Re: Difference between CAST and ISOP

August 14, 2009

Tema,

Moriah (and Olivia, 's daughter) will be having Halo Traction and surgery this Fall. There are info booklets on both of them in the Information section of the ISOP website. I hope you find them helpful. Remind me again where you are from? Liv will go to SLC, Utah. Moriah and I will be in San , TX.

I have been a member of this group for years, and have stayed so I can talk to parents like you whose children have to go through surgery. Moriah was never offered any form of casting and even if she was it would have only bought her time as well.

Remember that ISOP and CAST are two separate entities. CAST is about Early Treatment largely, but everyone is welcome. ISOP's mission is to help all kids with all types of scoliosis. For years it was and I living 8 hours apart talking on the phone every day and writing for the website. Without an army for staff, things get done slowly and dreams have to be prioritized. Preventing kids from getting to the point of needing surgery is important. But so is supporting the kids who won't benefit from Early Treatment -- that's why the Halo and VEPTR books are up there. I had to come to terms with the fact that I can't change the world overnight. can't change the world overnight. No one can. We each just do what we can every day and never give up.

I hope to write about our "final surgery" experience when it happens. If I learn anything that will be useful to others in this circumstance, I'll be offering it to for the website.

shellie grant (Moriah's Mom)

From: Jane Bigler <janemharyahoo (DOT) com>Subject: Re: [infantile_scoliosi s] 85 degree now 94 degreesTo: infantile_scoliosis @yahoogroups. comDate: Thursday, August 13, 2009, 12:12 PM

I know I'm newer here as well. But maybe there needs to be a change to the title of this Yahoo group??

Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter was diagnosed at birth with congenital scoliosos. Knowing NOTHING about scoliosis, I began searching for a group for support. "Infantile Scoliosis" would, in those words alone, indicate a very young child with scoliosis, for someone who knows nothing. I believe way back then I joined this group as I didn't know where else to turn, but I knew that my daughter's back couldn't be "cured" by a cast, no matter what kind it was. I remember being "raked over the coals" for not pursuing casting as an option. Sorry, but congenital scoliosis just isn't fixed that way. It can be kept from progressing, but even that is done easier with less problems and less stress for the child (in my opinion) through bracing rather than casting. I think I too expressed my frustration with all of you for the pressure you put on me

that I was doing a "bad" thing for my child. Someone was kind enough to point me to the group "congenital scoliosis" also on yahoo groups, where I have continued to receive wonderful support. But even they aren't the "perfect" fit for my situation. Most of the kids on there are at least a few years older than my child and have had much greater and intesive surgeries than my child will have. And for the most part, they haven't had to deal with casts at all. So, I sought out this group again, KNOWING what your views were, and knew that I would have to be clear in my initial greeting to the group that we had made our decision, that surgery was our only option but that since my daughter would be wearing a cast for 3-4 mo following surgery, that I was here for advice on issues around casts period.

While I am taking this bit of a stand, I would also like to mention that it is important for new parents to be told to make sure through the MRI/x-ray process of whether the scoliosis is congenital or idiopathic in nature. I've tried to express that, but then the following umpteen posts following mine don't say anything, but "get somewhere that does the Mehta method!"

If that is the "cure" you are all promoting, I would recommend changing your title as a group. That way, parents such as Sandy, I and others don't have to feel we are doing the "worst thing possible" for our children. It is hard enough to deal with these issues without feeling an overwhelming push that we are doing something wrong and will cause our child to suffer more.

I will only be a part of this group until my daughter has her surgery and is through having her cast. Then I will leave as other than support for how to deal with a cast, there is NOTHING here for me. I have cringed as I have read some of the emails. A passion is good, but not looking at the whole picture and recognizing that there are many ways to solve a puzzle, could be detrimental to some family in the future.

I'll get off my soapbox for now, I hope this helps those of you severely pushing the Mehta method to realize what it is like for us that know that is not an option and how it makes us feel.

Thanks for listening/reading.

Jane

From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>To: Infantile Scoliosis <infantile_scoliosis @yahoogroups. com>Sent: Thursday, August 13, 2009 7:58:15 AMSubject: [infantile_scoliosi s] 85 degree now 94 degrees

My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.

Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis" which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be here if I shouldn't be.

Thanks again,

Sandy

"Life's not about waiting for the storm to pass...It's about learning to dance in the rain."~~~Vivian Greene

August 15, 2009

Hey Shellie,

What kind of surgery will Moriah be having after the halo traction?

