Re: Back from Birmingham, AL

[Guest guest]

Thank you for sharing your experience.

Can you elaborate on the anesthesia comment? I am new to the group

and interested in what you're talking about.

Thanks,

Sandi

[Guest guest]

I am so glad to hear your update. I miss Dr. Khoury!!

I am very interested in this night time bending brace. What did Dr. K give as a

reasoning for using that over the traditional bracing? Keep us posted about

that!!

I am glad you had a good experience in Birmingham. If Ian was still going

through with casting, we definitely would have followed him there.

I do recall Dr. K telling me that they were having a hard time getting the AMIL

table, but he felt that he could modify whatever table they had there, so that

it would work just like the AMIL. I trust him...I am sure he knows what needs

to be done as he's been doing enough casting now to have had plenty of

experience as to what works and what does not.

Lastly, I am happy for Geneva! Sounds like she is doing awesome!!!

Noelle (12-2-01)

Ian (8-15-04)

Back from Birmingham, AL

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

[Guest guest]

Yes, I think I am out of the loop about the anesthesia as well. Can you give

more info?

Noelle (12-2-01)

Ian (8-15-04)

Re: Back from Birmingham, AL

Thank you for sharing your experience.

Can you elaborate on the anesthesia comment? I am new to the group

and interested in what you're talking about.

Thanks,

Sandi

[Guest guest]

Hi. Regarding the anesthesia, there was an article that came out in April in

Pediatric Anesthesiology about the long-term dangers of anesthesia, but it was

largely based on animal data, and it was also a meta-analysis, not a randomized

controlled study. So the bottom line is that the doctor did not think that

anesthesia practices should be altered based on it. But the thing is, it made a

lot of publicity in the lay literature, and that is laregely why the FDA had

special meetings about it, if I understand correctly. (Does anyone out there

have a link to the article, in case anyone is interested in seeing it?) Hope

that helps. Abigail

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

No need to miss a message. Get email on-the-go

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[Guest guest]

hi abigail,

i hope you are feeling okay being on bed-rest and this hot weather in ma (and

everywhere).

is this the article? it's in different article than you cited. i can post the

full article in pdf form on the group if this is the right one and people are

interested.

Anesth Analg. 2007 Mar;104(3):509-20.

Use of anesthetic agents in neonates and young children.

Mellon RD, Simone AF, Rappaport BA.

Division of Anesthesia, Analgesia, and Rheumatology Products, Office of Drug

Evaluation II, Center for Drug Evaluation and Research, Food and Drug

Administration, Department of Health and Human Services, Silver Spring, land

20993, USA.

BACKGROUND: Some drugs used for sedation and anesthesia produce

histopathologic central nervous system changes in juvenile animal models. These

observations have raised concerns regarding the use of these drugs in pediatric

patients. We summarized the findings in developing animals and describe the

steps that the Food and Drug Administration (FDA) and others are taking to

assess potential risks in pediatric patients. The FDA views this communication

as opening a dialog with the anesthesia community to address this issue.

METHODS: We reviewed the available animal studies literature examining the

potential neurotoxic effects of commonly used anesthetic drugs on the developing

brain. The search strategy involved crossing the keywords neurotoxic and

neuroapoptosis with the following general and specific terms: anesthetic,

N-methyl-d-aspartate (NMDA), ketamine, midazolam, lorazepam, fentanyl,

methadone, morphine, meperidine, isoflurane, nitrous oxide, sevoflurane,

halothane, en!

flurane, desflurane, propofol, etomidate, barbiturate, methoxyflurane, and

chloral hydrate. We summarized several studies sponsored by the FDA in rats and

monkeys, initially examining the potential for ketamine, as a prototypical

agent, to induce neurodegeneration in the developing brain. RESULTS: Numerous

animal studies in rodents indicate that NMDA receptor antagonists, including

ketamine, induce neurodegeneration in the developing brain. The effects of

ketamine are dose dependent. The data suggest that limiting exposure limits the

potential for neurodegeneration. There is also evidence that other general

anesthetics, such as isoflurane, can induce neurodegeneration in rodent models,

which may be exacerbated by concurrent administration of midazolam or nitrous

oxide. There are very few studies that have examined the potential functional

consequences of the neurodegeneration noted in the animal models. However, the

studies that have been reported suggest subtle, but prolonged!

