Re: Back from Birmingham, AL

[Guest guest]

Abigail,

Do you have a mailing address and/or email address where I could contact Dr. K?

I'd like to send him occasional cards and pics of Ian.

Thanks!

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Misty,

I would DEFINITELY call Birmingham first thing on Monday morning. His

nurse/assistant, who does all his arrangements, is , and you can

have her paged through the hospital, if you want.

As far as Dr. Khoury, he is really the greatest. He is super nice, a great

listener and communicator, plus he has such good judgment, he is a wonderful

innovator and has amazing skill.

As far as insurance, we have an HMO, so I had to get out of network

authorization, which took an original denial and then an appeal,which was

approved. It took longer than it should have, but I imagine that varies from

insurance to insurance. If you have a PPO, then you don't need authorization but

can pay a percentage out of pocket for the cost- so in some ways it is much

easier. We had to pay for the airplane and hotel, and since my husband, and I

came with Nadia, that turned out to be pretty pricey (Birmingham is not exactly

a hub!!)- but it sounds as if you will be able to drive, so that shouldn't be as

much of an issue.

As far as Nadia's story: she was diagnosed at 13 months with 30+ degree curve

standing, and about a 30 RVAD. We went to SLC 2 times for casts: at 15.5 months

and then 18.5 months, Unfortunately we had a horrible experience there, but I

know lots of people are really happy with their care, so hopefully ours was an

exception. Anyway, we moved to Erie for treatment and have had Dr. Khoury ever

since. We couldn't have been happier! At 19 months in Erie, she was 22 degrees

laying down (they do their xrays differently in Erie). I think by now she has

had 9 casts, acouple had to be cut off due to skin issues. In June she was 2

years 10 months when we had her last cast in Birmingham and is down to 8 degrees

or better supine (as I reported in this thread originally).

So it sounds as if your daughter was started in treatment at about the same

time as Nadia was. If you have any more questions, please do not hesitate to

ask. I don't really know the answer to your question as to whether to cut off

the cast or not. I imagine it might make sense to keep it on until you figure

out whether and when you can see Dr. Khoury, unless it is causing her skin

breakdown or some other issue like that.

I hope everything works out for you, and don't hesitate to contact Dr.

Khoury's team or Erie first thing on Monday. Good luck with everything and

please let us know what happens.

Best, Abigail

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Abigail,

Do you have a mailing address and/or email address where I could contact Dr. K?

I'd like to send him occasional cards and pics of Ian.

Thanks!

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Misty,

I would DEFINITELY call Birmingham first thing on Monday morning. His

nurse/assistant, who does all his arrangements, is , and you can

have her paged through the hospital, if you want.

As far as Dr. Khoury, he is really the greatest. He is super nice, a great

listener and communicator, plus he has such good judgment, he is a wonderful

innovator and has amazing skill.

As far as insurance, we have an HMO, so I had to get out of network

authorization, which took an original denial and then an appeal,which was

approved. It took longer than it should have, but I imagine that varies from

insurance to insurance. If you have a PPO, then you don't need authorization but

can pay a percentage out of pocket for the cost- so in some ways it is much

easier. We had to pay for the airplane and hotel, and since my husband, and I

came with Nadia, that turned out to be pretty pricey (Birmingham is not exactly

a hub!!)- but it sounds as if you will be able to drive, so that shouldn't be as

much of an issue.

As far as Nadia's story: she was diagnosed at 13 months with 30+ degree curve

standing, and about a 30 RVAD. We went to SLC 2 times for casts: at 15.5 months

and then 18.5 months, Unfortunately we had a horrible experience there, but I

know lots of people are really happy with their care, so hopefully ours was an

exception. Anyway, we moved to Erie for treatment and have had Dr. Khoury ever

since. We couldn't have been happier! At 19 months in Erie, she was 22 degrees

laying down (they do their xrays differently in Erie). I think by now she has

had 9 casts, acouple had to be cut off due to skin issues. In June she was 2

years 10 months when we had her last cast in Birmingham and is down to 8 degrees

or better supine (as I reported in this thread originally).

So it sounds as if your daughter was started in treatment at about the same

time as Nadia was. If you have any more questions, please do not hesitate to

ask. I don't really know the answer to your question as to whether to cut off

the cast or not. I imagine it might make sense to keep it on until you figure

out whether and when you can see Dr. Khoury, unless it is causing her skin

breakdown or some other issue like that.

I hope everything works out for you, and don't hesitate to contact Dr.

Khoury's team or Erie first thing on Monday. Good luck with everything and

please let us know what happens.

Best, Abigail

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Abigail,

Do you have a mailing address and/or email address where I could contact Dr. K?

I'd like to send him occasional cards and pics of Ian.

Thanks!

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Misty,

I would DEFINITELY call Birmingham first thing on Monday morning. His

nurse/assistant, who does all his arrangements, is , and you can

have her paged through the hospital, if you want.

As far as Dr. Khoury, he is really the greatest. He is super nice, a great

listener and communicator, plus he has such good judgment, he is a wonderful

innovator and has amazing skill.

As far as insurance, we have an HMO, so I had to get out of network

authorization, which took an original denial and then an appeal,which was

approved. It took longer than it should have, but I imagine that varies from

insurance to insurance. If you have a PPO, then you don't need authorization but

can pay a percentage out of pocket for the cost- so in some ways it is much

easier. We had to pay for the airplane and hotel, and since my husband, and I

came with Nadia, that turned out to be pretty pricey (Birmingham is not exactly

a hub!!)- but it sounds as if you will be able to drive, so that shouldn't be as

much of an issue.

As far as Nadia's story: she was diagnosed at 13 months with 30+ degree curve

standing, and about a 30 RVAD. We went to SLC 2 times for casts: at 15.5 months

and then 18.5 months, Unfortunately we had a horrible experience there, but I

know lots of people are really happy with their care, so hopefully ours was an

exception. Anyway, we moved to Erie for treatment and have had Dr. Khoury ever

since. We couldn't have been happier! At 19 months in Erie, she was 22 degrees

laying down (they do their xrays differently in Erie). I think by now she has

had 9 casts, acouple had to be cut off due to skin issues. In June she was 2

years 10 months when we had her last cast in Birmingham and is down to 8 degrees

or better supine (as I reported in this thread originally).

