Re: Re: hey Deshea/bracing

[Guest guest]

I think they are keen on bracing. Remember Jake's curve was relatively small

compared to lots of other kiddos - 28o. His brace was working (he was already

down from 33o wearing brace parttime for one month), but they didn't know how

much longer it would work as Jake was growing quickly. Dr. K left it in our

hands if we wanted another brace which they would make in Erie or if we wanted

to cast. I asked him what he would do if it were his child, and he said he

could get the numbers down much faster and control the rotation with a cast.

Then he paused and said if it were his child, he would definitely cast.

He doesn't recommend a brace after casting for Jake (every child is different)

because Jake is relatively straight right now. This cast and the next will

serve as Jake's brace according to him and Dr. . I am a little nervous

about going brace-free and will try to push for at least parttime bracing

afterwards.

Hope this clears things up a little bit. It's hard because what works for one

doesn't always work for another. It seems like there are no absolutes, and

sometimes that is hard for me to deal with.

mom to and Jake

Claflin <noellesmommy@...> wrote:

This makes me wonder if they aren't so keen on bracing. I think Dr. K and Dr.

S both recommended not bracing Jake when he is done with his casts. You will

have to ask V about that though.

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

Exactly! If you're lucky, the brace maintains. If you're even luckier, it

could correct. It all depends on where the curve is. But a brace (according to

Dr. K) never addresses rotation.

mom to and Jake

Claflin <noellesmommy@...> wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

Thanks . Just wanted to make sure I had it right .

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

Hi ,

From my understanding the brace can't treat rotation and it's questionable

whether it even reduces a curve though as you already said all curves are

different. The brace can hold the curve in place though Ms Mehta would say you

lose that correct positioning every time you take the brace off.

Bridget's brace certainly holds her spine in a better position and it pushes

her curve to a straighter position but I believe it is actually growing while

the child is held in this corrected position that improves the curve.

It was very scary as well as exciting going back to a brace but because of the

connective tissue issues we really needed to build up some muscle. Hopefully

she's looking good enough in April to stay in a brace but we will have to wait

and see.

Good luck

Bert and Bridget

Claflin <noellesmommy@...> wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

I also wanted to add what Mehta told us regarding brace at ETTP. Bracing can

work for certain curves IF it is structurally correct and IF the parent/parents

are vigilent about putting brace right back on after diaper changes and/or bath.

She said the reason she doesn't usually advocate bracing is because she finds

that parents find an excuse for taking brace off whether child is complaining,

it is a hot day, it is child's birthday, etc. As we all have learned constant

support is what the spine needs, and often times it is the parent's lack of

committment (her words) that contributes to the brace being ineffective. She

thought Jake might have a good chance in the brace he had, but he was already

outgrowing it.

I've spoken to another mom on this list who agrees with this: if they would

cast mould each brace (instead of making subsequent braces with just

measurements), bracing might work for some of these kids with idiopathic scoli -

again depending of where the curve is. I did ask our beloved brace guy why they

didn't cast mould for each brace. He said it is too time-consuming and too

costly, and most insurance companies will not touch it. I know I've run off on

a tangent, but these are the things I think about....

mom to and Jake

bert lehane <bert_lehane@...> wrote:

Hi ,

From my understanding the brace can't treat rotation and it's questionable

whether it even reduces a curve though as you already said all curves are

different. The brace can hold the curve in place though Ms Mehta would say you

lose that correct positioning every time you take the brace off.

Bridget's brace certainly holds her spine in a better position and it pushes her

curve to a straighter position but I believe it is actually growing while the

child is held in this corrected position that improves the curve.

It was very scary as well as exciting going back to a brace but because of the

connective tissue issues we really needed to build up some muscle. Hopefully

she's looking good enough in April to stay in a brace but we will have to wait

and see.

Good luck

Bert and Bridget

Claflin wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

Just thought I would throw my two cents in here also. For Tracey and/or Robin,

our orthotist in San we have continued to travel to see even though we

have moved to San Angelo. We like his open mindedness, willingness to work with

Dr. D'Astous and he cast molds each brace, on a cotrell table. I know that

isn't the newest technology available, but the closest to and EDF type cast you

will find I think. He is great about follow-up and seems to be genuinely

concerned for Madison's correction and comfort.