, behavioral changes in rodents. Although the doses and durations of ketamine

exposure that resulted in neurodegeneration were slightly larger than those used

in the clinical setting, those associated with isoflurane were not. There are

insufficient human data to either support or refute the clinical applicability

of these findings. CONCLUSIONS: Animal studies suggest that neurodegeneration,

with possible cognitive sequelae, is a potential long-term risk of anesthetics

in neonatal and young pediatric patients. The existing nonclinical data

implicate not only NMDA-receptor antagonists, but also drugs that potentiate

gamma-aminobutyric acid signal transduction, as potentially neurotoxic to the

developing brain. The potential for the combination of drugs that have activity

at both receptor systems or that can induce more or less neurotoxicity is not

clear; however, recent nonclinical data suggest that some combinations may be

more neurotoxic than the individual components. The la!

ck of information to date precludes the ability to designate any one anesthetic

agent or regimen as safer than any other. Ongoing studies in juvenile animals

should provide additional information regarding the risks. The FDA anticipates

working with the anesthesia community and pharmaceutical industry to develop

strategies for further assessing the safety of anesthetics in neonates and young

children, and for providing data to guide clinicians in making the most informed

decisions possible when choosing anesthetic regimens for their pediatric

patients.

---- Original message ----

>Date: Wed, 11 Jul 2007 14:46:17 -0700 (PDT)

>

>Subject: Re: Back from Birmingham, AL

>To: infantile_scoliosis

>

> Hi. Regarding the anesthesia, there was an article

> that came out in April in Pediatric Anesthesiology

> about the long-term dangers of anesthesia, but it

> was largely based on animal data, and it was also a

> meta-analysis, not a randomized controlled study. So

> the bottom line is that the doctor did not think

> that anesthesia practices should be altered based on

> it. But the thing is, it made a lot of publicity in

> the lay literature, and that is laregely why the FDA

> had special meetings about it, if I understand

> correctly. (Does anyone out there have a link to the

> article, in case anyone is interested in seeing it?)

> Hope that helps. Abigail

>

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

> No need to miss a message. Get email on-the-go

> with Yahoo! Mail for Mobile. Get started.

>

> [Non-text portions of this message have been

> removed]

>

>

mom to lucas 5 1/2 yrs old with infantile scoliosis diagnosed at 18

mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 mos; tlso and

charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial

plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa; now in a

spinecor brace at 18o/6o from montreal.

and ruby (almost 3 yrs old and a handful!)

north of boston, ma

[Guest guest]

Abigail,

I am a little late getting to some emails, but wanted to say...........when we

contacted Dr. for a 2nd opinion on 's current treatment, he thought

things looked great, but I was still concerned about the table that ish

Rite is using. He told us that they would be able to get the same results.

He said for years they had been using the " old school " tables and got great

results.

I guess only time will tell.

I am glad you guys were able to follow Dr. K.

Take care,

Tasha

Mommy of twin boys- and 26mths

Fort Worth, Texas

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

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

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news,

photos & more.

[Guest guest]

Abigail,

I am a little late getting to some emails, but wanted to say...........when we

contacted Dr. for a 2nd opinion on 's current treatment, he thought

things looked great, but I was still concerned about the table that ish

Rite is using. He told us that they would be able to get the same results.

He said for years they had been using the " old school " tables and got great

results.

I guess only time will tell.

I am glad you guys were able to follow Dr. K.

Take care,

Tasha

Mommy of twin boys- and 26mths

Fort Worth, Texas

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

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

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news,

photos & more.

[Guest guest]

Abigail,

I am a little late getting to some emails, but wanted to say...........when we

contacted Dr. for a 2nd opinion on 's current treatment, he thought

things looked great, but I was still concerned about the table that ish

Rite is using. He told us that they would be able to get the same results.

He said for years they had been using the " old school " tables and got great

results.

I guess only time will tell.

I am glad you guys were able to follow Dr. K.

Take care,

Tasha

Mommy of twin boys- and 26mths

Fort Worth, Texas

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

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

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news,

photos & more.

