Re: We received the prescription

[Guest guest]

Good for you, Sue! That is great you were persistent and did not let

the neurosurgeon talk you out of treatment for Colin! I'm glad he saw

the print-outs you had - it showed you did your homework - I hope it

will prompt him to do his!

I can't wait to hear what the neurosurgeon's reaction will be when he

sees Colin's progress after he's been in his band for 2 weeks - you

and he should be able to see some changes. Make sure you bring in

Colin's " before photos " to that appointment so the neurosurgeon can be

reminded and see the differences the band is making already. Perhaps

your ped. can write the letter of medical necessity if you need one

for insurance purposes. There's even a sample one of those on this

site, I believe. It doesn't have to be long or elaborate.

Let us know how Tuesday goes! We'll be thinking about you and precious

Colin! You both are going to do great!

Take care,

J. in SC

Olivia (4)

Meredith (15 months old, 16 weeks in DOC Band, second band in July)

--- In Plagiocephaly , " sueandcolin2004 " <sflavin@c...>

wrote:

> Hello

>

> I'm sorry I haven't kept in touch sooner as my e-mail was bouncing

> messages and would not let me post. I have since changed my e-mail.

>

> We had an apptm't with a neurosurg at Children's Hospital of Bflo. on

> Weds. morning. He said all of the things that I and you knew that he

> would say: he is healthy and developing normally and it will round

> out in 3-6 mos. as the brain grows, he will be crawling and walking

> more...blah blah blah. He (accidentally) saw all of my notes and

> printouts from this website and said " I see you have been doing some

> research... " He thought that the photos (that are posted here under

> Colin F.) showed improvement. He did say that there may still be

> some flattening remaining but did not suggest any treatment.

>

> I had told him that my dh and I have thought long and hard about this

> and that we do not want to lose this window of opportunity (Colin is

> 8.5 mos) to ensure that his head does develop more " normally. " We are

> not looking for perfection and know that there is no perfectly round

> head. He did make me second guess myself but I had enough courage to

> ask him for the prescription. He asked if I was comfortable with

> that and I said yes so he wrote it. He wants to see Colin 2 wks

> after the start of tx.

>

> I then asked if he would write/sign a letter of medical necessity and

> he said that the prescription indicates that it is medically

> necessary (we'll see). I also asked if he would sign a justification

> for us to go to an out-of-network facility that we preferred to use

> and he refused and said that it is up to us for where to go. Now I

> have to see if our primary ped will sign a letter.

>

> The letters in your files may be very helpful to me. If we do not

> get any coverage the cost is $2,800 for a STARband from Greater

> Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> would arrive in 2 wks. I'm getting more and more comfortable with

> this everyday but of course have all the same worries that you all

> had/have. I can't decide on a design. Did anyone ever see the

> yellow one with the dancing elephants? LOL The solid yellow looks a

> bit bright. Any opinions welcome.

>

> Thank you so much for being here!

>

> Sue

> Colin F. (8.5 mos. brachy)

> Buffalo, NY

[Guest guest]

Hi Sue,

Sooo, do you feel better? You've jumped one big hurdle all ready.

Let us know how Colin's casting goes or do they have the Starscanner

there?

Natasha

> Hello

>

> I'm sorry I haven't kept in touch sooner as my e-mail was bouncing

> messages and would not let me post. I have since changed my e-mail.

>

> We had an apptm't with a neurosurg at Children's Hospital of Bflo.

on

> Weds. morning. He said all of the things that I and you knew that

he

> would say: he is healthy and developing normally and it will round

> out in 3-6 mos. as the brain grows, he will be crawling and walking

> more...blah blah blah. He (accidentally) saw all of my notes and

> printouts from this website and said " I see you have been doing

some

> research... " He thought that the photos (that are posted here under

> Colin F.) showed improvement. He did say that there may still be

> some flattening remaining but did not suggest any treatment.

>

> I had told him that my dh and I have thought long and hard about

this

> and that we do not want to lose this window of opportunity (Colin

is

> 8.5 mos) to ensure that his head does develop more " normally. " We

are

> not looking for perfection and know that there is no perfectly

round

> head. He did make me second guess myself but I had enough courage

to

> ask him for the prescription. He asked if I was comfortable with

> that and I said yes so he wrote it. He wants to see Colin 2 wks

> after the start of tx.

>

> I then asked if he would write/sign a letter of medical necessity

and

> he said that the prescription indicates that it is medically

> necessary (we'll see). I also asked if he would sign a

justification

> for us to go to an out-of-network facility that we preferred to use

> and he refused and said that it is up to us for where to go. Now I

> have to see if our primary ped will sign a letter.

