Re: Upsetting Visit to Shriners

[Guest guest]

My son's curve was 48 laying down (probably 60's or 70's standing) prior to

casting. He is now 0 laying down and between 10 and 18 standing (he doesn't

cooperate very well). He started casting at 15 months, and had 5 casts. We go

to Dr. S in Rochester. I don't know why your doctor feels that way, but I know

we are not an oddity with our doctor. I wouldn't give up yet.

Jenn, mommy to cole 3 years old.

>

> Abby had her 3rd cast applied today. Her doctor told us that her curve today

in cast is 20* We are confused because after her 2nd cast was taken off, her

curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

>

> - , mom of Abby (19 months)

>

[Guest guest]

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

,

My 3yr old Eden is in her 5th

cast. Her out of cast curve decreased from 49 degrees in June to 32 in

February. Her in-cast curve was consistently in the mid-20’s and

finally dropped to 19 last month. Her Philly Shriners doctor (Dr C) is

considering bracing her for the summer depending on how she looks in April (she’ll

be casted for three more weeks until the brace is ready). This is mostly

based (if I understood correctly) if she plateaus in correction. Might as

well brace her since the amount of correction and growth won’t be very

great over the summer.

At this point in Eden’s treatment, I feel

confident of two things: 1) my child will never get down to 0 and 2) unless

something changes, she will not need growth rods, etc.

Eden didn’t start casting until she was 2 years, 5 months, which

is a little late for full correction. (It wasn’t caught earlier since

we were focused on her Erb’s palsy and the pediatrician only sees her

once a year, and in my opinion, misread what her back hump signified or missed

it altogether.) That doesn’t mean there’s no hope, just that

the number of children who achieve full correction when they start casting at her

age is very small. Of course, the number of children that are followed in

each of the scientific papers/reports also seems very small to me. But what

Dr C did tell me was that when children get down to 20 degrees, it is very hard

to put enough “torque” into the cast to get further

correction. He also reassured me that if she can maintain a curve below

30 degrees until she reaches adulthood, she will be fully functional.

This does not mean she won’t be casted

for the summer, but I think Dr C is looking ahead and is predicting that she

won’t get much more correction with this curve. How will she react

to a brace, and will we cast again in the fall, I don’t know. We

will certainly advocate to achieve the lowest curvature possible as long as the

treatment is reasonable. Eden’s situation is unique as is every child’s, but I hope

that hearing her story will help you sort through your daughter’s

treatment and decision-making process. At the least, I would ask why Abby’s

doctor is saying she’ll maybe need rods or fusion. Maybe there is

more behind why he thinks that or maybe not. I would definitely ask.

Best wishes,

Sherry

[Guest guest]

Hi ,

Ditto to what everyone else has said about not giving up.

I also wanted to say that a lot of kids (probably my son included) will never

reach 0 degrees. In fact, a lot of people walking around today are not at 0

degrees and many don't even know it.

My point is that it is one thing to never reach 0 degrees - and a very different

thing to need rods/fusion. There is a HUGE area in between - namely, patients

who end up with 5, 10 even 20 or 30 degree curves at the end of growth and NEVER

need rods or fusion.

So try to stay strong and take it one step at a time :-)

Hugs,

>

> Abby had her 3rd cast applied today. Her doctor told us that her curve today

in cast is 20* We are confused because after her 2nd cast was taken off, her

curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

>

> - , mom of Abby (19 months)

>

[Guest guest]

it is upsetting and my heart goes out to you. I think that there are more people out there with Scoliosis than we realise. One minute we noticed something a little odd, a few months of monotoring went by and then it appeared to have disappeared. The consultant said that If you can't see it then it is always good news and he was confident that it was not the progressive type, he had previously referred us to the National ROyal Orthapedic Hos who took a standing xray and have started the whole worrying process all over again for us by picking up a 28* curve in our 2 year 3 month year old we have to wait until August to see if the curve has progressed and then he will be in a cast if it has. Our previous xrays sitting down had been around 21* but you have to have the same person taking the images to get a true reading.