[Guest guest]

Thanks, Deshea. The abstract you have there looks like a follow up article to

the one I saw, and it seems more up to date. I might have mis-remembered the

original reference, too. Thanks! Abigail

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

Pinpoint customers who are looking for what you sell.

[Guest guest]

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 Small Business.

[Guest guest]

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 Small Business.

[Guest guest]

Hey Misty,

I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who have had him

will agree. He is very trained by Mehta and has the equipment to do the casting.

He did Cole's last 2 casts in Erie. It is a blessing he has taken the treatment

to Alabama. If you can see him, your daughter will be in good hands.

As far as insurance/payment goes????? It is probably not free like Shriner's. If

you have really good insurance, maybe they would cover it? Otherwise, I'm not

sure how much out of pocket is. I'd call on Monday and see if you can speak with

Dr. Khoury or leave a message on his voice mail, or even talk to his nurse.

Best of luck.

michelle

Misty Dennis wrote: 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 Small Business.

[Guest guest]

Misty,

Definitely try calling Dr. Khoury on Monday. If you are not able to

go there for treatment if your insurance doesn't cover it etc, I

would definitely get in touch with Erie Shriners or SLC Shriners

because it sounds like the doc you are currently seeing for casting

is not doing Mehta casting, possibly why you are not seeing results

in cast. Shriners will even help out or refer you to places that can

help out with travel and lodging expenses if you have to come from

far away. They are really an amazing organization and the health care

teams are the best.

We were told by the docs in SLC that the most correction is usually

achieved with the first cast, so really you should have seen

improvement by now. If I were in your position I would probably go

ahead with the next cast and try to get into Dr. Khoury, or SLC

Shriners, or Erie Shriners ASAP and have them look at your daughters

in cast and out of cast xrays,and have them examine her and the cast

she is in. I am sure they will be able to tell why the cast isn't

working and come up with a better treatment plan for you. All

treatment at Shriners is free by the way! Hope that helps some. We

have to make such tough decisions in the treatment for our little

ones. We are all in this together! Keep us posted!

Steph

Tyler 4

Matson 16 months (dx 12/06 41 COBB 38 RVAD...in second cast from SLC)

Lily 5 months

In infantile_scoliosis , Baird

wrote:

>

> Hey Misty,

> I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who

have had him will agree. He is very trained by Mehta and has the

equipment to do the casting. He did Cole's last 2 casts in Erie. It

is a blessing he has taken the treatment to Alabama. If you can see

him, your daughter will be in good hands.

> As far as insurance/payment goes????? It is probably not free like

Shriner's. If you have really good insurance, maybe they would cover

it? Otherwise, I'm not sure how much out of pocket is. I'd call on

Monday and see if you can speak with Dr. Khoury or leave a message on

his voice mail, or even talk to his nurse.

> Best of luck.

> michelle

>

> Misty Dennis wrote:

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]

Misty,

Definitely try calling Dr. Khoury on Monday. If you are not able to

go there for treatment if your insurance doesn't cover it etc, I

would definitely get in touch with Erie Shriners or SLC Shriners

because it sounds like the doc you are currently seeing for casting

is not doing Mehta casting, possibly why you are not seeing results

in cast. Shriners will even help out or refer you to places that can

help out with travel and lodging expenses if you have to come from

far away. They are really an amazing organization and the health care

teams are the best.

We were told by the docs in SLC that the most correction is usually

achieved with the first cast, so really you should have seen

improvement by now. If I were in your position I would probably go

ahead with the next cast and try to get into Dr. Khoury, or SLC

Shriners, or Erie Shriners ASAP and have them look at your daughters

in cast and out of cast xrays,and have them examine her and the cast

she is in. I am sure they will be able to tell why the cast isn't

working and come up with a better treatment plan for you. All

treatment at Shriners is free by the way! Hope that helps some. We

have to make such tough decisions in the treatment for our little

ones. We are all in this together! Keep us posted!

Steph

Tyler 4

Matson 16 months (dx 12/06 41 COBB 38 RVAD...in second cast from SLC)

Lily 5 months

In infantile_scoliosis , Baird

wrote:

>

> Hey Misty,

> I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who

have had him will agree. He is very trained by Mehta and has the

equipment to do the casting. He did Cole's last 2 casts in Erie. It

is a blessing he has taken the treatment to Alabama. If you can see

him, your daughter will be in good hands.

