Insomnia/polymicrogia--anyone else have children who have difficulty sleeping???

March 11, 2011

Hi,

My daughter just turned 4, she has right sided polymicrogyria, and we are having

the hardest time with her sleep. We've done 2 sleep studies, had her

tonsils/adenoids removed (so that there is no possibility of sleep apnea), and

have tried three medications to regulate her sleep- neurontin, klonzepam, and

most recently lyrica. She was diagnosed with restless leg syndrome and

" behavioral insomnia " since the sleep studies showed only abnormal brain

activity but otherwise that she did sleep. (of course only at the sleep study

clinic!)

None of the medications have worked to give her a full night of sleep. She

constantly is up talking and laughing to herself and making strange arm

movements like she is punching in the air. (which we have videotaped to see if

its a seizure but neuro has said this is related to restless leg syndrome). Some

nights she does asleep at a normal time and then wakes up at 3 or 4 to talk to

herself or is very restless.

We've had 2 24 hour and 6 regular EEG's that show irregular activity, so she

started a low dose of keppra. But so far none of the sleep specialists, or 3

neurologists that she sees can explain why she is not sleeping. I know from my

'mom intuition' that its related to the polymicrogyria but am hopeless as to

what to do since already 3 strong medications were not able to give her a nights

sleep. We may work on some audio cd's that her therapists recommended, but I

really would like to find someoe who can work with us on guiding her towards a

good night of sleep. She is tired throughout the day, and in the past has had

some growth issues that probably were related to her lack of good sleep.

I have this hope that somewhere there is a doctor or clinician who is studying

the effects of sleep and polymicrogyria or that there is some solution out

there.

If anyone has any thoughts on strategies I would be very grateful!

Best,

mom to Ruby-right sided pm (4), and Clyde (7)

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