Sleep issues

[Guest guest]

It sounds like you were referring to the melatonin cycle. Light

supresses it and darkness raises it. I think it peaks in the middle

of the night. If you keep bright lights on or stay up late working

on your computer (*raises hand sheepishly*), you keep melatonin

suppressed, and it can't build up and you don't get to sleep. You

need the sunlight earlier in the day to keep your internal

clock/circadian rhythm set. You can't wear sunglasses, as the light

needs to enter the eye directly. I sleep a lot better when I get

outside for sun during the day, especially if I can cobble together

a total of a couple of hours (not direct sun, but just the

sunlight). I now drive with the window down, and sometimes let the

sun shine on my face and arm to get my 20 minutes of Vitamin D

through my skin. I think if you get the sun too late in the day, you

can throw things off. I found a good bit of info in Wikipedia if you

want to read about melatonin there.

My tinnitis increased with this last Armour and DHEA increase. I

need to ask the doc about it. My tricyclic a-d causes it, too. Hope

to be able to work on lowering it a bit before too long. And, yes,

it really starts buzzing when I'm tired.

Glad you are seeing some change in getting more sleep at night and

less in the day time. I know it's so frustrating to have it go so

slowly.

Would like to share some progress I've had. For the last 5 weeks

I've been out walking! I've only gone every 3rd day, but I've been

able to walk our whole block and back and I've yet to get tired.

It's been about 4 years since I could walk and keep at it. Last year

I never thought I'd be able to do this again.

Have a safe trip, and take it easy, as much as you can...sg

> Thanks, Sara,

>

> Things may be getting a little better. I slept 4 or 5 hours last

night

> (better than 2!) and only 3 today instead of 5 or 6. I think I

remember

> a little something I read a long time ago about getting sun soon

after

> waking up...??? Sorry - can't complete the thought.

>

[Guest guest]

Lucy, My daughter was very irritable as a baby and difficulty sleeping too she

cried if she was not held. It helped her to sleep wrapped up in her boppy pillow

in her bed. Her behavior changed about a year but she also started having

partial complex seizures and started on Trileptal. We have a very structured

sleep routine and have had forever. Since the PMG caused her to have left hemi

CP we do lots of stretching and massage, warm bath and listen to the same

kindermusic CD every night. She sleeps fairly good now but has some issues once

a month of so. Diane mom Nisha 4 PMG LHCP

To: polymicrogyria

From: catherine.jacobson@...

Date: Fri, 13 May 2011 19:37:02 +0000

Subject: Re: Sleep issues

Dear Lucy,

Your description of your son righ now sounds very familiar! My son was very

similar at that age. At the time we didn't know what was wrong, but I knew it

wasn't colic. It just didn't fit the bill. We also tried craniosacral therapy.

About a month after starting that, he started to have seizures. To this day, I

still have my doubts about whether there's a relationship between the

craniosacral therapy and seizure onset. The craniosacral therapy didn't help

Ben sleep.

I'm sorry to say that we never found a solution. Ben, who is now 2, still goes

through periods when he can't sleep well, and I think it's his brain going

haywire. When he CAN sleep, he's a great little sleeper, meaning he has no

behavioral issues around sleep.

If you have the resources to get a night nurse, that's the way to go. We

couldn't do that, so my husband and I take turns. That way you get sleep at

least every other night. It helps! Sleep deprivation is a form of torture.

As far as development, my mantra has been 'take it one day at a time' and 'don't

worry about something that hasn't happened yet'. I don't think any good doctor

will tell you how your son will develop (only bad ones make this prediction,

because truth be told they just don't know). I would make sure to have a great

developmental pediatrician who can help you keep track of your son's development

so that he gets the appropriate intervention early in the game. I had to learn

the hard way, for example, that my son needed visual therapy. He has cortical

visual impairment (CVI). There's good evidence that this can be greatly helped

by the right visual therapy and I'm panicked now that I didn't know to start

that earlier. I got his eyes checked - which are functioning properly - but no

one told me about the possibility of CVI (which is when visual processing in the

brain is off). Not the opthamologist, nor his pediatrician, nor his

neurologist.

All the best,

>

> Hello,

> My son, , is 10 weeks old and is diagnosed with PMG (caused by CMV). He

sleeps very little. He will take himself off to sleep first thing in the morning

but later we have to use a dummy. He will then often doze about 15 minutes, cry

and spit out the dummy. We then start again. Even with the dummy as the day goes

on he will not sleep at all. He will not sleep all evening and we often do not

get him to sleep at night until the early hours of the morning. Sometimes he is

crying and can't be consoled. Often he will seem to drop off but then be awake

again or cry as earlier but go quiet when given the dummy again. The

paediatrician suggested it was just his age. I am convinced there is more to it

and it is related to his PMG. I have seen posts on here about older children and

sleep but not babies. Does anyone have a similar experience?

> I am currently looking into cranial osteopathy at the recommendation of a

friend and my Health Visitor. Does anyone have any experience of this?

> Also if anyone reading this can comment on ' development I'd be

grateful. He is doing very well at the moment, smiles, holds his head very well

and pretty much anything else expected at this age. Is it inevitable he will

suffer some lack of development later or could he continue to progress as any

baby without PMG?

> Thanks

> Lucy

>