Father-in-law had PT only for scoliosis when they picked it up as a teenager. I find the whole thing very confusing and consultants don't always know how to talk to you. I feel bad for wishing my son to be casted so that they can get him straight rather than put up with a 20 something curve, but perhaps a 20 something curve is not really the end of the world, it doesn't seem to affect him too much at the moment, it is the fear of it progressing that is frightening. It is right to say one day at a time xx On Wed, 16/3/11, <mariaf305@...> wrote:From: <mariaf305@...>Subject: Re: Upsetting Visit to Shrinersinfantile scoliosis treatment Date: Wednesday, 16 March, 2011, 16:42

Hi ,

Ditto to what everyone else has said about not giving up.

I also wanted to say that a lot of kids (probably my son included) will never reach 0 degrees. In fact, a lot of people walking around today are not at 0 degrees and many don't even know it.

My point is that it is one thing to never reach 0 degrees - and a very different thing to need rods/fusion. There is a HUGE area in between - namely, patients who end up with 5, 10 even 20 or 30 degree curves at the end of growth and NEVER need rods or fusion.

So try to stay strong and take it one step at a time :-)

Hugs,

>

> Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes

and say "Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.

>

> - , mom of Abby (19 months)

>

[Guest guest]

it is upsetting and my heart goes out to you. I think that there are more people out there with Scoliosis than we realise. One minute we noticed something a little odd, a few months of monotoring went by and then it appeared to have disappeared. The consultant said that If you can't see it then it is always good news and he was confident that it was not the progressive type, he had previously referred us to the National ROyal Orthapedic Hos who took a standing xray and have started the whole worrying process all over again for us by picking up a 28* curve in our 2 year 3 month year old we have to wait until August to see if the curve has progressed and then he will be in a cast if it has. Our previous xrays sitting down had been around 21* but you have to have the same person taking the images to get a true reading.

Father-in-law had PT only for scoliosis when they picked it up as a teenager. I find the whole thing very confusing and consultants don't always know how to talk to you. I feel bad for wishing my son to be casted so that they can get him straight rather than put up with a 20 something curve, but perhaps a 20 something curve is not really the end of the world, it doesn't seem to affect him too much at the moment, it is the fear of it progressing that is frightening. It is right to say one day at a time xx On Wed, 16/3/11, <mariaf305@...> wrote:From: <mariaf305@...>Subject: Re: Upsetting Visit to Shrinersinfantile scoliosis treatment Date: Wednesday, 16 March, 2011, 16:42

Hi ,

Ditto to what everyone else has said about not giving up.

I also wanted to say that a lot of kids (probably my son included) will never reach 0 degrees. In fact, a lot of people walking around today are not at 0 degrees and many don't even know it.

My point is that it is one thing to never reach 0 degrees - and a very different thing to need rods/fusion. There is a HUGE area in between - namely, patients who end up with 5, 10 even 20 or 30 degree curves at the end of growth and NEVER need rods or fusion.

So try to stay strong and take it one step at a time :-)

Hugs,

>

> Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes

and say "Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.

>

> - , mom of Abby (19 months)

>

[Guest guest]

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

I can tell you that I was told that since my son is "too old for casting to work" by his previous doctor, I decided to give it a try. (He is 3 years old). He gets his first cast off on April 4th and then reapplied on April 6th. I have been told that we are only buying time to hold off as long as possible for the surgical route. I have been told that Shane WILL NEED the growing rods (VEPTR) and eventually spinal fusion. I think that because people are so "sue happy" and file malpractice suits at the drop of a hat, I think that these doctors say the worse case scenario as to cover their butts. Think about it, if a doctor tells you the worse case scenario and it turns out to be better than he told you, you would be happy beyond belief. However, if they told you the best case or even a slightly better than worse case and it turned out to be the worst, you would be angry and resentful. You would feel that they got your hopes up only to have the rug pulled out from under you.For me, nothing is 100% (especially in the medical field). And since I was told the worst, all I have is HOPE which is what helps me to keep going. There has to be children ages 3 and up that casting will work for. As the doctor told me, there are not that many cases of 3 and older kids that were followed. So they don't have the studies on that. So, as long as we have hope, faith, positive thoughts (and ISOP) we (the parents of the "older kids") will be okay. Just my opinion.SuzanneSent from my iPhoneOn Mar 16, 2011, at 9:19 PM, NIck Guthe <nickguthe@...> wrote:

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

I can tell you that I was told that since my son is "too old for casting to work" by his previous doctor, I decided to give it a try. (He is 3 years old). He gets his first cast off on April 4th and then reapplied on April 6th. I have been told that we are only buying time to hold off as long as possible for the surgical route. I have been told that Shane WILL NEED the growing rods (VEPTR) and eventually spinal fusion. I think that because people are so "sue happy" and file malpractice suits at the drop of a hat, I think that these doctors say the worse case scenario as to cover their butts. Think about it, if a doctor tells you the worse case scenario and it turns out to be better than he told you, you would be happy beyond belief. However, if they told you the best case or even a slightly better than worse case and it turned out to be the worst, you would be angry and resentful. You would feel that they got your hopes up only to have the rug pulled out from under you.For me, nothing is 100% (especially in the medical field). And since I was told the worst, all I have is HOPE which is what helps me to keep going. There has to be children ages 3 and up that casting will work for. As the doctor told me, there are not that many cases of 3 and older kids that were followed. So they don't have the studies on that. So, as long as we have hope, faith, positive thoughts (and ISOP) we (the parents of the "older kids") will be okay. Just my opinion.SuzanneSent from my iPhoneOn Mar 16, 2011, at 9:19 PM, NIck Guthe <nickguthe@...> wrote:

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

Right on, Suzanne, good for you! has told me that older kids sometimes take longer with casting but absolutely have gotten great results- including beginning over age 3 for sure. I know we've seen examples in this group as well. Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Suzanne Rulka <suzy3333@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Thu, March 17, 2011 3:50:11 AMSubject: Re: Upsetting Visit to Shriners

I can tell you that I was told that since my son is "too old for casting to work" by his previous doctor, I decided to give it a try. (He is 3 years old). He gets his first cast off on April 4th and then reapplied on April 6th. I have been told that we are only buying time to hold off as long as possible for the surgical route. I have been told that Shane WILL NEED the growing rods (VEPTR) and eventually spinal fusion. I think that because people are so "sue happy" and file malpractice suits at the drop of a hat, I think that these doctors say the worse case scenario as to cover their butts. Think about it, if a doctor tells you the worse case scenario and it turns out to be better than he told you, you would be happy beyond belief. However, if they told you the best case or even a slightly better than worse case and it turned out to be the worst, you would be angry and resentful. You would feel that they got your hopes up only to

have the rug pulled out from under you.For me, nothing is 100% (especially in the medical field). And since I was told the worst, all I have is HOPE which is what helps me to keep going. There has to be children ages 3 and up that casting will work for. As the doctor told me, there are not that many cases of 3 and older kids that were followed. So they don't have the studies on that. So, as long as we have hope, faith, positive thoughts (and ISOP) we (the parents of the "older kids") will be okay. Just my opinion.SuzanneSent from my iPhoneOn Mar 16, 2011, at 9:19 PM, NIck Guthe <nickguthe@...> wrote:

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

No matter what they say cast as long as you can you never know. Medicine is a

science no absolute can always be said we castes longer then recommended 4 years

old and were told we started to late 23 months but got great correction. I don't

know if surgery is in the future but we tried our hardest he's been brace free

for 2 years looks great and 8 may 1st. So don't give up even if they give you

info you may no like. You really never know.

Best

> >

> > Abby had her 3rd cast applied today. Her doctor told us that her curve

today in cast is 20* We are confused because after her 2nd cast was taken off,

her curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

> >

> > - , mom of Abby (19 months)

> >

>

[Guest guest]

No matter what they say cast as long as you can you never know. Medicine is a

science no absolute can always be said we castes longer then recommended 4 years

old and were told we started to late 23 months but got great correction. I don't

know if surgery is in the future but we tried our hardest he's been brace free

for 2 years looks great and 8 may 1st. So don't give up even if they give you

info you may no like. You really never know.

Best

> >

> > Abby had her 3rd cast applied today. Her doctor told us that her curve

today in cast is 20* We are confused because after her 2nd cast was taken off,

her curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

> >

> > - , mom of Abby (19 months)

> >

>

[Guest guest]

I understand your confusion..we are in the same situation, Abigail is 4 years

old, has been casting for a year now with ups and downs that's a whole other

story, but we have been told by multiple drs (Dr. C at Philly, Dr. S at

Rochester and Dr. K at Boston) that she will have to have surgery at some point

and she'll never reach " 0 " .

Zero is a hopeful goal, we do the best we can and know that at least she is not

progressing..I agree that the dr.s give the worst case scenario in case the

casting/bracing doesn't work parents aren't shocked that their child will " all

the sudden " need surgery.

