sleep issues

June 15, 2004

's sleep problems definitely came after infancy. I don't remember when

we became aware of them. When she was still in the local school system,

she'd often be awake into the early morning hours. Now, at times, she wakes

@ 3:00 and is up and down. Meds definitely help. Again, we didn't have

problems in the early years, so enjoy yourself!. Martha

August 9, 2004

This type of night awakening is relatively common. Many of us parents use

language relating to " parties " to describe these episodes, because the kids

are awake, happy, and ACTIVE.

For us it is best to leave Dylan alone in his crib and let him get that

motor activity, arms and legs kicking, out of his body until he is ready to

go to sleep again - we believe it his way of self-regulating his own nervous

system. When we get involved it takes away from that ability and generally

makes the wakeful period last longer, maybe because we are giving more input

to an already overloaded nervous system. I also know that having his

blanket in there helps. Some of these episodes seem to have been brought on

by being cold.

We are at a place now where I am comfortable staying in bed, with one ear

open, aware of him partying, but I don't get up, so my sleep is not that

impacted. Fortunately he does not climb out of his crib - he likes it in

there, so I do not fear for his safety. When we travel etc, nighttime can

be a nightmare if he wakes for a " Dylan party " , I am definitely awake trying

to keep him from disturbing everyone else. He has almost grown out of his

crib, so we are trying to figure out how to handle this next phase.

When Dylan was 's age he also seemed to " switch " on and off, no gradual

falling asleep. If he slept for even 5 minutes, his clock was disrupted and

he would not fall asleep again until 2 or 3 in the am. His cycle was 12

hours awake and 12 hours asleep even as a one year old, click off, click on.

Falling to sleep traveling is rough, he needs to feel the confines and

safety of his crib, so has a really hard time anyplace away from home.

Kim L

Mom to Dylan 8, Kayla 13, Tyler 16, wife to Roy

> There have probably been posts on this question before, but I'm fairly new to

> the list so I'll ask again! Do any of your kids have sleep problems? Our

> daughter , who is 2 1/2, just doesn't seem to require much sleep (not

> near as much as her Mom and Dad do!). She's been getting into this pattern

> lately where she wakes up in the middle of the night, and she's wide awake for

> several hours. She's not fussy or anything--she's usually " wired " and ready

> to play, eat, or whatever. We've tried just leaving her in her bed since she

> doesn't cry or fuss, but she'll still stay awake in it for several hours--so

> most usually one of us will just get up with her and let her do her own thing

> for a little while until she gets tired again.

>

> This used to happen only about once a month, but lately it's progressed to

> about once a week. This past week, it happened several nights in a row.

> We've asked our developmental ped about it (she's somewhat familiar with

> CHARGE), and she suggested giving a small dosage of melatonin. But she

> did say that kids get reliant on that for sleep, so you have to keep

> increasing the dosage over time. I'm not really thrilled about giving

> something that she's going to need to keep relying on for sleep. Has anyone

> tried melatonin? What were your experiences? Other suggestions?

>

> Thanks!

>

> Kauffman - mother to (2 1/2) and wife to Arlin

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

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

>

August 9, 2004

Hi

Our daughter has these parties - her latest was last night which

started just after midnight and continued for quite a number of hours. I was

unable to get back to sleep when she initially awoke which

invariably then leads to a party. This disturbs my partner Flo's sleep

considerably more than mine.

It can happen once a week to once every few weeks.

There was a substantial discussion on this topic a month to 2 months ago.

You should be able to pick this discussion up in the archived postings.

Simon

August 9, 2004

Hi

Our daughter has these parties - her latest was last night which

started just after midnight and continued for quite a number of hours. I was

unable to get back to sleep when she initially awoke which

invariably then leads to a party. This disturbs my partner Flo's sleep

considerably more than mine.

It can happen once a week to once every few weeks.

There was a substantial discussion on this topic a month to 2 months ago.

You should be able to pick this discussion up in the archived postings.

Simon

August 9, 2004

Hi

Our daughter has these parties - her latest was last night which

started just after midnight and continued for quite a number of hours. I was

unable to get back to sleep when she initially awoke which

invariably then leads to a party. This disturbs my partner Flo's sleep

considerably more than mine.

It can happen once a week to once every few weeks.

There was a substantial discussion on this topic a month to 2 months ago.

You should be able to pick this discussion up in the archived postings.

Simon

August 9, 2004

wesley reads books most the time when he gets up sometimes he plays

computer. most times he takes a bath. he doesn't have hard time

with less sleep so we allow him to get up at like five am but

lately we have told him middle of the night stuff he has to keep in

his bed. that works better for everyone else. he is not too happy

about it but he can read books there and that he likes.

KayRena

lakcharge@... wrote:

> There have probably been posts on this question before, but I'm

> fairly new to the list so I'll ask again! Do any of your kids have

> sleep problems? Our daughter , who is 2 1/2, just doesn't seem

> to require much sleep (not near as much as her Mom and Dad do!).

