Re: sleep issues

November 29, 2004

I would try a local Health food store. I am pretty sure the one by

us has a liquid form and one especially for children. It would be worth a call

to check. I recently tried it again for my 21 year old charger and it has

been working great.

November 29, 2004

I took my son to our children's hospital for a sleep study. They did find

that he never went into a deep sleep. He stayed pretty much in REM sleep the

whole time and then only slept for 4 hours. He is 22 years old and he still

doesn't sleep more than 5 hours a night. He also goes to bed at all different

times and with it getting darker earlier now, that seems to have thrown it off

too. We have kept a sleep chart with awake and asleep times for our behavior

specialist, but sleeping aides like Ambien and Restoril did nothing. Still

don't have any answers. The one thing that does help if we use it only 1-2

nights a week is Zanax. But that is habit forming and I'm not really

comfortable

with the long term use. You might talk to your doctor about a sleep study and

a behavior specialist to see if that would help.

Mom to ph 22 year old cHaRGE'r

November 29, 2004

,

I can't remember if you have posted about sleep before or not, so I

apologize if this is a repeat. Many CHARGE kids have atypical sleep

patterns and what many of us parents call nighttime parties.

For us, it is best for us to make sure Dylan is warm enough and otherwise to

keep the lights off in his room and leave him be. He does not attempt to

climb out of his crib (thank goodness) so I listen from the comfort of my

bed. My rest is less impacted and he gets himself back to sleep eventually.

If we provide any input into the process the wake cycle goes on for much

longer periods of time and are far more frustrating for me. (Think of me

this weekend when we get the joy of traveling with him, no crib, and me

undoubtedly not getting much sleep.)

Dr. Schwrazbein (?sp) has an excellent book about regulating serotonin

levels through diet, exercise etc. It discusses the relationship between

serotonin and melatonin. The book is about reversing the aging process, but

the chapter on serotonin would be useful for all parents of CHARGE kids to

read.

Hope you find some answers.

Kim L

>

> Does anyone know if there's a liquid form of melatonin, or something similar?

> Our 's sleep problems are getting worse and worse. She used to have

> maybe one or two nights a month where her sleep was disturbed. Now, we're

> lucky if we have three nights in a row where she sleeps more than 7 hours at a

> time. Several nights a week, she's either up until midnight and back up

> around 4:00, or she's down around 10:30 but then up from 2:00 until 6:00.

> Then she takes these long afternoon naps to compensate, which just contributes

> to the whole cycle. But we've tried waking her up from the naps, and that's

> when she goes to bed earlier but then is up during the middle of the night.

>

> We bought some melatonin in pill form, but haven't figured out a good way to

> get her to take that. She's not yet 3, so not swallowing pills, and we've

> crushed them and put them in pudding or milk, but she's not always reliable

> about wanting to eat or drink before bedtime. We're thinking a liquid form of

> something might be better--she's usually good at taking liquid medicines by

> dropper.

>

> Has anyone had their child's sleep problems checked out by a doctor? What

> kind of doctor did you see--a neurologist? Are there sleep specialists for

> children? Our regular pediatrician doesn't know much in this area, and our

> developmental pediatrician could only suggest the melatonin. We'd like to

> find out more about what's actually causing the problem, if that's possible,

> so we know the best way to treat it.

>

> , mom to (almost 3)

>

> __________________________________________________

>

November 29, 2004

Kim-

This is interesting -- the part about leaving him alone when he wakes at

night. Aubrie doesn't have sleep problems as such. However, she wakes

in the night and rocks and hums herself back to sleep. It's noisy and

disruptive if you are in the same room. I don't bothered her -- just

listen for her to quiet and fall back asleep. But in the am, if she

wakes early, if someone doesn't know (like a visiting relative) and runs

in to talk to her or soothe her back to sleep, she's awake for the day.

However, if she's left alone, she'll rock and hum back to sleep. The

only time this doesn't work is if there's something exciting happening

that day and the light is shining in so she knows it's morning -- then

she's up and ready to roll. Sometimes I feel guilty cuz if I ignore

her, I can get up to an hour or 2 of extra sleep -- she'll just sit in

there and sing, talk, snooze a bit, etc. She'd never think of getting

out of her bed. She'll call for me, but if I don't come, she entertains

herself. Now that her hips are healing, I have taught her that she can

get out of her bed herself -- but she still doesn't remember and come

into my room on her own. I'm sure the time is coming soon.