We are at a crossroads with what to do next for . His Doc is trying to convince me that fusion is the only option. is 10 years old and 42 inches long. I am of course dead against fusion for right now. We need more growing time!!

Connie

[infantile_scoliosi s] 85 degree now 94 degrees

My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.

Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis" which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be here if I shouldn't be.

Thanks again,

Sandy

"Life's not about waiting for the storm to pass...

It's about learning to dance in the rain."

~~~Vivian Greene

August 15, 2009

Shellie! Thanks for all you have done and continue to do for this group and

ISOP. You and Moriah are inspirations....If I may, I will turn to you in the

coming months, as we face Dual Growing Rod surgery for Matson. I have thought on

occasion I probably shouldn't post/etc due to casting not working for Matson and

facing the surgery journey, but I am still here Thanks again...You and

are amazing!

Steph

Mom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces

and now Dual Growing Rods

Tyler (6)

Lily (2)

>

> From: Jane Bigler <janemharyahoo (DOT) com>

> Subject: Re: [infantile_scoliosi s] 85 degree now 94 degrees

> To: infantile_scoliosis @yahoogroups. com

> Date: Thursday, August 13, 2009, 12:12 PM

>

> I know I'm newer here as well. But maybe there needs to be a change to

the title of this Yahoo group??

>

> Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter

was diagnosed at birth with congenital scoliosos. Knowing NOTHING about

scoliosis, I began searching for a group for support. " Infantile Scoliosis "

would, in those words alone, indicate a very young child with scoliosis, for

someone who knows nothing. I believe way back then I joined this group as I

didn't know where else to turn, but I knew that my daughter's back couldn't be

" cured " by a cast, no matter what kind it was. I remember being " raked over the

coals " for not pursuing casting as an option. Sorry, but congenital scoliosis

just isn't fixed that way. It can be kept from progressing, but even that is

done easier with less problems and less stress for the child (in my opinion)

through bracing rather than casting. I think I too expressed my frustration

with all of you for the pressure you put on me that I was doing a " bad " thing

for my child. Someone

> was kind enough to point me to the group " congenital scoliosis " also on yahoo

groups, where I have continued to receive wonderful support. But even they

aren't the " perfect " fit for my situation. Most of the kids on there are at

least a few years older than my child and have had much greater and intesive

surgeries than my child will have. And for the most part, they haven't had

to deal with casts at all. So, I sought out this group again, KNOWING what your

views were, and knew that I would have to be clear in my initial greeting to the

group that we had made our decision, that surgery was our only option but that

since my daughter would be wearing a cast for 3-4 mo following surgery, that I

was here for advice on issues around casts period.

>

> While I am taking this bit of a stand, I would also like to mention that it is

important for new parents to be told to make sure through the MRI/x-ray process

of whether the scoliosis is congenital or idiopathic in nature. I've tried to

express that, but then the following umpteen posts following mine don't say

anything, but " get somewhere that does the Mehta method! "

>

> If that is the " cure " you are all promoting, I would recommend changing your

title as a group. That way, parents such as Sandy, I and others don't have to

feel we are doing the " worst thing possible " for our children. It is hard

enough to deal with these issues without feeling an overwhelming push that we

are doing something wrong and will cause our child to suffer more.

>

> I will only be a part of this group until my daughter has her surgery and is

through having her cast. Then I will leave as other than support for how to

deal with a cast, there is NOTHING here for me. I have cringed as I have read

some of the emails. A passion is good, but not looking at the whole picture and

recognizing that there are many ways to solve a puzzle, could be detrimental to

some family in the future.

>

> I'll get off my soapbox for now, I hope this helps those of you severely

pushing the Mehta method to realize what it is like for us that know that is not

an option and how it makes us feel.

>

> Thanks for listening/reading.

>

> Jane

>

> From: Sandy Schmucker <sschmuckerneo (DOT) rr.com>

> To: Infantile Scoliosis <infantile_scoliosis @yahoogroups. com>

> Sent: Thursday, August 13, 2009 7:58:15 AM

> Subject: [infantile_scoliosi s] 85 degree now 94 degrees

>

> My little guy was able to walk if you held both his hands. In the last week

he can no longer do that. We saw the doctor yesterday and his curve is now 94

degrees. He will be getting the Risser Cast on August 21st.

>

> Since this cast is different from what all of you have for your kids I will be

leaving the site. I thought this was for any " infantile scoliosis " which would