Slow and steady wins the race!

-Ami

> > >

> > > Abby had her 3rd cast applied today. Her doctor told us that her curve

today in cast is 20* We are confused because after her 2nd cast was taken off,

her curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

> > >

> > > - , mom of Abby (19 months)

> > >

> >

>

[Guest guest]

I understand your confusion..we are in the same situation, Abigail is 4 years

old, has been casting for a year now with ups and downs that's a whole other

story, but we have been told by multiple drs (Dr. C at Philly, Dr. S at

Rochester and Dr. K at Boston) that she will have to have surgery at some point

and she'll never reach " 0 " .

Zero is a hopeful goal, we do the best we can and know that at least she is not

progressing..I agree that the dr.s give the worst case scenario in case the

casting/bracing doesn't work parents aren't shocked that their child will " all

the sudden " need surgery.

Slow and steady wins the race!

-Ami

> > >

> > > Abby had her 3rd cast applied today. Her doctor told us that her curve

today in cast is 20* We are confused because after her 2nd cast was taken off,

her curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

> > >

> > > - , mom of Abby (19 months)

> > >

> >

>

[Guest guest]

I understand your confusion..we are in the same situation, Abigail is 4 years

old, has been casting for a year now with ups and downs that's a whole other

story, but we have been told by multiple drs (Dr. C at Philly, Dr. S at

Rochester and Dr. K at Boston) that she will have to have surgery at some point

and she'll never reach " 0 " .

Zero is a hopeful goal, we do the best we can and know that at least she is not

progressing..I agree that the dr.s give the worst case scenario in case the

casting/bracing doesn't work parents aren't shocked that their child will " all

the sudden " need surgery.

Slow and steady wins the race!

-Ami

> > >

> > > Abby had her 3rd cast applied today. Her doctor told us that her curve

today in cast is 20* We are confused because after her 2nd cast was taken off,

her curve was 14*. Her doctor said it is normal for the numbers to go back up a

little at times. Anyway, here is my concern - Abby's doctor told us today that

Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have

to have some type of harrington Rods or spinal fusion later on. He said that

when a child's curve starts out at 40 degrees or higher, that they don't usually

reach 0 degrees. What is confusing to me is that I have read about many kids on

this chat group that have went from even higher numbers (50's and 60's) and now

are either at 0 degrees or very close to it. Were any of you told this same

thing before? (about harrington rods/surgery). I am just wondering if he is

maybe just not wanting to get our hopes up. But, for him to sit there and look

me in the eyes and say " Abby will never reach 0 degrees. " That was very

upsetting. I mean, her scoliosis is not the congenital type and she has no

other underlying conditions. I am just so upset and concerned.

> > >

> > > - , mom of Abby (19 months)

> > >

> >

>

[Guest guest]

glad to read that older toddlers are getting results with casting, I was getting rather worried reading all the things about getting it done asap, but over here in the UK I have been told to wait and see a 28* curve is small compared to 120* that these doctors are dealing with today. I guess the thing about the wait and see approach is that in the ideal world they would rather not cast a child unless it was necessary for numerous reasons but It takes a great deal to calm yourself when you know that early casting appears to be getting great results. We are often in their hands and that is tough.

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

glad to read that older toddlers are getting results with casting, I was getting rather worried reading all the things about getting it done asap, but over here in the UK I have been told to wait and see a 28* curve is small compared to 120* that these doctors are dealing with today. I guess the thing about the wait and see approach is that in the ideal world they would rather not cast a child unless it was necessary for numerous reasons but It takes a great deal to calm yourself when you know that early casting appears to be getting great results. We are often in their hands and that is tough.

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

hi all,my son noah got his first cast last september, he was 3 years and 10 months. he has two curves, mid-40s and mid-50s. in his first cast, they got down to low teens and high teens. in the second cast, he stayed about the same, i believe they tried to address rotation. we got his 3rd cast in early february and the curves were estimated 11 and 16 - so i've got faith! the procedure is really so gentle and minimally invasive that i would never not give it a try!best of luck!

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

hi all,my son noah got his first cast last september, he was 3 years and 10 months. he has two curves, mid-40s and mid-50s. in his first cast, they got down to low teens and high teens. in the second cast, he stayed about the same, i believe they tried to address rotation. we got his 3rd cast in early february and the curves were estimated 11 and 16 - so i've got faith! the procedure is really so gentle and minimally invasive that i would never not give it a try!best of luck!

