neurology

[Guest guest]

Hi-

We had Aubrie's first visit with the neurologist yesterday. This was at the

recommendation of the pediatric neurodevelopmental psych who evaluated her

last spring. She is not having blatant seizures - not even momentary lapses

- but we want to rule out any electrical imbalances or misfires. He ordered

a 1 hr EEG. Here's what's got me baffled. She has to be sleep-deprived the

night before - no more than 4 hours of sleep. In order to do that, I have

to be sleep-deprived as well. So how to we get to the drs office 2.5 hrs

away?? She'll surely fall asleep on the ride - and I might too! I'm

guessing I need to have DJ take a day of work. Have others done this? And

how?

As far as chemical imbalances causing attention difficulties, he said he'd

want to see environmental and instructional changes before meds. Since we

just switched schools, we're to watch and see how things are in this new

setting. It makes sense, but I also don't want another year of difficulty

before we taking any steps to help. But this time, we've got the process

going so we could get in and get started more quickly, I hope, if the time

comes.

For OCD, perseveration, etc, that's psychology/psychiatry. How do we know

when it's appropriate to intervene and when we let it alone? How did you

guys decide?

She is getting really wacky with her imaginary friends. She talks to them

constantly - in the bathroom, all over the house, at the store. any where.

She even brought them to school this week. She knows that's not ok and has

always managed to keep them away from school. But she said she's bored

since she can't communicate with her classmates yet. I get that and I know

it'll be some time before she's signing well enough to participate in their

conversations. I've emailed school to see if there's someone available who

can facilitate that on the playground. The hard part is in the classroom

when the teacher's not looking and they're all talking.

A little boy in our town was killed on his bike this weekend. He was

buddies with our neighbor kid. So Aubrie told him that it was ok because he

could be his imaginary friend now. She is trying so hard to understand

death. But she really doesn't get it. I know it's hard for kids her age.

But, I mean, she really doesn't get it. She said his mom might be glad

because she probably didn't want him to grow up anyway. I always tell her

to just stay a little girl forever cuz I love her like this and what will I

do when I have no more little girl?? So we had to go into that whole

explanation. She's so incredibly literal. But, yet, she has a funny sense

of humor. But you know, her sense of humor is literal too - like puns and

misuse of words, that kind of thing. You know how you tell a kid they are

so yummy you could eat them up? She really thinks I'll eat her. When I

tell her she's so yummy, she says, " But you won't really eat me, will you? "

I'm just baffled sometimes by how her little brain works. She's so smart

but so. I don't know. different. It's adorable now. But it won't be

adorable when she's an adult trying to hold down a job or understand complex

ideas at school. And it's not just all cuz she's a little kid. She's in

3rd grade. Third graders were over this stuff ages ago. Some never were

into it quite as much as she is. It's got a whole different quality from

typical kids' thinking. Anyone have insights or thoughts?

This isn't even the OCD stuff. That's another story. She doesn't have one

thing that she obsesses about. It can be anything. We definitely have a

routine. Sometimes she can waiver from the routine but sometimes it's a

real struggle. And there are repetitive things - like always before a dr

appt, " And will we have to wait our turn? " and needing to know people's

names all the time. She asks really weird questions about stuff. Oh - it's

puzzling.

Michele W

[Guest guest]

Michele,

and Aubrie are so similar... has an imaginary friend named Lalex from

Mazurka...He talks to him all the time on his Foohy Phone ( the pink erasers we

used in school)...He cannot talk to me because he is busy doing

business....Lalex is the child who is not a good listener and is often in

trouble and is talking him through it....'s pediatrician is more ready

to believe that is an only child and needs a playmate not anything CHARGE

related and has encouraged me to celebrate the " normalness " of imaginary

friends...I asked at school about imaginary friends and they told me the

children usually forget about them around the end of third grade or 10 years

old...So is this dr worried about Aubrie still having theses conversations?

has also told me he met all our relatives that have passed in Heaven....He

said he has had great conversations with my grandfather before he was born..

I know it is not funny but can you tell me why doctors don't realize that our

kids if they need to be sleep deprived that someone has to be up with them?

Making us sleep deprived?...I really think doctors live in a bubble....and the

world only exists there...they forget that we all have lives

has not had this test ....He has had several 24 hours monitor

tests...they were inconvenient having to be early (5 am) to put it on and then

removed the following morning...45 min drive one way...I asked for a 4 pm

appointment to put it on...it wasn't convenient for the tech...