include anyone but I'm not getting that feeling. I want to thank all of you who

were so nice and supportive but I don't want to be here if I shouldn't be.

>

> Thanks again,

> Sandy

>

> " Life's not about waiting for the storm to pass...

> It's about learning to dance in the rain. "

> ~~~Vivian Greene

>

August 15, 2009

Steph, I just want to say to you and others that casting didn't work for, you all better keep posting because I want people to turn to if casting doesn't work for my daughter or if we can't get the total correction. Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)To: infantile_scoliosis Sent: Saturday, August 15, 2009 1:15:39 AMSubject: Re: Difference between CAST and ISOP

Shellie! Thanks for all you have done and continue to do for this group and ISOP. You and Moriah are inspirations. ...If I may, I will turn to you in the coming months, as we face Dual Growing Rod surgery for Matson. I have thought on occasion I probably shouldn't post/etc due to casting not working for Matson and facing the surgery journey, but I am still here Thanks again...You and are amazing!

Steph

Mom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces and now Dual Growing Rods

Tyler (6)

Lily (2)

>

> From: Jane Bigler <janemharyahoo (DOT) com>

> Subject: Re: [infantile_scoliosi s] 85 degree now 94 degrees

> To: infantile_scoliosis @yahoogroups. com

> Date: Thursday, August 13, 2009, 12:12 PM

>

> I know I'm newer here as well. But maybe there needs to be a change to the title of this Yahoo group??

>

> Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter was diagnosed at birth with congenital scoliosos. Knowing NOTHING about scoliosis, I began searching for a group for support. "Infantile Scoliosis" would, in those words alone, indicate a very young child with scoliosis, for someone who knows nothing. I believe way back then I joined this group as I didn't know where else to turn, but I knew that my daughter's back couldn't be "cured" by a cast, no matter what kind it was. I remember being "raked over the coals" for not pursuing casting as an option. Sorry, but congenital scoliosis just isn't fixed that way. It can be kept from progressing, but even that is done easier with less problems and less stress for the child (in my opinion) through bracing rather than casting. I think I too expressed my frustration with all of you for the pressure you put on me that I was doing a "bad" thing for my child.

Someone

> was kind enough to point me to the group "congenital scoliosis" also on yahoo groups, where I have continued to receive wonderful support. But even they aren't the "perfect" fit for my situation. Most of the kids on there are at least a few years older than my child and have had much greater and intesive surgeries than my child will have. And for the most part, they haven't had to deal with casts at all. So, I sought out this group again, KNOWING what your views were, and knew that I would have to be clear in my initial greeting to the group that we had made our decision, that surgery was our only option but that since my daughter would be wearing a cast for 3-4 mo following surgery, that I was here for advice on issues around casts period.

>

> While I am taking this bit of a stand, I would also like to mention that it is important for new parents to be told to make sure through the MRI/x-ray process of whether the scoliosis is congenital or idiopathic in nature. I've tried to express that, but then the following umpteen posts following mine don't say anything, but "get somewhere that does the Mehta method!"

>

> If that is the "cure" you are all promoting, I would recommend changing your title as a group. That way, parents such as Sandy, I and others don't have to feel we are doing the "worst thing possible" for our children. It is hard enough to deal with these issues without feeling an overwhelming push that we are doing something wrong and will cause our child to suffer more.

>

> I will only be a part of this group until my daughter has her surgery and is through having her cast. Then I will leave as other than support for how to deal with a cast, there is NOTHING here for me. I have cringed as I have read some of the emails. A passion is good, but not looking at the whole picture and recognizing that there are many ways to solve a puzzle, could be detrimental to some family in the future.

>

> I'll get off my soapbox for now, I hope this helps those of you severely pushing the Mehta method to realize what it is like for us that know that is not an option and how it makes us feel.

>

> Thanks for listening/reading.

>

> Jane

>

> From: Sandy Schmucker <sschmucker@ neo. rr.com>

> To: Infantile Scoliosis <infantile_scoliosi s @yahoogroups. com>

> Sent: Thursday, August 13, 2009 7:58:15 AM

> Subject: [infantile_scoliosi s] 85 degree now 94 degrees

>

> My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.

>

> Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis" which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be here if I shouldn't be.

>

> Thanks again,

> Sandy

>

> "Life's not about waiting for the storm to pass...