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

hi all,my son noah got his first cast last september, he was 3 years and 10 months. he has two curves, mid-40s and mid-50s. in his first cast, they got down to low teens and high teens. in the second cast, he stayed about the same, i believe they tried to address rotation. we got his 3rd cast in early february and the curves were estimated 11 and 16 - so i've got faith! the procedure is really so gentle and minimally invasive that i would never not give it a try!best of luck!

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)

[Guest guest]

I agree with everyone who recommended to continue the properly applied

series of EDF casting as long as possible. Experienced ped. ortho's and

data/studies are now confirming that a solid block of properly applied EDF

casts are most effective in maintaining #'s, overall body shape, lung

function, etc...in growing children with PIS. Even if the child has

missed their rapid phase of growth...I have seen multiple children begin

at 3 or 4 and get great results (although it took a bit longer). If they

were not corrected completely they used EDF casting alternating with a

summer brace and were able to buy invaluable growth time and maintain over

all body shape (front & back), maintain lung volume, etc.....Prior to any

definitive procedure.

I would also request an RVAD measurement, if you havent already. And,

schedule a consult w/ the treating doc to be sure you are both on the same

page with your babes care. Talk to the doc about your goal with EDF

casting. Talk to the doc about their success rates with ET & EDF/Mehta

casting....Ask if they have had the experience yet to see how effective

EDF can be for growing children (not just infants)..Remember, Early

Treatment w/ Mehta/EDF casts is new in the world (1st article published in

2005 JBJS Br.) and it takes a long time for these medical wheels to turn

as data must be compiled/published before the medical world will

acknowledge. If you find that he/she is not interested in continuing EDF

for your babe in an attempt to get lower #'s or even to maintain and buy

time, then perhaps another opinion from a doc who has been doing this for

longer might be worthwhile. If you have already done this, my apologies

for not knowing. I can only hop on CAST once or twice a week and have

missed a lot.

Please keep us posted.

HRH

303 507 2485

> glad to read that older toddlers are getting results with casting, I was

> getting rather worried reading all the things about getting it done asap,

> but over here in the UK I have been told to wait and see a 28* curve is

> small compared to 120* that these doctors are dealing with today.  I

> guess the thing about the wait and see approach is that in the ideal world

> they would rather not cast a child unless it was necessary for numerous

> reasons but It takes a great deal to calm yourself when you know that

> early casting appears to be getting great results.  We are often in their

> hands and that is tough.

>

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> I totally agree, as long as you trust your doctor I would keep going the

> distance. Of course every child is unique, but it seems that with a

> properly applied cast, the key is catching growth spurts in cast and you

> still have time for that- we began at 19 months. I would be upset, too-

> going backwards in any way is so hard, I've been there. Hugs!

>  Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City

> Shriners, currently down from 63 degrees to 14.6 in cast. You can read

> Bexon's Story on www.GirltoMom.com)

>

> From: Tasha Fontenot <ryanswalk@...>

> infantile scoliosis treatment

> Sent: Tue, March 15, 2011 6:08:21 PM

> Subject: Re: Upsetting Visit to Shriners

>

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> ,

> I agree with Jenn that I would not give up, but I would also say every

> child is SO different and responds so differently to each treatment. 

> Maybe he did tell you that because he does not want to get your hopes

> up.  I know my son's doctor is very conservative and will never tell us

> anything for sure. 

> started at 37 degrees at 15 months, was in a series of 6 casts over

> 14 months and has been in a brace since FOREVER!  He will never reach

> zero. He is currently at 11 degrees and about to be six years old next

> month.  His doctor had told us at some point he " might " need surgery, but

> at this point I can not see that happening.  What I do see happening is

> that will likely be in a brace for a L O N G time.  It is what it is

> for us.

>  

> I would continue on with what you are doing.  Abby is still so young and

> only in her 3rd cast.  She still has time to have some good correction.

> Hang in there......this journey can be up and down.  And sometimes a

> long one. 

>  

> Tasha

> Mommy of 5 year old twin boys- and

> Fort Worth, Texas

> is treated at Texas ish Rite Hospital in Dallas, Texas.  After

> being treated in a series of 6 casts for 14 months he is now in a brace

> and has been since September 2007.

> EARLY Treatment does work if done properly.

> You can read 's story at....