> As far as insurance/payment goes????? It is probably not free like

Shriner's. If you have really good insurance, maybe they would cover

it? Otherwise, I'm not sure how much out of pocket is. I'd call on

Monday and see if you can speak with Dr. Khoury or leave a message on

his voice mail, or even talk to his nurse.

> Best of luck.

> michelle

>

> Misty Dennis wrote:

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]

Misty,

Definitely try calling Dr. Khoury on Monday. If you are not able to

go there for treatment if your insurance doesn't cover it etc, I

would definitely get in touch with Erie Shriners or SLC Shriners

because it sounds like the doc you are currently seeing for casting

is not doing Mehta casting, possibly why you are not seeing results

in cast. Shriners will even help out or refer you to places that can

help out with travel and lodging expenses if you have to come from

far away. They are really an amazing organization and the health care

teams are the best.

We were told by the docs in SLC that the most correction is usually

achieved with the first cast, so really you should have seen

improvement by now. If I were in your position I would probably go

ahead with the next cast and try to get into Dr. Khoury, or SLC

Shriners, or Erie Shriners ASAP and have them look at your daughters

in cast and out of cast xrays,and have them examine her and the cast

she is in. I am sure they will be able to tell why the cast isn't

working and come up with a better treatment plan for you. All

treatment at Shriners is free by the way! Hope that helps some. We

have to make such tough decisions in the treatment for our little

ones. We are all in this together! Keep us posted!

Steph

Tyler 4

Matson 16 months (dx 12/06 41 COBB 38 RVAD...in second cast from SLC)

Lily 5 months

In infantile_scoliosis , Baird

wrote:

>

> Hey Misty,

> I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who

have had him will agree. He is very trained by Mehta and has the

equipment to do the casting. He did Cole's last 2 casts in Erie. It

is a blessing he has taken the treatment to Alabama. If you can see

him, your daughter will be in good hands.

> As far as insurance/payment goes????? It is probably not free like

Shriner's. If you have really good insurance, maybe they would cover

it? Otherwise, I'm not sure how much out of pocket is. I'd call on

Monday and see if you can speak with Dr. Khoury or leave a message on

his voice mail, or even talk to his nurse.

> Best of luck.

> michelle

>

> Misty Dennis wrote:

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]

Abigail,

What a wonderful experience you guys had. Thank you for sharing your

story. That is so great about the gortex too, I hope we can try that

out for Matson's next cast. And how wonderful that Nadia will be into

a brace next....wonderful news!

Can I ask you about Nadia's wedging? Dr. D'Astous mentioned to us

after Matson's second cast that they are concerned with two of

vertebrae in particular that are wedging. He said they would look at

it again in Sept when he gets his 3rd cast....but I was wondering

what exactly this means and or any further insight.

Take care of yourself and that new little one arriving soon. I was on

bedrest with Matson in the hospital for 2 months, what a long

experience, but well worth it! Keep us all posted...

Take care,

Steph

Tyler 4

Matson 16 months (dx 12/06 COBB 41 RVAD 38...in 2nd cast from SLC)

Lily 5 months

-- In infantile_scoliosis , Baird

wrote:

>

> Hey Misty,

> I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who

have had him will agree. He is very trained by Mehta and has the

equipment to do the casting. He did Cole's last 2 casts in Erie. It

is a blessing he has taken the treatment to Alabama. If you can see

him, your daughter will be in good hands.

> As far as insurance/payment goes????? It is probably not free like

Shriner's. If you have really good insurance, maybe they would cover

it? Otherwise, I'm not sure how much out of pocket is. I'd call on

Monday and see if you can speak with Dr. Khoury or leave a message on

his voice mail, or even talk to his nurse.

> Best of luck.

> michelle

>

> Misty Dennis wrote:

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]

Abigail,

What a wonderful experience you guys had. Thank you for sharing your

story. That is so great about the gortex too, I hope we can try that

out for Matson's next cast. And how wonderful that Nadia will be into

a brace next....wonderful news!