So it sounds as if your daughter was started in treatment at about the same

time as Nadia was. If you have any more questions, please do not hesitate to

ask. I don't really know the answer to your question as to whether to cut off

the cast or not. I imagine it might make sense to keep it on until you figure

out whether and when you can see Dr. Khoury, unless it is causing her skin

breakdown or some other issue like that.

I hope everything works out for you, and don't hesitate to contact Dr.

Khoury's team or Erie first thing on Monday. Good luck with everything and

please let us know what happens.

Best, Abigail

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Thanks for writing back. We are definately at a point where we have some tough

decisions to make. Do you have a number to call, to get in touch with

? Also, since Dr. Khoury is new in Birmingham, is the wait time to get in

with him short, or is he already booked up with patients? If we make the

decision to switch Doctors we want to act as soon as we can.

Thanks for any help you can give.

Misty and Donnie

Abigail Schein wrote:

Hi Misty,

I would DEFINITELY call Birmingham first thing on Monday morning. His

nurse/assistant, who does all his arrangements, is , and you can

have her paged through the hospital, if you want.

As far as Dr. Khoury, he is really the greatest. He is super nice, a great

listener and communicator, plus he has such good judgment, he is a wonderful

innovator and has amazing skill.

As far as insurance, we have an HMO, so I had to get out of network

authorization, which took an original denial and then an appeal,which was

approved. It took longer than it should have, but I imagine that varies from

insurance to insurance. If you have a PPO, then you don't need authorization but

can pay a percentage out of pocket for the cost- so in some ways it is much

easier. We had to pay for the airplane and hotel, and since my husband, and I

came with Nadia, that turned out to be pretty pricey (Birmingham is not exactly

a hub!!)- but it sounds as if you will be able to drive, so that shouldn't be as

much of an issue.

As far as Nadia's story: she was diagnosed at 13 months with 30+ degree curve

standing, and about a 30 RVAD. We went to SLC 2 times for casts: at 15.5 months

and then 18.5 months, Unfortunately we had a horrible experience there, but I

know lots of people are really happy with their care, so hopefully ours was an

exception. Anyway, we moved to Erie for treatment and have had Dr. Khoury ever

since. We couldn't have been happier! At 19 months in Erie, she was 22 degrees

laying down (they do their xrays differently in Erie). I think by now she has

had 9 casts, acouple had to be cut off due to skin issues. In June she was 2

years 10 months when we had her last cast in Birmingham and is down to 8 degrees

or better supine (as I reported in this thread originally).

So it sounds as if your daughter was started in treatment at about the same time

as Nadia was. If you have any more questions, please do not hesitate to ask. I

don't really know the answer to your question as to whether to cut off the cast

or not. I imagine it might make sense to keep it on until you figure out whether

and when you can see Dr. Khoury, unless it is causing her skin breakdown or some

other issue like that.

I hope everything works out for you, and don't hesitate to contact Dr. Khoury's

team or Erie first thing on Monday. Good luck with everything and please let us

know what happens.

Best, Abigail

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Thanks for writing back. We are definately at a point where we have some tough

decisions to make. Do you have a number to call, to get in touch with

? Also, since Dr. Khoury is new in Birmingham, is the wait time to get in

with him short, or is he already booked up with patients? If we make the

decision to switch Doctors we want to act as soon as we can.

Thanks for any help you can give.

Misty and Donnie

Abigail Schein wrote:

Hi Misty,

I would DEFINITELY call Birmingham first thing on Monday morning. His

nurse/assistant, who does all his arrangements, is , and you can

have her paged through the hospital, if you want.

As far as Dr. Khoury, he is really the greatest. He is super nice, a great

listener and communicator, plus he has such good judgment, he is a wonderful

innovator and has amazing skill.

As far as insurance, we have an HMO, so I had to get out of network

authorization, which took an original denial and then an appeal,which was

approved. It took longer than it should have, but I imagine that varies from

insurance to insurance. If you have a PPO, then you don't need authorization but

can pay a percentage out of pocket for the cost- so in some ways it is much

easier. We had to pay for the airplane and hotel, and since my husband, and I

came with Nadia, that turned out to be pretty pricey (Birmingham is not exactly

a hub!!)- but it sounds as if you will be able to drive, so that shouldn't be as

much of an issue.

As far as Nadia's story: she was diagnosed at 13 months with 30+ degree curve

standing, and about a 30 RVAD. We went to SLC 2 times for casts: at 15.5 months

and then 18.5 months, Unfortunately we had a horrible experience there, but I

know lots of people are really happy with their care, so hopefully ours was an

exception. Anyway, we moved to Erie for treatment and have had Dr. Khoury ever

since. We couldn't have been happier! At 19 months in Erie, she was 22 degrees

laying down (they do their xrays differently in Erie). I think by now she has

had 9 casts, acouple had to be cut off due to skin issues. In June she was 2

years 10 months when we had her last cast in Birmingham and is down to 8 degrees

or better supine (as I reported in this thread originally).

So it sounds as if your daughter was started in treatment at about the same time

as Nadia was. If you have any more questions, please do not hesitate to ask. I

don't really know the answer to your question as to whether to cut off the cast

or not. I imagine it might make sense to keep it on until you figure out whether

and when you can see Dr. Khoury, unless it is causing her skin breakdown or some

other issue like that.

I hope everything works out for you, and don't hesitate to contact Dr. Khoury's

team or Erie first thing on Monday. Good luck with everything and please let us

know what happens.

Best, Abigail

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Thanks for writing back. We are definately at a point where we have some tough

decisions to make. Do you have a number to call, to get in touch with

? Also, since Dr. Khoury is new in Birmingham, is the wait time to get in

with him short, or is he already booked up with patients? If we make the

decision to switch Doctors we want to act as soon as we can.

Thanks for any help you can give.

Misty and Donnie

Abigail Schein wrote:

Hi Misty,

I would DEFINITELY call Birmingham first thing on Monday morning. His

nurse/assistant, who does all his arrangements, is , and you can

have her paged through the hospital, if you want.