Hope this test brings answers.....

Ellen mom to soon to be 9

[Guest guest]

Michele,

tim is very literal also---I --we can be quite sarcastic sometimes and hw just

doesn't get it--although he is catching on --sometimes. nver done the test you

are speaking of--but doesn't seem like it would be easy to do---especially with

a drive. Tim doesn't have imaginary friends--but, pretends all the time--willl

call my dad and play pretend ---for as long as my ddad will stay on the phone.

he is getting better about " playing " but still not into what a regualr 11 year

old is into.

guess that is a good thing in a way, but will soon be lagging behind peers in a

big way!!! at times keegan 8 and liam almost 6 are more advanced in everyway

than he is. they get frustrated.

Tim had denstist appt. today--took his toothpaste so they could brush his

teeth--clean them--tried x rays--not too good. teeth look good on surface ---no

ortho yet--not that he would stand much.

have audiologist tomorrow--hoping we can get new aides--since the insurance will

pay for both of them --well $500 per ear--one is a year newer than the other and

they will only pay every 3 years!!! pooor kid has saucers on his ears!!!

pat went back to work yesterday working 6 /12 hour days this week and 10 hour

days next week--then who knows. keegan starts 1 1/2 hour soccer practices 2x

week today--got rained out tues. is actaully cool here today high 60's--went to

the attic to organize--will take forever....but want to get keegan's room up

there, won't be fancy but will be his own space. am soooooooooooooo ready for

school to start--they are getting bored and I am getting short on patience!!!

hope things are going well for Aubrie at school--she will pick up on the signs

so fast---Tim did!!! I am soooooooooo behind him it's not funny!!

neurology

Hi-

We had Aubrie's first visit with the neurologist yesterday. This was at the

recommendation of the pediatric neurodevelopmental psych who evaluated her

last spring. She is not having blatant seizures - not even momentary lapses

- but we want to rule out any electrical imbalances or misfires. He ordered

a 1 hr EEG. Here's what's got me baffled. She has to be sleep-deprived the

night before - no more than 4 hours of sleep. In order to do that, I have

to be sleep-deprived as well. So how to we get to the drs office 2.5 hrs

away?? She'll surely fall asleep on the ride - and I might too! I'm

guessing I need to have DJ take a day of work. Have others done this? And

how?

As far as chemical imbalances causing attention difficulties, he said he'd

want to see environmental and instructional changes before meds. Since we

just switched schools, we're to watch and see how things are in this new

setting. It makes sense, but I also don't want another year of difficulty

before we taking any steps to help. But this time, we've got the process

going so we could get in and get started more quickly, I hope, if the time

comes.

For OCD, perseveration, etc, that's psychology/psychiatry. How do we know

when it's appropriate to intervene and when we let it alone? How did you

guys decide?

She is getting really wacky with her imaginary friends. She talks to them

constantly - in the bathroom, all over the house, at the store. any where.

She even brought them to school this week. She knows that's not ok and has

always managed to keep them away from school. But she said she's bored

since she can't communicate with her classmates yet. I get that and I know

it'll be some time before she's signing well enough to participate in their

conversations. I've emailed school to see if there's someone available who

can facilitate that on the playground. The hard part is in the classroom

when the teacher's not looking and they're all talking.

A little boy in our town was killed on his bike this weekend. He was

buddies with our neighbor kid. So Aubrie told him that it was ok because he

could be his imaginary friend now. She is trying so hard to understand

death. But she really doesn't get it. I know it's hard for kids her age.

But, I mean, she really doesn't get it. She said his mom might be glad

because she probably didn't want him to grow up anyway. I always tell her

to just stay a little girl forever cuz I love her like this and what will I

do when I have no more little girl?? So we had to go into that whole

explanation. She's so incredibly literal. But, yet, she has a funny sense

of humor. But you know, her sense of humor is literal too - like puns and

misuse of words, that kind of thing. You know how you tell a kid they are

so yummy you could eat them up? She really thinks I'll eat her. When I

tell her she's so yummy, she says, " But you won't really eat me, will you? "

I'm just baffled sometimes by how her little brain works. She's so smart

but so. I don't know. different. It's adorable now. But it won't be

adorable when she's an adult trying to hold down a job or understand complex

ideas at school. And it's not just all cuz she's a little kid. She's in

3rd grade. Third graders were over this stuff ages ago. Some never were

into it quite as much as she is. It's got a whole different quality from

typical kids' thinking. Anyone have insights or thoughts?