I am fortunate that both of my kids have been (and still are) good

sleepers. They but themselves to bed at a reasonable time, and sleep

until a reasonable time in the am. Aubrie's night wakings are regular

sleep patterns but she makes noise when putting herself back to sleep

where most people just roll over. She's so funny cuz she goes to bed so

easily at night. Never complains -- tells me when she's tired -- even

when there is something exciting happening or we have guests.

Michele W

mom to Aubrie CHaRgE (7 yrs today) and (13 yrs)

The birthday has kept her from sleeping in the mornings. She has been

excited for a week!!

>

November 29, 2004

Michele,

and so Aubrie's birthday has arrived!! Happy Birthday to the special little

girl!!

pam

> ----------

> From: Michele Westmaas

> Reply To: CHARGE

> Sent: Monday, November 29, 2004 9:29 AM

> To: CHARGE

> Subject: Re: Sleep Issues

>

> Kim-

> This is interesting -- the part about leaving him alone when he wakes at

> night. Aubrie doesn't have sleep problems as such. However, she wakes

> in the night and rocks and hums herself back to sleep. It's noisy and

> disruptive if you are in the same room. I don't bothered her -- just

> listen for her to quiet and fall back asleep. But in the am, if she

> wakes early, if someone doesn't know (like a visiting relative) and runs

> in to talk to her or soothe her back to sleep, she's awake for the day.

> However, if she's left alone, she'll rock and hum back to sleep. The

> only time this doesn't work is if there's something exciting happening

> that day and the light is shining in so she knows it's morning -- then

> she's up and ready to roll. Sometimes I feel guilty cuz if I ignore

> her, I can get up to an hour or 2 of extra sleep -- she'll just sit in

> there and sing, talk, snooze a bit, etc. She'd never think of getting

> out of her bed. She'll call for me, but if I don't come, she entertains

> herself. Now that her hips are healing, I have taught her that she can

> get out of her bed herself -- but she still doesn't remember and come

> into my room on her own. I'm sure the time is coming soon.

>

> I am fortunate that both of my kids have been (and still are) good

> sleepers. They but themselves to bed at a reasonable time, and sleep

> until a reasonable time in the am. Aubrie's night wakings are regular

> sleep patterns but she makes noise when putting herself back to sleep

> where most people just roll over. She's so funny cuz she goes to bed so

> easily at night. Never complains -- tells me when she's tired -- even

> when there is something exciting happening or we have guests.

>

> Michele W

> mom to Aubrie CHaRgE (7 yrs today) and (13 yrs)

> The birthday has kept her from sleeping in the mornings. She has been

> excited for a week!!

>

> >

>

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www.chargesyndrome.ca, or email info@.... Thank you!

>

November 29, 2004

One of the funniest stories is about Patty's sleep. Patty always was able to

fall asleep anywhere but would wake up with the birds. My family would not

let her sleep over too often because she would wake at 4am. We used to tell

her to stay in bed till 5 as if that was late. There was no keeping Patty in bed

so when she learned how to use the remote control to watch TV we were elated.

She could turn it on and it kept her in one spot and safe. Then we got

cable. One morning around 4 am Patty was awake watching TV and I heard funny

sounds. Well, no one told me that there were adult channels that showed some

actively graphic programs at that hour. In all my life I had never seen such a

thing but there she was, around the age of 5 watching porn on my TV. I learned

that day how to block channels on the TV.

In the end after making sure the channels were safe the TV was a blessing

-again as long as we controlled what she could watch! I got sleep and she was

safe in one spot.

Then as she got older she learned how to put videos in the VCR. People hate

it but I say it was a great babysitter! We have tons and tons of disney

videos.

Bonnie, mom to a 22, Patty CHARGE 20 who still has some sleepness

nights on and off, and wife to

November 29, 2004

Thanks! She's so thrilled. She says it feels different to be 7 -- when

I asked what it felt like -- she said, " Good " . Everything is good when

you're " Positive Polly " ! Her class was doing a role play about

feelings, attitudes, etc with the school social worker, who doesn't know

Aubrie well. When she chose Aubrie to play the role of " Postive Polly "

the class was thrilled since it fit her so well. For her birthday,

instead of sweets, she brought smiley face balls for everyone.

Michele w

>

November 29, 2004

That is why it is so hard to travel. There is no space for him to be just

left alone so he can get himself to sleep. There is always something to

wake him up again, just when he is about ready to nod off.

Kim