> It's about learning to dance in the rain."

> ~~~Vivian Greene

>

August 15, 2009

Patty,

AMEN TO THAT!!!!!

Subject: Re: Re: Difference between CAST and ISOPTo: infantile_scoliosis Date: Saturday, August 15, 2009, 4:07 PM

Steph,

I just want to say to you and others that casting didn't work for, you all better keep posting because I want people to turn to if casting doesn't work for my daughter or if we can't get the total correction.

Patty, mom of Isabella, 23 months old, in 1st cast (Rochester)

From: lvmomtoty <lvmomtotyyahoo (DOT) com>To: infantile_scoliosis @yahoogroups. comSent: Saturday, August 15, 2009 1:15:39 AMSubject: [infantile_scoliosi s] Re: Difference between CAST and ISOP

Shellie! Thanks for all you have done and continue to do for this group and ISOP. You and Moriah are inspirations. ...If I may, I will turn to you in the coming months, as we face Dual Growing Rod surgery for Matson. I have thought on occasion I probably shouldn't post/etc due to casting not working for Matson and facing the surgery journey, but I am still here Thanks again...You and are amazing!StephMom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces and now Dual Growing RodsTyler (6)Lily (2)> > > From: Jane Bigler <janemharyahoo (DOT) com>> Subject: Re:

[infantile_scoliosi s] 85 degree now 94 degrees> To: infantile_scoliosis @yahoogroups. com> Date: Thursday, August 13, 2009, 12:12 PM> > > > > > > > I know I'm newer here as well. But maybe there needs to be a change to the title of this Yahoo group??> > Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter was diagnosed at birth with congenital scoliosos. Knowing NOTHING about scoliosis, I began searching for a group for support. "Infantile Scoliosis" would, in those words alone, indicate a very young child with scoliosis, for someone who knows nothing. I believe way back then I joined this group as I didn't know where else to turn, but I knew that my daughter's back couldn't be "cured" by a cast, no matter what kind it was. I remember being "raked over the coals" for not

pursuing casting as an option. Sorry, but congenital scoliosis just isn't fixed that way. It can be kept from progressing, but even that is done easier with less problems and less stress for the child (in my opinion) through bracing rather than casting. I think I too expressed my frustration with all of you for the pressure you put on me that I was doing a "bad" thing for my child. Someone> was kind enough to point me to the group "congenital scoliosis" also on yahoo groups, where I have continued to receive wonderful support. But even they aren't the "perfect" fit for my situation. Most of the kids on there are at least a few years older than my child and have had much greater and intesive surgeries than my child will have. And for the most part, they haven't had to deal with casts at all. So, I sought out this group again, KNOWING what your views were,

and knew that I would have to be clear in my initial greeting to the group that we had made our decision, that surgery was our only option but that since my daughter would be wearing a cast for 3-4 mo following surgery, that I was here for advice on issues around casts period.> > While I am taking this bit of a stand, I would also like to mention that it is important for new parents to be told to make sure through the MRI/x-ray process of whether the scoliosis is congenital or idiopathic in nature. I've tried to express that, but then the following umpteen posts following mine don't say anything, but "get somewhere that does the Mehta method!"> > If that is the "cure" you are all promoting, I would recommend changing your title as a group. That way, parents such as Sandy, I and others don't have to feel we are doing the "worst thing possible" for our

children. It is hard enough to deal with these issues without feeling an overwhelming push that we are doing something wrong and will cause our child to suffer more.> > I will only be a part of this group until my daughter has her surgery and is through having her cast. Then I will leave as other than support for how to deal with a cast, there is NOTHING here for me. I have cringed as I have read some of the emails. A passion is good, but not looking at the whole picture and recognizing that there are many ways to solve a puzzle, could be detrimental to some family in the future.> > I'll get off my soapbox for now, I hope this helps those of you severely pushing the Mehta method to realize what it is like for us that know that is not an option and how it makes us feel.> > Thanks for listening/reading.> > Jane>

> > > > > > From: Sandy Schmucker <sschmucker@ neo. rr.com>> To: Infantile Scoliosis <infantile_scoliosi s @yahoogroups. com>> Sent: Thursday, August 13, 2009 7:58:15 AM> Subject: [infantile_scoliosi s] 85 degree now 94 degrees> > > > > My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.> > Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis" which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be

here if I shouldn't be.> > Thanks again,> Sandy> > "Life's not about waiting for the storm to pass...> It's about learning to dance in the rain."> ~~~Vivian Greene> > > >

August 16, 2009