I'm not sure, but I think Madison is one of the first on this group to really

complete this casting/bracing procedure and here's our experience: She went

into a TLSO for 3 weeks, while we awaited her first casting appt in SLC. She

wore 7 casts over an 18 month period of time and is now in her second brace.

She has been wearing it since her cast was removed and we are VERY diligent

about when it comes off. It only comes off at 1600 until 2000 everyday. NO

EXCEPTIONS what-so-ever. I don't want to compromise everything we've already

accomplished. I'm sorry she can't do everything she wants, when she wants, but

it's in her best interest and I'm not flexible at all on this point. We don't

remove it for diaper changes, just work around it. We look it just like the

cast, we worked around it, so now we must work around this too.

Madison's results have been phemnominal, more than we could have ever hoped for.

We are so thankful for this group, and Olivia, Shriner's and Dr.

D'Astous and her treatment team in San .

What I am getting at is this...in her first brace her curve increased by over

30 in just three weeks. Through our experience I have gathered, bracing will

not correct; however, after a series of EDF casts, following up with bracing has

been great for Madison so far. Of course each child, and each curve is

different, therefore responding differently to each scenario. Bracing has been

an effective aftercare program for us though. (post final cast 12 COBB and

currently at 4 COBB)

Not sure if this helps or just causes even more confusion, but just thought I

would chime in.

Jen

Viveiros <jviv314@...> wrote:

I also wanted to add what Mehta told us regarding brace at ETTP. Bracing can

work for certain curves IF it is structurally correct and IF the parent/parents

are vigilent about putting brace right back on after diaper changes and/or bath.

She said the reason she doesn't usually advocate bracing is because she finds

that parents find an excuse for taking brace off whether child is complaining,

it is a hot day, it is child's birthday, etc. As we all have learned constant

support is what the spine needs, and often times it is the parent's lack of

committment (her words) that contributes to the brace being ineffective. She

thought Jake might have a good chance in the brace he had, but he was already

outgrowing it.

I've spoken to another mom on this list who agrees with this: if they would

cast mould each brace (instead of making subsequent braces with just

measurements), bracing might work for some of these kids with idiopathic scoli -

again depending of where the curve is. I did ask our beloved brace guy why they

didn't cast mould for each brace. He said it is too time-consuming and too

costly, and most insurance companies will not touch it. I know I've run off on

a tangent, but these are the things I think about....

mom to and Jake

bert lehane <bert_lehane@...> wrote:

Hi ,

From my understanding the brace can't treat rotation and it's questionable

whether it even reduces a curve though as you already said all curves are

different. The brace can hold the curve in place though Ms Mehta would say you

lose that correct positioning every time you take the brace off.

Bridget's brace certainly holds her spine in a better position and it pushes her

curve to a straighter position but I believe it is actually growing while the

child is held in this corrected position that improves the curve.

It was very scary as well as exciting going back to a brace but because of the

connective tissue issues we really needed to build up some muscle. Hopefully

she's looking good enough in April to stay in a brace but we will have to wait

and see.

Good luck

Bert and Bridget

Claflin wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

We have also been very diligent with Bridget and her bracing. When Dr Santora

(filling in for Dr D " Astous) told me the thinking now was to give the kids 4

hours a day out of the brace I was scared stiff and actually found it hard to

give her any time out of brace besides bath time and swimming time.

However after the physio showed me specific exercises for Bridget to do to

build up her trunk muscles so that the muscles would have a better chance of

holding her spine in the corrected position I felt better about letting her

spend two hrs in the morning and 2 hours in the afternoon out of her brace.

I suppose April will tell if we are on the right track or losing the valuable

gains we have made through our 14 months of casting.

I can't see how a brace could reduce a rib hump either though I suppose that

is the same thing as saying bracing doesn't correct rotation isn't it?

