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Mathew is 6 1/2 now. He is getting out of his bed at all hours of the night.

he doesn't have a problem going to sleep but staying asleep is another story.

I know some of you out there use sleep aids. what kind and side effects have

you seen. this is been going on for four or five months now and i can't

function anymore. I need sleep!!!!! We are going to talk to the doc on monday

and i

want to go in there with some ideas. Please help if you any ideas at all.

Thanks Stacey mom of Mathew 61/2 (charger), Rylie 4 3/4. and cameron 2

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I've had sleeping problems my whole life. I don't like sleeping pills of any

kind cause the side affect it has for me is the opposite of what it's supposed

to do for you.

You need to set boundries when he's awake and everyone else is asleep, let him

know he can play quietly, if he has closed caption on the tv, he can watch tv

but without the sound, go on the computer, play games, stuff either in his room

or in a playroom til he's ready to go to bed. This way you know what he's doing

when you're asleep, and don't have to worry.

Does he snore when he sleeps, if he does then there is a possiblily that he

wakes up due to lack of oxegen, he might not realize he's doing it, but the body

and mind know it. Happens to me, when I sleep I snore, and then at some point I

stop breathing, and a part me wakes me up just enough to get me breathing again,

unknown to me that I had actually stopped breathing to begin with.

Hope this helps. Sincerely yours; Krista Bach. 28 year old CHARGEr.

uspacey@... wrote:

Mathew is 6 1/2 now. He is getting out of his bed at all hours of the

night.

he doesn't have a problem going to sleep but staying asleep is another story.

I know some of you out there use sleep aids. what kind and side effects have

you seen. this is been going on for four or five months now and i can't

function anymore. I need sleep!!!!! We are going to talk to the doc on monday

and i

want to go in there with some ideas. Please help if you any ideas at all.

Thanks Stacey mom of Mathew 61/2 (charger), Rylie 4 3/4. and cameron 2

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Stacey

is a similar age to Jess and has the similar staying asleep problem

again for about six months. Prior to that it was once or twice a week then

in the summer it was 5 times a week. We are going through a period of

experimentation with meds. Jess' doctor insisted on melatonin to start with

but this had no effect. Not surprising since it helps with getting to sleep.

For the last 3 nights Jess has had timed release melatonin. So far she slept

through the first 2 nights and last night she woke up at about 4 - so early

days. The next med is trazodone which a number of children are on. I cannot

comment on this since Jess has not had it save for a slight risk of fits

which Jess already suffers with.

Simon

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Stacey,

Our daughter is 5 and has been on Trazadone for about a year now. It's

done wonders for her sleep. Before, she was to a point where she would go to

bed for 2-3 hours, and then be up the rest of the night about 5 times a week.

The Trazadone puts her to sleep in about 30 minutes to an hour after taking it

and keeps her asleep most nights from 6-8 hours. I say " most nights " because

she still occasionally has a night where she's up. But those only happen about

once a month now, or even less. And occasionally she manages to sleep up to 10

hours, which is wonderful!!

Simon, did 's doctor mention to you a possible link between Trazadone

and increased fits/seizure activity? We've been seeing 's seizures

increase recently, and no one has mentioned to us that the Trazadone could be a

possible culprit, so I'd be interested to hear what Jess's doctor told you about

that.

, mom to (5)

http://kauffmanlak.blogspot.com/

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

Have a burning question? Go to Yahoo! Answers and get answers from real people

who know.

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,

this is an intersting question--does the Trazedone make the seizure threshold

lower? hmmm, would be interested to hear the answer to that....

pam

Re: sleeping problems

Stacey,

Our daughter is 5 and has been on Trazadone for about a year now. It's

done wonders for her sleep. Before, she was to a point where she would go to

bed for 2-3 hours, and then be up the rest of the night about 5 times a week.

The Trazadone puts her to sleep in about 30 minutes to an hour after taking it

and keeps her asleep most nights from 6-8 hours. I say " most nights " because

she still occasionally has a night where she's up. But those only happen about

once a month now, or even less. And occasionally she manages to sleep up to 10

hours, which is wonderful!!

Simon, did 's doctor mention to you a possible link between Trazadone

and increased fits/seizure activity? We've been seeing 's seizures

increase recently, and no one has mentioned to us that the Trazadone could be a

possible culprit, so I'd be interested to hear what Jess's doctor told you about

that.

, mom to (5)

http://kauffmanlak.blogspot.com/

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

Have a burning question? Go to Yahoo! Answers and get answers from real people

who know.

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As yet we have not discussed Trazadone with any doctor but we have an old

BNF (Britsh National Formulary) - this is the doctors bible to medication

and side effects etc in the UK. One of the contra indications is a slight

increased risk of seizures. We have holding off medication for seizures with

th 's neuro's agreement until we have sorted out 's sleep.

