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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,

> > >

> >

>

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Heidi & ,

I suppose I am trying to be naively optimistic. Unfortunately, I am not able to

get a sooner appointment in Vancouver at our centre for Xrays sooner than

February, and the Shriner's we saw in Portland aren't willing to see us and now

say they don't think she is likely a good candidate for casting. I will contact

them again, but not holding my breath. I suppose I should apply to another

Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her

reflux, changing tube feeding formula, finalizing order of rehab push chair,

trouble with hearing aids, getting caught up on therapy appointments, the list

goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in

my gut, but I had talked myself into listening to all the professionals that

have encouraged me to leave the stress of her back for a couple more months as

she heals from the decompression surgery. I'm also feeling the affects of the

time spent away from my 5 year old daughter, and the thought of leaving her

again for a Shriner's visit would be difficut too.

Kim

> >

> > 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,

> >

>

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Heidi & ,

I suppose I am trying to be naively optimistic. Unfortunately, I am not able to

get a sooner appointment in Vancouver at our centre for Xrays sooner than

February, and the Shriner's we saw in Portland aren't willing to see us and now

say they don't think she is likely a good candidate for casting. I will contact

them again, but not holding my breath. I suppose I should apply to another

Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her

reflux, changing tube feeding formula, finalizing order of rehab push chair,

trouble with hearing aids, getting caught up on therapy appointments, the list

goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in

my gut, but I had talked myself into listening to all the professionals that

have encouraged me to leave the stress of her back for a couple more months as

she heals from the decompression surgery. I'm also feeling the affects of the

time spent away from my 5 year old daughter, and the thought of leaving her

again for a Shriner's visit would be difficut too.

Kim

> >

> > 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,

> >

>

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Heidi & ,

I suppose I am trying to be naively optimistic. Unfortunately, I am not able to

get a sooner appointment in Vancouver at our centre for Xrays sooner than

February, and the Shriner's we saw in Portland aren't willing to see us and now

say they don't think she is likely a good candidate for casting. I will contact

them again, but not holding my breath. I suppose I should apply to another

Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her

reflux, changing tube feeding formula, finalizing order of rehab push chair,

trouble with hearing aids, getting caught up on therapy appointments, the list

goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in

my gut, but I had talked myself into listening to all the professionals that

have encouraged me to leave the stress of her back for a couple more months as

she heals from the decompression surgery. I'm also feeling the affects of the

time spent away from my 5 year old daughter, and the thought of leaving her

again for a Shriner's visit would be difficut too.

Kim

> >

> > 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,

> >

>

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Hi Kim,

I would be overwhelmed with all that you are dealing with, too. There are other mothers in this group who have dealt with their child having more syndromes and complications than mine, hopefully they will chime in with their advice. You are the mother and advocate for your little one, and only you can make the desicions that you feel are right, in your gut, for your child's future.

If we had not moved heaven and earth when we got the news about the serious nature of progressive infantile scoliosis, our child would be facing a very diffferent future, one with multiple, invasive spinal surgeies that have more than a hundred percent complication rate. Sometimes what looks harder and IS harder in the beginning will be the far easier route in the long run, for both you and your child.

I feel for what you're going through, and your precious girl, and I don't want to add to your burden in any way!

That's just my one cent opinion, because on our last hospital trip, I saw in person what happens when a child does not get Early Treatment casting in Mehta's Method. It was Olivia, 's beautiful daughter, in the hospital yet again at age 11, with her third halo traction applied to her head, having just had VEPTR rods removed, with metal hooks embedded, maybe permanently, in her bones. Her spine had spontaneously fused in places where it shouldn't have at this young age, and she had growing rods inserted- over 2 months in the hospital for her and her Mom and family. started this group so this wouldn't happen to any other child, when there is a better alternative, only if begun in time.

I just want you to have the facts, I am just a Mom myself. I write this from love on my Thanksgiving Day, when I should be preparing for my family to arrive!

Best regards, 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: Wed, November 25, 2009 11:59:08 PMSubject: Re: Isaiah

Heidi & ,I suppose I am trying to be naively optimistic. Unfortunately, I am not able to get a sooner appointment in Vancouver at our centre for Xrays sooner than February, and the Shriner's we saw in Portland aren't willing to see us and now say they don't think she is likely a good candidate for casting. I will contact them again, but not holding my breath. I suppose I should apply to another Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her reflux, changing tube feeding formula, finalizing order of rehab push chair, trouble with hearing aids, getting caught up on therapy appointments, the list goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in my gut, but I had talked myself into listening to all the professionals that have encouraged me to leave the stress of her back for a couple more months as she heals from the decompression surgery. I'm also feeling the affects of

the time spent away from my 5 year old daughter, and the thought of leaving her again for a Shriner's visit would be difficut too.Kim> >> > 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, > >>

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Hi Kim,

I would be overwhelmed with all that you are dealing with, too. There are other mothers in this group who have dealt with their child having more syndromes and complications than mine, hopefully they will chime in with their advice. You are the mother and advocate for your little one, and only you can make the desicions that you feel are right, in your gut, for your child's future.

