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Re: Is this the beginning of sleep issues?

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,

Out of curriosity, did you change formula/new food?

what about the change in the weather?

These are my first guesses. Maby someone can come up with something better?

I was going to joke that someone slipped her a cup of coffee, lol. Maby not

though.

Chantelle

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,

Out of curriosity, did you change formula/new food?

what about the change in the weather?

These are my first guesses. Maby someone can come up with something better?

I was going to joke that someone slipped her a cup of coffee, lol. Maby not

though.

Chantelle

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,

Sporadically, Kennedy has " party nights " where she just does NOT sleep.

She's not sick, upset, etc, etc, just happy and wants to play. and sing. and

talk. and turn her movies on. You get the picture. It's not that big of a

deal because it is sporadic and she usually sleeps okay (albeit, she does

take a long time to get to sleep some nights). Also, her room is downstairs

and we are up so it's not too bad noise-wise for us; she understands that

she has to keep it down when others are sleeping, she's actually quite

mature about it the last year or so. It's her " sleep thing " ...

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Guest guest

,

Sporadically, Kennedy has " party nights " where she just does NOT sleep.

She's not sick, upset, etc, etc, just happy and wants to play. and sing. and

talk. and turn her movies on. You get the picture. It's not that big of a

deal because it is sporadic and she usually sleeps okay (albeit, she does

take a long time to get to sleep some nights). Also, her room is downstairs

and we are up so it's not too bad noise-wise for us; she understands that

she has to keep it down when others are sleeping, she's actually quite

mature about it the last year or so. It's her " sleep thing " ...

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Chantelle, I actually did ask my husband if she got her hands on some

coffee because I was out with my mom last night so I wasn't sure what

she ate for dinner. But really, no major change in diet, meds or

weather right now--although she did get her 5th dose of Synagis shot

on Wednesday--that's the only thing I can think of.

B.

>

> ,

>

> Out of curriosity, did you change formula/new food?

>

> what about the change in the weather?

>

> These are my first guesses. Maby someone can come up with something

better?

> I was going to joke that someone slipped her a cup of coffee, lol.

Maby not

> though.

>

> Chantelle

>

>

>

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, has this always been the case for Kennedy or did it start later?

And, when you say sporadic, how many night on average would you say a

month she has these little " parties " ? How does she function without

sleep? Does she make up for it and just kind of move on like it's no

big deal? Thanks for your help!

B.

>

> ,

> Sporadically, Kennedy has " party nights " where she just does NOT sleep.

> She's not sick, upset, etc, etc, just happy and wants to play. and

sing. and

> talk. and turn her movies on. You get the picture. It's not that

big of a

> deal because it is sporadic and she usually sleeps okay (albeit, she

does

> take a long time to get to sleep some nights). Also, her room is

downstairs

> and we are up so it's not too bad noise-wise for us; she understands

that

> she has to keep it down when others are sleeping, she's actually quite

> mature about it the last year or so. It's her " sleep thing " ...

>

>

>

>

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Guest guest

, has this always been the case for Kennedy or did it start later?

And, when you say sporadic, how many night on average would you say a

month she has these little " parties " ? How does she function without

sleep? Does she make up for it and just kind of move on like it's no

big deal? Thanks for your help!

B.

>

> ,

> Sporadically, Kennedy has " party nights " where she just does NOT sleep.

> She's not sick, upset, etc, etc, just happy and wants to play. and

sing. and

> talk. and turn her movies on. You get the picture. It's not that

big of a

> deal because it is sporadic and she usually sleeps okay (albeit, she

does

> take a long time to get to sleep some nights). Also, her room is

downstairs

> and we are up so it's not too bad noise-wise for us; she understands

that

> she has to keep it down when others are sleeping, she's actually quite

> mature about it the last year or so. It's her " sleep thing " ...

>

>

>

>

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I too have had occasional " party nights " . I think , Belinda and I

once early last year talked on msn till near 5am my time, lol! Most nights

i sleep 8 hours. I think last week i had a " party night " I only ended up

with less then 2 hours of sleep and surprizingly i was fine all day and well

till i got home in the evning. lol. Its very sparadic with me :)

Chantelle

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I too have had occasional " party nights " . I think , Belinda and I

once early last year talked on msn till near 5am my time, lol! Most nights

i sleep 8 hours. I think last week i had a " party night " I only ended up

with less then 2 hours of sleep and surprizingly i was fine all day and well

till i got home in the evning. lol. Its very sparadic with me :)

Chantelle

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,

It would be less than once a month (although sometimes she has a run of a

couple nights but that's REALLY rare). It started later (2-3yrs I think).

She functions just as well as you or I would on a full nights' sleep (or

better, really). Honestly, you would *never* know. It's scary really.

People always say " oh, she must crash out later in the day or go to be

really early " . Not so. She just keeps going and going and going...my

little Energizer bunny. You are correct; she just moves on like it's no big

deal.

>

> , has this always been the case for Kennedy or did it start later?

> And, when you say sporadic, how many night on average would you say a

> month she has these little " parties " ? How does she function without

> sleep? Does she make up for it and just kind of move on like it's no

> big deal? Thanks for your help!

>

> B.

>

> ---

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,

It would be less than once a month (although sometimes she has a run of a

couple nights but that's REALLY rare). It started later (2-3yrs I think).

She functions just as well as you or I would on a full nights' sleep (or

better, really). Honestly, you would *never* know. It's scary really.

People always say " oh, she must crash out later in the day or go to be

really early " . Not so. She just keeps going and going and going...my

little Energizer bunny. You are correct; she just moves on like it's no big

deal.

