Isaiah

[Guest guest]

, I've been out of the loop since Isaiah's surgery.  I am so glad you are home and hope he is feeling great soon!  Good luck with your first casting! Patty, mom of Isabella, 2 years old today, in 1st cast (Rochester) & mom to & Evan

[Guest guest]

Thanks Patty,

We are headed home today and he seems to be MUCH better. Thanks for caring!

Subject: IsaiahTo: infantile_scoliosis Date: Thursday, August 27, 2009, 12:24 AM

,

I've been out of the loop since Isaiah's surgery. I am so glad you are home and hope he is feeling great soon! Good luck with your first casting!

Patty, mom of Isabella, 2 years old today, in 1st cast (Rochester) & mom to & Evan

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[Guest guest]

So glad he is doing MUCH better today . I am sure you are happy to be going home. It's been a long week for you. Joanmom to Hayden 2 1/262 degreesTreated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thursday, August 27, 2009 7:56:42 AMSubject: Re: Isaiah

Thanks Patty,

We are headed home today and he seems to be MUCH better. Thanks for caring!

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Thursday, August 27, 2009, 12:24 AM

,

I've been out of the loop since Isaiah's surgery. I am so glad you are home and hope he is feeling great soon! Good luck with your first casting!

Patty, mom of Isabella, 2 years old today, in 1st cast (Rochester) & mom to & Evan

start: 0000-00-00 end: 0000-00-00

start: 0000-00-00

end: 0000-00-00

[Guest guest]

Great job advocating, ! What strong Moms our kids have! Yay, YAY Isaiah!! Your doc really sounds like he is caring about you and your boy, I'm thrilled to hear he was wonderful and receptive. ALL of these docs doing Mehta style/EDF Early casting treatment correctly and with great medical knowledge, talent and love- whoa, do they deserve a round of APPLAUSE!!! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Fri, November 20, 2009 6:42:50 PMSubject: Re: Isaiah

Thanks everyone for your well wishes!

We just made it back to the hotel at 7:30pm. Its been a LONG day!! Everything went fine and Isaiah woke from Anesthesia like an angel. All smiles and babbling. He didnt even want to eat right away! I was amazed!

I did take Dr Mehta's article in to our doc at TSRHC and showed him the pics and read aloud some of her material to him. He was very receptive and agreed to make the tummy/chest cut out bigger and it is MUCH bigger! He said maybe next time he will put the side cutout in as well but didnt think he needed it as it would comprimise the integrity of the cast. He also anchored it at the hips this time. I asked about the table used and he said it is a risser table modified. I believe somewhere said this was ok, but not sure. Anyway i was able to ask all my questions/concerns and he was receptive so im happy. Ill try to post pics of the new cast on here. It looks much better than the last one.

When we went to xray the tech wanted to do laying down xray and we had done standing before so i wanted standing again so we can be consitant. She didnt want to because he cant walk yet. I was like well he can stand! She actually made me show her that he can stand and when he did we got to do them standing up. WHEW!! Seems like ive been advocating for my son all day!!

Everyone was real great to Isaiah though and our doc is great. He showed me xrays from before cast, after 1st cast and then today after cast. It is AMAZING!!!!!

We went from 50 degrees out of cast to 21 degrees in the 1st cast and now to 16 in this cast! So we got 5 degrees of correction! But the best part was seeing the difference between the xrays...who cares what number it is after seeing that! Im way to focused on numbers i realized today. Overall body shape is what really matters.

Anyway, my doc is doing great and we are happy to see he is receptive to our concerns though the table still bothers me a bit....

So that was our day!! Definately glad it is over! Next cast date is 1-29-2010

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]

,Wow, what a long day! I am really grateful that our doc does things the way he does because I would go crazy with that long of a day. I am so glad that things went so well and that he woke up so happy! It's great that you were able to have your questions answered and that your doc is willing to listen. Great news on the correction! Get some rest now. Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & EvanTo: infantile_scoliosis Sent: Fri, November 20, 2009 9:42:50 PMSubject: Re: Isaiah

Thanks everyone for your well wishes!