This isn't even the OCD stuff. That's another story. She doesn't have one

thing that she obsesses about. It can be anything. We definitely have a

routine. Sometimes she can waiver from the routine but sometimes it's a

real struggle. And there are repetitive things - like always before a dr

appt, " And will we have to wait our turn? " and needing to know people's

names all the time. She asks really weird questions about stuff. Oh - it's

puzzling.

Michele W

[Guest guest]

My secret imaginary friend and i decided that when i got my cat, part of her

spirit would be in the cat. lol. Funny thing is, my imaginary friend from

when i was little was . I named my cat Aeryn Sun (pronounced the same

as erin) after a Farscape character

I stoped talking out loud to my imaginary friend years ago but didnt stop me

from having conversations in my head with her lol. Depends how old your guy

is, talk to him about having his friend and him have non verble

conversations. That way he wont get teased for " talking to himself " . Thats

what i ended up doing. I think as i got older my imaginary friend as you

could say became a form of what people call a conscious (you know that voice

of reason in your head that noone ever listens to?)

I did develop wich i think was part of a bad thing from my past was an angry

mean voice in my head but that was quite different then an imaginary friend.

Hope something i wrote was usefull.

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

[Guest guest]

Michele,

I can only respond to the OCD part of your post. I don't know when it

started with ; there were probably hints of it early. She was still in

school in Springfield, a new school, when things got so bad we KNEW we

had to do something. Luckily, I'd heard Laurie Denno's presentation at a

Washington conference and just called her. She even put me in touch

with Perkins' Health Services, and I took the information to K's ped. We

started her on Zoloft (don't remember the initial or even final dosage). I

kept good notes daily but don't have them in front of me. I do recall one

hellish night when I wrote that she was totally off the wall --- so hyper I

was ready to quit. My psychiatrist brother talked me into giving Zoloft a

longer chance, and he was right. Eventually I remember writing that it was

" as though someone had turned on a lightbulb " .

Why did we decide on medication? would have to get in and out of

the tub many times. The lights had to be either on or off (depending on the

moment's OCD turn, I guess). When driving home from school, if I took

an unusual turn (e.g., traffic was too heavy to go the usual way),

would bang her head against the car window and anything else in sight.

Same thing if I went to her favorite after school snack place by anything

other than one route. There was lots more, blissfully out of my mind. I

know that there were rituals in the car that including touching me a certain

way as I drove. Oh, it was bad and probably dangerous.

Remember, she had changed schools, had a teacher I later learned

had VERY severe OCD herself, we were already in litigation, and I'm

certain that she sensed the horrendous stress.

Now, the story doesn't end with Zoloft. Again, I don't remember the exact

history (and the family historian, Andy, isn't yet home to correct me),

though perhaps Pam can help if her memory is better than mine. At some

point after K. started Perkins, it was clear that Zoloft just wasn't working

any longer (though we did use it for awhile for chronic pain). I believe the

next med used was Luvox; for this was a horror. The psychiatrist

wanted her on it for x months, and we held in there for awhile, but finally

staff and family had had enough. I think that Paxil was the next drug

(though there were other combinations, too, before we got to it). As with

all of these drugs, we started with a low dose and worked our way up. I

think that's the hardest part.

Now, mostly, the Paxil works, and I wouldn't think of stopping it at this

point. There are times when OCD still peaks --- used to be around ear

issues, I'd wager now; these days it's the horrid problem we're having with

regulating her bowel meds/discomfort. We have Ativan, too, for agitation

but have used it only twice since we moved K. from Fulton and that was for

my benefit when just wouldn't sleep.

So, I've written a long 'un. Send any questions. Andy will be home

shortly, and he almost certainly remembers things more accurately than I.

The bottom line for us, folks who don't take meds unless they are

essential, was that our gut and heart told us something had to be done.

was miserable. Functioning was hit hard. She and we needed

help.

Let me hear from you. Martha

[Guest guest]

Michele,

I have no words of wisdom, although reading this is like kind of scary!!!!!!

Something else to look forward to!!