> http://www.infantilescoliosis.org/stories.html

> Or follow our family one day at a

> time......http://thefontenotslife.blogspot.com/

>

>

>

>

>  

>

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> From: juliechafin2005 <juliechafin2005@...>

> infantile scoliosis treatment

> Sent: Tue, March 15, 2011 7:19:19 PM

> Subject: Upsetting Visit to Shriners

>

>  

>

> Abby had her 3rd cast applied today. Her doctor told us that her curve

> today in cast is 20* We are confused because after her 2nd cast was taken

> off, her curve was 14*. Her doctor said it is normal for the numbers to go

> back up a little at times. Anyway, here is my concern - Abby's doctor told

> us today that Abby's spine will never be 0 degrees. And in fact, he

> expects her to maybe have to have some type of harrington Rods or spinal

> fusion later on. He said that when a child's curve starts out at 40

> degrees or higher, that they don't usually reach 0 degrees. What is

> confusing to me is that I have read about many kids on this chat group

> that have went from even higher numbers (50's and 60's) and now are either

> at 0 degrees or very close to it. Were any of you told this same thing

> before? (about harrington rods/surgery). I am just wondering if he is

> maybe just not wanting to get our hopes up. But, for him to sit there and

> look me in the eyes and say

> " Abby will never reach 0 degrees. " That was very upsetting. I mean, her

> scoliosis is not the congenital type and she has no other underlying

> conditions. I am just so upset and concerned.

>

> - , mom of Abby (19 months)

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[Guest guest]

thank you so much for letting me know that, it is such a worry game, but the results are terrific when you hear about them. good luck with the next set

,I totally agree, as long as you trust your doctor I would keep going the distance. Of course every child is unique, but it seems that with a properly applied cast, the key is catching growth spurts in cast and you still have time for that- we began at 19 months. I would be upset, too- going backwards in any way is so hard, I've been there. Hugs! Heidi, Bexon's Mommy, (3.5 years old, in 9th cast from Salt Lake City Shriners, currently down from 63 degrees to 14.6 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Tasha Fontenot <ryanswalk@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 6:08:21 PMSubject: Re: Upsetting Visit to Shriners

,

I agree with Jenn that I would not give up, but I would also say every child is SO different and responds so differently to each treatment. Maybe he did tell you that because he does not want to get your hopes up. I know my son's doctor is very conservative and will never tell us anything for sure.

started at 37 degrees at 15 months, was in a series of 6 casts over 14 months and has been in a brace since FOREVER! He will never reach zero. He is currently at 11 degrees and about to be six years old next month. His doctor had told us at some point he "might" need surgery, but at this point I can not see that happening. What I do see happening is that will likely be in a brace for a L O N G time. It is what it is for us.

I would continue on with what you are doing. Abby is still so young and only in her 3rd cast. She still has time to have some good correction.

Hang in there......this journey can be up and down. And sometimes a long one.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, Texas. After being treated in a series of 6 casts for 14 months he is now in a brace and has been since September 2007.

EARLY Treatment does work if done properly.

You can read 's story at.... http://www.infantilescoliosis.org/stories.html

Or follow our family one day at a time......http://thefontenotslife.blogspot.com/

From: juliechafin2005 <juliechafin2005@...>infantile scoliosis treatment Sent: Tue, March 15, 2011 7:19:19 PMSubject: Upsetting Visit to Shriners

Abby had her 3rd cast applied today. Her doctor told us that her curve today in cast is 20* We are confused because after her 2nd cast was taken off, her curve was 14*. Her doctor said it is normal for the numbers to go back up a little at times. Anyway, here is my concern - Abby's doctor told us today that Abby's spine will never be 0 degrees. And in fact, he expects her to maybe have to have some type of harrington Rods or spinal fusion later on. He said that when a child's curve starts out at 40 degrees or higher, that they don't usually reach 0 degrees. What is confusing to me is that I have read about many kids on this chat group that have went from even higher numbers (50's and 60's) and now are either at 0 degrees or very close to it. Were any of you told this same thing before? (about harrington rods/surgery). I am just wondering if he is maybe just not wanting to get our hopes up. But, for him to sit there and look me in the eyes and say

"Abby will never reach 0 degrees." That was very upsetting. I mean, her scoliosis is not the congenital type and she has no other underlying conditions. I am just so upset and concerned.- , mom of Abby (19 months)