If we had not moved heaven and earth when we got the news about the serious nature of progressive infantile scoliosis, our child would be facing a very diffferent future, one with multiple, invasive spinal surgeies that have more than a hundred percent complication rate. Sometimes what looks harder and IS harder in the beginning will be the far easier route in the long run, for both you and your child.

I feel for what you're going through, and your precious girl, and I don't want to add to your burden in any way!

That's just my one cent opinion, because on our last hospital trip, I saw in person what happens when a child does not get Early Treatment casting in Mehta's Method. It was Olivia, 's beautiful daughter, in the hospital yet again at age 11, with her third halo traction applied to her head, having just had VEPTR rods removed, with metal hooks embedded, maybe permanently, in her bones. Her spine had spontaneously fused in places where it shouldn't have at this young age, and she had growing rods inserted- over 2 months in the hospital for her and her Mom and family. started this group so this wouldn't happen to any other child, when there is a better alternative, only if begun in time.

I just want you to have the facts, I am just a Mom myself. I write this from love on my Thanksgiving Day, when I should be preparing for my family to arrive!

Best regards, 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: Wed, November 25, 2009 11:59:08 PMSubject: Re: Isaiah

Heidi & ,I suppose I am trying to be naively optimistic. Unfortunately, I am not able to get a sooner appointment in Vancouver at our centre for Xrays sooner than February, and the Shriner's we saw in Portland aren't willing to see us and now say they don't think she is likely a good candidate for casting. I will contact them again, but not holding my breath. I suppose I should apply to another Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her reflux, changing tube feeding formula, finalizing order of rehab push chair, trouble with hearing aids, getting caught up on therapy appointments, the list goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in my gut, but I had talked myself into listening to all the professionals that have encouraged me to leave the stress of her back for a couple more months as she heals from the decompression surgery. I'm also feeling the affects of

the time spent away from my 5 year old daughter, and the thought of leaving her again for a Shriner's visit would be difficut too.Kim> >> > 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, > >>

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Share on other sites

Hi Kim,

I would be overwhelmed with all that you are dealing with, too. There are other mothers in this group who have dealt with their child having more syndromes and complications than mine, hopefully they will chime in with their advice. You are the mother and advocate for your little one, and only you can make the desicions that you feel are right, in your gut, for your child's future.

If we had not moved heaven and earth when we got the news about the serious nature of progressive infantile scoliosis, our child would be facing a very diffferent future, one with multiple, invasive spinal surgeies that have more than a hundred percent complication rate. Sometimes what looks harder and IS harder in the beginning will be the far easier route in the long run, for both you and your child.

I feel for what you're going through, and your precious girl, and I don't want to add to your burden in any way!

That's just my one cent opinion, because on our last hospital trip, I saw in person what happens when a child does not get Early Treatment casting in Mehta's Method. It was Olivia, 's beautiful daughter, in the hospital yet again at age 11, with her third halo traction applied to her head, having just had VEPTR rods removed, with metal hooks embedded, maybe permanently, in her bones. Her spine had spontaneously fused in places where it shouldn't have at this young age, and she had growing rods inserted- over 2 months in the hospital for her and her Mom and family. started this group so this wouldn't happen to any other child, when there is a better alternative, only if begun in time.

I just want you to have the facts, I am just a Mom myself. I write this from love on my Thanksgiving Day, when I should be preparing for my family to arrive!

Best regards, 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: Wed, November 25, 2009 11:59:08 PMSubject: Re: Isaiah

Heidi & ,I suppose I am trying to be naively optimistic. Unfortunately, I am not able to get a sooner appointment in Vancouver at our centre for Xrays sooner than February, and the Shriner's we saw in Portland aren't willing to see us and now say they don't think she is likely a good candidate for casting. I will contact them again, but not holding my breath. I suppose I should apply to another Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her reflux, changing tube feeding formula, finalizing order of rehab push chair, trouble with hearing aids, getting caught up on therapy appointments, the list goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in my gut, but I had talked myself into listening to all the professionals that have encouraged me to leave the stress of her back for a couple more months as she heals from the decompression surgery. I'm also feeling the affects of

the time spent away from my 5 year old daughter, and the thought of leaving her again for a Shriner's visit would be difficut too.Kim> >> > 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, > >>

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Hi Kim,I am sorry you are going through so much right now. And I understand the pain of leaving your other child at home while your other child receives treatment. You need to do what you think is best. I just wanted to let you know that you can mail your child's info to the SLC Shriners and the doctor there will review it and let you know if he believes your child is a candidate. You can contact his care coordinator and she will tell you what to send. This is what we did. We never had an initial appointment, the surgeon reviewed my daughter's medical info and then we flew in to be casted.The care coordinator at SLC Shriners is Angie Livingston, , alivingston@...Liz, Mom to Keira - 3.5 yrs in 5th cast in SLCSubject: Re: IsaiahTo: infantile_scoliosis Date: Thursday, November 26, 2009, 7:59 AM

Heidi & ,

I suppose I am trying to be naively optimistic. Unfortunately, I am not able to get a sooner appointment in Vancouver at our centre for Xrays sooner than February, and the Shriner's we saw in Portland aren't willing to see us and now say they don't think she is likely a good candidate for casting. I will contact them again, but not holding my breath. I suppose I should apply to another Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her reflux, changing tube feeding formula, finalizing order of rehab push chair, trouble with hearing aids, getting caught up on therapy appointments, the list goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in my gut, but I had talked myself into listening to all the professionals that have encouraged me to leave the stress of her back for a couple more months as she heals from the decompression surgery. I'm also feeling the affects of the time spent away from my

5 year old daughter, and the thought of leaving her again for a Shriner's visit would be difficut too.

