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

[Guest guest]

I forgot we used a weighted blanket till her pattern was better too.

Diane

Insomnia/polymicrogia--anyone else have children

[Guest guest]

If anyone has any great results please post them!

Joshy has had insomnia for almost 8 of his 9 years. He plays all night, tares

apart his bed/room, happy but wide awake- other nights he just wakes fir a few

mins at a time.

I'm so tired playing catch up on my sleep debt and trying to explain to his

school why he misses most mornings.

Melatonin, Benadryl and Anti seizure meds helped for a while but after a few

months of use he's back to his normal insomnia.

It's much worse trying to sleep away from home- we don't do hotels if we can

ever avoid them.

-, mom

Joshy 9

Sent from my iPhone

I forgot we used a weighted blanket till her pattern was better too.

Diane

Insomnia/polymicrogia--anyone else have children

------------------------------------

[Guest guest]

Baclofen would be from your neuro or physiatrist for relaxing the cp tone

issues. Sorry no help with other meds.

Diane

Re: Insomnia/polymicrogia--anyone else have children

who have difficulty sleeping???

Hi,

Seems like a few of you have used Baclofen, I metioned it to our sleep

specialist today and he didnt seem as familiar with it. He wants us to try

melatonin and mirapex, so far every medication has given us pretty severe side

effects.

Has anyone tried mirapex? Thank you for sharing your experiences, it is very

helpful to know that this is something others can relate too. I am a zombie at

my job because we never get a real night of sleep!

Best,

sarah

>

> Finlay (9) has never been a good sleeper, but he shouts and cries when he

> wakes up, so we cannot leave him unattended for he wakes his siblings. As a

> baby he used to become hysterical and scream until he was sick. Now that is

> rare, but still happening sometimes.

>

> 3 years ago we started Baclofen and he was more relaxed and the sleep

> pattern improved to us having to get op about 3 times a night to help him

> turn over.

>

> Last year after a botox interv

[Guest guest]

Hi,

Our child is 7 1/2 and she has been on melatonin and clonadine (used for sleep

in kids off-label, it's a high blood pressure med) for a few years now. It's not

fool proof, but it's better than we got before! I was also dead set against

medicating her, but we all were SO SO exhausted, after years of this, and the

lack of sleep was affecting her development.

Good luck!

Thea

[Norton AntiSpam] Insomnia/polymicrogia--anyone

> else have children who have difficulty sleeping???

>

>

>

>

>

> 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)

>

>

>

>

>

>

[Guest guest]

I had no idea that so many of our kids had this severe of an issue. We have had

problems from time to time but since she was a newborn we have done the same

things that I mentioned before. Things to create good sleep hygene rarely used

meds except higher PM seizure doses and benedryl till I knew that can cause

seizures, oops. My question is what is Dr. Dobyns take on this issue? Has anyone

asked since he is the PMG expert?

Diane