My only comments would be it must be near impossible to keep Aubrey awake

for the journey seems ridiculous!!

hope it turns out good Les x

>

> Michele,

> I can only respond to the OCD part of your post. I don't know when it

> started with ; there were probably hints of it early. She was still

> in

> school in Springfield, a new school, when things got so bad we KNEW we

> had to do something. Luckily, I'd heard Laurie Denno's presentation at a

> Washington conference and just called her. She even put me in touch

> with Perkins' Health Services, and I took the information to K's ped. We

> started her on Zoloft (don't remember the initial or even final dosage). I

>

> kept good notes daily but don't have them in front of me. I do recall one

> hellish night when I wrote that she was totally off the wall --- so hyper

> I

> was ready to quit. My psychiatrist brother talked me into giving Zoloft a

> longer chance, and he was right. Eventually I remember writing that it was

>

> " as though someone had turned on a lightbulb " .

> Why did we decide on medication? would have to get in and out of

> the tub many times. The lights had to be either on or off (depending on

> the

> moment's OCD turn, I guess). When driving home from school, if I took

> an unusual turn (e.g., traffic was too heavy to go the usual way),

> would bang her head against the car window and anything else in sight.

> Same thing if I went to her favorite after school snack place by anything

> other than one route. There was lots more, blissfully out of my mind. I

> know that there were rituals in the car that including touching me a

> certain

> way as I drove. Oh, it was bad and probably dangerous.

> Remember, she had changed schools, had a teacher I later learned

> had VERY severe OCD herself, we were already in litigation, and I'm

> certain that she sensed the horrendous stress.

> Now, the story doesn't end with Zoloft. Again, I don't remember the exact

> history (and the family historian, Andy, isn't yet home to correct me),

> though perhaps Pam can help if her memory is better than mine. At some

> point after K. started Perkins, it was clear that Zoloft just wasn't

> working

> any longer (though we did use it for awhile for chronic pain). I believe

> the

> next med used was Luvox; for this was a horror. The psychiatrist

> wanted her on it for x months, and we held in there for awhile, but

> finally

> staff and family had had enough. I think that Paxil was the next drug

> (though there were other combinations, too, before we got to it). As with

> all of these drugs, we started with a low dose and worked our way up. I

> think that's the hardest part.

> Now, mostly, the Paxil works, and I wouldn't think of stopping it at this

> point. There are times when OCD still peaks --- used to be around ear

> issues, I'd wager now; these days it's the horrid problem we're having

> with

> regulating her bowel meds/discomfort. We have Ativan, too, for agitation

> but have used it only twice since we moved K. from Fulton and that was for

>

> my benefit when just wouldn't sleep.

> So, I've written a long 'un. Send any questions. Andy will be home

> shortly, and he almost certainly remembers things more accurately than I.

> The bottom line for us, folks who don't take meds unless they are

> essential, was that our gut and heart told us something had to be done.

> was miserable. Functioning was hit hard. She and we needed

> help.

> Let me hear from you. Martha

>

>

>

[Guest guest]

Michele--

When Eddie had his sleep-deprived EEG we got a hotel room just 5

minutes from the hospital. Good thing we did, he almost fell asleep in

the waiting room. My mother came along and we all slept till about 1am

then took turns entertaining Eddie to keep him awake.

The test itself wasn't bad, but we had to hold Eddie down until he fell

asleep to keep him from pulling the leads off his head (he was 5). They

woke him at the end of the test, but he then didn't sleep for the rest

of the day.

Joanne

> She has to be sleep-deprived the night before - no more than 4 hours

> of sleep. In order to do that, I have to be sleep-deprived as well. So

> how to we get to the drs office 2.5 hrs away?? She'll surely fall

> asleep on the ride - and I might too!

[Guest guest]

Martha,

your memory is doing well!!!! I don't think I can add anything else to your

story.

pam

[Guest guest]

will you reall eat me mum LOL shes jsut like me michelle i do it to my mum

as you say literal i go but you womt really leave me here will you mum and

to my firends ro carers you wont chop my toungue of ruthy to which her

answer will be no i wont but you shouldnt chew it LOL i dont know if i have

imaginary friends as such but soemtiems ill talk to my firends when they

arent there like in my sleep so people say lol its iwerd as for my toungue

chewing speach people say close mouth that helps me a bit and the other

stuff i really dont know lol

>

> Martha,

> your memory is doing well!!!! I don't think I can add anything else to

> your story.