It is fair to say that the time release melatonin has not had an immediate

effect of . After 2 nights of full sleep, the third she woke up at

4.00am whilst the last 2 nights (nights 4 & 5) she woke up at midnight only

going to sleep this morning at 5.30 on me.

Simon

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I just want to suggest this again so that it does not get missed. Most of

us have given melatonin to help our child go to sleep. That works, but if

the sleep cycle problem is different (the problem is that you are at the end

of the sleep cycle instead of at the beginning), they will still wake up in

the middle of the night. So the sleep specialist who presented in Australia

this past fall said to give it when the child wakes up. This helps to reset

the clock. Time released is not so likely to do that. No guarantee that

this will work, but it is a better alternative than drugs.

Tim Hartshorne

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Tim,

This is a good suggestion and I am glad you re-posted (and reminded us). I

think this is the same information our parents here were given and for the

kids that it worked for, it was great. Martha , do you remember who

talked to you about melatonin??

Thanks, Tim.

Pam

>

>

>

>

> I just want to suggest this again so that it does not get missed. Most of

> us have given melatonin to help our child go to sleep. That works, but if

> the sleep cycle problem is different (the problem is that you are at the end

> of the sleep cycle instead of at the beginning), they will still wake up in

> the middle of the night. So the sleep specialist who presented in Australia

> this past fall said to give it when the child wakes up. This helps to reset

> the clock. Time released is not so likely to do that. No guarantee that

> this will work, but it is a better alternative than drugs.

>

> Tim Hartshorne

>

>

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Tim

Thanks for emphasising this. I seem to recall when this matter was discussed

earlier in the year this was not your view. It is useful to know that this

recommendation came from the sleep specialist at the Australian conference.

Hopefully I shall get the papers from this conference as I did for the last

one.

I tried this with on one occasion when she woke up while she was

just on the ordinary melatonin. She went to sleep after a couple of hours,

but she is inconsistent with how long she is awake. I've a feeling that she

will end up on something like Trazadone but if she sleeps she can only

benefit. She survives school incredibly well but falls apart often after

dinner. This does have an impact on her learning since we are unable to do

any schoolwork or CI work.

Simon

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Simon,

That info on the possible side effects of Trazadone increasing seizure

activity is interesting. I'll be sure to ask 's neurologist about that the

next time we see him. Now it's got me wondering if there's a link there with

.

Sorry the melatonin doesn't seem to be working for Jess. It never did for

, either. And even with the Trazadone, she still occasionally pulls some

all-nighters. Last Sunday, she skipped her afternoon nap and went to be at

8:00. She was up again at 10:30, and it was like she had slept a full night and

was ready to go--she was wide awake and in a great mood until 6:30 a.m. Monday

morning! I empathize with you totally.

, mom to (5)

http://kauffmanlak.blogspot.com/

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

Bored stiff? Loosen up...

Download and play hundreds of games for free on Yahoo! Games.

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We have a few issues.

Getting to sleep - It normally takes Austin (CHARGE - 10) a couple hours to get

to sleep. Does anyone know the dose of Melatonin we should give him? he is

about 73 pounds. Melatonin vs. time release Melatonin? Once he gets to sleep

he is fine.

Behavior issues - He can't stay on task. Has a very had time with Math and

Money. Has habits( I call them habits, not sure what to call it) picking at his

fingers, sticking out his tongue, bunny ears, etc... he normally does one at a

time, gets over it, and then starts with another. Lately he is doing many at

the same time. Gets wild, over stimulated. We had him evaluated for ADD. The

Dr. said he did not have that. We are thinking maybe OCD or anxiety? We are

having a really hard time finding a good Dr. to help us. We are in Nebraska.

Does anyone have any suggestions? Is there somewhere someone knows about CHARGE

that we could have him evaluated?

Thank you.

Lynda

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Lynda,

Kennedy is nine and also takes a long time most nights to get to sleep. We

don't have her on anything as she just stays in bed and sings/laughs/talks

until she goes to sleep. She doesn't 'appear' to be sleepy/tired the next

day (or EVER for that matter...:) I'm sure someone at the pharmacy could

let you know about the Melatonin dose. There's a page all about it here:

http://www.melatonin.com/melatonin-faq.php#VALUE but I'd discuss it with a

professional in addition to reading something on the Internet about it.

As for the picking fingers, Kennedy also does this A LOT; she is obsessed

with them at times. We just remind her by asking her what she's picking

at. She usually says " they're dirty " , but they're not. She is on

methylphenidate because she is very hyper (but not really unfocused), I'm

not sure if this helps with the finger picking behaviors or not (I can't

imagine it really does because she's at her fingers a lot, particularly if

not alot going on).

Good luck finding some professionals, I'm in Canada so not much help

there...just wanted you to know you weren't alone!

Hugs,

www.chargesyndrome.info

>

> We have a few issues.

>

> Getting to sleep - It normally takes Austin (CHARGE - 10) a couple hours

> to get to sleep. Does anyone know the dose of Melatonin we should give him?