Thank you Patty and ....just to have one of my posts and our situation

acknowledged means more than you know! I will certainly be around, and I hope

nobody else has to face what we are facing with Matson, but if someone does I

will absolutely offer any help I can. I am also still a big advocate for ISOP

and am hoping to plan a fundraiser here in Vegas in the near future.

Thanks!

Steph

Mom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces,

and now Dual Growing Rod Surgery)

Tyler (6)

Lily (2)

> >

> > From: Jane Bigler <janemharyahoo (DOT) com>

> > Subject: Re: [infantile_scoliosi s] 85 degree now 94 degrees

> > To: infantile_scoliosis @yahoogroups. com

> > Date: Thursday, August 13, 2009, 12:12 PM

> >

> > I know I'm newer here as well. But maybe there needs to be a change to the

title of this Yahoo group??

> >

> > Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter

was diagnosed at birth with congenital scoliosos. Knowing NOTHING about

scoliosis, I began searching for a group for support. " Infantile Scoliosis "

would, in those words alone, indicate a very young child with scoliosis, for

someone who knows nothing. I believe way back then I joined this group as I

didn't know where else to turn, but I knew that my daughter's back couldn't be

" cured " by a cast, no matter what kind it was. I remember being " raked over the

coals " for not pursuing casting as an option. Sorry, but congenital scoliosis

just isn't fixed that way.. It can be kept from progressing, but even that is

done easier with less problems and less stress for the child (in my opinion)

through bracing rather than casting. I think I too expressed my frustration

with all of you for the pressure you put on me that I was doing a " bad " thing

for my child. Someone

> > was kind enough to point me to the group " congenital scoliosis " also on

yahoo groups, where I have continued to receive wonderful support.. But even

they aren't the " perfect " fit for my situation. Most of the kids on there are

at least a few years older than my child and have had much greater and intesive

surgeries than my child will have. And for the most part, they haven't had to

deal with casts at all. So, I sought out this group again, KNOWING what your

views were, and knew that I would have to be clear in my initial greeting to the

group that we had made our decision, that surgery was our only option but that

since my daughter would be wearing a cast for 3-4 mo following surgery, that I

was here for advice on issues around casts period.

> >

> > While I am taking this bit of a stand, I would also like to mention that it

is important for new parents to be told to make sure through the MRI/x-ray

process of whether the scoliosis is congenital or idiopathic in nature. I've

tried to express that, but then the following umpteen posts following mine don't

say anything, but " get somewhere that does the Mehta method! "

> >

> > If that is the " cure " you are all promoting, I would recommend changing your

title as a group. That way, parents such as Sandy, I and others don't have to

feel we are doing the " worst thing possible " for our children. It is hard

enough to deal with these issues without feeling an overwhelming push that we

are doing something wrong and will cause our child to suffer more.

> >

> > I will only be a part of this group until my daughter has her surgery and is

through having her cast. Then I will leave as other than support for how to

deal with a cast, there is NOTHING here for me. I have cringed as I have read

some of the emails. A passion is good, but not looking at the whole picture and

recognizing that there are many ways to solve a puzzle, could be detrimental to

some family in the future.

> >

> > I'll get off my soapbox for now, I hope this helps those of you severely

pushing the Mehta method to realize what it is like for us that know that is not

an option and how it makes us feel.

> >

> > Thanks for listening/reading.

> >

> > Jane

> >

> > From: Sandy Schmucker <sschmucker@ neo. rr.com>

> > To: Infantile Scoliosis <infantile_scoliosi s @yahoogroups. com>

> > Sent: Thursday, August 13, 2009 7:58:15 AM

> > Subject: [infantile_scoliosi s] 85 degree now 94 degrees

> >

> > My little guy was able to walk if you held both his hands. In the last week

he can no longer do that. We saw the doctor yesterday and his curve is now 94

degrees. He will be getting the Risser Cast on August 21st.

> >

> > Since this cast is different from what all of you have for your kids I will

be leaving the site. I thought this was for any " infantile scoliosis " which

would include anyone but I'm not getting that feeling. I want to thank all of

you who were so nice and supportive but I don't want to be here if I shouldn't

be.

> >

> > Thanks again,

> > Sandy

> >

> > " Life's not about waiting for the storm to pass...

> > It's about learning to dance in the rain. "

> > ~~~Vivian Greene

> >

>

August 16, 2009

Fundraiser in Vegas, alright Steph!!! Is is true what happens at a Vegas fundraiser stays at a Vegas fundraiser? ; )Heidi, Bexon's Mama, (2 years old, in 3rd cast from Salt Lake City Shriners, currently down from 61 degrees to 25)

