Re: emma update - more update

[Guest guest]

Amy,

That is such great news!!! You will start to feel so much more at ease once

the casting is over and the band is ready to start working its magic!!!

Please keep us posted!

' Mom

[Guest guest]

my husband just got home and called me at work. the original

prescription from the neurosurgeon at Duke arrived in today's mail.

with a postmark of 4/11/02!! the nurse/secretary told me she mailed it

on 4/5/02!!!! no wonder she didn't want me to come and pick it up!

also, i talked to CT today. they got the script and the letter from

the craniofacial surgeon and spoke with my insurance company.

apparently, we can schedule the casting before we hear back from BCBS.

emma's casting appointment is for 4/22/02. i'm so happy things are

finally moving.

and yes, her measurements floored me. i don't have much to compare it

with (i don't know the average measurements of children who are

banded), but it does seem severe.

i will post a photo of my little sweetie if i can figure out how to

add an attachment. soon her head will be sporting a whole new look.

amy

mom to emma (born 9/24/01)

> > hi everyone.

> > i haven't had much time to post or read emails in the past week,

> but i

> > wanted to let you all know (especially those of you who have

> responded

> > to my questions with such great advice) that i took emma to

> charlotte

> > last friday for a free consultation with Cranial Technologies. you

> may

> > remember that we saw a pediatric neurosurgeon at Duke who

> recommended

> > we continue repositioning and come back to see him in a month.

> since

> > we had been repositioning (or trying to - emma has torticollis)

> for

> > the 5 - 6 weeks it took to get an appointment with the

> neurosurgeon,

> > and i hadn't seen any results, i decided to see what CT could tell

> me.

> > the Charlotte office was great, and they measured her (which the

> > neurosurgeon did not do). She has 18 mm of asymmetry, 11 mm of ear

> > asymmetry. so, i decided i wanted to go ahead with the doc band.

> we

> > have BCBS in NC and they require a letter of medical necessity as

> well

> > as the prescription. the neurosurgeon had told us he would write

> us a

> > script, even though he didn't recommend that treatment at this

> time,

> > so i had called his office the week before our visit to CT and

> they

> > said they would mail me the script. it had been over two weeks and

> it

> > still hadn't arrived. on moday i called to ask for the letter of

> > medical necessity (which i didn't know i needed until our visit at

> > CT), and after 3 days of leaving messages, someone finally called

> me

> > back to say he wouldn't write the letter!! has this ever happened

> to

> > anyone else? how can a doctor prescribe something that he doesn't

> deem

> > medically necessary??!! anyway, i called CT all upset and they

> > recommended a craniofacial surgeon in Charlotte. we drove back

> > yesterday (3 hours each way) to meet with him. he not only wrote

> us

> > the script and the letter, he told me that emma's case is severe

> > enough that most likely she will require two bands. now i am

> anxiously

> > waiting for BCBS to deny us, so we can schedule an appointment for

> the

> > casting. and, would you believe it, the script from the

> neurosurgeon

> > has STILL not arrived?!! i am so anxious to get things going. it

> makes

> > me sick to think of how much time has already been lost. i've been

> > working on this since she was 4 months old and she's already 6 1/2

> > months old now! i swear, i feel like i have two full time jobs -

> on

> > top of being a mommy!!

> > emma has been pulling my hair lately, and i told her she was only

> > allowed to pull out the white ones! : )

> > is my post long enough?? thanks for listening and thanks for all

> the

> > great advice!

> > amy

> > mom to emma (born 9/24/01)

[Guest guest]

> and yes, her measurements floored me. i don't have much to compare

it

> with (i don't know the average measurements of children who are

> banded), but it does seem severe.

>

>

Amy -

I think the average person is 4 mm off. If I remember correctly, to

band you need to be 1 standard deviation off the norm, so that would

be 8 mm. Dane is/was 2.5 standard deviations off the norm - 14 mm.

This is how I understood it, but math was never my best subject. I

hope I'm not completely wrong!

Dane's mom

[Guest guest]

Amy:

I just checked out Emma's picture - what a cutie! She sure does look

like a happy little angel .

Just one more week before her casting! That's terrific. Emma will

have a rounder head to go with an already beautiful face (and head)

in no time now. Good luck with the casting & Insurance

Debbie Abby's mom DOCgrad

MI

> > Amy -

> > Think positive! BCBS might not deny you!

> > It only took UHC 4 days to deny us the first time, so keep

checking

> > your mail.

> > Weren't you shocked to get Emma's measurements? I knew Dane was

> > probably going to need a band, but I was so floored to hear his

> > measurements and that he may need 2 bands.

> >

> > Dane's mom (DOC Band 2/14)

> >

> > --- In Plagiocephaly@y..., " amy_coppedge " <amy_coppedge@y...>

wrote:

> > > hi everyone.

> > > i haven't had much time to post or read emails in the past

week,

> > but i

> > > wanted to let you all know (especially those of you who have

> > responded

> > > to my questions with such great advice) that i took emma to

> > charlotte

> > > last friday for a free consultation with Cranial Technologies.

you

> > may

> > > remember that we saw a pediatric neurosurgeon at Duke who

> > recommended

> > > we continue repositioning and come back to see him in a month.

> > since

> > > we had been repositioning (or trying to - emma has torticollis)

> > for

> > > the 5 - 6 weeks it took to get an appointment with the

> > neurosurgeon,

> > > and i hadn't seen any results, i decided to see what CT could

tell

> > me.

> > > the Charlotte office was great, and they measured her (which

the

> > > neurosurgeon did not do). She has 18 mm of asymmetry, 11 mm of

ear

> > > asymmetry. so, i decided i wanted to go ahead with the doc

band.

> > we

> > > have BCBS in NC and they require a letter of medical necessity

as

> > well

> > > as the prescription. the neurosurgeon had told us he would

write

> > us a

> > > script, even though he didn't recommend that treatment at this

> > time,

> > > so i had called his office the week before our visit to CT and

> > they

> > > said they would mail me the script. it had been over two weeks

and

> > it

> > > still hadn't arrived. on moday i called to ask for the letter

of

> > > medical necessity (which i didn't know i needed until our visit

at

> > > CT), and after 3 days of leaving messages, someone finally

called

> > me

> > > back to say he wouldn't write the letter!! has this ever

happened

> > to

> > > anyone else? how can a doctor prescribe something that he

doesn't

> > deem

> > > medically necessary??!! anyway, i called CT all upset and they

> > > recommended a craniofacial surgeon in Charlotte. we drove back

> > > yesterday (3 hours each way) to meet with him. he not only

wrote

> > us

> > > the script and the letter, he told me that emma's case is

severe

> > > enough that most likely she will require two bands. now i am

> > anxiously

> > > waiting for BCBS to deny us, so we can schedule an appointment

for

> > the

> > > casting. and, would you believe it, the script from the

> > neurosurgeon

> > > has STILL not arrived?!! i am so anxious to get things going.

it

> > makes

> > > me sick to think of how much time has already been lost. i've

been

> > > working on this since she was 4 months old and she's already 6

1/2

> > > months old now! i swear, i feel like i have two full time jobs -

> > on

> > > top of being a mommy!!

> > > emma has been pulling my hair lately, and i told her she was

only

> > > allowed to pull out the white ones! : )

> > > is my post long enough?? thanks for listening and thanks for

all

> > the

> > > great advice!

> > > amy

> > > mom to emma (born 9/24/01)