> She's been getting into this pattern lately where she wakes up in the

> middle of the night, and she's wide awake for several hours. She's

> not fussy or anything--she's usually " wired " and ready to play, eat,

> or whatever. We've tried just leaving her in her bed since she

> doesn't cry or fuss, but she'll still stay awake in it for several

> hours--so most usually one of us will just get up with her and let her

> do her own thing for a little while until she gets tired again.

>

> This used to happen only about once a month, but lately it's

> progressed to about once a week. This past week, it happened several

> nights in a row. We've asked our developmental ped about it (she's

> somewhat familiar with CHARGE), and she suggested giving a small

> dosage of melatonin. But she did say that kids get reliant on that

> for sleep, so you have to keep increasing the dosage over time. I'm

> not really thrilled about giving something that she's going to

> need to keep relying on for sleep. Has anyone tried melatonin? What

> were your experiences? Other suggestions?

>

> Thanks!

>

> Kauffman - mother to (2 1/2) and wife to Arlin

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may contact CHARGE Syndrome Canada at 1- (families), visit

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

>

August 10, 2004

I think that sleep issues are perhaps our biggest concern right now. I've posted

previously that sometimes starts getting up as early as 1:00, and it can

go on for hours. In desperation, I phoned her Perkins psychiatrist who had us

try up to 3 mg. Ativan (I never went above 2 mg. because she was just too zonked

the following day). When that didn't work, we added Trazedone (I could have the

spelling wrong here), and it generally has been a life saver - though she hates

taking it; tastes fine to me... Last night/this morning, however, she was awake

on and off from two on (I remain in a mist about just how things happened). At

one point she again (this is a new thing) plopped in our bed. My husband and I

just needed SOME sleep. reported later that her belly hurt, and I've

suspected for ages that when she hurts, no calm-down meds in the world can help.

She was also loud and somewhat self-abusive for the first time in ages, so we'll

keep an eye on bowel and ears - her " weak points. " Martha

August 10, 2004

,

My daughter MacKenzie rarely slept for the first 4 years of life. I totally feel

for you, I've often said that those times were the worst of the CHARGE stuff.

Mackenzie had profound GI reflux, from her jeujeunum up. She would reflux bile

from her nose. We thought that her meds controlled these symptoms and her pain,

but we were wrong. During surgery (for something else), the surgeon noticed

holes in her esophagus and we realized that her reflux wasn't at all controlled.

Her high pain tolerance and probably the fact that she had never known any

different kept things at bay.

We found a different child after her Nissen. She was so happy and content and

slept for the first time in her life. Having her tonsils and adnoids removed

improved the situation even more.

I thought that her lack of sleep was maybe neurological in nature, but it was

definately unresolved and unrealized medical issues.

We still use Melatonin and I'm very pleased with the results. We increase the

dosage with her growth but have had no problems otherwise.

Jeanie Colp

mom to MacKenzie 6 CHARGE, Tyler 12, & Zachary 9

--------------------------------------------------------------------------------

August 10, 2004

,

Our daughter started to do this last week when company was here (another mom

here on the list!) and we thought it was just that, but things kept going

even after they left. She was up the other night at 11:50pm for the

day...oy... On a good note, she has started to sleep again as of last night

(knocking wood for tonight). I'm hoping this is a phase that will pass,

hopefully it will for , too. Two things we've noticed since the waking

up were that she's developed a cold and she seems constipated...could be

those things, maybe not...you never know with CHARGE...

Hope you get some sleep soon, it's rough without it...

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://ca.geocities.com/weirfamilyrogers

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Sleep Issues

There have probably been posts on this question before, but I'm fairly new

to the list so I'll ask again! Do any of your kids have sleep problems?

Our daughter , who is 2 1/2, just doesn't seem to require much sleep

(not near as much as her Mom and Dad do!). She's been getting into this

pattern lately where she wakes up in the middle of the night, and she's wide

awake for several hours. She's not fussy or anything--she's usually " wired "

and ready to play, eat, or whatever. We've tried just leaving her in her

bed since she doesn't cry or fuss, but she'll still stay awake in it for

several hours--so most usually one of us will just get up with her and let

her do her own thing for a little while until she gets tired again.

This used to happen only about once a month, but lately it's progressed to

about once a week. This past week, it happened several nights in a row.

We've asked our developmental ped about it (she's somewhat familiar with

CHARGE), and she suggested giving a small dosage of melatonin. But

she did say that kids get reliant on that for sleep, so you have to keep

increasing the dosage over time. I'm not really thrilled about giving

something that she's going to need to keep relying on for sleep. Has anyone

tried melatonin? What were your experiences? Other suggestions?

Thanks!

Kauffman - mother to (2 1/2) and wife to Arlin

Membership of this email support groups 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 CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

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

August 10, 2004

It gets easier as they get older. Patty has sleep issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter and

the rest of the family can sleep. We too had her stay in her bed when she was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those. We

know this one from experiance! Shocking.

