RE: Gabe's EEG

January 9, 2003

> It is an awful experience and we never went back for another one.

> I hope Gabe is doing better now. I know was upset for a

> while afterwards.

Gabe was fine as soon as she let him up. She let him pick out a toy from a

drawer & he got one he's been wanting for awhile - they have it in the

waiting room at speech & he loves the thing.

He's still up.

I don't know if we'll do another one or not. I will have to talk carefully

with the doctor about what we hope to gain from one and how likely it is

that the test could be done successfully.

Thanks much.

-Sara.

January 9, 2003

> It is an awful experience and we never went back for another one.

> I hope Gabe is doing better now. I know was upset for a

> while afterwards.

Gabe was fine as soon as she let him up. She let him pick out a toy from a

drawer & he got one he's been wanting for awhile - they have it in the

waiting room at speech & he loves the thing.

He's still up.

I don't know if we'll do another one or not. I will have to talk carefully

with the doctor about what we hope to gain from one and how likely it is

that the test could be done successfully.

Thanks much.

-Sara.

January 9, 2003

GGGGRRRRRR! I HATE stupid people!!! I can't believe that ANY kid, NT or

autistic actually does THIS! 's was sedated, and believe me, if it

hadn't been, there's NO way we would have tried it (if we'd known ahead of

time what they were going to try). We get the results today.

Sorry Gabe had to go through all that, and you too!

ellen

Gabe's EEG

Well that was a complete, utter, total, absolute waste of time and misery.

I wish they had told us what was supposed to happen beforehand, as I could

then have laughed at them in advance.

We were to wake him at 5 and keep him awake. As you may already know he

got

up at 2, and we did indeed keep him awake; rather, he kept us

awake...Apparently we were supposed to go in, strap him down to a board,

glue a bunch of things to his head, and then watch him go to sleep. She

said usually they record for 30 minutes - 15 awake and 15 asleep.

Do you ever get that feeling that someone in the picture is absolutely

insane, but you're not quite sure if it's you or the other person?

You want to tie him down, glue stuff to his head, and then you fully

expect

him to just fall asleep within 15 minutes???

So he laid there and screamed for an hour. I was not allowed to touch him

or even stand next to him as they were video taping it. I told her

several

times he was not going to go to sleep, and indeed he did not. But what

the

fuck do I know, I'm just his mother.

She said the sleep portion of the test is very important and they will

probably want us to do it again. What, exactly, do they think is going to

change? We could keep him up all night long and he still would not fall

asleep that way.

Not a happy mommy.

-Sara.

January 9, 2003

Oh brother Sara, this is what happened when Jake had his EEG too. I

should have wrote in to you about it. I didn't even think about it. It

is so ridiculous that they think our kids are going to go to sleep with

that cap on and the computer screen lit up and all that. I don't think

I could do it!

Sorry! I remember thinking that I wish to hell they would have

explained what was supposed to happen and what it would be like when we

were scheduled for it. I didn't understand what the sleep deprivation

was for, but if I had known that it was because he was supposed to fall

asleep under those circumstances, I could have skipped the whole

appointment. Our neurologist even told us that Jake could " play with

toys " while the EEG was being performed. The person who actually did

the EEG couldn't believe he had told us that.

~ Karin

January 9, 2003

Oh brother Sara, this is what happened when Jake had his EEG too. I

should have wrote in to you about it. I didn't even think about it. It

is so ridiculous that they think our kids are going to go to sleep with

that cap on and the computer screen lit up and all that. I don't think

I could do it!

Sorry! I remember thinking that I wish to hell they would have

explained what was supposed to happen and what it would be like when we

were scheduled for it. I didn't understand what the sleep deprivation

was for, but if I had known that it was because he was supposed to fall

asleep under those circumstances, I could have skipped the whole

appointment. Our neurologist even told us that Jake could " play with

toys " while the EEG was being performed. The person who actually did

the EEG couldn't believe he had told us that.

~ Karin

January 9, 2003

Oh brother Sara, this is what happened when Jake had his EEG too. I

should have wrote in to you about it. I didn't even think about it. It

is so ridiculous that they think our kids are going to go to sleep with

that cap on and the computer screen lit up and all that. I don't think

I could do it!

Sorry! I remember thinking that I wish to hell they would have

explained what was supposed to happen and what it would be like when we

were scheduled for it. I didn't understand what the sleep deprivation

was for, but if I had known that it was because he was supposed to fall

asleep under those circumstances, I could have skipped the whole

appointment. Our neurologist even told us that Jake could " play with

toys " while the EEG was being performed. The person who actually did

the EEG couldn't believe he had told us that.