Bert

<jenstewart73@...> wrote:

Just thought I would throw my two cents in here also. For Tracey and/or

Robin, our orthotist in San we have continued to travel to see even

though we have moved to San Angelo. We like his open mindedness, willingness to

work with Dr. D'Astous and he cast molds each brace, on a cotrell table. I know

that isn't the newest technology available, but the closest to and EDF type cast

you will find I think. He is great about follow-up and seems to be genuinely

concerned for Madison's correction and comfort.

I'm not sure, but I think Madison is one of the first on this group to really

complete this casting/bracing procedure and here's our experience: She went

into a TLSO for 3 weeks, while we awaited her first casting appt in SLC. She

wore 7 casts over an 18 month period of time and is now in her second brace.

She has been wearing it since her cast was removed and we are VERY diligent

about when it comes off. It only comes off at 1600 until 2000 everyday. NO

EXCEPTIONS what-so-ever. I don't want to compromise everything we've already

accomplished. I'm sorry she can't do everything she wants, when she wants, but

it's in her best interest and I'm not flexible at all on this point. We don't

remove it for diaper changes, just work around it. We look it just like the

cast, we worked around it, so now we must work around this too.

Madison's results have been phemnominal, more than we could have ever hoped for.

We are so thankful for this group, and Olivia, Shriner's and Dr.

D'Astous and her treatment team in San .

What I am getting at is this...in her first brace her curve increased by over

30 in just three weeks. Through our experience I have gathered, bracing will

not correct; however, after a series of EDF casts, following up with bracing has

been great for Madison so far. Of course each child, and each curve is

different, therefore responding differently to each scenario. Bracing has been

an effective aftercare program for us though. (post final cast 12 COBB and

currently at 4 COBB)

Not sure if this helps or just causes even more confusion, but just thought I

would chime in.

Jen

Viveiros <jviv314@...> wrote:

I also wanted to add what Mehta told us regarding brace at ETTP. Bracing can

work for certain curves IF it is structurally correct and IF the parent/parents

are vigilent about putting brace right back on after diaper changes and/or bath.

She said the reason she doesn't usually advocate bracing is because she finds

that parents find an excuse for taking brace off whether child is complaining,

it is a hot day, it is child's birthday, etc. As we all have learned constant

support is what the spine needs, and often times it is the parent's lack of

committment (her words) that contributes to the brace being ineffective. She

thought Jake might have a good chance in the brace he had, but he was already

outgrowing it.

I've spoken to another mom on this list who agrees with this: if they would

cast mould each brace (instead of making subsequent braces with just

measurements), bracing might work for some of these kids with idiopathic scoli -

again depending of where the curve is. I did ask our beloved brace guy why they

didn't cast mould for each brace. He said it is too time-consuming and too

costly, and most insurance companies will not touch it. I know I've run off on

a tangent, but these are the things I think about....

mom to and Jake

bert lehane <bert_lehane@...> wrote:

Hi ,

From my understanding the brace can't treat rotation and it's questionable

whether it even reduces a curve though as you already said all curves are

different. The brace can hold the curve in place though Ms Mehta would say you

lose that correct positioning every time you take the brace off.

Bridget's brace certainly holds her spine in a better position and it pushes her

curve to a straighter position but I believe it is actually growing while the

child is held in this corrected position that improves the curve.

It was very scary as well as exciting going back to a brace but because of the

connective tissue issues we really needed to build up some muscle. Hopefully

she's looking good enough in April to stay in a brace but we will have to wait

and see.

Good luck

Bert and Bridget

Claflin wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

I think it's fantastic that he cast moulds each brace. I wonder why they

can't/won't touch it here on the east coast then????? I guess it's all in the

mindset of the ortho.

I, too, was like a drill sergeant with Jake in his brace. Because of his age

then, he adapted easily and couldn't complain too much. How old is Madison now?