Bonnie

August 10, 2004

It gets easier as they get older. Patty has sleep issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter and

the rest of the family can sleep. We too had her stay in her bed when she was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those. We

know this one from experiance! Shocking.

Bonnie

August 10, 2004

It gets easier as they get older. Patty has sleep issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter and

the rest of the family can sleep. We too had her stay in her bed when she was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those. We

know this one from experiance! Shocking.

Bonnie

August 10, 2004

It is true about discovering Channels that are inappropriate, at the young age

of 10 I found that out, and even though I still watch those channels and shows

today, I feel that if I was banned from watching them at such a young age I

would have appreciated the benefit of them when I was older. Here are a few

shows to watch out for:

Citytv - past 11:00 they have sex type shows.

Showcase - past 11:00 they have sex type shows.

Womans Television - past 11:00 they have sex type shows.

You should look in you t.v. guide and see what else is on in your area such as:

Red Shoe Diaries

Sex TV

Queer as Folk

Bliss

Mind of Married Men

Sex Files

Just to name a few.

Sincerely yours; Krista.

Turk22082@... wrote:

It gets easier as they get older. Patty has sleep issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter and

the rest of the family can sleep. We too had her stay in her bed when she was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those. We

know this one from experiance! Shocking.

Bonnie

August 10, 2004

It is true about discovering Channels that are inappropriate, at the young age

of 10 I found that out, and even though I still watch those channels and shows

today, I feel that if I was banned from watching them at such a young age I

would have appreciated the benefit of them when I was older. Here are a few

shows to watch out for:

Citytv - past 11:00 they have sex type shows.

Showcase - past 11:00 they have sex type shows.

Womans Television - past 11:00 they have sex type shows.

You should look in you t.v. guide and see what else is on in your area such as:

Red Shoe Diaries

Sex TV

Queer as Folk

Bliss

Mind of Married Men

Sex Files

Just to name a few.

Sincerely yours; Krista.

Turk22082@... wrote:

It gets easier as they get older. Patty has sleep issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter and

the rest of the family can sleep. We too had her stay in her bed when she was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those. We

know this one from experiance! Shocking.

Bonnie

August 11, 2004

It's reassuring to hear that Cameron isn't the only one with sleep problems. I

can leave him in his room and he'll get out of bed and play and then when he's

tired he'll get back into bed and go to sleep. As all mothers know though -- we

hear every little thing our kids do (Dad sleeps through it all.) The only

problem we have is when he decides to kick the wall and his wall that he prefers

to kick is also our bedroom wall. We've never had a sleep study done, and have

talked about medicine, but decided against it. Speaking of medicines -- does

medicine (tylendol etc) have a reverse effect on your child? If we give Cameron

any kind of medicine he'll be up for over 24 hours. One time he was up for 36

hours!!!!!!!!!!!!!!!!!!!!!!

Turk22082@... wrote:It gets easier as they get older. Patty has sleep

issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter and

the rest of the family can sleep. We too had her stay in her bed when she was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those. We

know this one from experiance! Shocking.

Bonnie

August 11, 2004

Yeah, that is pretty amazing. I haven't heard anything from her since 1994

but I knew she moved to the Bay area and since I saw sbcglobal.net I

thought, well, possibly. There are very few Holwegers I would assume.

_____

From: Holweger

Sent: Tuesday, August 10, 2004 7:07 PM

To: CHARGE

Subject: RE: Sleep Issues

It's not the same Holweger -- and I can't believe there is someone

out there with the same name!!!!!!!!!!!!!!!!!!!!!!!

Bo wrote: Holweger from UCSB?

_____

From: Holweger

Sent: Tuesday, August 10, 2004 6:26 PM

To: CHARGE

Subject: Re: Sleep Issues

It's reassuring to hear that Cameron isn't the only one with sleep problems.

I can leave him in his room and he'll get out of bed and play and then when

he's tired he'll get back into bed and go to sleep. As all mothers know

though -- we hear every little thing our kids do (Dad sleeps through it

all.) The only problem we have is when he decides to kick the wall and his

wall that he prefers to kick is also our bedroom wall. We've never had a

sleep study done, and have talked about medicine, but decided against it.

Speaking of medicines -- does medicine (tylendol etc) have a reverse effect

on your child? If we give Cameron any kind of medicine he'll be up for over

24 hours. One time he was up for 36 hours!!!!!!!!!!!!!!!!!!!!!!

Turk22082@... wrote:It gets easier as they get older. Patty has sleep

issues on and off. The

other night she was up till 3 am. It gets easier because they get quieter

and

the rest of the family can sleep. We too had her stay in her bed when she

was

little. She could look at books, play with her army men, dinasours, stuffed

animals... but noise toys were taken away if she played with them when we

slept.

Oh, and check your tv to make sure in the middle of the night there aren't

any channels they can turn to that are inappropriate. You can block those.

We

know this one from experiance! Shocking.

Bonnie

August 11, 2004