Re: Brace Question--& Solana update

[Guest guest]

Hi Jen & Bert & anyone else who has experience w/bracing...

I'm kind of thrown off right now because I just spoke with my

husband & also Dr. about Solana's brace. She's @ 15o Cobb

out of cast, I won't know what she measures in her brace until she

has it on later today. But once she has it on he said we can just

f/u w/our local Ortho here @ Children's Hospital for x-rays every 2-

3 mos. to make sure it's holding her. He said that we shouldn't have

to worry about refitting her for a new brace anytime soon, probably

wouldn't have to worry about it for the next year or so! That really

shocked me because I didn't realize she'd be wearing it that long

inevitably? Or that it would get her through a whole years worth of

growth. He didn't seem to have any idea or prognosis on when she

might be able to be weaned off of it if ever, just that she's going

to be in a brace for the next year? Is this what you were told

initially too Jen? What was your guys' plan/course of action after

having his first brace fit and on? And where were you being treated

again?

I realize that many Scoli. kids from the past had to grow up in

bracing but I thought the whole idea of early treatment w/serial

casting was to be able to train the spine early enough to where it

would be strong enough to wean out of a brace eventually. Just

curious about what's going on w/other kids & bracing, because to me

it sounded like this is going to be a part of her life for a long

time & I thought a permenantly corrected state (w/no support) was

our goal.. have I been wishfully thinking that that goal would be

approaching sooner than a year plus?? The surprise is a whole new

upset to me. I actually wouldn't even mind her having to go through

another year of casting and/or bracing, or even two, I'm just

wondering what seems to be the " norm " with children who have already

gone through. I realize in actuality real goal is to avoid severe

deformity but I guess I just had my hopes up for her to be able to

live a semi-normal childhood like some of the kids here who are now

brace free.

QUESTION TO ANYONE WHO'S MOVED FROM CASTING TO BRACING: How long did

your child have a brace before you were able to wean them out? And

how many are currently still in a brace, how long has your child

been in one?

Sorry for the length here, I don't mean to sound ungreatful for

where we are @ this point in her treatment, the idea of her having

to grow up in a brace is saddening to me though & I just hope I'm

completely jumping the boat on what I got out of the conversation..

I'm sure there's simply no way to know @ this point, that's why it

I'm looking for shared experiences from anyone I haven't already. I

know Madison's story was 2 braces in 8 mos. before weaning right?

Anyone else have any input? Thank you so much in advance for it if

so, It's very much appreciated!! Sincerest gratitude, ~Joy & Sol

> I was wondering how long typically, a brace lasts before they

outgrow

> it. Evanlee is 1 and has only been in her brace for a couple of

> months, but of course, I think it's getting too tight and she

coughs

> alot when she is in it.

>

>

>

> __________________________________________________

>

[Guest guest]

Initially I thought the brace was a 6 month deal, but then I know our doctor has

recommended a year to another parent. I assume that will his recommendation for

us when we get to that point. I know Mehta says 6 months, but I think Shriners

is being conservative which actually makes me feel a bit better.

Noelle (12-2-01)

Ian (8-15-04)

Re: Brace Question-- & Solana update

Hi Jen & Bert & anyone else who has experience w/bracing...

I'm kind of thrown off right now because I just spoke with my

husband & also Dr. about Solana's brace. She's @ 15o Cobb

out of cast, I won't know what she measures in her brace until she

has it on later today. But once she has it on he said we can just

f/u w/our local Ortho here @ Children's Hospital for x-rays every 2-

3 mos. to make sure it's holding her. He said that we shouldn't have

to worry about refitting her for a new brace anytime soon, probably

wouldn't have to worry about it for the next year or so! That really

shocked me because I didn't realize she'd be wearing it that long

inevitably? Or that it would get her through a whole years worth of

growth. He didn't seem to have any idea or prognosis on when she

might be able to be weaned off of it if ever, just that she's going

to be in a brace for the next year? Is this what you were told

initially too Jen? What was your guys' plan/course of action after

having his first brace fit and on? And where were you being treated

again?