We just made it back to the hotel at 7:30pm. Its been a LONG day!! Everything went fine and Isaiah woke from Anesthesia like an angel. All smiles and babbling. He didnt even want to eat right away! I was amazed!

I did take Dr Mehta's article in to our doc at TSRHC and showed him the pics and read aloud some of her material to him. He was very receptive and agreed to make the tummy/chest cut out bigger and it is MUCH bigger! He said maybe next time he will put the side cutout in as well but didnt think he needed it as it would comprimise the integrity of the cast. He also anchored it at the hips this time. I asked about the table used and he said it is a risser table modified. I believe somewhere said this was ok, but not sure. Anyway i was able to ask all my questions/concerns and he was receptive so im happy. Ill try to post pics of the new cast on here. It looks much better than the last one.

When we went to xray the tech wanted to do laying down xray and we had done standing before so i wanted standing again so we can be consitant. She didnt want to because he cant walk yet. I was like well he can stand! She actually made me show her that he can stand and when he did we got to do them standing up. WHEW!! Seems like ive been advocating for my son all day!!

Everyone was real great to Isaiah though and our doc is great. He showed me xrays from before cast, after 1st cast and then today after cast. It is AMAZING!!!!!

We went from 50 degrees out of cast to 21 degrees in the 1st cast and now to 16 in this cast! So we got 5 degrees of correction! But the best part was seeing the difference between the xrays...who cares what number it is after seeing that! Im way to focused on numbers i realized today. Overall body shape is what really matters.

Anyway, my doc is doing great and we are happy to see he is receptive to our concerns though the table still bothers me a bit....

So that was our day!! Definately glad it is over! Next cast date is 1-29-2010

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]

,Wow, what a long day! I am really grateful that our doc does things the way he does because I would go crazy with that long of a day. I am so glad that things went so well and that he woke up so happy! It's great that you were able to have your questions answered and that your doc is willing to listen. Great news on the correction! Get some rest now. Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & EvanTo: infantile_scoliosis Sent: Fri, November 20, 2009 9:42:50 PMSubject: Re: Isaiah

Thanks everyone for your well wishes!

We just made it back to the hotel at 7:30pm. Its been a LONG day!! Everything went fine and Isaiah woke from Anesthesia like an angel. All smiles and babbling. He didnt even want to eat right away! I was amazed!

I did take Dr Mehta's article in to our doc at TSRHC and showed him the pics and read aloud some of her material to him. He was very receptive and agreed to make the tummy/chest cut out bigger and it is MUCH bigger! He said maybe next time he will put the side cutout in as well but didnt think he needed it as it would comprimise the integrity of the cast. He also anchored it at the hips this time. I asked about the table used and he said it is a risser table modified. I believe somewhere said this was ok, but not sure. Anyway i was able to ask all my questions/concerns and he was receptive so im happy. Ill try to post pics of the new cast on here. It looks much better than the last one.

When we went to xray the tech wanted to do laying down xray and we had done standing before so i wanted standing again so we can be consitant. She didnt want to because he cant walk yet. I was like well he can stand! She actually made me show her that he can stand and when he did we got to do them standing up. WHEW!! Seems like ive been advocating for my son all day!!

Everyone was real great to Isaiah though and our doc is great. He showed me xrays from before cast, after 1st cast and then today after cast. It is AMAZING!!!!!

We went from 50 degrees out of cast to 21 degrees in the 1st cast and now to 16 in this cast! So we got 5 degrees of correction! But the best part was seeing the difference between the xrays...who cares what number it is after seeing that! Im way to focused on numbers i realized today. Overall body shape is what really matters.

Anyway, my doc is doing great and we are happy to see he is receptive to our concerns though the table still bothers me a bit....

So that was our day!! Definately glad it is over! Next cast date is 1-29-2010

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]

AMEN! They deserve that and then some!!!!!

Tonya

mother of Nora

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]

AMEN! They deserve that and then some!!!!!

Tonya

mother of Nora

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]

AMEN! They deserve that and then some!!!!!

