sleeping

[Guest guest]

Jeanne,

Patty too used to wake at 4:00 in the morning. It was hard until she

learned how to use the remote control on the t.v. But be careful, I had to

put a parent block on a couple of channels. Then when she learned how to

pour her own cereal I felt like I was a queen sleeping (with one eye open) a

bit more.

We had tried everything. I had room darkening shades too. She was so

bad my brother and sisters complained when they had her sleep over. One

sister wouldn't take her. Then slowly she extended the time. She now sleeps

until six. Often she can even sleep till seven. And once in a while she

will sleep until eight. We never used medications. We just didn't think of

it. When she was little she did find comfort in climbing in our bed and

would sometimes fall back asleep.

Her bedtime has always been early, around seven or eight. There was

nothing to do to keep her awake. She would fall asleep at parties,

concerts... She still has an early bedtime, with nine being the latest and

she is 16. She continues to be tired during the day no matter how much she

has slept.

By the way, she stopped napping around 18 months. I thought it was

because she was just nosy and just didn't want to miss anything. My point is

that it was tough but hopefully it will get better as they get older.

Bonnie

[Guest guest]

Hi Jo-Ann, sounds just like Susie, she only sleeps about 6 hours if

were are very lucky!!!! She wakes up every morning around 5:30am and plays

with her train on her hardwood floor!!!! (we need carpet) She doesn`t have a

nap in the afternoon, I put her in her room for a quiet time (for me!!) It

looks like sleeping is a real problem for CHARGErs..

Debbie, Mom to Susie.

[Guest guest]

My son sleeps 12 hours at night, he needs exactly 12 hours, it's

weird. However, he goes goes goes all day long, and never sits to take a

break. He doesn't nap anymore. Is anyone else's kid like this? He has 2

switches, " on " and " off " , no in between. Sometimes I get so tired just

watching him.

Debbie mom to 3 w/CHARGE, 6, andra 15 mths

Re: Sleeping

Hi Jo-Ann, sounds just like Susie, she only sleeps about 6 hours

if

were are very lucky!!!! She wakes up every morning around 5:30am and plays

with her train on her hardwood floor!!!! (we need carpet) She doesn`t have a

nap in the afternoon, I put her in her room for a quiet time (for me!!) It

looks like sleeping is a real problem for CHARGErs..

Debbie, Mom to Susie.

" 5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July

20-22, 2001. Information will be available first in CHARGE Accounts, the

CHARGE Syndrome Foundation's newsletter. "

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

[Guest guest]

,

Is Kennedy feeling any better now? It is early in the year to be so sick.

Hope things get back to normal soon.

Bonnie

[Guest guest]

My son Timmy is 5yrs. and still takes a nap once in awhile, but has always slept great, unless he is sick or teething. guess I am one of the lucky ones, cause I NEED sleep. He does too, thank goodness.

mom to Timmy 5 charge, Keegan 2.5, and Liam 1 month, and wife to PAt, my sleep deprived husband just like me