~ Karin

January 9, 2003

sara, i'm sorry. i wish i had realized he wouldn't be sedated. kailey went

through several of these when she was younger and it took at least 2 different

failures for the neuro to finally agree to sedation. the point of them falling

asleep on their own is so that they will have a natural sleep pattern, rather

than a sedated one. makes sense, but...

if your dr insists on doing another EEG, you make sure you refuse to do it

unless gabe's sedated.

" Something important to remember...we'll always be who we are. " - Mr.

January 9, 2003

Sheesh. People are idiots. Could they possibly let you

get him to sleep first, and then glue all the things

to his head? Is he a heavy sleeper? When is

asleep, you run a truck through his room and he

wouldn't wake up.

Hope all this gets straightened out soon.

Tuna

>>>>>>>>>>>>>>>>>>>

Apparently we were supposed to go in, strap him down

to a board, glue a bunch of things to his head, and

then watch him go to sleep.

>>>>>>>>>>>>>

=====

You can learn many things from children.

How much patience you have, for instance.

- lin P.

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

January 9, 2003

Sheesh. People are idiots. Could they possibly let you

get him to sleep first, and then glue all the things

to his head? Is he a heavy sleeper? When is

asleep, you run a truck through his room and he

wouldn't wake up.

Hope all this gets straightened out soon.

Tuna

>>>>>>>>>>>>>>>>>>>

Apparently we were supposed to go in, strap him down

to a board, glue a bunch of things to his head, and

then watch him go to sleep.

>>>>>>>>>>>>>

=====

You can learn many things from children.

How much patience you have, for instance.

- lin P.

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

January 9, 2003

Sheesh. People are idiots. Could they possibly let you

get him to sleep first, and then glue all the things

to his head? Is he a heavy sleeper? When is

asleep, you run a truck through his room and he

wouldn't wake up.

Hope all this gets straightened out soon.

Tuna

>>>>>>>>>>>>>>>>>>>

Apparently we were supposed to go in, strap him down

to a board, glue a bunch of things to his head, and

then watch him go to sleep.

>>>>>>>>>>>>>

=====

You can learn many things from children.

How much patience you have, for instance.

- lin P.

______________________________________________________________________

Post your free ad now! http://personals.yahoo.ca

January 9, 2003

Why am I suddenly glad I blew off the dr about having one done on Savannah? The

main reason I blew of the neuro was that he told me flat out that I was waisting

his time, that I had no business being in his office. Then when I got his

reports on all the kids I decided that he was an asshole who should not be

allowed to be a dr, let alone care for a hamster.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: Gabe's EEG

Oh brother Sara, this is what happened when Jake had his EEG too. I

should have wrote in to you about it. I didn't even think about it. It

is so ridiculous that they think our kids are going to go to sleep with

that cap on and the computer screen lit up and all that. I don't think

I could do it!

Sorry! I remember thinking that I wish to hell they would have

explained what was supposed to happen and what it would be like when we

were scheduled for it. I didn't understand what the sleep deprivation

was for, but if I had known that it was because he was supposed to fall

asleep under those circumstances, I could have skipped the whole

appointment. Our neurologist even told us that Jake could " play with

toys " while the EEG was being performed. The person who actually did

the EEG couldn't believe he had told us that.

~ Karin

January 9, 2003

Why am I suddenly glad I blew off the dr about having one done on Savannah? The

main reason I blew of the neuro was that he told me flat out that I was waisting

his time, that I had no business being in his office. Then when I got his

reports on all the kids I decided that he was an asshole who should not be

allowed to be a dr, let alone care for a hamster.

Georga Hackworth

www.ubah.com/F1549 Enter to win $50 in FREE books!

Re: Gabe's EEG

Oh brother Sara, this is what happened when Jake had his EEG too. I

should have wrote in to you about it. I didn't even think about it. It

is so ridiculous that they think our kids are going to go to sleep with

that cap on and the computer screen lit up and all that. I don't think

I could do it!

Sorry! I remember thinking that I wish to hell they would have

explained what was supposed to happen and what it would be like when we

were scheduled for it. I didn't understand what the sleep deprivation

was for, but if I had known that it was because he was supposed to fall

asleep under those circumstances, I could have skipped the whole

appointment. Our neurologist even told us that Jake could " play with

toys " while the EEG was being performed. The person who actually did

the EEG couldn't believe he had told us that.

~ Karin

January 9, 2003

They used to always sedate the boys. Then something happened to a child and

they don't do it anymore unless the kid is in the hospital and being

monitored closely.

Sorry the day was a bust and you got no answers.

Sue

January 9, 2003

They used to always sedate the boys. Then something happened to a child and

they don't do it anymore unless the kid is in the hospital and being

monitored closely.

Sorry the day was a bust and you got no answers.