As far as Dr. Khoury, he is really the greatest. He is super nice, a great

listener and communicator, plus he has such good judgment, he is a wonderful

innovator and has amazing skill.

As far as insurance, we have an HMO, so I had to get out of network

authorization, which took an original denial and then an appeal,which was

approved. It took longer than it should have, but I imagine that varies from

insurance to insurance. If you have a PPO, then you don't need authorization but

can pay a percentage out of pocket for the cost- so in some ways it is much

easier. We had to pay for the airplane and hotel, and since my husband, and I

came with Nadia, that turned out to be pretty pricey (Birmingham is not exactly

a hub!!)- but it sounds as if you will be able to drive, so that shouldn't be as

much of an issue.

As far as Nadia's story: she was diagnosed at 13 months with 30+ degree curve

standing, and about a 30 RVAD. We went to SLC 2 times for casts: at 15.5 months

and then 18.5 months, Unfortunately we had a horrible experience there, but I

know lots of people are really happy with their care, so hopefully ours was an

exception. Anyway, we moved to Erie for treatment and have had Dr. Khoury ever

since. We couldn't have been happier! At 19 months in Erie, she was 22 degrees

laying down (they do their xrays differently in Erie). I think by now she has

had 9 casts, acouple had to be cut off due to skin issues. In June she was 2

years 10 months when we had her last cast in Birmingham and is down to 8 degrees

or better supine (as I reported in this thread originally).

So it sounds as if your daughter was started in treatment at about the same time

as Nadia was. If you have any more questions, please do not hesitate to ask. I

don't really know the answer to your question as to whether to cut off the cast

or not. I imagine it might make sense to keep it on until you figure out whether

and when you can see Dr. Khoury, unless it is causing her skin breakdown or some

other issue like that.

I hope everything works out for you, and don't hesitate to contact Dr. Khoury's

team or Erie first thing on Monday. Good luck with everything and please let us

know what happens.

Best, Abigail

---------------------------------

Pinpoint customers who are looking for what you sell.

[Guest guest]

Hi ,

We are going to call Dr. Khoury Monday...FIRST THING!!!

When our Doctor pulled up the infantilescoliosis.org web sit he actually pulle

up Ian's story and we read it there in his office...neat huh?!?!? i am so glad

that you, and everyone else, took the time to post the story and experience of

your children! THANKS!!!

Misty & Haley

Claflin wrote:

Misty,

I just wanted to jump in and say how wonderful I think Dr. Khoury is. He treated

Ian from the time of his diagnosing up until he left Erie in May. I think he is

just amazing. Ian started at 43 degrees and now is essentially straight. I also

like him because he really listens to me, treats me like I know what I am

talking about and explains EVERYTHING. He is very easy to talk to which was not

what we encountered with the ortho here in VA. Anyway, if you end up with him, I

think you will be very happy that you chose him.

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Abigail, My name is Misty, i am new here. We live in , Mississipi and

our daughter is 15 mos old and currently in her 2nd cast. Her curve is still

progessing, so after reading here lately and looking into infantilescoliosis.org

we know we need to take some other source of action...FAST!!! We do not have

much time left before that critical age of 2! Soooo, we read your update about

Birmingham, AL and were excited b/c it is only 4 hours from us. i was hoping to

get as much info about Dr. Khoury as possible and your personal opinions of him.

I hope I have this right, You followed him to AL, from Erie? Has he been Nadia's

Dr. from the beginning? What was her situation to begin with....ANY info u can

give us would be great...here is our dilemma...Our daughter is scheduled to have

her cast taken off Monday and a new cast will be put on Thursday 7/19. We DO NOT

lnow what to do about next weeks tx plan b/c if we eventually could have Dr.

Khoury see her she would

need to be out of her cast, right? So, we do not know if keeping her in a cast

that is not helping her would be worse, or even the same as her not being in one

at all.

We do not know what our next step should be....Call Dr. Khoury's office Monday

and hope we could see him ASAP (does anyone know how long it usually takes?) Or

should we continue w/the tx oplan for next week and then try to see him?!?!?

Anyone with any guidance or advice please share.

Also, how does The Children's Hospital in Birmingham, AL costs compare w/ a

Shriners Hospital (as far as what I would have to pay?)

zimmyshine wrote:

Hi all, Sorry for the great delay on reporting about our experience

in AL with Dr. Khoury, but I'm expecting in August, and it's been

changed to any day now, as I am on bedrest, so I guess I'm pretty

distracted with a million things.

Anyway, we really liked the experience in AL. We were down there for

a 6/19 casting. Dr. Khoury did not have the new Mehta table, but he

assured us that he would be able to get the same results with the

table he had, as he had used this kind of table for two years before

he had the new kind in Erie. We also got the gortex waterproof liner

on the inside. because of my pregnancy, he encouraged us to go for

it now rather than later, and I trust Dr. Khoury almost blindly, so

we did.

So, Nadia was out of her cast for a week as in the past she had some

skin issues. We had a terrible experience at Boston Children's

Hospital with the xray tech. They gave us the biggest deal about

using lead over her thyroid. that took forever. Then, she took the

xray while Nadia was moving even though we told her not to. The xray

was a waste and had to be repeated down in AL.

So, out of cast for a week, Nadia was 8 degrees supine, down from 9

degrees last time. Dr. Khoury thought it might even have been less

than 8 degrees because of the distortion from wedging. He got her

down to 0 degrees in cast supine again. He said he struggled a bit

with the gortex since he had not used it before, and since I later

found out that the ortho tech gave him the wrong form- apparently

there is a sleeve or shirt or something that he should have had

available, but he had to struggle with the roll. So now I am kicking

myself, but I guess it was out of my control. Still, the gortex is

awesome!!!! And Nadia can swim, and no skin issues so far.

So he thinks this could be Nadia's last cast and that he would like

to move her into a nighttime bending brace after we remove it in 3-4

months, with nothing during the day, next time. He is still thinking

about it, but he shared his thoughts with us. What do you all know

about that???!!!!!

