Re: New to group 7 mo old dd recently dx with idiopathic infantile scoliosis 36deg

[Guest guest]

,

Welcome to the group! Although I'm sorry to hear that your daughter

has the unfortunate diagnosis we all share, I am relieved to hear how

young she is for the diagnosis and that you're already on the right

path to early intervention.

My son was diagnosed with a seventy degree curve at ten

months. We lost quite a bit of valuable time (two months) by seeing

two orthopaedic surgeons who did not believe in early intervention -

in fact, the common practice amongst them is to watch and wait. There

is always a chance a curve is not going to progress. However, the

measurement of the RVAD (rib vertebral angle - the angle at which the

rib goes into the spine - instead of being perpendicular, it is on a

slant) can help to determine that. A properly trained physician (in

the Mehta method of early intervention like we advocate here) will

help you to determine that number.

I would not waste precious time with local physicians, sadly. Most

just are unfamiliar with this rather rare diagnosis and have not seen

much in their practice. Because it is so rare, they are simply

misinformed (or ill informed) in the best way to treat - not just hold

or stabilize like has been their previous experience, but treat and

potentially cure these children of scoliosis.

Most of us have also dealt with reflux and our children have also used

assistive devices to prevent them from choking. However, there is no

definitive link between this positioning and scoliosis - but I do

believe the curve in their spine puts pressure on their abdomens, thus

forcing the contents of the stomach back up the esophagus. I don't

think it is anything we have done as parents, just something that

occurs and is a symptom.

From Virginia, I would imagine Erie, PA would be your nearest

Shriner's who has been properly trained in the Mehta method of early

intervention serial casting. There are also trained surgeons in

Birmingham, AL and Rochester, NY's Shriner's, I believe. Begin the

calling on Monday morning and hopefully someone here can get you the

contact numbers. Dr. or Khoury, I think - but we don't have

experience with them ourselves (though they are some of the most

experienced in this method in the country).

Best to you - we'll be here throughout the journey,

Sandi

[Guest guest]

,

I agree with Sandi that the two top docs that are closest to you are Dr. Khoury

(he was the one in the video that I sent you) and Dr. . Both have

treated Ian and they were fantastic. The only issue is insurance...you would

have to find out if they cover it. There is a doc at Erie Shriners who is being

trained by Dr. in the Mehta casting technique.

Anyway, I gave you other suggestions via email. Shriners is free, so if the

other two docs don't work because insurance you could look into the one in SC.

Glad to see you posting here.

Noelle (12-2-01)

Ian (8-15-04)

Re: New to group 7 mo old dd recently dx with

idiopathic infantile scoliosis 36deg

,

Welcome to the group! Although I'm sorry to hear that your daughter

has the unfortunate diagnosis we all share, I am relieved to hear how

young she is for the diagnosis and that you're already on the right

path to early intervention.

My son was diagnosed with a seventy degree curve at ten

months. We lost quite a bit of valuable time (two months) by seeing

two orthopaedic surgeons who did not believe in early intervention -

in fact, the common practice amongst them is to watch and wait. There

is always a chance a curve is not going to progress. However, the

measurement of the RVAD (rib vertebral angle - the angle at which the

rib goes into the spine - instead of being perpendicular, it is on a

slant) can help to determine that. A properly trained physician (in

the Mehta method of early intervention like we advocate here) will

help you to determine that number.

I would not waste precious time with local physicians, sadly. Most

just are unfamiliar with this rather rare diagnosis and have not seen

much in their practice. Because it is so rare, they are simply

misinformed (or ill informed) in the best way to treat - not just hold

or stabilize like has been their previous experience, but treat and

potentially cure these children of scoliosis.

Most of us have also dealt with reflux and our children have also used

assistive devices to prevent them from choking. However, there is no

definitive link between this positioning and scoliosis - but I do

believe the curve in their spine puts pressure on their abdomens, thus

forcing the contents of the stomach back up the esophagus. I don't

think it is anything we have done as parents, just something that

occurs and is a symptom.