Subject: Re: Difference between CAST and ISOPTo: infantile_scoliosis Date: Saturday, August 15, 2009, 7:35 PM

Thank you Patty and ....just to have one of my posts and our situation acknowledged means more than you know! I will certainly be around, and I hope nobody else has to face what we are facing with Matson, but if someone does I will absolutely offer any help I can. I am also still a big advocate for ISOP and am hoping to plan a fundraiser here in Vegas in the near future.Thanks!StephMom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces, and now Dual Growing Rod Surgery)Tyler (6)Lily (2)> > > > > > From: Jane Bigler <janemharyahoo (DOT) com>> > Subject: Re: [infantile_scoliosi s] 85 degree now 94 degrees> > To: infantile_scoliosis @yahoogroups. com> > Date: Thursday, August 13, 2009, 12:12 PM> > > > > > > > > > > > > > > > I know I'm newer here as well. But maybe there needs to be a change to the title of this Yahoo group??> > > > Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter was diagnosed at birth with congenital scoliosos. Knowing NOTHING about scoliosis, I began searching for a group for support. "Infantile

Scoliosis" would, in those words alone, indicate a very young child with scoliosis, for someone who knows nothing. I believe way back then I joined this group as I didn't know where else to turn, but I knew that my daughter's back couldn't be "cured" by a cast, no matter what kind it was. I remember being "raked over the coals" for not pursuing casting as an option. Sorry, but congenital scoliosis just isn't fixed that way.. It can be kept from progressing, but even that is done easier with less problems and less stress for the child (in my opinion) through bracing rather than casting. I think I too expressed my frustration with all of you for the pressure you put on me that I was doing a "bad" thing for my child. Someone> > was kind enough to point me to the group "congenital scoliosis" also on yahoo groups, where I have continued to receive wonderful support.. But even they aren't the "perfect" fit for my situation. Most of the kids on there

are at least a few years older than my child and have had much greater and intesive surgeries than my child will have. And for the most part, they haven't had to deal with casts at all. So, I sought out this group again, KNOWING what your views were, and knew that I would have to be clear in my initial greeting to the group that we had made our decision, that surgery was our only option but that since my daughter would be wearing a cast for 3-4 mo following surgery, that I was here for advice on issues around casts period.> > > > While I am taking this bit of a stand, I would also like to mention that it is important for new parents to be told to make sure through the MRI/x-ray process of whether the scoliosis is congenital or idiopathic in nature. I've tried to express that, but then the following umpteen posts following mine don't say anything, but "get somewhere that does the Mehta method!"> > > > If that is

the "cure" you are all promoting, I would recommend changing your title as a group. That way, parents such as Sandy, I and others don't have to feel we are doing the "worst thing possible" for our children. It is hard enough to deal with these issues without feeling an overwhelming push that we are doing something wrong and will cause our child to suffer more.> > > > I will only be a part of this group until my daughter has her surgery and is through having her cast. Then I will leave as other than support for how to deal with a cast, there is NOTHING here for me. I have cringed as I have read some of the emails. A passion is good, but not looking at the whole picture and recognizing that there are many ways to solve a puzzle, could be detrimental to some family in the future.> > > > I'll get off my soapbox for now, I hope this helps those of you severely pushing the Mehta method to realize what it is like for us

that know that is not an option and how it makes us feel.> > > > Thanks for listening/reading.> > > > Jane> > > > > > > > > > > > > > From: Sandy Schmucker <sschmucker@ neo. rr.com>> > To: Infantile Scoliosis <infantile_scoliosi s @yahoogroups. com>> > Sent: Thursday, August 13, 2009 7:58:15 AM> > Subject: [infantile_scoliosi s] 85 degree now 94 degrees> > > > > > > > > > My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.> > > > Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis"

which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be here if I shouldn't be.> > > > Thanks again,> > Sandy> > > > "Life's not about waiting for the storm to pass...> > It's about learning to dance in the rain."> > ~~~Vivian Greene> > > > > > > >>

August 16, 2009

Steph,

Vegas , did you say? Im there!! LOL!!

Subject: Re: Difference between CAST and ISOPTo: infantile_scoliosis Date: Saturday, August 15, 2009, 9:35 PM