Another thing that was really great was the anesthesiologist. I

showed them the paper about the animal data, and they were thrilled

that I brought it up. The first anesthesiologist was not aware, but

then the chief came in and had been part of the meetings with the FDA

and gave a lot of reassurance that the would not change any practice

based on the article. He gave a zillion references of other articles

and anesthesiologists, he personally took care of our daughter and

jsut was a wonderful presence.

Finally, the logistics... Because the new table was not in we were

in the main hospital, not the Hospital " South " , so things will be

different from here on out. But it was billed as aday surgery, the

nurses were so nice, as well as the play therapists. There was a

shuttle from the hotel, and luckily we got the Mc House

rate since RMH was full- by the way, they are opening up a brand new

one, which should be available by now- it looked beautiful. The

hotel was ok- Best Western Medical Center Inn- but the nice thing was

that it had a pool. We ended up flying into Atlanta and driving to

Birmingham. The whole adventure cost an arm and a leg, but we were

so thrilled to continue with Dr. Khoury. He seemed really happy.

If anyone has any questions please do not hesitate to ask. I

apologize that i am somtimes on again- off again sometimes, but

probably will be a rapt audience until the new baby comes!!!

I'm also curious about whether Geneva or any of the other kids who

have had the gortex, had a shirt or sleeve in her casting experience,

and what that was like!!!!)

All the best and Take care, Abigail

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

Hi ,

We are going to call Dr. Khoury Monday...FIRST THING!!!

When our Doctor pulled up the infantilescoliosis.org web sit he actually pulle

up Ian's story and we read it there in his office...neat huh?!?!? i am so glad

that you, and everyone else, took the time to post the story and experience of

your children! THANKS!!!

Misty & Haley

Claflin wrote:

Misty,

I just wanted to jump in and say how wonderful I think Dr. Khoury is. He treated

Ian from the time of his diagnosing up until he left Erie in May. I think he is

just amazing. Ian started at 43 degrees and now is essentially straight. I also

like him because he really listens to me, treats me like I know what I am

talking about and explains EVERYTHING. He is very easy to talk to which was not

what we encountered with the ortho here in VA. Anyway, if you end up with him, I

think you will be very happy that you chose him.

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Abigail, My name is Misty, i am new here. We live in , Mississipi and

our daughter is 15 mos old and currently in her 2nd cast. Her curve is still

progessing, so after reading here lately and looking into infantilescoliosis.org

we know we need to take some other source of action...FAST!!! We do not have

much time left before that critical age of 2! Soooo, we read your update about

Birmingham, AL and were excited b/c it is only 4 hours from us. i was hoping to

get as much info about Dr. Khoury as possible and your personal opinions of him.

I hope I have this right, You followed him to AL, from Erie? Has he been Nadia's

Dr. from the beginning? What was her situation to begin with....ANY info u can

give us would be great...here is our dilemma...Our daughter is scheduled to have

her cast taken off Monday and a new cast will be put on Thursday 7/19. We DO NOT

lnow what to do about next weeks tx plan b/c if we eventually could have Dr.

Khoury see her she would

need to be out of her cast, right? So, we do not know if keeping her in a cast

that is not helping her would be worse, or even the same as her not being in one

at all.

We do not know what our next step should be....Call Dr. Khoury's office Monday

and hope we could see him ASAP (does anyone know how long it usually takes?) Or

should we continue w/the tx oplan for next week and then try to see him?!?!?

Anyone with any guidance or advice please share.

Also, how does The Children's Hospital in Birmingham, AL costs compare w/ a

Shriners Hospital (as far as what I would have to pay?)

zimmyshine wrote:

Hi all, Sorry for the great delay on reporting about our experience

in AL with Dr. Khoury, but I'm expecting in August, and it's been

changed to any day now, as I am on bedrest, so I guess I'm pretty

distracted with a million things.

Anyway, we really liked the experience in AL. We were down there for

a 6/19 casting. Dr. Khoury did not have the new Mehta table, but he

assured us that he would be able to get the same results with the

table he had, as he had used this kind of table for two years before

he had the new kind in Erie. We also got the gortex waterproof liner

on the inside. because of my pregnancy, he encouraged us to go for

it now rather than later, and I trust Dr. Khoury almost blindly, so

we did.

So, Nadia was out of her cast for a week as in the past she had some

skin issues. We had a terrible experience at Boston Children's

Hospital with the xray tech. They gave us the biggest deal about

using lead over her thyroid. that took forever. Then, she took the

xray while Nadia was moving even though we told her not to. The xray

was a waste and had to be repeated down in AL.

So, out of cast for a week, Nadia was 8 degrees supine, down from 9

degrees last time. Dr. Khoury thought it might even have been less

than 8 degrees because of the distortion from wedging. He got her

down to 0 degrees in cast supine again. He said he struggled a bit

with the gortex since he had not used it before, and since I later

found out that the ortho tech gave him the wrong form- apparently

there is a sleeve or shirt or something that he should have had

available, but he had to struggle with the roll. So now I am kicking

myself, but I guess it was out of my control. Still, the gortex is

awesome!!!! And Nadia can swim, and no skin issues so far.

So he thinks this could be Nadia's last cast and that he would like

to move her into a nighttime bending brace after we remove it in 3-4

months, with nothing during the day, next time. He is still thinking

about it, but he shared his thoughts with us. What do you all know

about that???!!!!!

Another thing that was really great was the anesthesiologist. I

showed them the paper about the animal data, and they were thrilled

that I brought it up. The first anesthesiologist was not aware, but

then the chief came in and had been part of the meetings with the FDA

and gave a lot of reassurance that the would not change any practice

based on the article. He gave a zillion references of other articles

and anesthesiologists, he personally took care of our daughter and

jsut was a wonderful presence.

Finally, the logistics... Because the new table was not in we were

in the main hospital, not the Hospital " South " , so things will be

different from here on out. But it was billed as aday surgery, the

nurses were so nice, as well as the play therapists. There was a

shuttle from the hotel, and luckily we got the Mc House

rate since RMH was full- by the way, they are opening up a brand new

one, which should be available by now- it looked beautiful. The

hotel was ok- Best Western Medical Center Inn- but the nice thing was

that it had a pool. We ended up flying into Atlanta and driving to

Birmingham. The whole adventure cost an arm and a leg, but we were

so thrilled to continue with Dr. Khoury. He seemed really happy.

