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Finlay (10, BPP, microcephaly) gets frisium and melatonin for the night. He

still needs help turning a few times a night, but in comparison to the first

6 or 7 years of his life, that is very good.

As a baby he would wake up in hysterics, need calming down, then settling to

bed - a process of at least 30minutes - minimum 6 times a night. He

gradually got better at falling asleep and the time spent with him in the

night got a bit shorter, but he (and therefore we) never slept well before

the medication.

Annelies

sleep disorder

Do any of your kids have sleep disorders? What do you do for it?

Diane

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Annelies,

My son used to that before he decided to just stay up all night (lol). Seriously

though, I would wake up to him screaming and crying as if someone was trying to

kidnap him! When we finally got in to see his neuro, they diagnosed him with

night terrors.. He's not on any sleep meds. I was told that he would outgrow it?

He hasn't done it in a while but the nights he would, it freaked me out every

time.

-

Sent from my HTC smartphone on the Now Network from Sprint!

----- Reply message -----

To: <polymicrogyria >

Subject: sleep disorder

Date: Sat, Oct 22, 2011 8:20 am

Finlay (10, BPP, microcephaly) gets frisium and melatonin for the night. He

still needs help turning a few times a night, but in comparison to the first

6 or 7 years of his life, that is very good.

As a baby he would wake up in hysterics, need calming down, then settling to

bed - a process of at least 30minutes - minimum 6 times a night. He

gradually got better at falling asleep and the time spent with him in the

night got a bit shorter, but he (and therefore we) never slept well before

the medication.

Annelies

sleep disorder

Do any of your kids have sleep disorders? What do you do for it?

Diane

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I think there has to be some link between polymicrogyria and sleep. We have seen

two well regarded sleep doctors in nyc, and neither can figure out why Ruby has

insomnia even with sleep medication. We tried 5 different ones and have settled

for clonidine combined with melatonin. It keeps her asleep for 6 hours and then

she wakes up and talks to herself, sings, and plays. Sometimes it lasts for a

few hours, and sometimes she falls back asleep sooner.

We have had three sleep studies done which are inconclusive since they register

that she is having a good nights rest which I know is impossible!!! When I asked

one of the doctors with plenty of frustration what is going on in her brain, he

just said " the brain really is a mystery when it comes down to it all " .

Hopefully one day we will all get some restfull nights!

Thanks,

Ruby (4.5, right sided pmg), Clyde 8

>

> Mine doesn't have a diagnosis of a sleep disorder but has nights/ weeks where

he will not sleep. Just last week, he was up for 42 hours straight. I still put

him to bed those nights but heard him all through the night playing and turning

channles on his tv. He knocked on his door just about all night (we have the

safety knobs) wanting to use the bathroom and wanting to get up. After the 42

hours he slept a full night and then was back to being awake again. There is not

much I can do for it besides just roll with it and lose just as much sleep as he

does. I'm curious to know if any other child does the same thing. Sorry if this

wasn't much help.

>

> -

>

> Sent from my HTC smartphone on the Now Network from Sprint!

>

> ----- Reply message -----

>

> To: " polymicrogyria " <polymicrogyria >

> Subject: sleep disorder

> Date: Wed, Oct 19, 2011 4:47 pm

>

>

> Do any of your kids have sleep disorders? What do you do for it?

> Diane

>

>

> ------------------------------------

>

>

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Quinn will be 6 in January. Annelies, our experience sounds similar to

yours. Quinn cried some of the time at night, during those years he was

awake so frequently. But mostly he was just awake, uncomfortable, needing

entertainment. One weekend he'd only slept 6 out of 32 hours, and his

nights were only getting him about five hours at that point, and I called

the neurologist. Quinn had been sleeping worse and worse, and the neuro was

aware of it, so he prescribed Clonazepam. Quinn is still taking it, and it

works well. .5mg orally disintegrating tablet every evening. I am so glad

he has it. I think without it I would have lost my mind by now.

I'd be curious to know how the kids' sleep issues look on a graph or

something. It seems like there would have to be patterns and similarities.

Blessings,

(mom to 5)

--

Out of the Gray

Serving caregivers who give their all.

Donate here: http://stylewithpurpose.blogspot.com/

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