I'm glad she got great results with casting and now bracing. It's what we all

hope/pray/long for.

mom to and Jake

<jenstewart73@...> wrote:

Just thought I would throw my two cents in here also. For Tracey and/or Robin,

our orthotist in San we have continued to travel to see even though we

have moved to San Angelo. We like his open mindedness, willingness to work with

Dr. D'Astous and he cast molds each brace, on a cotrell table. I know that isn't

the newest technology available, but the closest to and EDF type cast you will

find I think. He is great about follow-up and seems to be genuinely concerned

for Madison's correction and comfort.

I'm not sure, but I think Madison is one of the first on this group to really

complete this casting/bracing procedure and here's our experience: She went into

a TLSO for 3 weeks, while we awaited her first casting appt in SLC. She wore 7

casts over an 18 month period of time and is now in her second brace. She has

been wearing it since her cast was removed and we are VERY diligent about when

it comes off. It only comes off at 1600 until 2000 everyday. NO EXCEPTIONS

what-so-ever. I don't want to compromise everything we've already accomplished.

I'm sorry she can't do everything she wants, when she wants, but it's in her

best interest and I'm not flexible at all on this point. We don't remove it for

diaper changes, just work around it. We look it just like the cast, we worked

around it, so now we must work around this too.

Madison's results have been phemnominal, more than we could have ever hoped for.

We are so thankful for this group, and Olivia, Shriner's and Dr.

D'Astous and her treatment team in San .

What I am getting at is this...in her first brace her curve increased by over 30

in just three weeks. Through our experience I have gathered, bracing will not

correct; however, after a series of EDF casts, following up with bracing has

been great for Madison so far. Of course each child, and each curve is

different, therefore responding differently to each scenario. Bracing has been

an effective aftercare program for us though. (post final cast 12 COBB and

currently at 4 COBB)

Not sure if this helps or just causes even more confusion, but just thought I

would chime in.

Jen

Viveiros wrote:

I also wanted to add what Mehta told us regarding brace at ETTP. Bracing can

work for certain curves IF it is structurally correct and IF the parent/parents

are vigilent about putting brace right back on after diaper changes and/or bath.

She said the reason she doesn't usually advocate bracing is because she finds

that parents find an excuse for taking brace off whether child is complaining,

it is a hot day, it is child's birthday, etc. As we all have learned constant

support is what the spine needs, and often times it is the parent's lack of

committment (her words) that contributes to the brace being ineffective. She

thought Jake might have a good chance in the brace he had, but he was already

outgrowing it.

I've spoken to another mom on this list who agrees with this: if they would cast

mould each brace (instead of making subsequent braces with just measurements),

bracing might work for some of these kids with idiopathic scoli - again

depending of where the curve is. I did ask our beloved brace guy why they didn't

cast mould for each brace. He said it is too time-consuming and too costly, and

most insurance companies will not touch it. I know I've run off on a tangent,

but these are the things I think about....

mom to and Jake

bert lehane wrote:

Hi ,

From my understanding the brace can't treat rotation and it's questionable

whether it even reduces a curve though as you already said all curves are

different. The brace can hold the curve in place though Ms Mehta would say you

lose that correct positioning every time you take the brace off.

Bridget's brace certainly holds her spine in a better position and it pushes her

curve to a straighter position but I believe it is actually growing while the

child is held in this corrected position that improves the curve.

It was very scary as well as exciting going back to a brace but because of the

connective tissue issues we really needed to build up some muscle. Hopefully

she's looking good enough in April to stay in a brace but we will have to wait

and see.

Good luck

Bert and Bridget

Claflin wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

> > > removed]

> > >

> > >

[Guest guest]

We are very happy with the results achieved through casting and bracing and wish

the very same to all of you! She is currently 29 months old.

Viveiros <jviv314@...> wrote: I think it's fantastic that he

cast moulds each brace. I wonder why they can't/won't touch it here on the east

coast then????? I guess it's all in the mindset of the ortho.

I, too, was like a drill sergeant with Jake in his brace. Because of his age

then, he adapted easily and couldn't complain too much. How old is Madison now?