If anyone has any questions please do not hesitate to ask. I

apologize that i am somtimes on again- off again sometimes, but

probably will be a rapt audience until the new baby comes!!!

I'm also curious about whether Geneva or any of the other kids who

have had the gortex, had a shirt or sleeve in her casting experience,

and what that was like!!!!)

All the best and Take care, Abigail

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

Hi ,

We are going to call Dr. Khoury Monday...FIRST THING!!!

When our Doctor pulled up the infantilescoliosis.org web sit he actually pulle

up Ian's story and we read it there in his office...neat huh?!?!? i am so glad

that you, and everyone else, took the time to post the story and experience of

your children! THANKS!!!

Misty & Haley

Claflin wrote:

Misty,

I just wanted to jump in and say how wonderful I think Dr. Khoury is. He treated

Ian from the time of his diagnosing up until he left Erie in May. I think he is

just amazing. Ian started at 43 degrees and now is essentially straight. I also

like him because he really listens to me, treats me like I know what I am

talking about and explains EVERYTHING. He is very easy to talk to which was not

what we encountered with the ortho here in VA. Anyway, if you end up with him, I

think you will be very happy that you chose him.

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Abigail, My name is Misty, i am new here. We live in , Mississipi and

our daughter is 15 mos old and currently in her 2nd cast. Her curve is still

progessing, so after reading here lately and looking into infantilescoliosis.org

we know we need to take some other source of action...FAST!!! We do not have

much time left before that critical age of 2! Soooo, we read your update about

Birmingham, AL and were excited b/c it is only 4 hours from us. i was hoping to

get as much info about Dr. Khoury as possible and your personal opinions of him.

I hope I have this right, You followed him to AL, from Erie? Has he been Nadia's

Dr. from the beginning? What was her situation to begin with....ANY info u can

give us would be great...here is our dilemma...Our daughter is scheduled to have

her cast taken off Monday and a new cast will be put on Thursday 7/19. We DO NOT

lnow what to do about next weeks tx plan b/c if we eventually could have Dr.

Khoury see her she would

need to be out of her cast, right? So, we do not know if keeping her in a cast

that is not helping her would be worse, or even the same as her not being in one

at all.

We do not know what our next step should be....Call Dr. Khoury's office Monday

and hope we could see him ASAP (does anyone know how long it usually takes?) Or

should we continue w/the tx oplan for next week and then try to see him?!?!?

Anyone with any guidance or advice please share.

Also, how does The Children's Hospital in Birmingham, AL costs compare w/ a

Shriners Hospital (as far as what I would have to pay?)

zimmyshine wrote:

Hi all, Sorry for the great delay on reporting about our experience

in AL with Dr. Khoury, but I'm expecting in August, and it's been

changed to any day now, as I am on bedrest, so I guess I'm pretty

distracted with a million things.

Anyway, we really liked the experience in AL. We were down there for

a 6/19 casting. Dr. Khoury did not have the new Mehta table, but he

assured us that he would be able to get the same results with the

table he had, as he had used this kind of table for two years before

he had the new kind in Erie. We also got the gortex waterproof liner

on the inside. because of my pregnancy, he encouraged us to go for

it now rather than later, and I trust Dr. Khoury almost blindly, so

we did.

So, Nadia was out of her cast for a week as in the past she had some

skin issues. We had a terrible experience at Boston Children's

Hospital with the xray tech. They gave us the biggest deal about

using lead over her thyroid. that took forever. Then, she took the

xray while Nadia was moving even though we told her not to. The xray

was a waste and had to be repeated down in AL.

So, out of cast for a week, Nadia was 8 degrees supine, down from 9

degrees last time. Dr. Khoury thought it might even have been less

than 8 degrees because of the distortion from wedging. He got her

down to 0 degrees in cast supine again. He said he struggled a bit

with the gortex since he had not used it before, and since I later

found out that the ortho tech gave him the wrong form- apparently

there is a sleeve or shirt or something that he should have had

available, but he had to struggle with the roll. So now I am kicking

myself, but I guess it was out of my control. Still, the gortex is

awesome!!!! And Nadia can swim, and no skin issues so far.

So he thinks this could be Nadia's last cast and that he would like

to move her into a nighttime bending brace after we remove it in 3-4

months, with nothing during the day, next time. He is still thinking

about it, but he shared his thoughts with us. What do you all know

about that???!!!!!

Another thing that was really great was the anesthesiologist. I

showed them the paper about the animal data, and they were thrilled

that I brought it up. The first anesthesiologist was not aware, but

then the chief came in and had been part of the meetings with the FDA

and gave a lot of reassurance that the would not change any practice

based on the article. He gave a zillion references of other articles

and anesthesiologists, he personally took care of our daughter and

jsut was a wonderful presence.

Finally, the logistics... Because the new table was not in we were

in the main hospital, not the Hospital " South " , so things will be

different from here on out. But it was billed as aday surgery, the

nurses were so nice, as well as the play therapists. There was a

shuttle from the hotel, and luckily we got the Mc House

rate since RMH was full- by the way, they are opening up a brand new

one, which should be available by now- it looked beautiful. The

hotel was ok- Best Western Medical Center Inn- but the nice thing was

that it had a pool. We ended up flying into Atlanta and driving to

Birmingham. The whole adventure cost an arm and a leg, but we were

so thrilled to continue with Dr. Khoury. He seemed really happy.

If anyone has any questions please do not hesitate to ask. I

apologize that i am somtimes on again- off again sometimes, but

probably will be a rapt audience until the new baby comes!!!

I'm also curious about whether Geneva or any of the other kids who

have had the gortex, had a shirt or sleeve in her casting experience,

and what that was like!!!!)

All the best and Take care, Abigail

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

That IS cool! It feels good knowing that Ian's story could help someone else

out. I actually need to update his story on the website now that he is straight

and in his brace .