Sue

January 9, 2003

They used to always sedate the boys. Then something happened to a child and

they don't do it anymore unless the kid is in the hospital and being

monitored closely.

Sorry the day was a bust and you got no answers.

Sue

January 9, 2003

I don’t know what to say except I am with you.

Cecilia, from Peru (mom to Dessiree 3½ yo, no dx yet some autistic

traits)

Lovely husband

-----Mensaje original-----

De: The Byks

Enviado el: Jueves, 09 de Enero de 2003 10:41 a.m.

Para: parenting_autism

Asunto: Gabe's EEG

Well that was a complete, utter, total, absolute waste of time and

misery.

I wish they had told us what was supposed to happen beforehand, as I

could

then have laughed at them in advance.

We were to wake him at 5 and keep him awake. As you may already know he

got

up at 2, and we did indeed keep him awake; rather, he kept us

awake...Apparently we were supposed to go in, strap him down to a board,

glue a bunch of things to his head, and then watch him go to sleep. She

said usually they record for 30 minutes - 15 awake and 15 asleep.

Do you ever get that feeling that someone in the picture is absolutely

insane, but you're not quite sure if it's you or the other person?

You want to tie him down, glue stuff to his head, and then you fully

expect

him to just fall asleep within 15 minutes???

So he laid there and screamed for an hour. I was not allowed to touch

him

or even stand next to him as they were video taping it. I told her

several

times he was not going to go to sleep, and indeed he did not. But what

the

fuck do I know, I'm just his mother.

She said the sleep portion of the test is very important and they will

probably want us to do it again. What, exactly, do they think is going

to

change? We could keep him up all night long and he still would not fall

asleep that way.

Not a happy mommy.

-Sara.

January 9, 2003

I don’t know what to say except I am with you.

Cecilia, from Peru (mom to Dessiree 3½ yo, no dx yet some autistic

traits)

Lovely husband

-----Mensaje original-----

De: The Byks

Enviado el: Jueves, 09 de Enero de 2003 10:41 a.m.

Para: parenting_autism

Asunto: Gabe's EEG

Well that was a complete, utter, total, absolute waste of time and

misery.

I wish they had told us what was supposed to happen beforehand, as I

could

then have laughed at them in advance.

We were to wake him at 5 and keep him awake. As you may already know he

got

up at 2, and we did indeed keep him awake; rather, he kept us

awake...Apparently we were supposed to go in, strap him down to a board,

glue a bunch of things to his head, and then watch him go to sleep. She

said usually they record for 30 minutes - 15 awake and 15 asleep.

Do you ever get that feeling that someone in the picture is absolutely

insane, but you're not quite sure if it's you or the other person?

You want to tie him down, glue stuff to his head, and then you fully

expect

him to just fall asleep within 15 minutes???

So he laid there and screamed for an hour. I was not allowed to touch

him

or even stand next to him as they were video taping it. I told her

several

times he was not going to go to sleep, and indeed he did not. But what

the

fuck do I know, I'm just his mother.

She said the sleep portion of the test is very important and they will

probably want us to do it again. What, exactly, do they think is going

to

change? We could keep him up all night long and he still would not fall

asleep that way.

Not a happy mommy.

-Sara.

January 9, 2003

I don’t know what to say except I am with you.

Cecilia, from Peru (mom to Dessiree 3½ yo, no dx yet some autistic

traits)

Lovely husband

-----Mensaje original-----

De: The Byks

Enviado el: Jueves, 09 de Enero de 2003 10:41 a.m.

Para: parenting_autism

Asunto: Gabe's EEG

Well that was a complete, utter, total, absolute waste of time and

misery.

I wish they had told us what was supposed to happen beforehand, as I

could

then have laughed at them in advance.

We were to wake him at 5 and keep him awake. As you may already know he

got

up at 2, and we did indeed keep him awake; rather, he kept us

awake...Apparently we were supposed to go in, strap him down to a board,

glue a bunch of things to his head, and then watch him go to sleep. She

said usually they record for 30 minutes - 15 awake and 15 asleep.

Do you ever get that feeling that someone in the picture is absolutely

insane, but you're not quite sure if it's you or the other person?

You want to tie him down, glue stuff to his head, and then you fully

expect

him to just fall asleep within 15 minutes???

So he laid there and screamed for an hour. I was not allowed to touch

him

or even stand next to him as they were video taping it. I told her

several

times he was not going to go to sleep, and indeed he did not. But what

the

fuck do I know, I'm just his mother.

She said the sleep portion of the test is very important and they will

probably want us to do it again. What, exactly, do they think is going

to

change? We could keep him up all night long and he still would not fall

asleep that way.

Not a happy mommy.

-Sara.