Kim

> >

> > 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,

> >

>

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Share on other sites

Hi Kim,I am sorry you are going through so much right now. And I understand the pain of leaving your other child at home while your other child receives treatment. You need to do what you think is best. I just wanted to let you know that you can mail your child's info to the SLC Shriners and the doctor there will review it and let you know if he believes your child is a candidate. You can contact his care coordinator and she will tell you what to send. This is what we did. We never had an initial appointment, the surgeon reviewed my daughter's medical info and then we flew in to be casted.The care coordinator at SLC Shriners is Angie Livingston, , alivingston@...Liz, Mom to Keira - 3.5 yrs in 5th cast in SLCSubject: Re: IsaiahTo: infantile_scoliosis Date: Thursday, November 26, 2009, 7:59 AM

Heidi & ,

I suppose I am trying to be naively optimistic. Unfortunately, I am not able to get a sooner appointment in Vancouver at our centre for Xrays sooner than February, and the Shriner's we saw in Portland aren't willing to see us and now say they don't think she is likely a good candidate for casting. I will contact them again, but not holding my breath. I suppose I should apply to another Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her reflux, changing tube feeding formula, finalizing order of rehab push chair, trouble with hearing aids, getting caught up on therapy appointments, the list goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in my gut, but I had talked myself into listening to all the professionals that have encouraged me to leave the stress of her back for a couple more months as she heals from the decompression surgery. I'm also feeling the affects of the time spent away from my

5 year old daughter, and the thought of leaving her again for a Shriner's visit would be difficut too.

Kim

> >

> > 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,

> >

>

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Share on other sites

Hi Kim,I am sorry you are going through so much right now. And I understand the pain of leaving your other child at home while your other child receives treatment. You need to do what you think is best. I just wanted to let you know that you can mail your child's info to the SLC Shriners and the doctor there will review it and let you know if he believes your child is a candidate. You can contact his care coordinator and she will tell you what to send. This is what we did. We never had an initial appointment, the surgeon reviewed my daughter's medical info and then we flew in to be casted.The care coordinator at SLC Shriners is Angie Livingston, , alivingston@...Liz, Mom to Keira - 3.5 yrs in 5th cast in SLCSubject: Re: IsaiahTo: infantile_scoliosis Date: Thursday, November 26, 2009, 7:59 AM

Heidi & ,

I suppose I am trying to be naively optimistic. Unfortunately, I am not able to get a sooner appointment in Vancouver at our centre for Xrays sooner than February, and the Shriner's we saw in Portland aren't willing to see us and now say they don't think she is likely a good candidate for casting. I will contact them again, but not holding my breath. I suppose I should apply to another Shriner's like SLC. Feeling overwhelmed right now trying to get a handle on her reflux, changing tube feeding formula, finalizing order of rehab push chair, trouble with hearing aids, getting caught up on therapy appointments, the list goes on, getting ready for Xmas - sorry to vent. I know you ladies are right in my gut, but I had talked myself into listening to all the professionals that have encouraged me to leave the stress of her back for a couple more months as she heals from the decompression surgery. I'm also feeling the affects of the time spent away from my

5 year old daughter, and the thought of leaving her again for a Shriner's visit would be difficut too.

Kim

> >

> > 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,

> >

>

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Liz,

Thanks for the info. i am also waiting for the shiners in spokane to contact me

back. they say they are doing casting now. but its good to know that you can

contact SLC and you dont have to fly in 2 times for the fist cast. Ill keep this

in mind if they dont do mehta casting in spokane. thanks

& Thaddeus

>

> > >

>

> > > 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,

>

> > >

>

> >

>

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Share on other sites

Liz,

Thanks for the info. i am also waiting for the shiners in spokane to contact me

back. they say they are doing casting now. but its good to know that you can

contact SLC and you dont have to fly in 2 times for the fist cast. Ill keep this

in mind if they dont do mehta casting in spokane. thanks

& Thaddeus

>

> > >

>

> > > 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,

>

> > >

>

> >

>

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Share on other sites

Liz,

Thanks for the info. i am also waiting for the shiners in spokane to contact me

back. they say they are doing casting now. but its good to know that you can

contact SLC and you dont have to fly in 2 times for the fist cast. Ill keep this

in mind if they dont do mehta casting in spokane. thanks

& Thaddeus

>

> > >

>

> > > 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,

>

> > >

>

> >

>

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