Re:Any specialist at Children's Hospital of Philadelphia

[Guest guest]

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve

is 20 degree, in case you were wondering. I feel like my pediatrician is

clueless. I called to ask for the name of another specialist and they said to

look in my book. I would like a recommendation. So, I will try to find one at

CHOP, or some of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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[Guest guest]

There is a Shriner's Hospital in Philly, but not sure about the status of the

casting program there. The best bet would be to call Shriners Hospital for

Children in Erie, PA. You can call and ask to speak to a care coordinator and

their number is 814-875-8700. Good luck.

jenny

ada dougherty <a.dougherty@...> wrote:

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve is

20 degree, in case you were wondering. I feel like my pediatrician is clueless.

I called to ask for the name of another specialist and they said to look in my

book. I would like a recommendation. So, I will try to find one at CHOP, or some

of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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

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[Guest guest]

Dear Ada,

I hope that you will be able to get into Erie soon. If I understand

correctly from other Mom's on this site Torticolis does not just go away, it

must be treated through physical therapy at the very least. Some children

require special braces to keep their neck in the proper position. I would

definitely contact Erie and get their opinion. They know what they are doing

and be honest with you.

Shellie Grant

ada dougherty <a.dougherty@...> wrote:

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve is

20 degree, in case you were wondering. I feel like my pediatrician is clueless.

I called to ask for the name of another specialist and they said to look in my

book. I would like a recommendation. So, I will try to find one at CHOP, or some

of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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[Guest guest]

Your best bet would be to try Shriners (yes, it is a children's hospital and

their specialty is pediatric orthopedics). They are the only ones doing the

casting right now. Sounds like the one in Erie may be the best bet if the

doctors who were trained in casting have left the one in Philly. It's a bit of

a drive, but well worth it. All treatment is free there and they also have

parent housing (although we usually opt to stay in a hotel). What's great about

the Erie Shriners is that they have treated a lot of infantile scoliosis kids

and are having great success with the casting. I am sure they will want

to have an MRI before seeing him though.

Noelle (12-2-01)

Ian (8-15-04)

Re:Any specialist at Children's Hospital of

Philadelphia

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve is

20 degree, in case you were wondering. I feel like my pediatrician is clueless.

I called to ask for the name of another specialist and they said to look in my

book. I would like a recommendation. So, I will try to find one at CHOP, or some

of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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[Guest guest]

Hi Ada and welcome. Shriner's hospitals are a network of children's hospitals

offering gratis burn and orthopaedic treatments; especially the Mehta technique

we are all referring to. There are two, currently offering this, Erie PA and

Salt Lake City, UT.

http://www.shriners.com/Hospitals/Erie/ Please feel free to ask as many

questions as you would like. You can also call the hospital and ask to speak to

Dr. Sander's care coordinator who may be able to point you in the right

direction.

ada dougherty <a.dougherty@...> wrote:

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve is

20 degree, in case you were wondering. I feel like my pediatrician is clueless.

I called to ask for the name of another specialist and they said to look in my

book. I would like a recommendation. So, I will try to find one at CHOP, or some

of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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[Guest guest]

Hi Ada,

I am so glad you found the group. You are in the right place.

My son, , is 19 months old and will get his 3rd cast on December 11.

was diagnosed with Infantile Scoliosis in January 2005(9 months old) and

was at 29 degrees.

A MRI confirmed it was progressive and by April it was up to 34.

His geneticist saw no underlying syndrome and felt that the scoliosis was

positional. It was a difficult pregnancy. was truly in one spot for 4

months while in utero.

He is also a twin.

The reason I am telling you all this is to say get a 3rd opinion.

Go with your gut feeling on this........you know that Mommy feeling.

I wish you and the very best in this road ahead.

And you will not be naive about this anymore..............you found this

group.

Keep us posted.

Tasha

Mommy of twins- and

Fort Worth, Texas

ada dougherty <a.dougherty@...> wrote:

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve is

20 degree, in case you were wondering. I feel like my pediatrician is clueless.

I called to ask for the name of another specialist and they said to look in my

book. I would like a recommendation. So, I will try to find one at CHOP, or some

of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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[Guest guest]

Hi Ada,

I read with interest the part where your ortho said that infantile scoliosis

is very rare and was more common " among the British. " I was also told this in

Australia by my ortho. He told me that it was a british prblem that didn't

exist in AUstralia....I think they are wrong. The RVAD is an accurate indicator

of progressive curves and the only reason infantile scoliosis seems to be more

prevalent in Britain is because before Dr Mehta retired they had realized it was

able to be successfully corrected if treated early in Britain and so they were

acting if it was discovered.

My advice would be go to the Shriners in Erie and see Dr . Travel is

nothing and he is getting excellent results. Don't delay...

Bert

ada dougherty <a.dougherty@...> wrote:

Hi everyone,

Thank you for all your answers. I feel like I'm in the right place. First of

all, our names are Ada and . I did ask Dr. Nuzzo about the RVAD and he

said that it was fine, but that this is not an accurate indicator. He does not

think 's scoliosis is progressive. He feels it was caused by his

positioning in utero and he has continued to twist himself into that same

position since birth. also has torticollis. Dr. Nuzzo basically told me

that due to his size this happened. He was against an MRI and believed that a

tethered cord was not the cause. He also checked him for hip dysplasia, which

was fine. He mentioned how rare this was except among the British. His curve is

20 degree, in case you were wondering. I feel like my pediatrician is clueless.

I called to ask for the name of another specialist and they said to look in my

book. I would like a recommendation. So, I will try to find one at CHOP, or some

of you mentioned Shriners? Is that

also a children's hospital? If, so where it is?

Thanks, any bit of info helps, I feel very naive about this.

Ada

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

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things done faster.