Thank you Patty and ....just to have one of my posts and our situation acknowledged means more than you know! I will certainly be around, and I hope nobody else has to face what we are facing with Matson, but if someone does I will absolutely offer any help I can. I am also still a big advocate for ISOP and am hoping to plan a fundraiser here in Vegas in the near future.Thanks!StephMom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces, and now Dual Growing Rod Surgery)Tyler (6)Lily (2)> > > > > > From: Jane Bigler <janemharyahoo (DOT) com>> > Subject: Re: [infantile_scoliosi s] 85 degree now 94 degrees> > To: infantile_scoliosis @yahoogroups. com> > Date: Thursday, August 13, 2009, 12:12 PM> > > > > > > > > > > > > > > > I know I'm newer here as well. But maybe there needs to be a change to the title of this Yahoo group??> > > > Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter was diagnosed at birth with congenital scoliosos. Knowing NOTHING about scoliosis, I began searching for a group for support. "Infantile

Scoliosis" would, in those words alone, indicate a very young child with scoliosis, for someone who knows nothing. I believe way back then I joined this group as I didn't know where else to turn, but I knew that my daughter's back couldn't be "cured" by a cast, no matter what kind it was. I remember being "raked over the coals" for not pursuing casting as an option. Sorry, but congenital scoliosis just isn't fixed that way.. It can be kept from progressing, but even that is done easier with less problems and less stress for the child (in my opinion) through bracing rather than casting. I think I too expressed my frustration with all of you for the pressure you put on me that I was doing a "bad" thing for my child. Someone> > was kind enough to point me to the group "congenital scoliosis" also on yahoo groups, where I have continued to receive wonderful support.. But even they aren't the "perfect" fit for my situation. Most of the kids on there

are at least a few years older than my child and have had much greater and intesive surgeries than my child will have. And for the most part, they haven't had to deal with casts at all. So, I sought out this group again, KNOWING what your views were, and knew that I would have to be clear in my initial greeting to the group that we had made our decision, that surgery was our only option but that since my daughter would be wearing a cast for 3-4 mo following surgery, that I was here for advice on issues around casts period.> > > > While I am taking this bit of a stand, I would also like to mention that it is important for new parents to be told to make sure through the MRI/x-ray process of whether the scoliosis is congenital or idiopathic in nature. I've tried to express that, but then the following umpteen posts following mine don't say anything, but "get somewhere that does the Mehta method!"> > > > If that is

the "cure" you are all promoting, I would recommend changing your title as a group. That way, parents such as Sandy, I and others don't have to feel we are doing the "worst thing possible" for our children. It is hard enough to deal with these issues without feeling an overwhelming push that we are doing something wrong and will cause our child to suffer more.> > > > I will only be a part of this group until my daughter has her surgery and is through having her cast. Then I will leave as other than support for how to deal with a cast, there is NOTHING here for me. I have cringed as I have read some of the emails. A passion is good, but not looking at the whole picture and recognizing that there are many ways to solve a puzzle, could be detrimental to some family in the future.> > > > I'll get off my soapbox for now, I hope this helps those of you severely pushing the Mehta method to realize what it is like for us

that know that is not an option and how it makes us feel.> > > > Thanks for listening/reading.> > > > Jane> > > > > > > > > > > > > > From: Sandy Schmucker <sschmucker@ neo. rr.com>> > To: Infantile Scoliosis <infantile_scoliosi s @yahoogroups. com>> > Sent: Thursday, August 13, 2009 7:58:15 AM> > Subject: [infantile_scoliosi s] 85 degree now 94 degrees> > > > > > > > > > My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.> > > > Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis"

which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be here if I shouldn't be.> > > > Thanks again,> > Sandy> > > > "Life's not about waiting for the storm to pass...> > It's about learning to dance in the rain."> > ~~~Vivian Greene> > > > > > > >>

August 16, 2009

Steph,

You are more than welcome, and I would love to chat with you about the upcoming surgery. We don't have personal experience with the dual growing rods, but the VEPTR book was born out of Moriah getting her first implants in at age 8. Maybe read through that to get an idea about living in the hospital, preparing Matson for surgery (age appropriately), pain management, support systems, etc. Email me offline anytime! I'm a little slower on the weekends re: email since that's huge family time!

shellie :0)

Subject: Re: Difference between CAST and ISOPTo: infantile_scoliosis Date: Saturday, August 15, 2009, 12:15 AM

Shellie! Thanks for all you have done and continue to do for this group and ISOP. You and Moriah are inspirations. ...If I may, I will turn to you in the coming months, as we face Dual Growing Rod surgery for Matson. I have thought on occasion I probably shouldn't post/etc due to casting not working for Matson and facing the surgery journey, but I am still here Thanks again...You and are amazing!StephMom to Matson (3.5 yrs 50 degrees thoracic/40 degrees lumbar, 5 casts, 2 braces and now Dual Growing RodsTyler (6)Lily (2)> > > From: Jane Bigler <janemharyahoo (DOT) com>> Subject: Re:

