kind of weird. It made him wake up more slowly, but it was unnatural. Does that make sense? It was almost like it messed him up. We never saw anything dramatically good from the neurofeedback. I think it was just a nightmare for dd because of her dichotic listening issues, and the OT was too unknowledgeable even to realize what was happening. 

But yes you are remembering correctly that the effect we're seeing is basically the undoing, SNAP, of whatever the neurofeedback had done. I actually like him really on in the mornings. The whole wake up groggy thing was weird to me, because it's not how I am and not how he was born. I like that I go in now (on the melatonin) and he's happy and smiling at me.

[kbutton]

It makes sense, but I thought it helped with going to sleep at night also. I thought it was good for you two and not good for your DD. But over time, you are probably seeing it play out in ways that haven't been specifically talked about in the right context for me to have updated my perception.

[PeterPan]

Or you just have a way better memory than me, definitely, lol. 

I think dd's take at the time was that ds was going to bed better because his brain was exhausted from the processing. It wasn't really like a healthy change. She HATED the neurofeedback, and there was nothing I saw in ds long-term that I recall being positive enough to recommend it. But I forget things, yeah. 

Some of it's trade-offs. Once you start saying the kid is aggressive, the kid is challenging, you end up making trade-offs. We may have had some gains that we traded off, don't know. Unfortunately, being calm trumps EVERYTHING. That's safe, non-violent, able to participate, able to self-advocate, able to use his language and be appropriate. That's why any revving up, increase in stimming, increase in intensity is concerning, because we HAVE to stay safe. That's number one. Since we can't cognitive him into safe right now, we have to keep the body under control enough that he can do the rest with the ability he has to understand. I know adults who have worse genes who keep their bodies under control, sure. But that's not ds. Without his body under control, it's dangerous, which is why I'm concerned about the revving up and stimming. If that gets leads into more aggression or volatility, we have to back pedal FAST.

[Sk8ermaiden]

I hope I am OK to respond to this. DD has ADHD, which can come hand in hand with disordered sleep. We recently started Melatonin with her. I have many friends with ADD or SPD kids who are on Melatonin and night terrors was the one thing they all mentioned. Their common advice was that it takes a "loading dose" before it starts up. If they've done it 4 days to a week or more in a row, that's when they notice it happen. So with DD, we never do more than two nights in a row and have never had a problem. That's not an option for everyone, but if you notice any side effects, taking a night off here or there might help. 

Also, we bought DD a fitbit with the sleep cycle capability (the Alta HR- not the kid one, it can't do it). It's amazing. It really gives me an insight into what exactly my day is going to look like once she wakes up. I also realized that she gets almost no deep sleep. With the melatonin, she gets 6 times as much deep sleep a night (which brings her up to the normal amount) and is better functioning and more rested, even with the same total number of hours of sleep.
 

Edited July 31, 2018 by Sk8ermaiden