>

> , has this always been the case for Kennedy or did it start later?

> And, when you say sporadic, how many night on average would you say a

> month she has these little " parties " ? How does she function without

> sleep? Does she make up for it and just kind of move on like it's no

> big deal? Thanks for your help!

>

> B.

>

> ---

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Guest guest

,

It would be less than once a month (although sometimes she has a run of a

couple nights but that's REALLY rare). It started later (2-3yrs I think).

She functions just as well as you or I would on a full nights' sleep (or

better, really). Honestly, you would *never* know. It's scary really.

People always say " oh, she must crash out later in the day or go to be

really early " . Not so. She just keeps going and going and going...my

little Energizer bunny. You are correct; she just moves on like it's no big

deal.

>

> , has this always been the case for Kennedy or did it start later?

> And, when you say sporadic, how many night on average would you say a

> month she has these little " parties " ? How does she function without

> sleep? Does she make up for it and just kind of move on like it's no

> big deal? Thanks for your help!

>

> B.

>

> ---

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Guest guest

,

Our is now 21, and we are re-enduring sleep horrors. She is on

Melatonin and Trazedone for sleep (added in late teen years, as I recall).

Now, she wakes generally between 3 and 5 and wants breakfast and then

goes back to sleep. There were years in the past when would wake

and play and have a grand time. This was sort of funny because she was

attending Perkins at the time, and they swore that this wasn't a problem

(oh, but they changed their minds!). 's door at home has an old

fashion keyhold (looks like a coloboma!) and is directly across from A's

and my room. I could glance through the key hole and know instantly what

was going on. It took ages for others to accepts this!

In the past, one of us would often sleep in the hallway by 's door.

We have a central alarm system in the house if she decides to leave, but

we also have a door alarm on her room to alert us if she's out during the

night.

I wish I could remember when this problem started, but I cannot. I know

it was serious before went to Perkins (by the time she was, say, 10),

but I just can't remember before then. However, my curiosity is aroused,

so I'll try to find my old notes on things and shall let you know what I learn.

I know how very hard this can be! Martha

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Guest guest

,

Our is now 21, and we are re-enduring sleep horrors. She is on

Melatonin and Trazedone for sleep (added in late teen years, as I recall).

Now, she wakes generally between 3 and 5 and wants breakfast and then

goes back to sleep. There were years in the past when would wake

and play and have a grand time. This was sort of funny because she was

attending Perkins at the time, and they swore that this wasn't a problem

(oh, but they changed their minds!). 's door at home has an old

fashion keyhold (looks like a coloboma!) and is directly across from A's

and my room. I could glance through the key hole and know instantly what

was going on. It took ages for others to accepts this!

In the past, one of us would often sleep in the hallway by 's door.

We have a central alarm system in the house if she decides to leave, but

we also have a door alarm on her room to alert us if she's out during the

night.

I wish I could remember when this problem started, but I cannot. I know

it was serious before went to Perkins (by the time she was, say, 10),

but I just can't remember before then. However, my curiosity is aroused,

so I'll try to find my old notes on things and shall let you know what I learn.

I know how very hard this can be! Martha

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Guest guest

,

Our is now 21, and we are re-enduring sleep horrors. She is on

Melatonin and Trazedone for sleep (added in late teen years, as I recall).

Now, she wakes generally between 3 and 5 and wants breakfast and then

goes back to sleep. There were years in the past when would wake

and play and have a grand time. This was sort of funny because she was

attending Perkins at the time, and they swore that this wasn't a problem

(oh, but they changed their minds!). 's door at home has an old

fashion keyhold (looks like a coloboma!) and is directly across from A's

and my room. I could glance through the key hole and know instantly what

was going on. It took ages for others to accepts this!

In the past, one of us would often sleep in the hallway by 's door.

We have a central alarm system in the house if she decides to leave, but

we also have a door alarm on her room to alert us if she's out during the

night.

I wish I could remember when this problem started, but I cannot. I know

it was serious before went to Perkins (by the time she was, say, 10),

but I just can't remember before then. However, my curiosity is aroused,

so I'll try to find my old notes on things and shall let you know what I learn.

I know how very hard this can be! Martha

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Guest guest

, welcome to the sleepless nights or the disrupted nights

xox

> Hi all,

>

> Carmen (20 months) has always been a good sleeper (9-10 hours per

> night, no wake ups or suctioning with an hour or 2 hour nap each day)--

> well last night for no reason, she decided at 10:00 p.m. that she was

> up for the night and actually stayed awake until the next morning

> (today)(no crying, no suctioning--just happy to be awake)--she's still

> awake now and it is noon the next day and she won't go to sleep. What

> is this all about? Should I be prepared for this as the beginning of

> her sleep issues as I've read many of you describe so many times?

> Yikes!!!!

>

> B. mom to Zachary 4.5 years and Carmen 20 months (CHARGE)

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Guest guest

,

Sorry to hear about your sleepless night. Tyler has always been a good

sleeper too, but occasionally, especially when on any medication-steroids or

albuterol-he only sleeps for a couple of hours. He seems to function just fine.

It is actually quite amazing how these kids work that way. I wish I could do

that and function well. He has always been an early riser, like 5-6am, but at

night he crashes to sleep by no later than 9. Even as a baby, he would be up

early. There is hope that it won't be a forever thing, just an occasional

occurrence. I wish you restful nights.

--

Kim Menne

mom of Raychel-9, Tyler (CHARGE)-8, -21mo, and wife of Craig

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