Tonya

mother of Nora

From: Patty Bowen <bowenpattyyahoo (DOT) com>Subject: [infantile_scoliosi s] IsaiahTo: infantile_scoliosis @yahoogroups. comDate: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]



,

Thats great. He got great correction and you were able to get all our answers. Good for you being a 'pushy mom'. These are our children, we should be able to get what we want, right. Well, Congrats on the great news!!!!!

Melinda

Mommy of Marlycia 10 mnths, Natalya 2 yrs

Scranton, PA

IsaiahTo: infantile_scoliosis Date: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]



,

Thats great. He got great correction and you were able to get all our answers. Good for you being a 'pushy mom'. These are our children, we should be able to get what we want, right. Well, Congrats on the great news!!!!!

Melinda

Mommy of Marlycia 10 mnths, Natalya 2 yrs

Scranton, PA

IsaiahTo: infantile_scoliosis Date: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]



,

Thats great. He got great correction and you were able to get all our answers. Good for you being a 'pushy mom'. These are our children, we should be able to get what we want, right. Well, Congrats on the great news!!!!!

Melinda

Mommy of Marlycia 10 mnths, Natalya 2 yrs

Scranton, PA

IsaiahTo: infantile_scoliosis Date: Friday, November 20, 2009, 8:49 AM

,

Best of luck today,will be thinking of you! Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & Evan

[Guest guest]

Hey , I saw the pic of Isaiah you posted and he looks great!! I'm sure

you'll have lots more peace of mind this time around(:

Dianna (mommy to Marcela, 18 mos. in 3rd cast)

>

>

> From: Patty Bowen <bowenpattyyahoo (DOT) com>

> Subject: [infantile_scoliosi s] Isaiah

> To: infantile_scoliosis @yahoogroups. com

> Date: Friday, November 20, 2009, 8:49 AM

>

>

>  

>

>

>

>

> , 

> Best of luck today,will be thinking of you!

>  Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to &

Evan

>

[Guest guest]

Hey , I saw the pic of Isaiah you posted and he looks great!! I'm sure

you'll have lots more peace of mind this time around(:

Dianna (mommy to Marcela, 18 mos. in 3rd cast)

>

>

> From: Patty Bowen <bowenpattyyahoo (DOT) com>

> Subject: [infantile_scoliosi s] Isaiah

> To: infantile_scoliosis @yahoogroups. com

> Date: Friday, November 20, 2009, 8:49 AM

>

>

>  

>

>

>

>

> , 

> Best of luck today,will be thinking of you!

>  Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to &

Evan

>

[Guest guest]

Hey , I saw the pic of Isaiah you posted and he looks great!! I'm sure

you'll have lots more peace of mind this time around(:

Dianna (mommy to Marcela, 18 mos. in 3rd cast)

>

>

> From: Patty Bowen <bowenpattyyahoo (DOT) com>

> Subject: [infantile_scoliosi s] Isaiah

> To: infantile_scoliosis @yahoogroups. com

> Date: Friday, November 20, 2009, 8:49 AM

>

>

>  

>

>

>

>

> , 

> Best of luck today,will be thinking of you!

>  Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to &

Evan

>

[Guest guest]

My daughter was born with slight kyphosis, but by 3 months of age I noticed

scoliosis beginning, by 7 months of age it was 25 degrees, by 12 months it was

37 degrees and at 24 months it was 78 degrees (she was compliant 15-20 hours per

day with TLSO brace since 7 months of age). MRI was done at 24 months and

Chiari 1 was found along with syrinx (CSF backing up in spinal cord).

Decompression surgery was done very quickly at 25 months as she had lots of

symptoms. (unable to swallow/tube fed, weak fine & gross motor skills, quickly

progressing scoliosis.

She is only 11 days post surgery and is back to where she was developmentally,

docs think surgery was successful and it takes time to know for sure if symptoms

will improve. Personally, I think the rib hump from her scoliosis is less and

shoulders aren't as uneven...so fingers crossed we'll see some improvement (I

believe generally 60% with syrinx/chiari see improvement in curvature if

decompression is done before around 5 years old, better improvement the younger

it's done). Our follow up Xrays & MRI are in 3 months.