I'm glad she got great results with casting and now bracing. It's what we all

hope/pray/long for.

mom to and Jake

<jenstewart73@...> wrote:

Just thought I would throw my two cents in here also. For Tracey and/or Robin,

our orthotist in San we have continued to travel to see even though we

have moved to San Angelo. We like his open mindedness, willingness to work with

Dr. D'Astous and he cast molds each brace, on a cotrell table. I know that isn't

the newest technology available, but the closest to and EDF type cast you will

find I think. He is great about follow-up and seems to be genuinely concerned

for Madison's correction and comfort.

I'm not sure, but I think Madison is one of the first on this group to really

complete this casting/bracing procedure and here's our experience: She went into

a TLSO for 3 weeks, while we awaited her first casting appt in SLC. She wore 7

casts over an 18 month period of time and is now in her second brace. She has

been wearing it since her cast was removed and we are VERY diligent about when

it comes off. It only comes off at 1600 until 2000 everyday. NO EXCEPTIONS

what-so-ever. I don't want to compromise everything we've already accomplished.

I'm sorry she can't do everything she wants, when she wants, but it's in her

best interest and I'm not flexible at all on this point. We don't remove it for

diaper changes, just work around it. We look it just like the cast, we worked

around it, so now we must work around this too.

Madison's results have been phemnominal, more than we could have ever hoped for.

We are so thankful for this group, and Olivia, Shriner's and Dr.

D'Astous and her treatment team in San .

What I am getting at is this...in her first brace her curve increased by over 30

in just three weeks. Through our experience I have gathered, bracing will not

correct; however, after a series of EDF casts, following up with bracing has

been great for Madison so far. Of course each child, and each curve is

different, therefore responding differently to each scenario. Bracing has been

an effective aftercare program for us though. (post final cast 12 COBB and

currently at 4 COBB)

Not sure if this helps or just causes even more confusion, but just thought I

would chime in.

Jen

Viveiros wrote:

I also wanted to add what Mehta told us regarding brace at ETTP. Bracing can

work for certain curves IF it is structurally correct and IF the parent/parents

are vigilent about putting brace right back on after diaper changes and/or bath.

She said the reason she doesn't usually advocate bracing is because she finds

that parents find an excuse for taking brace off whether child is complaining,

it is a hot day, it is child's birthday, etc. As we all have learned constant

support is what the spine needs, and often times it is the parent's lack of

committment (her words) that contributes to the brace being ineffective. She

thought Jake might have a good chance in the brace he had, but he was already

outgrowing it.

I've spoken to another mom on this list who agrees with this: if they would cast

mould each brace (instead of making subsequent braces with just measurements),

bracing might work for some of these kids with idiopathic scoli - again

depending of where the curve is. I did ask our beloved brace guy why they didn't

cast mould for each brace. He said it is too time-consuming and too costly, and

most insurance companies will not touch it. I know I've run off on a tangent,

but these are the things I think about....

mom to and Jake

bert lehane wrote:

Hi ,

From my understanding the brace can't treat rotation and it's questionable

whether it even reduces a curve though as you already said all curves are

different. The brace can hold the curve in place though Ms Mehta would say you

lose that correct positioning every time you take the brace off.

Bridget's brace certainly holds her spine in a better position and it pushes her

curve to a straighter position but I believe it is actually growing while the

child is held in this corrected position that improves the curve.

It was very scary as well as exciting going back to a brace but because of the

connective tissue issues we really needed to build up some muscle. Hopefully

she's looking good enough in April to stay in a brace but we will have to wait

and see.

Good luck

Bert and Bridget

Claflin wrote:

,

So, even though the brace can reduce the curve, from what Dr. K said, it sounds

like the cast addresses the rotation whereas a brace does not. Am I correct?

Noelle (12-2-01)

Ian (8-15-04)

hey Deshea

> > > " infantile scoliosis "

> > >

> > > Is this going to be Lucas's last cast? When he gets

> > > his last one, does that mean you won't be going to

> > > Shriners anymore? Do they do the bracing there?

> > >

> > >

> > > Noelle (12-2-01)

> > > Ian (8-15-04)

> > >

> > > [Non-text portions of this message have been

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