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Abigail, My name is Misty, i am new here. We live in , Mississipi

and our daughter is 15 mos old and currently in her 2nd cast. Her curve is still

progessing, so after reading here lately and looking into infantilescoliosis.org

we know we need to take some other source of action...FAST!!! We do not have

much time left before that critical age of 2! Soooo, we read your update about

Birmingham, AL and were excited b/c it is only 4 hours from us. i was hoping to

get as much info about Dr. Khoury as possible and your personal opinions of him.

I hope I have this right, You followed him to AL, from Erie? Has he been Nadia's

Dr. from the beginning? What was her situation to begin with....ANY info u can

give us would be great...here is our dilemma...Our daughter is scheduled to have

her cast taken off Monday and a new cast will be put on Thursday 7/19. We DO NOT

lnow what to do about next weeks tx plan b/c if we eventually could have Dr.

Khoury see her she would

need to be out of her cast, right? So, we do not know if keeping her in a cast

that is not helping her would be worse, or even the same as her not being in one

at all.

We do not know what our next step should be....Call Dr. Khoury's office Monday

and hope we could see him ASAP (does anyone know how long it usually takes?) Or

should we continue w/the tx oplan for next week and then try to see him?!?!?

Anyone with any guidance or advice please share.

Also, how does The Children's Hospital in Birmingham, AL costs compare w/ a

Shriners Hospital (as far as what I would have to pay?)

zimmyshine wrote:

Hi all, Sorry for the great delay on reporting about our experience

in AL with Dr. Khoury, but I'm expecting in August, and it's been

changed to any day now, as I am on bedrest, so I guess I'm pretty

distracted with a million things.

Anyway, we really liked the experience in AL. We were down there for

a 6/19 casting. Dr. Khoury did not have the new Mehta table, but he

assured us that he would be able to get the same results with the

table he had, as he had used this kind of table for two years before

he had the new kind in Erie. We also got the gortex waterproof liner

on the inside. because of my pregnancy, he encouraged us to go for

it now rather than later, and I trust Dr. Khoury almost blindly, so

we did.

So, Nadia was out of her cast for a week as in the past she had some

skin issues. We had a terrible experience at Boston Children's

Hospital with the xray tech. They gave us the biggest deal about

using lead over her thyroid. that took forever. Then, she took the

xray while Nadia was moving even though we told her not to. The xray

was a waste and had to be repeated down in AL.

So, out of cast for a week, Nadia was 8 degrees supine, down from 9

degrees last time. Dr. Khoury thought it might even have been less

than 8 degrees because of the distortion from wedging. He got her

down to 0 degrees in cast supine again. He said he struggled a bit

with the gortex since he had not used it before, and since I later

found out that the ortho tech gave him the wrong form- apparently

there is a sleeve or shirt or something that he should have had

available, but he had to struggle with the roll. So now I am kicking

myself, but I guess it was out of my control. Still, the gortex is

awesome!!!! And Nadia can swim, and no skin issues so far.

So he thinks this could be Nadia's last cast and that he would like

to move her into a nighttime bending brace after we remove it in 3-4

months, with nothing during the day, next time. He is still thinking

about it, but he shared his thoughts with us. What do you all know

about that???!!!!!

Another thing that was really great was the anesthesiologist. I

showed them the paper about the animal data, and they were thrilled

that I brought it up. The first anesthesiologist was not aware, but

then the chief came in and had been part of the meetings with the FDA

and gave a lot of reassurance that the would not change any practice

based on the article. He gave a zillion references of other articles

and anesthesiologists, he personally took care of our daughter and

jsut was a wonderful presence.

Finally, the logistics... Because the new table was not in we were

in the main hospital, not the Hospital " South " , so things will be

different from here on out. But it was billed as aday surgery, the

nurses were so nice, as well as the play therapists. There was a

shuttle from the hotel, and luckily we got the Mc House

rate since RMH was full- by the way, they are opening up a brand new

one, which should be available by now- it looked beautiful. The

hotel was ok- Best Western Medical Center Inn- but the nice thing was

that it had a pool. We ended up flying into Atlanta and driving to

Birmingham. The whole adventure cost an arm and a leg, but we were

so thrilled to continue with Dr. Khoury. He seemed really happy.

If anyone has any questions please do not hesitate to ask. I

apologize that i am somtimes on again- off again sometimes, but

probably will be a rapt audience until the new baby comes!!!

I'm also curious about whether Geneva or any of the other kids who

have had the gortex, had a shirt or sleeve in her casting experience,

and what that was like!!!!)

All the best and Take care, Abigail

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

That IS cool! It feels good knowing that Ian's story could help someone else

out. I actually need to update his story on the website now that he is straight

and in his brace .

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Abigail, My name is Misty, i am new here. We live in , Mississipi

and our daughter is 15 mos old and currently in her 2nd cast. Her curve is still

progessing, so after reading here lately and looking into infantilescoliosis.org

we know we need to take some other source of action...FAST!!! We do not have

much time left before that critical age of 2! Soooo, we read your update about

Birmingham, AL and were excited b/c it is only 4 hours from us. i was hoping to

get as much info about Dr. Khoury as possible and your personal opinions of him.

I hope I have this right, You followed him to AL, from Erie? Has he been Nadia's

Dr. from the beginning? What was her situation to begin with....ANY info u can

give us would be great...here is our dilemma...Our daughter is scheduled to have

her cast taken off Monday and a new cast will be put on Thursday 7/19. We DO NOT

lnow what to do about next weeks tx plan b/c if we eventually could have Dr.

Khoury see her she would

need to be out of her cast, right? So, we do not know if keeping her in a cast

that is not helping her would be worse, or even the same as her not being in one

at all.

We do not know what our next step should be....Call Dr. Khoury's office Monday

and hope we could see him ASAP (does anyone know how long it usually takes?) Or

should we continue w/the tx oplan for next week and then try to see him?!?!?

Anyone with any guidance or advice please share.

