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

[Guest guest]

I can relate well I agree PMG does mess with their sleep. It is very important

for attention, learning and mood so it is worth the time you invest to get a

good pattern. Our seizure med has always been a higher dose at night. Now Keppra

1.5 ml AM and 2ml at night. Sleep is also a learned habit maybe she needs to be

taught to sleep.

My advice is to find a kids book about going to bed and sleeping talk about

expectations if you awaken I can cover you but you must try to go back to sleep.

Get a baby doll and help the baby sleep. No caffine or electronics before bed.

Have a routine that does not vary more than 15min. Keep a diary.

Our routine is bath, yoga card picture stretching/massage, 2 books, in bed with

massaging pillow and flash lights on celing pictures, the same kindermusic CD

and white noise alarm clock on. I have also read about a blue night light we

have a regular one. For wake up I just cover her back but time to time we have

to review what happpens if we awaken in the day. Now if I vary the routine we

have problems with awakens. I know it sounds crazy but it is just 1 hr and

includes therapy activities. We can do abreviated versions but same things.

Diane

[Guest guest]

My son (6) is the same way, hes better now that we give him baclofen

before bed.

I totally agree that it is associated with having the PMG. Hopefully it gets

better, Its hard for the

parents as well because were not getting any sleep either.

Lilly-Mom to -PMG,CP

________________________________

To: polymicrogyria

Sent: Fri, March 11, 2011 5:58:33 AM

Subject: 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]

Thank you Diane and Lily for your insight...We are going to try the white noise

machine/sleep cd routine and meeting w/ sleep specialist again next week to see

what we are going to do next. All these medications seem to have strong side

effects so I am hoping if we try something else it will actually work. Yes, its

so hard for us since we feel like we still have a newborn without sleep!

Best,

>

> My son (6) is the same way, hes better now that we give him

baclofen

> before bed.

> I totally agree that it is associated with having the PMG. Hopefully it gets

> better, Its hard for the

> parents as well because were not getting any sleep either.

>

> Lilly-Mom to -PMG,CP

>

>

>

>

> ________________________________

>

> To: polymicrogyria

> Sent: Fri, March 11, 2011 5:58:33 AM

> Subject: 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]

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 intervention it got so bad we tried everything:

valium, melatonin, Chloralhydrate . Now he is on baclofen, melatonin and

frisium for night time. We have had to increase the doses gradually. He

sleeps much better now, if not necessarily through the night and when he

starts waking up more often then 2-3 times it tends to herald an illness

brewing.

It took along time to find a doctor who understood that providing sleep for

us, the parents, was really important.

Keep insisting with your doctors. You need to sleep at least part of the

night to keep going!

Annelies

[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]

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 intervention it got so bad we tried everything:

> valium, melatonin, Chloralhydrate . Now he is on baclofen, melatonin and

> frisium for night time. We have had to increase the doses gradually. He

> sleeps much better now, if not necessarily through the night and when he

> starts waking up more often then 2-3 times it tends to herald an illness

> brewing.

>

> It took along time to find a doctor who understood that providing sleep for

> us, the parents, was really important.

>

> Keep insisting with your doctors. You need to sleep at least part of the

> night to keep going!

>

>

>

> Annelies

>

>

>

>

>

> [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]

Hi ,

Baclofen is a muscle relaxant and ante-spastic agent which can also be

called Lioresal. In our case, we found that reducing the muscle tension

helped Finlay sleep better. However, as he got older we have had to add

Frisium (generic name clobazam) which is a seizure medicine similar to

clonazepam (klonopin) or diazepam (valium). I understand it is not available

in the US.

It does not guarantee a good night sleep. Last night I was still up 4 times

and the night before 6 times, but most of the time we will not need to get

up more then twice and mostly in the early morning.

Melatonin is good to help them fall asleep. Your body should produce it

automatically, but some people need some extra.

You will have to get used to the idea that most medications can have pretty

severe side effects. We were dead set against all this medication because of

the side effects. However, you need to be able to function, so we agreed to

try.

I lost my job because I was living my life on automatic pilot - I was

exhausted. For us, it was a good thing because we realised we could manage

on 1 salary. It does not necessarily work that way for everyone and it is

better to get some sleep and keep your job if you need it!

Best of luck.

Annelies

[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]

We tried oral baclofen for my daughter's spacticity when she was younger (2-3

yrs old). It did not work for her due to lowering the muscule tone in her throat

and causing her to choke. We were told this is common.

Good luck. My daughter is finally doing better at night with few wakings and

even some full nights of sleep. When she does have bad nights though she is up

often or tossing and turning.

> >

> > 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 intervention it got so bad we tried everything:

> > valium, melatonin, Chloralhydrate . Now he is on baclofen, melatonin and

> > frisium for night time. We have had to increase the doses gradually. He

> > sleeps much better now, if not necessarily through the night and when he

> > starts waking up more often then 2-3 times it tends to herald an illness

> > brewing.

> >

> > It took along time to find a doctor who understood that providing sleep for

> > us, the parents, was really important.

> >

> > Keep insisting with your doctors. You need to sleep at least part of the

> > night to keep going!

> >

> >

> >

> > Annelies

> >

> >

> >

> >

> >

> > [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 emailed him about this and will see what he thinks. We started melatonin and

I think it is slightly helping; after reading about melatonin deficiency I

wonder if thats part of the problem. We also started Clonidine last week and so

far have had 1 out of 5 nights that Ruby slept almost 6 hrs uninterrupted; so

possibly this combination could be better than others.

keeping fingers crossed each night.

thanks everyone,

>

> 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

>