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Dd4 has been doing pretty well, with only a couple of hang-on symptoms. When she was in her bad flare-up a couple of months ago, her sleep cycle got all mixed up with haivng a hard time falling asleep and lots of night waking. With everything else she was doing, it was low on the list of things to tackle at the time :)

 

It has become a pretty major issue now - she can take over three hours to fall asleep, then still wake up 3-4 times per night and stay awake up to an hour each time. She will come to our bed (which is fine for us), and she will go back to sleep - when she wakes up, she just lays there quiet, but is awake. It doesn't seem to be bad dreams, and she is not complaining of intrusive thoughts - it just seems to be a mixed up sleep/wake cycle.

 

She is getting physically tired, but I'm not sure what to do? We do the whole routine thing, same time every night, etc - but it is not making a dent. A neighbor suggested melatonin? Anyone have success/unsuccessful stories of what they do or what works?

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Many parents here use melatonin for their kids, either on a regular or as-needed basis. Be aware that if you use it for an extended period of time, your body may stop making its own and therefore, if you stop, you would need to taper down over a period of weeks to allow the body to re-start its own production. Start with the lowest dose possible - for a child as young as yours, maybe .5 - 1 mg

 

Also, B6 is needed as a co-factor to turn tryptophan into melation. So you could also try supplementing B6 before trying melatonin to see if her body could make its own if it had enough B6.

 

Melatonin helps the body fall asleep but it doesn't necessarily keep you asleep. I've taken it for insomnia and it does work to get the night started. But it doesn't prevent me from waking in the middle of the night. My whole family does use it on occasion but not on a regular basis. Personally, I don't wake up feeling as refreshed. (some people have the same complaint with prescription sleeping pills). But that could be because whatever is causing my insomnia to begin with (anxiety, stress, etc) could also be messing with my head while I sleep. It may not be from the melatonin itself. IDK.

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We use melatonin in our house, and we swear by it. But it's true that while it will help you fall asleep, it won't necessarily keep you asleep. I have seen some time-release forms of melatonin, though, that would perhaps help in that instance.

 

There's also a completely un-PANDAS theorem about kids and sleep that you've probably heard before, but now when we're all attuned to PANDAS, we tend to forget some of the more conventional "wisdoms" regarding our kids. Our DS's first pediatrician was a doctor by the name of Marc Weissbluth, and he's fairly well known for the "bible" on kids and sleep habits: "Healthy Sleep Habits, Happy Child." Long and short of his point is, "a wired child is a tired child," so every time I'd report that my DS had begun to wake in the middle of the night, he'd tell me to put him down 15 minutes earlier than his previous bedtime. And every time, it worked like a charm. Thanks to Dr. Weissbluth's training, my DS has almost always slept more than most of his peers at any age . . . had earlier bedtimes, etc. But it works for him.

 

To this day, if he stays up too late over a school break period or something, he'll have trouble sleeping well, sleeping as late as he intended in order to make up for the late night before, etc. So, even on breaks and during the summer, if he has trouble sleeping one night, he'll voluntarily turn in 15 to 30 minutes earlier the next night because he knows he'll sleep better and longer. And he does.

 

So, I don't know how your DD is about bedtime or if, what with summer and all, she might be staying up later than she ordinarily would. But maybe try moving bedtime up a little bit and see if that helps? And if she complains that she's missing out on something by going to bed earlier, maybe just remind her that by going to bed earlier, she'll be ready to wake up and start the next day earlier, too. So she's not "losing" any time to bedtime . . . she's just shifting it. :D

 

Good luck!

Edited by MomWithOCDSon
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Here's what has helped DS, who took hours to fall asleep and then got up in the middle of the night and got in our bed. We started giving him melatonin at age 5.5. That was nearly 3 years ago. You can find chewables at Trader Joe's in 0.5mgs. It worked in getting him to sleep. It does not keep them asleep. He still takes the Trader Joe's but we upped the dosage to 1mg this spring. Unfortunately, he still needs it. We found out why this past March. We took him to see a biomed doctor who treats kids w/ autism. He was given an OAT (organic acids test) test and we found out he barely has any blood levels of tryptophan. Tryptophan is broken down from the foods you eat, synthesized into serotonin which is used to synthesize melatonin. Is there any wonder he has trouble falling asleep?! Its part of the methylation cycle which is not functioning well in our DS because we recently found out he is compound heterozygous for MTHFR mutations. We are treating him for this with the help of his biomed doctor.

 

Since Jan of this year, 8 months after IVIG, he no longer wakes and gets in our bed in the middle of the night. If he does wake, its to use the bathroom, then he falls back asleep on his own.

 

We will continue w/ the melatonin until we get his methylation cycle regulated and he is able to metabolize tryptophan.

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When my daughter was younger and had issues falling asleep due to symptoms, we used Natrol Melatonin liquid (Rite Aid). It was recommended by a neurologist at the time. We were able to adjust the amount to help her fall asleep but not make her feel groggy in the morning. We mixed it in juice.

 

Now I use Source Naturals Melatonin Sublingual (orange flavored) 1mg tablets off/on for myself and dd. You could easily break the tablet in half or quarters. It dissolves under the tongue. Purchased them at Whole Fields.

Edited by philamom
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Melatonin was our only help. We used the strawberry fast dissolve 3 mg, and usually had to give 2 tablets. (12yrs old) We went through the same problem with sleep cycle. It eventually went away and resolved, but I still keep this wonder sleep aid in our med cabinet all the time for those occasional insomnia nights.

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