Happy to answer any questions you have, please email me as I don't check this

board all the time.

Kim

(duplication of chromosome 15)

>

> hello. I have just joined the group and am anxious to learn all i can about

casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few

months later he was at 18 degrees and now at 10 months he is at 38 degrees! We

live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas

,Tx but have not heard back if we are approved yet or not. My son has had an

MRI and nothing was found except Chiari I Malformation which they say many

people have but we have to see an neurosurgeon just to be sure it isnt causing

any problems as he has Torticollis as well. I am interested if others have been

to ish Rite as well and what their experience was like. Thanks,

>

[Guest guest]

My daughter was born with slight kyphosis, but by 3 months of age I noticed

scoliosis beginning, by 7 months of age it was 25 degrees, by 12 months it was

37 degrees and at 24 months it was 78 degrees (she was compliant 15-20 hours per

day with TLSO brace since 7 months of age). MRI was done at 24 months and

Chiari 1 was found along with syrinx (CSF backing up in spinal cord).

Decompression surgery was done very quickly at 25 months as she had lots of

symptoms. (unable to swallow/tube fed, weak fine & gross motor skills, quickly

progressing scoliosis.

She is only 11 days post surgery and is back to where she was developmentally,

docs think surgery was successful and it takes time to know for sure if symptoms

will improve. Personally, I think the rib hump from her scoliosis is less and

shoulders aren't as uneven...so fingers crossed we'll see some improvement (I

believe generally 60% with syrinx/chiari see improvement in curvature if

decompression is done before around 5 years old, better improvement the younger

it's done). Our follow up Xrays & MRI are in 3 months.

Happy to answer any questions you have, please email me as I don't check this

board all the time.

Kim

(duplication of chromosome 15)

>

> hello. I have just joined the group and am anxious to learn all i can about

casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few

months later he was at 18 degrees and now at 10 months he is at 38 degrees! We

live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas

,Tx but have not heard back if we are approved yet or not. My son has had an

MRI and nothing was found except Chiari I Malformation which they say many

people have but we have to see an neurosurgeon just to be sure it isnt causing

any problems as he has Torticollis as well. I am interested if others have been

to ish Rite as well and what their experience was like. Thanks,

>

[Guest guest]

Hi Kim,

If you don't mind me jumping in- three months for follow up X-rays may not be the best idea, in my opinion, based on my experience and that of many Moms in this group.

Our son does not have Chiari, but he does have progessive infantile scoliosis, and it can progress very rapidly, depending on growth spurts and the invividual child, of course. Our son's curve was measured at 34 degress and was 61 degrees just six weeks later. Once you get into high numbers, early surgery is sometimes unavoidable.

Have you looked into Mehta Method EDF casting? With this method, generally the earlier the better, and it's important to go to a doctor who does it properly. It is not the same as a Risser cast, it is done on a 3 dimensional table, it is non-surgical (no cutting into the child's skin), and the casts have a large, mushroom shaped cut-out in the front and a smaller one in the back.

Most parents here will agree that surgery (such as spinal growth rod surgery) should be a last resort, not the ideal first/best option for young children with progressive cases. In many progessive cases, bracing does not hold the curve, or prevent it from getting worse. Not that my son's story is the same, but you can read it and see photos on a web site, Breezy Mama.com- it's titled "Crooked Love", under popular posts, on the left side of the home page.Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 21, 2009 9:06:48 PMSubject: Re: Isaiah