>

> pam

>

>

>

[Guest guest]

Hi Michele,

's favorite escape was to pretend she was a puppy. Her favorite way to

initiate talk and play with me was through her stuffed animals. Her first

automatic response to any " serious "

question was " I don't know " . She still says that frequently, but I don't

let her end anything there. We had behavior situations when she would go to

some classmates houses that were mortifying. At one little girls house, she

flipped out when it was time for her to come home for dinnertime. She

announced

she wanted to live there, and figured if she couldn't stay it meant they

hated her. She closed herself in their bathroom and wouldn't come out. The Mom

told me, it was too much for her daughter to deal with. .She was obviously very

aware that she was different, but couldn't fix it. And she desperately

wanted friends her age, and couldn't fix that either. Even though she had been

in pre-school since age 3, she was only good at relating to adults, and then

later, older children. I think she felt comfortable with the adults, as we,

without even thinking, filled in all the gaps for her. And the older children

also had lesser expectations of her, and also engaged in 'fantasy play' with

her. She was very desperate for friends, and the desperation helped drive them

away.

When you posted about " no inner dialogue " that sure rang true, and seemed

to explain much. Then add the sensory deficits, and all the effort to manage

that, the glasses, hearing aid, trach, g-tube, balance, not hearing or seeing

people, etc. etc. and all that seemed enough to explain her odd behavior.

Di was also very stubborn and self-willed-even if going in a wrong

direction. No amount of explaining or pleading would totally loosen that grip

she'd

have on an idea. That was tough. That has lessened through the years, and only

now would I call it in normal range.

contd. page 2.

[Guest guest]

Chantelle-

I love the way you managed that! And, yes, we all talk to ourselves inside

our mind whether we realize it and think about it or not. One of the things

the neuropsych said was that Aubrie hadn't developed self-talk yet. So it's

making sense that she's moving along sort of delayed but in that direction.

If her imaginary friends are sort of the precursor to self-talk that helps

me to be more comfortable with it. I just needed a sense that it won't

interfere with her social life now or her adult life later. Thank you for

that! I will share these ideas with DJ - it drives him crazy sometimes out

in public. We both enjoy it for the rich imagination of it and the humor of

it - but we worry about it too.

Thanks,

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Chantelle McLaren

Sent: Thursday, August 31, 2006 2:22 PM

To: CHARGE

Subject: Re: neurology

My secret imaginary friend and i decided that when i got my cat, part of her

spirit would be in the cat. lol. Funny thing is, my imaginary friend from

when i was little was . I named my cat Aeryn Sun (pronounced the same

as erin) after a Farscape character

I stoped talking out loud to my imaginary friend years ago but didnt stop me

from having conversations in my head with her lol. Depends how old your guy

is, talk to him about having his friend and him have non verble

conversations. That way he wont get teased for " talking to himself " . Thats

what i ended up doing. I think as i got older my imaginary friend as you

could say became a form of what people call a conscious (you know that voice

of reason in your head that noone ever listens to?)

I did develop wich i think was part of a bad thing from my past was an angry

mean voice in my head but that was quite different then an imaginary friend.

Hope something i wrote was usefull.

Chantelle

--

[Guest guest]

Martha-

Ok - we are so not at that point yet. Aubrie's stuff interferes a bit with

life, but not at all to the extent of what you're describing. There are

times when she'll be very upset if I go an unfamiliar or unexpected route -

but not headbanging - just whining and carrying on. Same thing if we can't

find a parking spot and have to ride around for one - and if the traffic is

heavy and we can't go forward when she thinks we should - or if we appear

lost to her. It's annoying to have her upset over something like that - but

it's not dangerous or extreme.

There are other things - as random as the lights on or off thing. The

morning routine must include listening to music and if we're running behind

and there isn't time it's a big deal - but manageable - just whining and

carrying on.

So I guess I'm still not sure how far to let things go before interceding

with something. We manage now by trying to avoid the triggers we know and

helping her through the moments we couldn't avoid.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

lewcap@...

Sent: Thursday, August 31, 2006 4:07 PM

To: CHARGE

Subject: Re: neurology

Michele,

I can only respond to the OCD part of your post. I don't know when it

started with ; there were probably hints of it early. She was still in

school in Springfield, a new school, when things got so bad we KNEW we

had to do something. Luckily, I'd heard Laurie Denno's presentation at a

Washington conference and just called her. She even put me in touch

with Perkins' Health Services, and I took the information to K's ped. We

started her on Zoloft (don't remember the initial or even final dosage). I

kept good notes daily but don't have them in front of me. I do recall one

hellish night when I wrote that she was totally off the wall --- so hyper I

was ready to quit. My psychiatrist brother talked me into giving Zoloft a

longer chance, and he was right. Eventually I remember writing that it was

" as though someone had turned on a lightbulb " .