January 9, 2003

> I remember thinking that I wish to hell they would have

> explained what was supposed to happen and what it would be like when we

> were scheduled for it. I didn't understand what the sleep deprivation

> was for, but if I had known that it was because he was supposed to fall

> asleep under those circumstances, I could have skipped the whole

> appointment.

That pretty well sums up my feelings, Karin.

It is nice to know I'm not the insane one in the picture. =)

I think I will be having a nice long chat with my ped about whether we need

to try again, and if so how to go about it. I HOPE it is obvious that after

only 3 hours of sleep the night before, and being left to cry for an hour in

a dark room with soft music playing, that he is NOT going to go to sleep

under those circumstances. (Which, as you said, I could have told them to

begin with. Do kids REALLY do that??? The nurse seemed to fully expect him

to...um, okay...back to that whole insanity thing again.)

He did surprisingly well with leaving the wires alone - she let him have one

hand out so he could hold on to Percy (the the Tank Engine car he

happened to grab this morning - he ALWAYS has one or two) and it was not

until probably the last 15 minutes that she had to strap that hand down too.

So I am wondering if they could set him up and then let me

hold/rock/nurse/sling him to sleep before they started the test. If they

need that transition phase can't they get it from when he wakes up instead

of when he goes to sleep? I don't know.

But right now I am questioning the purpose of the test to begin with so...

-Sara.

January 9, 2003

> I remember thinking that I wish to hell they would have

> explained what was supposed to happen and what it would be like when we

> were scheduled for it. I didn't understand what the sleep deprivation

> was for, but if I had known that it was because he was supposed to fall

> asleep under those circumstances, I could have skipped the whole

> appointment.

That pretty well sums up my feelings, Karin.

It is nice to know I'm not the insane one in the picture. =)

I think I will be having a nice long chat with my ped about whether we need

to try again, and if so how to go about it. I HOPE it is obvious that after

only 3 hours of sleep the night before, and being left to cry for an hour in

a dark room with soft music playing, that he is NOT going to go to sleep

under those circumstances. (Which, as you said, I could have told them to

begin with. Do kids REALLY do that??? The nurse seemed to fully expect him

to...um, okay...back to that whole insanity thing again.)

He did surprisingly well with leaving the wires alone - she let him have one

hand out so he could hold on to Percy (the the Tank Engine car he

happened to grab this morning - he ALWAYS has one or two) and it was not

until probably the last 15 minutes that she had to strap that hand down too.

So I am wondering if they could set him up and then let me

hold/rock/nurse/sling him to sleep before they started the test. If they

need that transition phase can't they get it from when he wakes up instead

of when he goes to sleep? I don't know.

But right now I am questioning the purpose of the test to begin with so...

-Sara.

January 9, 2003

> I remember thinking that I wish to hell they would have

> explained what was supposed to happen and what it would be like when we

> were scheduled for it. I didn't understand what the sleep deprivation

> was for, but if I had known that it was because he was supposed to fall

> asleep under those circumstances, I could have skipped the whole

> appointment.

That pretty well sums up my feelings, Karin.

It is nice to know I'm not the insane one in the picture. =)

I think I will be having a nice long chat with my ped about whether we need

to try again, and if so how to go about it. I HOPE it is obvious that after

only 3 hours of sleep the night before, and being left to cry for an hour in

a dark room with soft music playing, that he is NOT going to go to sleep

under those circumstances. (Which, as you said, I could have told them to

begin with. Do kids REALLY do that??? The nurse seemed to fully expect him

to...um, okay...back to that whole insanity thing again.)

He did surprisingly well with leaving the wires alone - she let him have one

hand out so he could hold on to Percy (the the Tank Engine car he

happened to grab this morning - he ALWAYS has one or two) and it was not

until probably the last 15 minutes that she had to strap that hand down too.

So I am wondering if they could set him up and then let me

hold/rock/nurse/sling him to sleep before they started the test. If they

need that transition phase can't they get it from when he wakes up instead

of when he goes to sleep? I don't know.

But right now I am questioning the purpose of the test to begin with so...

-Sara.

January 9, 2003

The only reason we're doing it is he had 2 seizures. did not have

an MRI or EEG or anything but some blood work done for his autism dx. The

blood work was to rule out metabolic disorders and Fragile X.

It took 4 or 5 adults to hold down, plus another one to actually

draw the blood. There is NO WAY we could have gotten an EEG done without

sedation from the very start. Hell, she had to stop and re-do the velcro

several times for GABE and he is NOTHING like in strength or

tenacity. And she was commenting on HIM. Holy crap. I should take

in there just for fun.

-Sara.

who rambles a lto when she's tired

> Why am I suddenly glad I blew off the dr about having one done on

> Savannah? The main reason I blew of the neuro was that he told

January 9, 2003