Also, how does The Children's Hospital in Birmingham, AL costs compare w/ a

Shriners Hospital (as far as what I would have to pay?)

zimmyshine wrote:

Hi all, Sorry for the great delay on reporting about our experience

in AL with Dr. Khoury, but I'm expecting in August, and it's been

changed to any day now, as I am on bedrest, so I guess I'm pretty

distracted with a million things.

Anyway, we really liked the experience in AL. We were down there for

a 6/19 casting. Dr. Khoury did not have the new Mehta table, but he

assured us that he would be able to get the same results with the

table he had, as he had used this kind of table for two years before

he had the new kind in Erie. We also got the gortex waterproof liner

on the inside. because of my pregnancy, he encouraged us to go for

it now rather than later, and I trust Dr. Khoury almost blindly, so

we did.

So, Nadia was out of her cast for a week as in the past she had some

skin issues. We had a terrible experience at Boston Children's

Hospital with the xray tech. They gave us the biggest deal about

using lead over her thyroid. that took forever. Then, she took the

xray while Nadia was moving even though we told her not to. The xray

was a waste and had to be repeated down in AL.

So, out of cast for a week, Nadia was 8 degrees supine, down from 9

degrees last time. Dr. Khoury thought it might even have been less

than 8 degrees because of the distortion from wedging. He got her

down to 0 degrees in cast supine again. He said he struggled a bit

with the gortex since he had not used it before, and since I later

found out that the ortho tech gave him the wrong form- apparently

there is a sleeve or shirt or something that he should have had

available, but he had to struggle with the roll. So now I am kicking

myself, but I guess it was out of my control. Still, the gortex is

awesome!!!! And Nadia can swim, and no skin issues so far.

So he thinks this could be Nadia's last cast and that he would like

to move her into a nighttime bending brace after we remove it in 3-4

months, with nothing during the day, next time. He is still thinking

about it, but he shared his thoughts with us. What do you all know

about that???!!!!!

Another thing that was really great was the anesthesiologist. I

showed them the paper about the animal data, and they were thrilled

that I brought it up. The first anesthesiologist was not aware, but

then the chief came in and had been part of the meetings with the FDA

and gave a lot of reassurance that the would not change any practice

based on the article. He gave a zillion references of other articles

and anesthesiologists, he personally took care of our daughter and

jsut was a wonderful presence.

Finally, the logistics... Because the new table was not in we were

in the main hospital, not the Hospital " South " , so things will be

different from here on out. But it was billed as aday surgery, the

nurses were so nice, as well as the play therapists. There was a

shuttle from the hotel, and luckily we got the Mc House

rate since RMH was full- by the way, they are opening up a brand new

one, which should be available by now- it looked beautiful. The

hotel was ok- Best Western Medical Center Inn- but the nice thing was

that it had a pool. We ended up flying into Atlanta and driving to

Birmingham. The whole adventure cost an arm and a leg, but we were

so thrilled to continue with Dr. Khoury. He seemed really happy.

If anyone has any questions please do not hesitate to ask. I

apologize that i am somtimes on again- off again sometimes, but

probably will be a rapt audience until the new baby comes!!!

I'm also curious about whether Geneva or any of the other kids who

have had the gortex, had a shirt or sleeve in her casting experience,

and what that was like!!!!)

All the best and Take care, Abigail

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

That IS cool! It feels good knowing that Ian's story could help someone else

out. I actually need to update his story on the website now that he is straight

and in his brace .

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Hi Abigail, My name is Misty, i am new here. We live in , Mississipi

and our daughter is 15 mos old and currently in her 2nd cast. Her curve is still

progessing, so after reading here lately and looking into infantilescoliosis.org

we know we need to take some other source of action...FAST!!! We do not have

much time left before that critical age of 2! Soooo, we read your update about

Birmingham, AL and were excited b/c it is only 4 hours from us. i was hoping to

get as much info about Dr. Khoury as possible and your personal opinions of him.

I hope I have this right, You followed him to AL, from Erie? Has he been Nadia's

Dr. from the beginning? What was her situation to begin with....ANY info u can

give us would be great...here is our dilemma...Our daughter is scheduled to have

her cast taken off Monday and a new cast will be put on Thursday 7/19. We DO NOT

lnow what to do about next weeks tx plan b/c if we eventually could have Dr.

Khoury see her she would

need to be out of her cast, right? So, we do not know if keeping her in a cast

that is not helping her would be worse, or even the same as her not being in one

at all.

We do not know what our next step should be....Call Dr. Khoury's office Monday

and hope we could see him ASAP (does anyone know how long it usually takes?) Or

should we continue w/the tx oplan for next week and then try to see him?!?!?

Anyone with any guidance or advice please share.

Also, how does The Children's Hospital in Birmingham, AL costs compare w/ a

Shriners Hospital (as far as what I would have to pay?)

zimmyshine wrote:

Hi all, Sorry for the great delay on reporting about our experience

in AL with Dr. Khoury, but I'm expecting in August, and it's been

changed to any day now, as I am on bedrest, so I guess I'm pretty

distracted with a million things.

Anyway, we really liked the experience in AL. We were down there for

a 6/19 casting. Dr. Khoury did not have the new Mehta table, but he

assured us that he would be able to get the same results with the

table he had, as he had used this kind of table for two years before

he had the new kind in Erie. We also got the gortex waterproof liner

on the inside. because of my pregnancy, he encouraged us to go for

it now rather than later, and I trust Dr. Khoury almost blindly, so

we did.

So, Nadia was out of her cast for a week as in the past she had some

skin issues. We had a terrible experience at Boston Children's

Hospital with the xray tech. They gave us the biggest deal about

using lead over her thyroid. that took forever. Then, she took the

xray while Nadia was moving even though we told her not to. The xray

was a waste and had to be repeated down in AL.

So, out of cast for a week, Nadia was 8 degrees supine, down from 9

degrees last time. Dr. Khoury thought it might even have been less

than 8 degrees because of the distortion from wedging. He got her

down to 0 degrees in cast supine again. He said he struggled a bit

with the gortex since he had not used it before, and since I later

found out that the ortho tech gave him the wrong form- apparently

there is a sleeve or shirt or something that he should have had

available, but he had to struggle with the roll. So now I am kicking

myself, but I guess it was out of my control. Still, the gortex is

awesome!!!! And Nadia can swim, and no skin issues so far.

