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Hi! I know its been discussed A LOT but wondering if there is anything new in terms of tips or tricks.

 

DS14 has severe insomnia when he flares. He literally fears not being able to sleep and worries and worries about whether or not he will. This is part PANS, part PTSD since insomnia has been a big player over the years. It typically is an early sign which then leads to a bigger dramatic spirall.

 

Along with meditation, guided imagery (which is really hard to do when flaring), progressive relaxation CBT techniques...we've only had limited success with .5 Melatonin. But even that doesnt really work in a real flare.

 

We've tried antihistamines. He has a paradoxical reaction to both benadryl and doxylamine. They hype him up.

 

Another symptom in a flare is severe slowing of processing speed and memory - so I'd like to stay clear of any class of remedies that would make that even worse.

 

Any magic pills out there?

 

 

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He may have an imbalance between Glutamate and GABA, something common with PANDAS/PANS. Have you tried giving him pure GABA? An increase in Glutamate could be affecting his processing speed and memory. GABA has worked like a dream (pun intended) for my DD. Really helped get her into REM sleep and calm her down.

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I would start low and build up slowly to see what works best for your DS. I give my DD19 500 mg (capsules) three times daily. But I started with 250 mg once daily in evening and then built up from there. I also give my DD high doses of magnesium glycinate in evening to help relax her (also keeps her stools moving) and some Glysom, which is pure glycine. I put that in her bottled water. Glycine also helps with REM sleep.

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we like the homeopathic calc carb which for people with sleep issues a protocol we use: first rinse your mouth and wait for half hour or so before beginning. Place 5 pellets under the tongue and let them dissolve slowly, if person can not fall asleep repeat 5 pellets under the tongue and let them dissolve slowly every hour for up to 5 hours.

 

Our kids are 13 and 15 now.

For us the first time we tried it we found that we gave '5 pellets 3 times' on the first night and second night and then fell asleep for most of the night after settling down.

We use Boiron http://www.amazon.com/Boiron-Homeopathic-Medicine-Calcarea-Carbonica/dp/B005P0XWQY/ref=sr_1_1?ie=UTF8&qid=1450262858&sr=8-1&keywords=calcarea+carb

 

On the 3rd night we gave 5 pellets 2 times and then fell asleep the rest of the night.

After that we take 5 pellets 1 time and fall asleep. We can wake up and go to the bathroom and go back to bed and fall asleep without pellets.

 

Exceptions -- harder time falling asleep around the full moon 4-5 days -- we sometimes have night waking at 2 or 3 a.m. and 5 pellets mid-night can help w some exceptions == 1 exception is hunger, give more time feeding before bed

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Are you using only 0.5 mg. of melatonin for a 14-year-old during a flare? Is he small for his age?

 

While you probably wouldn't want to use it long-term, I would think you could certainly increase the melatonin dosage during a flare to improve his chances of sleep. We have used up to 3.0 mgs. without negative side effects, but even just doubling the 0.5 to 1.0, I would think, might make a noticeable difference.

 

You might also try valerian root; you can get it in tea form (if he'll drink tea) or in capsules. Unfortunately, it stinks (like dirty sweat socks!), but it is effective at calming and readying you for sleep.

 

Finally, if he's like a lot of kids his age and either watching TV, playing video games, or reading on a tablet or Kindle or something right up until bedtime, there've been recent studies that demonstrate that the blue light spectrum that these screens emit curb your body's production of natural sleep hormones. So maybe cut back on that or turn them off a good 30-45 minutes before lights out, or switch the polarity of the screen (read white words on a black background, rather than the other way around) and see if that helps at all.

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Thanks to all! I appreciate your suggestions and comments and feel newly empowered to add a few more options to the toolkit!!!

 

Nancy, as always your suggestions are spot on. Yes we've used greater dosages of melatonin in the past but felt like higher doses were not necessarily more effective. And we were concerned that the higher doses perhaps contributed to the associated fog. But perhaps its time to revisit that idea again.

 

Thanks again everyone!

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Our neuro said we could do 5-6mg of melatonin for our 100lb daughter.

 

We use melatonin just prior to bedtime, and it works for us- but our psych said it really should be taken at dusk- if it's not working you might want to give that a try.

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