[infantile_scoliosi s] 85 degree now 94 degrees> To: infantile_scoliosis @yahoogroups. com> Date: Thursday, August 13, 2009, 12:12 PM> > > > > > > > I know I'm newer here as well. But maybe there needs to be a change to the title of this Yahoo group??> > Having it be Infantile Scoliosis/C. A.S.T. is a bit deceiving. My daughter was diagnosed at birth with congenital scoliosos. Knowing NOTHING about scoliosis, I began searching for a group for support. "Infantile Scoliosis" would, in those words alone, indicate a very young child with scoliosis, for someone who knows nothing. I believe way back then I joined this group as I didn't know where else to turn, but I knew that my daughter's back couldn't be "cured" by a cast, no matter what kind it was. I remember being "raked over the coals" for not

pursuing casting as an option. Sorry, but congenital scoliosis just isn't fixed that way. It can be kept from progressing, but even that is done easier with less problems and less stress for the child (in my opinion) through bracing rather than casting. I think I too expressed my frustration with all of you for the pressure you put on me that I was doing a "bad" thing for my child. Someone> was kind enough to point me to the group "congenital scoliosis" also on yahoo groups, where I have continued to receive wonderful support. But even they aren't the "perfect" fit for my situation. Most of the kids on there are at least a few years older than my child and have had much greater and intesive surgeries than my child will have. And for the most part, they haven't had to deal with casts at all. So, I sought out this group again, KNOWING what your views were,

and knew that I would have to be clear in my initial greeting to the group that we had made our decision, that surgery was our only option but that since my daughter would be wearing a cast for 3-4 mo following surgery, that I was here for advice on issues around casts period.> > While I am taking this bit of a stand, I would also like to mention that it is important for new parents to be told to make sure through the MRI/x-ray process of whether the scoliosis is congenital or idiopathic in nature. I've tried to express that, but then the following umpteen posts following mine don't say anything, but "get somewhere that does the Mehta method!"> > If that is the "cure" you are all promoting, I would recommend changing your title as a group. That way, parents such as Sandy, I and others don't have to feel we are doing the "worst thing possible" for our

children. It is hard enough to deal with these issues without feeling an overwhelming push that we are doing something wrong and will cause our child to suffer more.> > I will only be a part of this group until my daughter has her surgery and is through having her cast. Then I will leave as other than support for how to deal with a cast, there is NOTHING here for me. I have cringed as I have read some of the emails. A passion is good, but not looking at the whole picture and recognizing that there are many ways to solve a puzzle, could be detrimental to some family in the future.> > I'll get off my soapbox for now, I hope this helps those of you severely pushing the Mehta method to realize what it is like for us that know that is not an option and how it makes us feel.> > Thanks for listening/reading.> > Jane>

> > > > > > From: Sandy Schmucker <sschmucker@ neo. rr.com>> To: Infantile Scoliosis <infantile_scoliosi s @yahoogroups. com>> Sent: Thursday, August 13, 2009 7:58:15 AM> Subject: [infantile_scoliosi s] 85 degree now 94 degrees> > > > > My little guy was able to walk if you held both his hands. In the last week he can no longer do that. We saw the doctor yesterday and his curve is now 94 degrees. He will be getting the Risser Cast on August 21st.> > Since this cast is different from what all of you have for your kids I will be leaving the site. I thought this was for any "infantile scoliosis" which would include anyone but I'm not getting that feeling. I want to thank all of you who were so nice and supportive but I don't want to be here if I shouldn't be.> > Thanks

again,> Sandy> > "Life's not about waiting for the storm to pass...> It's about learning to dance in the rain."> ~~~Vivian Greene> > > >

August 16, 2009

They haven't given me specific hardware names, but it will be fusion with metal on her spine. Mo is almost 13 years old and is 4 feet 6 at the moment. We are praying that she grows another inch before they call her up, and that the traction will give her another inch as well. She's not in any pain right now, so we're not in a hurry to rush them at getting their program set up. My family is very short (5'4 is giant for us). She's also eating like mad and has weaned herself off her appetite med. This is such a miracle and blessing. Usually without the med she will eat very little. I'll post more once I have the specifics.

shellie