My daughter was born with slight kyphosis, but by 3 months of age I noticed scoliosis beginning, by 7 months of age it was 25 degrees, by 12 months it was 37 degrees and at 24 months it was 78 degrees (she was compliant 15-20 hours per day with TLSO brace since 7 months of age). MRI was done at 24 months and Chiari 1 was found along with syrinx (CSF backing up in spinal cord). Decompression surgery was done very quickly at 25 months as she had lots of symptoms. (unable to swallow/tube fed, weak fine & gross motor skills, quickly progressing scoliosis.She is only 11 days post surgery and is back to where she was developmentally, docs think surgery was successful and it takes time to know for sure if symptoms will improve. Personally, I think the rib hump from her scoliosis is less and shoulders aren't as uneven...so fingers crossed we'll see some improvement (I believe generally 60% with syrinx/chiari see improvement in curvature if

decompression is done before around 5 years old, better improvement the younger it's done). Our follow up Xrays & MRI are in 3 months. Happy to answer any questions you have, please email me as I don't check this board all the time.Kim (duplication of chromosome 15)>> hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has had an MRI and nothing was found

except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and what their experience was like. Thanks, >

[Guest guest]

Hi Kim,

If you don't mind me jumping in- three months for follow up X-rays may not be the best idea, in my opinion, based on my experience and that of many Moms in this group.

Our son does not have Chiari, but he does have progessive infantile scoliosis, and it can progress very rapidly, depending on growth spurts and the invividual child, of course. Our son's curve was measured at 34 degress and was 61 degrees just six weeks later. Once you get into high numbers, early surgery is sometimes unavoidable.

Have you looked into Mehta Method EDF casting? With this method, generally the earlier the better, and it's important to go to a doctor who does it properly. It is not the same as a Risser cast, it is done on a 3 dimensional table, it is non-surgical (no cutting into the child's skin), and the casts have a large, mushroom shaped cut-out in the front and a smaller one in the back.

Most parents here will agree that surgery (such as spinal growth rod surgery) should be a last resort, not the ideal first/best option for young children with progressive cases. In many progessive cases, bracing does not hold the curve, or prevent it from getting worse. Not that my son's story is the same, but you can read it and see photos on a web site, Breezy Mama.com- it's titled "Crooked Love", under popular posts, on the left side of the home page.Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 21, 2009 9:06:48 PMSubject: Re: Isaiah

My daughter was born with slight kyphosis, but by 3 months of age I noticed scoliosis beginning, by 7 months of age it was 25 degrees, by 12 months it was 37 degrees and at 24 months it was 78 degrees (she was compliant 15-20 hours per day with TLSO brace since 7 months of age). MRI was done at 24 months and Chiari 1 was found along with syrinx (CSF backing up in spinal cord). Decompression surgery was done very quickly at 25 months as she had lots of symptoms. (unable to swallow/tube fed, weak fine & gross motor skills, quickly progressing scoliosis.She is only 11 days post surgery and is back to where she was developmentally, docs think surgery was successful and it takes time to know for sure if symptoms will improve. Personally, I think the rib hump from her scoliosis is less and shoulders aren't as uneven...so fingers crossed we'll see some improvement (I believe generally 60% with syrinx/chiari see improvement in curvature if

decompression is done before around 5 years old, better improvement the younger it's done). Our follow up Xrays & MRI are in 3 months. Happy to answer any questions you have, please email me as I don't check this board all the time.Kim (duplication of chromosome 15)>> hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has had an MRI and nothing was found

except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and what their experience was like. Thanks, >

[Guest guest]

Hey Heidi,

I know You said thats sometimes when the curve gets too bad thats surgery is

unavoidable. i was wondering if you know if casting works for all degrees of

curves or is it onces its over a certian degree casting doesnt work?

im still waiting to hear back for the shriners hospital and i know i dont see

the specialist till jan 5th in vancouver. im going in to the orthopedic doctor

on nov 30th so im going to get her to do an X-ray to atleast see where its at.

he was already at 50 degrees and that was 2 months ago. Uhhggg i hate this

waiting game. hopefully we will be able to do casting soon.

If anyone elses can answer my questions that would be great.

