Re: Just Joining the group!

[Guest guest]

Hi Sonya,

Jack's Story is very similiar to 's. We started therapy for Torticollis at about 5 months. His Scoliosis wasn't diagnosed until 10 months old with a 67 degree curve. was casted at 10 months and has continued therapy throughout the entire casting process. We have found the therapy to help with his mobility while in cast. learned to crawl and walk in cast. Through therapy he perfected specific range of motion moves such as getting up from sitting and lying flat which were extremely hard otherwise. He is now able to squat from stand and pick items up, climb stairs, etc... Although I don't think the therapy has any direct impact on his curve, it has improved his core balance and muscle tone. If continuing is an option, it is something I would recommend.

I think you have made the best decision for Jake in regards to casting. Bracing while effective in maintaining correction gained through casting, is not successful in correcting an existing curve. Many children have had their curves progress while braced if the ideal correction is not first gained. I think you will be amazed at his progress once the first cast is applied. Best of luck and welcome to the group. Catie,Cody(9) & 's(17mo)mom (in 3rd cast 47*out of cast, 10* in cast) proudly at Chicago Shriners

From: Sonja Egger <sonjapetersen2002@...>infantile scoliosis treatment Sent: Sun, June 13, 2010 11:12:35 PMSubject: Just Joining the group!

Hello everyone,

My name is Sonja and my husband and I have a son Jake who is 10 1/2 months old and was diagnosed with torticolisat about 3 months and we have done physical therapy at Children's Hospital in Seattle ever since. The torticolis completely resolved at about 9 months. We then had an MRI and Cat Scan done to rule out other causes which was "normal" and an X ray which showed that he had idiopathic infantile scoliosis with a curve at 25 degrees. They had us come back just last Tuesday and had another Xray which showed that the curve had increased to 45 degrees and advised us to have him cast for a brace. They are making the brace right now but my husband and I have decided to go ahead with the Mehta Casting at Shriner's as soon as we can get him in. . I found the ISOP website and have read the great stories from other parents which have been

amazing. So that is where we are at, scared and sad, but hopeful too. Can't wait to talk to other families about how all of this works and how they adapt to the casting. One of the questions I have is about physical therapy- is it helpful and should we keep doing it- or is it not? I am getting conflicting opinions so I thought I would ask? Thank you so much and looking forward to getting to know everyone and their stories.Thanks,Sonja

[Guest guest]

Sorry Sonya. I didn't notice until now my iPhone changed Jake to Jack in the first line. Typing without paying attention. Sent from my iPhoneOn Jun 14, 2010, at 6:10 AM, Chad And Catie Diefenbaugh <chadandcatie@...> wrote:

Hi Sonya,

Jack's Story is very similiar to 's. We started therapy for Torticollis at about 5 months. His Scoliosis wasn't diagnosed until 10 months old with a 67 degree curve. was casted at 10 months and has continued therapy throughout the entire casting process. We have found the therapy to help with his mobility while in cast. learned to crawl and walk in cast. Through therapy he perfected specific range of motion moves such as getting up from sitting and lying flat which were extremely hard otherwise. He is now able to squat from stand and pick items up, climb stairs, etc... Although I don't think the therapy has any direct impact on his curve, it has improved his core balance and muscle tone. If continuing is an option, it is something I would recommend.

I think you have made the best decision for Jake in regards to casting. Bracing while effective in maintaining correction gained through casting, is not successful in correcting an existing curve. Many children have had their curves progress while braced if the ideal correction is not first gained. I think you will be amazed at his progress once the first cast is applied. Best of luck and welcome to the group. Catie,Cody(9) & 's(17mo)mom (in 3rd cast 47*out of cast, 10* in cast) proudly at Chicago Shriners

From: Sonja Egger <sonjapetersen2002 >infantile scoliosis treatment Sent: Sun, June 13, 2010 11:12:35 PMSubject: Just Joining the group!

Hello everyone,

My name is Sonja and my husband and I have a son Jake who is 10 1/2 months old and was diagnosed with torticolisat about 3 months and we have done physical therapy at Children's Hospital in Seattle ever since. The torticolis completely resolved at about 9 months. We then had an MRI and Cat Scan done to rule out other causes which was "normal" and an X ray which showed that he had idiopathic infantile scoliosis with a curve at 25 degrees. They had us come back just last Tuesday and had another Xray which showed that the curve had increased to 45 degrees and advised us to have him cast for a brace. They are making the brace right now but my husband and I have decided to go ahead with the Mehta Casting at Shriner's as soon as we can get him in. . I found the ISOP website and have read the great stories from other parents which have been

amazing. So that is where we are at, scared and sad, but hopeful too. Can't wait to talk to other families about how all of this works and how they adapt to the casting. One of the questions I have is about physical therapy- is it helpful and should we keep doing it- or is it not? I am getting conflicting opinions so I thought I would ask? Thank you so much and looking forward to getting to know everyone and their stories.Thanks,Sonja

[Guest guest]