> he is about 73 pounds. Melatonin vs. time release Melatonin? Once he gets to

> sleep he is fine.

>

> Behavior issues - He can't stay on task. Has a very had time with Math and

> Money. Has habits( I call them habits, not sure what to call it) picking at

> his fingers, sticking out his tongue, bunny ears, etc... he normally does

> one at a time, gets over it, and then starts with another. Lately he is

> doing many at the same time. Gets wild, over stimulated. We had him

> evaluated for ADD. The Dr. said he did not have that. We are thinking maybe

> OCD or anxiety? We are having a really hard time finding a good Dr. to help

> us. We are in Nebraska. Does anyone have any suggestions? Is there somewhere

> someone knows about CHARGE that we could have him evaluated?

>

> Thank you.

>

> Lynda

>

>

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Simon & Flo

This sounds like hard work for you guys, last night Amelie was awake all

night but it was a secretion issue,

and the sats monitor was going crazy, It was such hard work, I was on an

early shift on the labour ward and never got to sleep!!

So god only knows what its like for you guys most nights...sympathy +++++

Love Les x

>

>

>

> As yet we have not discussed Trazadone with any doctor but we have an old

> BNF (Britsh National Formulary) - this is the doctors bible to medication

> and side effects etc in the UK. One of the contra indications is a slight

> increased risk of seizures. We have holding off medication for seizures

> with

> th 's neuro's agreement until we have sorted out 's sleep.

>

> It is fair to say that the time release melatonin has not had an immediate

> effect of . After 2 nights of full sleep, the third she woke up at

> 4.00am whilst the last 2 nights (nights 4 & 5) she woke up at midnight

> only

> going to sleep this morning at 5.30 on me.

>

> Simon

>

>

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Lynda,

at the risk of giving you one more thing to worry about, have you thought about

Austin's " habits " as tics? The sticking out his tongue and the bunny ears

sounds like tic behavior to me and might be worth investigating. Perhaps the

picking at his fingers is an anxiety thing.

I can't offer much in the way of melatonin--I am sure others will chime in.

Please keep us posted as to what you find out.

pam

Re: sleeping problems

We have a few issues.

Getting to sleep - It normally takes Austin (CHARGE - 10) a couple hours to get

to sleep. Does anyone know the dose of Melatonin we should give him? he is

about 73 pounds. Melatonin vs. time release Melatonin? Once he gets to sleep

he is fine.

Behavior issues - He can't stay on task. Has a very had time with Math and

Money. Has habits( I call them habits, not sure what to call it) picking at his

fingers, sticking out his tongue, bunny ears, etc... he normally does one at a

time, gets over it, and then starts with another. Lately he is doing many at

the same time. Gets wild, over stimulated. We had him evaluated for ADD. The

Dr. said he did not have that. We are thinking maybe OCD or anxiety? We are

having a really hard time finding a good Dr. to help us. We are in Nebraska.

Does anyone have any suggestions? Is there somewhere someone knows about CHARGE

that we could have him evaluated?

Thank you.

Lynda

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  • 2 weeks later...

For us the biggest factor in improving Dylan's sleep was to create a

way that he could be safely contained, so we did not need to interact

with him while awake. We listened from the other room, but he learned

to regulate his system and get back to sleep. Plus the physical

boundaries of the bed helped with the proprioceptive problem. Before

even going in to check on him added more input to an already

overaroused system and it could go on for hours. I know 2 families

that had special beds made for their children and others that have

purchased medical beds.

--

Kim

Certified HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

and wife to Roy who makes all things possible in our lives.

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Hi Kim

I agree with both your emails. has done HANDLE with Cathy a few years

ago and we do practice it sometimes although not often enough. You do

probably know that Judith Bluestone (the founder of HANDLE) was CHARGE

herself . I say *was* as she has seemed to have corrected all

her CHARGE issues and is now leading an extraordinary life.

The safe bed scenario makes a lot of sense to me and will seriously consider

this as an option and we will endeavour to practice HANDLE on more

frequently. We also do sensory integration.

Thank you for your post.

, 's daddy

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,

I hope the safe bed idea is doable. It made such a difference for us,

although it took us several years to figure out the logistics to make

it happen.

I think the trick for HANDLE is that it is a neurodevelopmental

appraoch, so as major development occurs in kids as complex as ours, I

feel it logical that they need a " tune up " . We certainly found this

to be true for Dylan. He made such improvements with his initial

program, then life continued on and we would do a few activities as he

seemed to need them. Then this school year, he began having more

frantic states, less stability walking and so on. I put his HANDLE

program back into a routine thing, and it has helped. It has made a

huge difference for him at school. Dylan is pretty clear about which

activities he needs when, even though he does not have formal

language.

--

Kim

Certified HANDLE Screener and Intern

Mom to Dylan 10 CHaRGE, Kayla 16, Tyler 18

and wife to Roy who makes all things possible in our lives.

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