Thanks

& Thaddeus 10 Months

> >

> > hello. I have just joined the group and am anxious to learn all i can about

casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few

months later he was at 18 degrees and now at 10 months he is at 38 degrees! We

live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas

,Tx but have not heard back if we are approved yet or not. My son has had an MRI

and nothing was found except Chiari I Malformation which they say many people

have but we have to see an neurosurgeon just to be sure it isnt causing any

problems as he has Torticollis as well. I am interested if others have been to

ish Rite as well and what their experience was like. Thanks,

> >

>

[Guest guest]

Kim,

Im behind what heidi has said. I would definately not wait to see if the scoliosis corrects its self. My son had his decompression surgery in August and was already worse when casted in September. My understanding from reading many articles on chiari/scoli and from talking to my NS is that it generally only improves in curves under about 20 degrees and then by only 10 degrees of improvement. Please dont wait and think the decompression surgery will fix the scoliosis. With that degree of curvature time is not on your side!! Sorry to sound negative but ive been there and casting is the best option to start with after the decompression surgery. Please at least repeat xrays soon.

Subject: Re: Re: IsaiahTo: infantile_scoliosis Date: Sunday, November 22, 2009, 5:40 PM

Hi Kim,

If you don't mind me jumping in- three months for follow up X-rays may not be the best idea, in my opinion, based on my experience and that of many Moms in this group.

Our son does not have Chiari, but he does have progessive infantile scoliosis, and it can progress very rapidly, depending on growth spurts and the invividual child, of course. Our son's curve was measured at 34 degress and was 61 degrees just six weeks later. Once you get into high numbers, early surgery is sometimes unavoidable.

Have you looked into Mehta Method EDF casting? With this method, generally the earlier the better, and it's important to go to a doctor who does it properly. It is not the same as a Risser cast, it is done on a 3 dimensional table, it is non-surgical (no cutting into the child's skin), and the casts have a large, mushroom shaped cut-out in the front and a smaller one in the back.

Most parents here will agree that surgery (such as spinal growth rod surgery) should be a last resort, not the ideal first/best option for young children with progressive cases. In many progessive cases, bracing does not hold the curve, or prevent it from getting worse. Not that my son's story is the same, but you can read it and see photos on a web site, Breezy Mama.com- it's titled "Crooked Love", under popular posts, on the left side of the home page.Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

From: Kim <ianandkim30@ hotmail.com>To: infantile_scoliosis @yahoogroups. comSent: Sat, November 21, 2009 9:06:48 PMSubject: [infantile_scoliosi s] Re: Isaiah

My daughter was born with slight kyphosis, but by 3 months of age I noticed scoliosis beginning, by 7 months of age it was 25 degrees, by 12 months it was 37 degrees and at 24 months it was 78 degrees (she was compliant 15-20 hours per day with TLSO brace since 7 months of age). MRI was done at 24 months and Chiari 1 was found along with syrinx (CSF backing up in spinal cord). Decompression surgery was done very quickly at 25 months as she had lots of symptoms. (unable to swallow/tube fed, weak fine & gross motor skills, quickly progressing scoliosis.She is only 11 days post surgery and is back to where she was developmentally, docs think surgery was successful and it takes time to know for sure if symptoms will improve. Personally, I think the rib hump from her scoliosis is less and shoulders aren't as uneven...so fingers crossed we'll see some improvement (I believe generally 60% with syrinx/chiari see improvement in curvature if

decompression is done before around 5 years old, better improvement the younger it's done). Our follow up Xrays & MRI are in 3 months. Happy to answer any questions you have, please email me as I don't check this board all the time.Kim (duplication of chromosome 15)>> hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has

had an MRI and nothing was found except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and what their experience was like. Thanks, >

[Guest guest]

It's great that he is under two years. A word of caution- sometimes these appointments, including the MRI, can book out a couple of months ahead. It's a very good idea to be politely pushy and proactive- getting the appointments lined up ahead of time, and asking for a cancellation slot if it comes up. I didn't know Spokane was doing Mehta casting.