>

> The letters in your files may be very helpful to me. If we do not

> get any coverage the cost is $2,800 for a STARband from Greater

> Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> would arrive in 2 wks. I'm getting more and more comfortable with

> this everyday but of course have all the same worries that you all

> had/have. I can't decide on a design. Did anyone ever see the

> yellow one with the dancing elephants? LOL The solid yellow looks

a

> bit bright. Any opinions welcome.

>

> Thank you so much for being here!

>

> Sue

> Colin F. (8.5 mos. brachy)

> Buffalo, NY

[Guest guest]

Thank you Natasha. I feel loads better. They have the Star scanner

that I am looking forward to but more importantly the Orthotist,

Chuck , is extremely experienced, knowledgeable and

apparently very good with children. I spoke with a (past) member and

got a really good recommendation. Thank you again.

Sue

> > Hello

> >

> > I'm sorry I haven't kept in touch sooner as my e-mail was

bouncing

> > messages and would not let me post. I have since changed my e-

mail.

> >

> > We had an apptm't with a neurosurg at Children's Hospital of

Bflo.

> on

> > Weds. morning. He said all of the things that I and you knew

that

> he

> > would say: he is healthy and developing normally and it will

round

> > out in 3-6 mos. as the brain grows, he will be crawling and

walking

> > more...blah blah blah. He (accidentally) saw all of my notes and

> > printouts from this website and said " I see you have been doing

> some

> > research... " He thought that the photos (that are posted here

under

> > Colin F.) showed improvement. He did say that there may still be

> > some flattening remaining but did not suggest any treatment.

> >

> > I had told him that my dh and I have thought long and hard about

> this

> > and that we do not want to lose this window of opportunity (Colin

> is

> > 8.5 mos) to ensure that his head does develop more " normally. " We

> are

> > not looking for perfection and know that there is no perfectly

> round

> > head. He did make me second guess myself but I had enough

courage

> to

> > ask him for the prescription. He asked if I was comfortable with

> > that and I said yes so he wrote it. He wants to see Colin 2 wks

> > after the start of tx.

> >

> > I then asked if he would write/sign a letter of medical necessity

> and

> > he said that the prescription indicates that it is medically

> > necessary (we'll see). I also asked if he would sign a

> justification

> > for us to go to an out-of-network facility that we preferred to

use

> > and he refused and said that it is up to us for where to go. Now

I

> > have to see if our primary ped will sign a letter.

> >

> > The letters in your files may be very helpful to me. If we do

not

> > get any coverage the cost is $2,800 for a STARband from Greater

> > Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> > would arrive in 2 wks. I'm getting more and more comfortable

with

> > this everyday but of course have all the same worries that you

all

> > had/have. I can't decide on a design. Did anyone ever see the

> > yellow one with the dancing elephants? LOL The solid yellow

looks

> a

> > bit bright. Any opinions welcome.

> >

> > Thank you so much for being here!

> >

> > Sue

> > Colin F. (8.5 mos. brachy)

> > Buffalo, NY

[Guest guest]

Sue,

It's great to hear from you! I think you handled the neuro visit

perfectly, and I admire your asking him to write the prescription.

I wonder if he was surprised at all of the paperwork you brought

with you? So, is he going to write a letter of medical necessity?

I hope so, because I do hear that helps with insurance appeals.

Please let us know how Colin's initial visit goes next week. Will

he be scanned on that day for this Starband?

Take care,

Christie (Mom to Repo'd Remy)

> Hello

>

> I'm sorry I haven't kept in touch sooner as my e-mail was bouncing

> messages and would not let me post. I have since changed my e-

mail.

>

> We had an apptm't with a neurosurg at Children's Hospital of Bflo.

on

> Weds. morning. He said all of the things that I and you knew that

he

> would say: he is healthy and developing normally and it will

round

> out in 3-6 mos. as the brain grows, he will be crawling and

walking

> more...blah blah blah. He (accidentally) saw all of my notes and

> printouts from this website and said " I see you have been doing

some

> research... " He thought that the photos (that are posted here

under

> Colin F.) showed improvement. He did say that there may still be

> some flattening remaining but did not suggest any treatment.

>

> I had told him that my dh and I have thought long and hard about

this

> and that we do not want to lose this window of opportunity (Colin

is

> 8.5 mos) to ensure that his head does develop more " normally. " We

are

> not looking for perfection and know that there is no perfectly

round

> head. He did make me second guess myself but I had enough courage

to

> ask him for the prescription. He asked if I was comfortable with

> that and I said yes so he wrote it. He wants to see Colin 2 wks

> after the start of tx.

>

> I then asked if he would write/sign a letter of medical necessity

and

> he said that the prescription indicates that it is medically

> necessary (we'll see). I also asked if he would sign a

justification

> for us to go to an out-of-network facility that we preferred to

use

> and he refused and said that it is up to us for where to go. Now

I

> have to see if our primary ped will sign a letter.