Why did we decide on medication? would have to get in and out of

the tub many times. The lights had to be either on or off (depending on the

moment's OCD turn, I guess). When driving home from school, if I took

an unusual turn (e.g., traffic was too heavy to go the usual way),

would bang her head against the car window and anything else in sight.

Same thing if I went to her favorite after school snack place by anything

other than one route. There was lots more, blissfully out of my mind. I

know that there were rituals in the car that including touching me a certain

way as I drove. Oh, it was bad and probably dangerous.

Remember, she had changed schools, had a teacher I later learned

had VERY severe OCD herself, we were already in litigation, and I'm

certain that she sensed the horrendous stress.

Now, the story doesn't end with Zoloft. Again, I don't remember the exact

history (and the family historian, Andy, isn't yet home to correct me),

though perhaps Pam can help if her memory is better than mine. At some

point after K. started Perkins, it was clear that Zoloft just wasn't working

any longer (though we did use it for awhile for chronic pain). I believe the

next med used was Luvox; for this was a horror. The psychiatrist

wanted her on it for x months, and we held in there for awhile, but finally

staff and family had had enough. I think that Paxil was the next drug

(though there were other combinations, too, before we got to it). As with

all of these drugs, we started with a low dose and worked our way up. I

think that's the hardest part.

Now, mostly, the Paxil works, and I wouldn't think of stopping it at this

point. There are times when OCD still peaks --- used to be around ear

issues, I'd wager now; these days it's the horrid problem we're having with

regulating her bowel meds/discomfort. We have Ativan, too, for agitation

but have used it only twice since we moved K. from Fulton and that was for

my benefit when just wouldn't sleep.

So, I've written a long 'un. Send any questions. Andy will be home

shortly, and he almost certainly remembers things more accurately than I.

The bottom line for us, folks who don't take meds unless they are

essential, was that our gut and heart told us something had to be done.

was miserable. Functioning was hit hard. She and we needed

help.

Let me hear from you. Martha

[Guest guest]

Joanne-

Helpful -- thanks. I'm still working this out in my mind - how to best

manage. Your scenario was one I'd considered as a good possibility.

Michele W

[Guest guest]

Michele,

Been there done that! How? stayed with the girls till about 11pm.

Then it was my turn. I drove them in around 5 am to get them there safely.

Then

it was tons of coffee and Mountain Dew. I'm not kidding here either. It's

hard but you'll do fine.

I also agree with the doctor to wait and see. A different environment might

change things. Stress is a huge factor. Reduce the stress and things change.

Just ask Tim!

As for the OCD and persevorations we sought help from a child psych who had

training with children who had intense special needs. You can't do it alone.

And when to step in? We did when it impacted her learning or life. Patty

could understand the what, why and how. Starting now when Aubrie is young will

help her understand herself more. Do it gently though. We also gave Patty

different strategies to try. She then found those that worked for her. Other

times we had to step in and stop her. It was hard but wasn't impossible.

About the literal thing-funny story here. When Patty was driving me crazy I

would tell her I was going to sell her to the Indians. I didn't realize that

she took it literally. I soon stopped. Well, a few months ago we were on a

Navaho Reservation in a store. This man and woman were with their little girl.

They were Navahos. Anyway the little girl was misbehaving and the father

told her if she weren't good he would sell her to the...... then he saw us and

stopped talking. Bet he was going to say he'd sell her to us.

You have to look at life, all of it. It is hard for the educator and it will

be hard for Aubrie but it can be done. You just keep on being the mom you

are and Aubrie will be fine. I know it. Don't worry so much.

Easy for me to say, huh!

[Guest guest]

Jody-

Here's the thing - she'll be at the same hospital for a sleep study next

week. From what I understand, they get limited EEG info during the sleep

study. Why can't they just collect more of that data while she's there?

The lack of coordination is going to drive me insane.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Jody Wolfe

Sent: Tuesday, September 05, 2006 10:55 AM

To: CHARGE

Subject: Re: neurology

Michele - When Ethan just had his EEG in July, we opted to do it during

recovery after his bronch. He started waking up and they gave him a little

sedative to help him sleep through the EEG. I'm guessing they will not

sedate her for this? The other option is do a 24 hour EEG where you can get

a good reading from it during her normal sleep cycle at night. It is a pain

because you have to make sure everything stays secure for 24 hours, but a 1

hour EEG may not catch what you are looking for.

Take care,

Jody

Jody - mom to Ethan (ChARGE) and