Our Shriners doesn't do MRIs, so there is a chance you will have to get that elsewhere, first- maybe a nearby Children's Hospital? Do call the hospital directly and contact the Care Coordinator by phone or email, don't be shy! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sun, November 22, 2009 5:37:41 PMSubject: Re: Isaiah

Heidi,I contacted the Shiners and my local shriners faxed the application in for me to spokane( they called and asked about mehta casting and they said they are doing it there now. fingers crossed!) so its almost been 3 weeks since it was sent in so im thing i should hear something this week maybe about an apointment. i sent it picture of my sons back so they have an idea of what it looks like as well as all his x-rays. maybe i should give them a call tomorrow and see whats going on. atleast Thaddeus is well under the 2 year mark so that give me hope that we still we be able to go with the casting. He still needs to get a MRI done as well... > > >> > > hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has had an MRI and nothing was found except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and

what their experience was like. Thanks, > > >> >>

[Guest guest]

It's great that he is under two years. A word of caution- sometimes these appointments, including the MRI, can book out a couple of months ahead. It's a very good idea to be politely pushy and proactive- getting the appointments lined up ahead of time, and asking for a cancellation slot if it comes up. I didn't know Spokane was doing Mehta casting.

Our Shriners doesn't do MRIs, so there is a chance you will have to get that elsewhere, first- maybe a nearby Children's Hospital? Do call the hospital directly and contact the Care Coordinator by phone or email, don't be shy! Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sun, November 22, 2009 5:37:41 PMSubject: Re: Isaiah

Heidi,I contacted the Shiners and my local shriners faxed the application in for me to spokane( they called and asked about mehta casting and they said they are doing it there now. fingers crossed!) so its almost been 3 weeks since it was sent in so im thing i should hear something this week maybe about an apointment. i sent it picture of my sons back so they have an idea of what it looks like as well as all his x-rays. maybe i should give them a call tomorrow and see whats going on. atleast Thaddeus is well under the 2 year mark so that give me hope that we still we be able to go with the casting. He still needs to get a MRI done as well... > > >> > > hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has had an MRI and nothing was found except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and

what their experience was like. Thanks, > > >> >>

[Guest guest]

I'm sure someone else responded but you need to get the MRI done ASAP to make sure that it isn't congenital scoliosis. Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & EvanTo: infantile_scoliosis Sent: Sun, November 22, 2009

8:37:41 PMSubject: Re: Isaiah

Heidi,

I contacted the Shiners and my local shriners faxed the application in for me to spokane( they called and asked about mehta casting and they said they are doing it there now. fingers crossed!) so its almost been 3 weeks since it was sent in so im thing i should hear something this week maybe about an apointment. i sent it picture of my sons back so they have an idea of what it looks like as well as all his x-rays. maybe i should give them a call tomorrow and see whats going on. atleast Thaddeus is well under the 2 year mark so that give me hope that we still we be able to go with the casting. He still needs to get a MRI done as well...

> > >

> > > hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has had an MRI and nothing was found except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and what their experience was like. Thanks,

> > >

> >

>

[Guest guest]

I'm sure someone else responded but you need to get the MRI done ASAP to make sure that it isn't congenital scoliosis. Patty, mom of Isabella, 2 years old, in 3rd cast (Rochester) & mom to & EvanTo: infantile_scoliosis Sent: Sun, November 22, 2009

8:37:41 PMSubject: Re: Isaiah

Heidi,

I contacted the Shiners and my local shriners faxed the application in for me to spokane( they called and asked about mehta casting and they said they are doing it there now. fingers crossed!) so its almost been 3 weeks since it was sent in so im thing i should hear something this week maybe about an apointment. i sent it picture of my sons back so they have an idea of what it looks like as well as all his x-rays. maybe i should give them a call tomorrow and see whats going on. atleast Thaddeus is well under the 2 year mark so that give me hope that we still we be able to go with the casting. He still needs to get a MRI done as well...

> > >

> > > hello. I have just joined the group and am anxious to learn all i can about casting. My son was dx at 6 mos with infantile scoliosis at 12 dregees. A few months later he was at 18 degrees and now at 10 months he is at 38 degrees! We live in Killeen ,tx and have been referred to ish Rite Hospital in Dallas ,Tx but have not heard back if we are approved yet or not. My son has had an MRI and nothing was found except Chiari I Malformation which they say many people have but we have to see an neurosurgeon just to be sure it isnt causing any problems as he has Torticollis as well. I am interested if others have been to ish Rite as well and what their experience was like. Thanks,

> > >

> >

>