>

> The letters in your files may be very helpful to me. If we do not

> get any coverage the cost is $2,800 for a STARband from Greater

> Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> would arrive in 2 wks. I'm getting more and more comfortable with

> this everyday but of course have all the same worries that you all

> had/have. I can't decide on a design. Did anyone ever see the

> yellow one with the dancing elephants? LOL The solid yellow

looks a

> bit bright. Any opinions welcome.

>

> Thank you so much for being here!

>

> Sue

> Colin F. (8.5 mos. brachy)

> Buffalo, NY

[Guest guest]

Sue, I want to applaud you for sticking to your guns and demanding a

rx. Great news! I wish you luck in your journey. I look forward to

hearing all about it.

Dustie

> Hello

>

> I'm sorry I haven't kept in touch sooner as my e-mail was bouncing

> messages and would not let me post. I have since changed my e-

mail.

>

> We had an apptm't with a neurosurg at Children's Hospital of Bflo.

on

> Weds. morning. He said all of the things that I and you knew that

he

> would say: he is healthy and developing normally and it will

round

> out in 3-6 mos. as the brain grows, he will be crawling and

walking

> more...blah blah blah. He (accidentally) saw all of my notes and

> printouts from this website and said " I see you have been doing

some

> research... " He thought that the photos (that are posted here

under

> Colin F.) showed improvement. He did say that there may still be

> some flattening remaining but did not suggest any treatment.

>

> I had told him that my dh and I have thought long and hard about

this

> and that we do not want to lose this window of opportunity (Colin

is

> 8.5 mos) to ensure that his head does develop more " normally. " We

are

> not looking for perfection and know that there is no perfectly

round

> head. He did make me second guess myself but I had enough courage

to

> ask him for the prescription. He asked if I was comfortable with

> that and I said yes so he wrote it. He wants to see Colin 2 wks

> after the start of tx.

>

> I then asked if he would write/sign a letter of medical necessity

and

> he said that the prescription indicates that it is medically

> necessary (we'll see). I also asked if he would sign a

justification

> for us to go to an out-of-network facility that we preferred to

use

> and he refused and said that it is up to us for where to go. Now

I

> have to see if our primary ped will sign a letter.

>

> The letters in your files may be very helpful to me. If we do not

> get any coverage the cost is $2,800 for a STARband from Greater

> Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> would arrive in 2 wks. I'm getting more and more comfortable with

> this everyday but of course have all the same worries that you all

> had/have. I can't decide on a design. Did anyone ever see the

> yellow one with the dancing elephants? LOL The solid yellow

looks a

> bit bright. Any opinions welcome.

>

> Thank you so much for being here!

>

> Sue

> Colin F. (8.5 mos. brachy)

> Buffalo, NY

[Guest guest]

Thank you Christie.

Yes he will be scanned that day. <deep breath>

-----Original Message-----From: redlocks2003 [mailto:redlocks@...]Sent: Friday, June 11, 2004 11:44 AMPlagiocephaly Subject: Re: We received the prescriptionSue,It's great to hear from you! I think you handled the neuro visit perfectly, and I admire your asking him to write the prescription. I wonder if he was surprised at all of the paperwork you brought with you? So, is he going to write a letter of medical necessity? I hope so, because I do hear that helps with insurance appeals.Please let us know how Colin's initial visit goes next week. Will he be scanned on that day for this Starband? Take care,Christie (Mom to Repo'd Remy)> Hello> > I'm sorry I haven't kept in touch sooner as my e-mail was bouncing > messages and would not let me post. I have since changed my e-mail.> > We had an apptm't with a neurosurg at Children's Hospital of Bflo. on > Weds. morning. He said all of the things that I and you knew that he > would say: he is healthy and developing normally and it will round > out in 3-6 mos. as the brain grows, he will be crawling and walking > more...blah blah blah. He (accidentally) saw all of my notes and > printouts from this website and said "I see you have been doing some > research..." He thought that the photos (that are posted here under > Colin F.) showed improvement. He did say that there may still be > some flattening remaining but did not suggest any treatment. > > I had told him that my dh and I have thought long and hard about this > and that we do not want to lose this window of opportunity (Colin is > 8.5 mos) to ensure that his head does develop more "normally." We are > not looking for perfection and know that there is no perfectly round > head. He did make me second guess myself but I had enough courage to > ask him for the prescription. He asked if I was comfortable with > that and I said yes so he wrote it. He wants to see Colin 2 wks > after the start of tx.> > I then asked if he would write/sign a letter of medical necessity and > he said that the prescription indicates that it is medically > necessary (we'll see). I also asked if he would sign a justification > for us to go to an out-of-network facility that we preferred to use > and he refused and said that it is up to us for where to go. Now I > have to see if our primary ped will sign a letter.> > The letters in your files may be very helpful to me. If we do not > get any coverage the cost is $2,800 for a STARband from Greater > Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it > would arrive in 2 wks. I'm getting more and more comfortable with > this everyday but of course have all the same worries that you all > had/have. I can't decide on a design. Did anyone ever see the > yellow one with the dancing elephants? LOL The solid yellow looks a > bit bright. Any opinions welcome.> > Thank you so much for being here!> > Sue> Colin F. (8.5 mos. brachy)> Buffalo, NYFor more plagio info

[Guest guest]

Hello Sue

It's great that you told him what you wanted, and even better that

he wrote the Rx.