Hi Sonya welcome to the group! I agree PT can only help. My son is 12 mos and

has been seen at Childrens Seattle also. I hope you don't mind I ask you

question about your son, I am curious if there were any other symptoms/concerns

that your son was reccomended the MRI/cat scan?? and did you go back for follow

up xray at 1 only 1 month?? I am just trying to figure out if should be trying

harder to get my son evaluated sooner or not?? we saw ortho 3 mos ago his curve

was estimated at 10 degrees curve I was told to come back in 6 months. I have

called repeatedly and been told to wait 6 mos. I worry if he needs an MRI

especially since he has a couple dark patches his lower back and his PT and I

see no posture improvement for the last 6 months(since 6 mos). The ortho at

Childrens was not too worried but I am since we see no improvement and I also

have scolio. MY son has been in PT since 4 mos for the tort ( not at Childrens)

but seen at Seattle Childrens for his plagio and the ortho eval his spine. We

are doing ongoing PT to try and straighten him out he will not sit straight I am

feeling really frustrated and confused.

are you going to go to Portland shriners? I am not sure if i should be taking

him there for eval instead or continue to wait and go back to Seattle. its been

extra hard for me since husband is not concerned and thinks we need to just

" listen to " the ortho advice we saw at Childrens. sorry all the questions,

thanks for any advice on your experience there.

le

>

> Hi Sonya,

>       Jack's Story is very similiar to 's.  We started therapy

for Torticollis at about 5 months.  His Scoliosis wasn't diagnosed until 10

months old with a 67 degree curve.  was casted at 10 months and has

continued therapy throughout the entire casting process.  We have found the

therapy to help with his mobility while in cast.  learned to crawl and

walk in cast.  Through therapy he perfected specific range of motion moves

such as getting up from sitting and lying flat which were extremely

hard otherwise.  He is now able to squat from stand and pick items up, climb

stairs, etc... Although I don't think the therapy has any direct impact on his

curve, it has improved his core balance and muscle tone.  If continuing is an

option, it is something I would recommend. 

>       I think you have made the best decision for Jake in regards to

casting.  Bracing while effective in maintaining correction gained through

casting, is not successful in correcting an existing curve.  Many children have

had their curves progress while braced if the ideal correction is not first

gained. I think you will be amazed at his progress once the first cast is

applied.  Best of luck and welcome to the group.   

>  Catie,Cody(9) & 's(17mo)mom (in 3rd cast 47*out of cast, 10* in cast)

proudly at Chicago Shriners

>

>

>

>

> ________________________________

> From: Sonja Egger <sonjapetersen2002@...>

> infantile scoliosis treatment

> Sent: Sun, June 13, 2010 11:12:35 PM

> Subject: Just Joining the group!

>

>  

> Hello everyone,

> My name is Sonja and my husband and I have a son Jake who is 10 1/2 months

old and was diagnosed with torticolis

> at about 3 months and we have done physical therapy at Children's Hospital in

Seattle ever since.  The torticolis completely resolved at about 9 months.  We

then had an MRI and Cat Scan done to rule out other causes which was " normal "

and an X ray which showed that he had idiopathic infantile scoliosis with a

curve at 25 degrees.  They had us come back just last Tuesday and had another

Xray which showed that the curve had increased to 45 degrees and advised us to

have him cast for a brace.   They are making the brace right now but my

husband and I have decided to go ahead with the Mehta Casting at Shriner's as

soon as we can get him in. .  I found the ISOP website and have read the great

stories from other parents which have been amazing.  So that is where we are

at, scared and sad, but hopeful too.  Can't wait to talk to other families

about how all of this works and how they adapt to the casting.  One of the

questions I have is about physical

> therapy- is it helpful and should we keep doing it- or is it not?  I am

getting conflicting opinions so I thought I would ask?  Thank you so much and

looking forward to getting to know everyone and their stories.

> Thanks,

> Sonja

>

[Guest guest]

Hello, Sonja, welcome! You are on the right track and you are doing the right thing! I agree that a brace will not hold a progressive curve and will not correct or cure it, but a Mehta cast can, if proper treatment is begun in time. You may already know this, but the best time to start is under age two and under 50-60 degrees- with a standing X-ray being more accurate. Basically, the general rule of thumb is that the younger you begin and the lower the number of the curve (s), the better.

We do not do PT- our son is almost 3, he began treatment at 19 months, and he is very active. He sort of is a lean muscular type, so his core muscles are anot a concern for us. I would base that on the individual child, and I'm sure it could help and can't hurt. It sounds like other children have definitely benefitted from it.

Ask any and all questions you have of this great group! : ) Heidi, Bexon's Mommy, (2 and a half years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: Sonja Egger <sonjapetersen2002@...>infantile scoliosis treatment Sent: Sun, June 13, 2010 9:12:35 PMSubject: Just Joining the group!

