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Amy,

Wow - you really have been through quite an ordeal. I'm glad to hear that

things are looking up. Sometimes specialists will write the scripts if that

is what the parents want even if they do not think it is medically necessary.

Some specialists are of the school of thought that plagio is not a medical

condition, but rather a cosmetic one. I'm sorry your specialist was not more

sensitive and even worse that his office people cannot seem to use the US

Mail system and get that script to you!!! Can you maybe arrange to go and

pick the darn thing up??

I'm glad that things went well at CT. They really are professional and caring

through and through from all I have heard. Let us know how things progress

and best wishes to you and Emma.

Marci (Mom to )

Oklahoma

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Amy,

So glad to hear from you that you are getting the ball rolling (however

slowly!). Emma would still be at a great age for correction even if it takes

another 2 months- so don't sweat it- your doing the best you can and you are

an awesome mom for going the distance!!! Hang in there! So many of us have

had the run around from Doctors, so keep fighting the good fight whatever it

takes!! Please keep us posted and hang in there!

' Mom

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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)

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Amy:

Good for you pursuing this ALL on your own...that's really a shame

about your neurosurgeon & his attitude towards the band. I'm glad CT

recommended a different specialist & he took care of your needs. I

have heard of several specialists that refused to write a letter of

necessity for the band, we had a mom recently talking about that as

well.

Don't feel like you're starting too late! 6.5 mos is plenty young

enough, I'm sure Emma has a lot of growing to do over the next few

mos.! She'll get great correction in the band.

I am hoping BCBS will come thru for you & not give you any hassles!

Please let us know what they do & when you can get Emma casted.

Thanks for your update.

Debbie Abby's mom DOCgrad

MI

> 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)

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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)

> 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)

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