As far as the color and design goes, I enjoyed playing around with

stickers and mod podge. I changed Willow's design about 5 or 6x in

10wks. )

Let us know how the appointment goes.

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad 02/04

> Hello

>

> I'm sorry I haven't kept in touch sooner as my e-mail was bouncing

> messages and would not let me post. I have since changed my e-

mail.

>

> We had an apptm't with a neurosurg at Children's Hospital of Bflo.

on

> Weds. morning. He said all of the things that I and you knew that

he

> would say: he is healthy and developing normally and it will

round

> out in 3-6 mos. as the brain grows, he will be crawling and

walking

> more...blah blah blah. He (accidentally) saw all of my notes and

> printouts from this website and said " I see you have been doing

some

> research... " He thought that the photos (that are posted here

under

> Colin F.) showed improvement. He did say that there may still be

> some flattening remaining but did not suggest any treatment.

>

> I had told him that my dh and I have thought long and hard about

this

> and that we do not want to lose this window of opportunity (Colin

is

> 8.5 mos) to ensure that his head does develop more " normally. " We

are

> not looking for perfection and know that there is no perfectly

round

> head. He did make me second guess myself but I had enough courage

to

> ask him for the prescription. He asked if I was comfortable with

> that and I said yes so he wrote it. He wants to see Colin 2 wks

> after the start of tx.

>

> I then asked if he would write/sign a letter of medical necessity

and

> he said that the prescription indicates that it is medically

> necessary (we'll see). I also asked if he would sign a

justification

> for us to go to an out-of-network facility that we preferred to

use

> and he refused and said that it is up to us for where to go. Now

I

> have to see if our primary ped will sign a letter.

>

> The letters in your files may be very helpful to me. If we do not

> get any coverage the cost is $2,800 for a STARband from Greater

> Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> would arrive in 2 wks. I'm getting more and more comfortable with

> this everyday but of course have all the same worries that you all

> had/have. I can't decide on a design. Did anyone ever see the

> yellow one with the dancing elephants? LOL The solid yellow

looks a

> bit bright. Any opinions welcome.

>

> Thank you so much for being here!

>

> Sue

> Colin F. (8.5 mos. brachy)

> Buffalo, NY

[Guest guest]

Hi Sue,

It's good to hear the ball is rolling! Keep us posted.

> Hello

>

> I'm sorry I haven't kept in touch sooner as my e-mail was bouncing

> messages and would not let me post. I have since changed my e-mail.

>

> We had an apptm't with a neurosurg at Children's Hospital of Bflo.

on

> Weds. morning. He said all of the things that I and you knew that

he

> would say: he is healthy and developing normally and it will round

> out in 3-6 mos. as the brain grows, he will be crawling and walking

> more...blah blah blah. He (accidentally) saw all of my notes and

> printouts from this website and said " I see you have been doing

some

> research... " He thought that the photos (that are posted here under

> Colin F.) showed improvement. He did say that there may still be

> some flattening remaining but did not suggest any treatment.

>

> I had told him that my dh and I have thought long and hard about

this

> and that we do not want to lose this window of opportunity (Colin

is

> 8.5 mos) to ensure that his head does develop more " normally. " We

are

> not looking for perfection and know that there is no perfectly

round

> head. He did make me second guess myself but I had enough courage

to

> ask him for the prescription. He asked if I was comfortable with

> that and I said yes so he wrote it. He wants to see Colin 2 wks

> after the start of tx.

>

> I then asked if he would write/sign a letter of medical necessity

and

> he said that the prescription indicates that it is medically

> necessary (we'll see). I also asked if he would sign a

justification

> for us to go to an out-of-network facility that we preferred to use

> and he refused and said that it is up to us for where to go. Now I

> have to see if our primary ped will sign a letter.

>

> The letters in your files may be very helpful to me. If we do not

> get any coverage the cost is $2,800 for a STARband from Greater

> Rochester P & O. Our apptm't with them is on Tuesday, 6/15 and it

> would arrive in 2 wks. I'm getting more and more comfortable with

> this everyday but of course have all the same worries that you all

> had/have. I can't decide on a design. Did anyone ever see the

> yellow one with the dancing elephants? LOL The solid yellow looks

a

> bit bright. Any opinions welcome.

>

> Thank you so much for being here!

>

> Sue

> Colin F. (8.5 mos. brachy)

> Buffalo, NY