Can I ask you about Nadia's wedging? Dr. D'Astous mentioned to us

after Matson's second cast that they are concerned with two of

vertebrae in particular that are wedging. He said they would look at

it again in Sept when he gets his 3rd cast....but I was wondering

what exactly this means and or any further insight.

Take care of yourself and that new little one arriving soon. I was on

bedrest with Matson in the hospital for 2 months, what a long

experience, but well worth it! Keep us all posted...

Take care,

Steph

Tyler 4

Matson 16 months (dx 12/06 COBB 41 RVAD 38...in 2nd cast from SLC)

Lily 5 months

-- In infantile_scoliosis , Baird

wrote:

>

> Hey Misty,

> I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who

have had him will agree. He is very trained by Mehta and has the

equipment to do the casting. He did Cole's last 2 casts in Erie. It

is a blessing he has taken the treatment to Alabama. If you can see

him, your daughter will be in good hands.

> As far as insurance/payment goes????? It is probably not free like

Shriner's. If you have really good insurance, maybe they would cover

it? Otherwise, I'm not sure how much out of pocket is. I'd call on

Monday and see if you can speak with Dr. Khoury or leave a message on

his voice mail, or even talk to his nurse.

> Best of luck.

> michelle

>

> Misty Dennis wrote:

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]

Abigail,

What a wonderful experience you guys had. Thank you for sharing your

story. That is so great about the gortex too, I hope we can try that

out for Matson's next cast. And how wonderful that Nadia will be into

a brace next....wonderful news!

Can I ask you about Nadia's wedging? Dr. D'Astous mentioned to us

after Matson's second cast that they are concerned with two of

vertebrae in particular that are wedging. He said they would look at

it again in Sept when he gets his 3rd cast....but I was wondering

what exactly this means and or any further insight.

Take care of yourself and that new little one arriving soon. I was on

bedrest with Matson in the hospital for 2 months, what a long

experience, but well worth it! Keep us all posted...

Take care,

Steph

Tyler 4

Matson 16 months (dx 12/06 COBB 41 RVAD 38...in 2nd cast from SLC)

Lily 5 months

-- In infantile_scoliosis , Baird

wrote:

>

> Hey Misty,

> I'm chiming in here. Dr. Khoury is TOP NOTCH!!! I'm sure all who

have had him will agree. He is very trained by Mehta and has the

equipment to do the casting. He did Cole's last 2 casts in Erie. It

is a blessing he has taken the treatment to Alabama. If you can see

him, your daughter will be in good hands.

> As far as insurance/payment goes????? It is probably not free like

Shriner's. If you have really good insurance, maybe they would cover

it? Otherwise, I'm not sure how much out of pocket is. I'd call on

Monday and see if you can speak with Dr. Khoury or leave a message on

his voice mail, or even talk to his nurse.

> Best of luck.

> michelle

>

> Misty Dennis wrote:

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 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 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 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 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 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 Tasha,

Regarding the table, Dr. Khoury said that the " new table " is easier, and he

will be getting one this month. He still felt, as it sounds Dr. did,

that he would do just as well on the old kind. I don't think he had anything

invested in saying that if he did not believe it, as he offered us to come after

the new table came in if we wanted. We would have if it hadn't been for my

pregnancy because Nadia really hadn't outgrown the cast she was in. I guess I

wouldn't worry about it too much, but having the " new table " is preferable to

the " old table " . That said, I wonder if he might have had better results with

the new table in combination with the challenge of using the gortex- that still

bothers me, but what can you do.

Abigail

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

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[Guest guest]

Hi Tasha,

Regarding the table, Dr. Khoury said that the " new table " is easier, and he

will be getting one this month. He still felt, as it sounds Dr. did,

that he would do just as well on the old kind. I don't think he had anything

invested in saying that if he did not believe it, as he offered us to come after

the new table came in if we wanted. We would have if it hadn't been for my

pregnancy because Nadia really hadn't outgrown the cast she was in. I guess I

wouldn't worry about it too much, but having the " new table " is preferable to

the " old table " . That said, I wonder if he might have had better results with

the new table in combination with the challenge of using the gortex- that still

bothers me, but what can you do.

Abigail

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

Shape Yahoo! in your own image. Join our Network Research Panel today!