Hello everyone,

My name is Sonja and my husband and I have a son Jake who is 10 1/2 months old and was diagnosed with torticolisat about 3 months and we have done physical therapy at Children's Hospital in Seattle ever since. The torticolis completely resolved at about 9 months. We then had an MRI and Cat Scan done to rule out other causes which was "normal" and an X ray which showed that he had idiopathic infantile scoliosis with a curve at 25 degrees. They had us come back just last Tuesday and had another Xray which showed that the curve had increased to 45 degrees and advised us to have him cast for a brace. They are making the brace right now but my husband and I have decided to go ahead with the Mehta Casting at Shriner's as soon as we can get him in. . I found the ISOP website and have read the great stories from other parents which have been

amazing. So that is where we are at, scared and sad, but hopeful too. Can't wait to talk to other families about how all of this works and how they adapt to the casting. One of the questions I have is about physical therapy- is it helpful and should we keep doing it- or is it not? I am getting conflicting opinions so I thought I would ask? Thank you so much and looking forward to getting to know everyone and their stories.Thanks,Sonja

[Guest guest]

Hi le,

Hope you don't mind my chiming in, our experience with our Children's Hospital- while an excellent hospital in L.A.- was that they had little to no experience in how to properly treat PIS (without heading for multiple spinal surgeries beginning at age 2). It still seems crazy to me that we have to travel out of this major metropolitan area, but it's true. I would get a current X-ray where you can, and email or mail it to a Shriners or other Mehta trained doctor to get a current read/opinion and to be on the safe side, in case the curve is progressive. I just know how fast some curves can worsen, but hopefully your child will self-resolve.

Heidi, Bexon's Mommy, (2 and a half years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: leB <mylameoww@...>infantile scoliosis treatment Sent: Mon, June 14, 2010 8:15:38 AMSubject: Re: Just Joining the group!

Hi Sonya welcome to the group! I agree PT can only help. My son is 12 mos and has been seen at Childrens Seattle also. I hope you don't mind I ask you question about your son, I am curious if there were any other symptoms/concerns that your son was reccomended the MRI/cat scan?? and did you go back for follow up xray at 1 only 1 month?? I am just trying to figure out if should be trying harder to get my son evaluated sooner or not?? we saw ortho 3 mos ago his curve was estimated at 10 degrees curve I was told to come back in 6 months. I have called repeatedly and been told to wait 6 mos. I worry if he needs an MRI especially since he has a couple dark patches his lower back and his PT and I see no posture improvement for the last 6 months(since 6 mos). The ortho at Childrens was not too worried but I am since we see no improvement and I also have scolio. MY son has been in PT since 4 mos for the tort ( not at Childrens) but seen at Seattle Childrens

for his plagio and the ortho eval his spine. We are doing ongoing PT to try and straighten him out he will not sit straight I am feeling really frustrated and confused.are you going to go to Portland shriners? I am not sure if i should be taking him there for eval instead or continue to wait and go back to Seattle. its been extra hard for me since husband is not concerned and thinks we need to just "listen to" the ortho advice we saw at Childrens. sorry all the questions, thanks for any advice on your experience there.le>> Hi Sonya, >      Jack's Story is very similiar to 's. We started therapy for Torticollis at about 5

months. His Scoliosis wasn't diagnosed until 10 months old with a 67 degree curve. was casted at 10 months and has continued therapy throughout the entire casting process. We have found the therapy to help with his mobility while in cast. learned to crawl and walk in cast.  Through therapy he perfected specific range of motion moves such as getting up from sitting and lying flat which were extremely hard otherwise. He is now able to squat from stand and pick items up, climb stairs, etc... Although I don't think the therapy has any direct impact on his curve, it has improved his core balance and muscle tone. If continuing is an option, it is something I would recommend. >      I think you have made the best decision for Jake in regards to casting. Bracing while effective in maintaining

correction gained through casting, is not successful in correcting an existing curve. Many children have had their curves progress while braced if the ideal correction is not first gained. I think you will be amazed at his progress once the first cast is applied. Best of luck and welcome to the group.  >  Catie,Cody(9) & 's(17mo)mom (in 3rd cast 47*out of cast, 10* in cast) proudly at Chicago Shriners > > > > > ________________________________> From: Sonja Egger <sonjapetersen2002@...>> infantile scoliosis treatment > Sent: Sun, June 13, 2010 11:12:35 PM> Subject: Just Joining the group!> >  > Hello everyone,> My

name is Sonja and my husband and I have a son Jake who is 10 1/2 months old and was diagnosed with torticolis> at about 3 months and we have done physical therapy at Children's Hospital in Seattle ever since. The torticolis completely resolved at about 9 months. We then had an MRI and Cat Scan done to rule out other causes which was "normal" and an X ray which showed that he had idiopathic infantile scoliosis with a curve at 25 degrees. They had us come back just last Tuesday and had another Xray which showed that the curve had increased to 45 degrees and advised us to have him cast for a brace.   They are making the brace right now but my husband and I have decided to go ahead with the Mehta Casting at Shriner's as soon as we can get him in. . I found the ISOP website and have read the great stories from other parents which have been amazing. So that is where we are at,

scared and sad, but hopeful too. Can't wait to talk to other families about how all of this works and how they adapt to the casting. One of the questions I have is about physical> therapy- is it helpful and should we keep doing it- or is it not? I am getting conflicting opinions so I thought I would ask? Thank you so much and looking forward to getting to know everyone and their stories.> Thanks,> Sonja>