So he thinks this could be Nadia's last cast and that he would like

to move her into a nighttime bending brace after we remove it in 3-4

months, with nothing during the day, next time. He is still thinking

about it, but he shared his thoughts with us. What do you all know

about that???!!!!!

Another thing that was really great was the anesthesiologist. I

showed them the paper about the animal data, and they were thrilled

that I brought it up. The first anesthesiologist was not aware, but

then the chief came in and had been part of the meetings with the FDA

and gave a lot of reassurance that the would not change any practice

based on the article. He gave a zillion references of other articles

and anesthesiologists, he personally took care of our daughter and

jsut was a wonderful presence.

Finally, the logistics... Because the new table was not in we were

in the main hospital, not the Hospital " South " , so things will be

different from here on out. But it was billed as aday surgery, the

nurses were so nice, as well as the play therapists. There was a

shuttle from the hotel, and luckily we got the Mc House

rate since RMH was full- by the way, they are opening up a brand new

one, which should be available by now- it looked beautiful. The

hotel was ok- Best Western Medical Center Inn- but the nice thing was

that it had a pool. We ended up flying into Atlanta and driving to

Birmingham. The whole adventure cost an arm and a leg, but we were

so thrilled to continue with Dr. Khoury. He seemed really happy.

If anyone has any questions please do not hesitate to ask. I

apologize that i am somtimes on again- off again sometimes, but

probably will be a rapt audience until the new baby comes!!!

I'm also curious about whether Geneva or any of the other kids who

have had the gortex, had a shirt or sleeve in her casting experience,

and what that was like!!!!)

All the best and Take care, Abigail

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

-Thanks so much Abigail. That does make sense and thanks for taking

the time to explain it. I pulled out Matson's xrays and saw what you

were talking about. Congrats again on Nadia's great progress and keep

us posted on the new arrival. Take it easy.....

Steph

-- In infantile_scoliosis , Abigail Schein

wrote:

>

> Hi Steph,

> Thanks for the good wishes regarding the bedrest. So far so good!

>

> So, as far as the wedging: here is how I understand it.

Basically there's an expression " bones mold to the pressures put upon

them " . As far as our kids with scoliosis- who are bent to a side,

the pressure of that has caused the normally flat surfaces inbetween

the vertebrae to sort of wedge over time. I don't know if that makes

sense ( a picture is worth a million words). Hopefully over time,

with correction of the curve, the pressures will be removed and the

wedging should diminish or resolve. It probably will take a really

long time.

>

> Anyway, in Nadia's case, the wedging is still visible and may

make the angle of her curve seem a little bigger, based on the way

they draw the lines to measure angles. That is my understanding,

anyway.

>

> Hope that helps. Does anyone have any xrays online that can help

show this?

>

> Abigail

>

>

> ---------------------------------

> Don't be flakey. Get Yahoo! Mail for Mobile and

> always stay connected to friends.

>

>

[Guest guest]

-Thanks so much Abigail. That does make sense and thanks for taking

the time to explain it. I pulled out Matson's xrays and saw what you

were talking about. Congrats again on Nadia's great progress and keep

us posted on the new arrival. Take it easy.....

Steph

-- In infantile_scoliosis , Abigail Schein

wrote:

>

> Hi Steph,

> Thanks for the good wishes regarding the bedrest. So far so good!

>

> So, as far as the wedging: here is how I understand it.

Basically there's an expression " bones mold to the pressures put upon

them " . As far as our kids with scoliosis- who are bent to a side,

the pressure of that has caused the normally flat surfaces inbetween

the vertebrae to sort of wedge over time. I don't know if that makes

sense ( a picture is worth a million words). Hopefully over time,

with correction of the curve, the pressures will be removed and the

wedging should diminish or resolve. It probably will take a really

long time.

>

> Anyway, in Nadia's case, the wedging is still visible and may

make the angle of her curve seem a little bigger, based on the way

they draw the lines to measure angles. That is my understanding,

anyway.

>

> Hope that helps. Does anyone have any xrays online that can help

show this?

>

> Abigail

>

>

> ---------------------------------

> Don't be flakey. Get Yahoo! Mail for Mobile and

> always stay connected to friends.

>

>

[Guest guest]

-Thanks so much Abigail. That does make sense and thanks for taking

the time to explain it. I pulled out Matson's xrays and saw what you

were talking about. Congrats again on Nadia's great progress and keep

us posted on the new arrival. Take it easy.....

Steph

-- In infantile_scoliosis , Abigail Schein

wrote:

>

> Hi Steph,

> Thanks for the good wishes regarding the bedrest. So far so good!

>

> So, as far as the wedging: here is how I understand it.

Basically there's an expression " bones mold to the pressures put upon

them " . As far as our kids with scoliosis- who are bent to a side,

the pressure of that has caused the normally flat surfaces inbetween

the vertebrae to sort of wedge over time. I don't know if that makes

sense ( a picture is worth a million words). Hopefully over time,

with correction of the curve, the pressures will be removed and the

wedging should diminish or resolve. It probably will take a really

long time.

>

> Anyway, in Nadia's case, the wedging is still visible and may

make the angle of her curve seem a little bigger, based on the way

they draw the lines to measure angles. That is my understanding,

anyway.

>

> Hope that helps. Does anyone have any xrays online that can help

show this?

>

> Abigail

>

>

> ---------------------------------

> Don't be flakey. Get Yahoo! Mail for Mobile and

> always stay connected to friends.

>

>

[Guest guest]

Hi and Misty,

I do not have anything special, just the hospital address, but I imagine he'd

get anything you send him. Dr. K has never been big on email in my experience-

he has always preferred to have his emails " screened " by his coordinator. The

hospital address and phone number is: Children's Hospital. 1600 7th Avenue

South. Birmingham, Alabama 35233. . Again, his nurse's name is

. If you call the switchboard, I would just ask to be connected to

her line. If she does not answer directly, then you could have her paged

through the operator, too.

Hope that helps, Abigail

---------------------------------

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