From Virginia, I would imagine Erie, PA would be your nearest

Shriner's who has been properly trained in the Mehta method of early

intervention serial casting. There are also trained surgeons in

Birmingham, AL and Rochester, NY's Shriner's, I believe. Begin the

calling on Monday morning and hopefully someone here can get you the

contact numbers. Dr. or Khoury, I think - but we don't have

experience with them ourselves (though they are some of the most

experienced in this method in the country).

Best to you - we'll be here throughout the journey,

Sandi

[Guest guest]

,

Welcome to the group. The first thing I would do is yes contact

a casting doctor myself. You will be able to send xrays to shriners

and Dr.Khoury can take a look at them. Also before they can cast she

needs to have a full MRI head, neck and spine done to rule out any

other congenital problems. My son is 2yrs old and also has Chiari

malformation which is a brain malformation. He had to have surgery

before they could cast. He started at over 40degrees in May and is

now at 8degrees and in a brace. It is very good that you don't want

to waste any time. I'm sure all the parents on this site will agree.

Time is very important with these rapid growing spines. Also contact

and get the DVD. This will help to understand exactly how the

early treatment works and benifits most children. You are in the

right place and in the right mode to get the best care for your

daughter. I believe there is an article in the files section of this

site to explain the RVAD and how it is measured, also there is an

article written by Dr. Mehta in the files section that is very

informative and helpful. Best of luck!!

Rochelle mom to Devyn 2yrs infantile scoliosis, Chiari 1. Tiffanni

10yrs. Dominic 7yrs

>

> ,

>

> I agree with Sandi that the two top docs that are closest to you

are Dr. Khoury (he was the one in the video that I sent you) and Dr.

. Both have treated Ian and they were fantastic. The only

issue is insurance...you would have to find out if they cover it.

There is a doc at Erie Shriners who is being trained by Dr.

in the Mehta casting technique.

>

> Anyway, I gave you other suggestions via email. Shriners is free,

so if the other two docs don't work because insurance you could look

into the one in SC.

>

> Glad to see you posting here.

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> Re: New to group 7 mo old dd

recently dx with idiopathic infantile scoliosis 36deg

>

>

> ,

> Welcome to the group! Although I'm sorry to hear that your

daughter

> has the unfortunate diagnosis we all share, I am relieved to hear

how

> young she is for the diagnosis and that you're already on the

right

> path to early intervention.

>

> My son was diagnosed with a seventy degree curve at ten

> months. We lost quite a bit of valuable time (two months) by

seeing

> two orthopaedic surgeons who did not believe in early

intervention -

> in fact, the common practice amongst them is to watch and wait.

There

> is always a chance a curve is not going to progress. However, the

> measurement of the RVAD (rib vertebral angle - the angle at which

the

> rib goes into the spine - instead of being perpendicular, it is

on a

> slant) can help to determine that. A properly trained physician

(in

> the Mehta method of early intervention like we advocate here) will

> help you to determine that number.

>

> I would not waste precious time with local physicians, sadly. Most

> just are unfamiliar with this rather rare diagnosis and have not

seen

> much in their practice. Because it is so rare, they are simply

> misinformed (or ill informed) in the best way to treat - not just

hold

> or stabilize like has been their previous experience, but treat

and

> potentially cure these children of scoliosis.

>

> Most of us have also dealt with reflux and our children have also

used

> assistive devices to prevent them from choking. However, there is

no

> definitive link between this positioning and scoliosis - but I do

> believe the curve in their spine puts pressure on their abdomens,

thus

> forcing the contents of the stomach back up the esophagus. I don't

> think it is anything we have done as parents, just something that

> occurs and is a symptom.

>

> From Virginia, I would imagine Erie, PA would be your nearest

> Shriner's who has been properly trained in the Mehta method of

early

> intervention serial casting. There are also trained surgeons in

> Birmingham, AL and Rochester, NY's Shriner's, I believe. Begin the

> calling on Monday morning and hopefully someone here can get you

the

> contact numbers. Dr. or Khoury, I think - but we don't

have

> experience with them ourselves (though they are some of the most

> experienced in this method in the country).

>

> Best to you - we'll be here throughout the journey,

>

> Sandi

>

>

>

>

>