I realize that many Scoli. kids from the past had to grow up in

bracing but I thought the whole idea of early treatment w/serial

casting was to be able to train the spine early enough to where it

would be strong enough to wean out of a brace eventually. Just

curious about what's going on w/other kids & bracing, because to me

it sounded like this is going to be a part of her life for a long

time & I thought a permenantly corrected state (w/no support) was

our goal.. have I been wishfully thinking that that goal would be

approaching sooner than a year plus?? The surprise is a whole new

upset to me. I actually wouldn't even mind her having to go through

another year of casting and/or bracing, or even two, I'm just

wondering what seems to be the " norm " with children who have already

gone through. I realize in actuality real goal is to avoid severe

deformity but I guess I just had my hopes up for her to be able to

live a semi-normal childhood like some of the kids here who are now

brace free.

QUESTION TO ANYONE WHO'S MOVED FROM CASTING TO BRACING: How long did

your child have a brace before you were able to wean them out? And

how many are currently still in a brace, how long has your child

been in one?

Sorry for the length here, I don't mean to sound ungreatful for

where we are @ this point in her treatment, the idea of her having

to grow up in a brace is saddening to me though & I just hope I'm

completely jumping the boat on what I got out of the conversation..

I'm sure there's simply no way to know @ this point, that's why it

I'm looking for shared experiences from anyone I haven't already. I

know Madison's story was 2 braces in 8 mos. before weaning right?

Anyone else have any input? Thank you so much in advance for it if

so, It's very much appreciated!! Sincerest gratitude, ~Joy & Sol

> I was wondering how long typically, a brace lasts before they

outgrow

> it. Evanlee is 1 and has only been in her brace for a couple of

> months, but of course, I think it's getting too tight and she

coughs

> alot when she is in it.

>

>

>

> __________________________________________________

>

[Guest guest]

Thanks , that does make me feel better & I don't mind a year

either.. was just not getting any speculation after the fact that

got me worried like, statistically with the treatment, we ARE going

to get to wean her right? As of now it's been 9 mos., so another

year won't even be 2 yrs. Guess I'm just looking for affirmation

she'll be able to be brace free too at some point Thanks for the

input! -Joy

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple

of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Joy, I also believe it is 6 -12 months. Don't worry, Solano won't be in it

forever. I think they may start weening here from the brace even by 6th months

or before. I am a little surprised they think she might fit in the brace for a

year. I'd be shocked if she didn't need to be fit for a new one before that. I

know it's hard not to worry, but the brace thing is also very temporary and

worth it.

/Cole

mosunshinebaby <mosunshinebaby@...> wrote:

Thanks , that does make me feel better & I don't mind a year

either.. was just not getting any speculation after the fact that

got me worried like, statistically with the treatment, we ARE going

to get to wean her right? As of now it's been 9 mos., so another

year won't even be 2 yrs. Guess I'm just looking for affirmation

she'll be able to be brace free too at some point Thanks for the

input! -Joy

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple

of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Yeah, I am sure they will start to wean her at some point. But, I don't know

when that would be. I think Shriner's is also very conservative when

speculating about how long treatment will take. I think they'd rather not try

to estimate and get someone's hopes up only to have things take longer than they

thought they would.

Noelle (12-2-01)

Ian (8-15-04)

Re: Brace Question-- & Solana update

Thanks , that does make me feel better & I don't mind a year

either.. was just not getting any speculation after the fact that

got me worried like, statistically with the treatment, we ARE going

to get to wean her right? As of now it's been 9 mos., so another

year won't even be 2 yrs. Guess I'm just looking for affirmation

she'll be able to be brace free too at some point Thanks for the

input! -Joy

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple

of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Geez it's good to hear affirmation that I'm on the same page

w/everyone on this! Relieved just to hear from the 2 of you, thank

you. It will be hard not to worry through the time but I guess as

long as the brace is holding @ the x-ray check-ups then things are

okay then.. we'll see how long it holds, I did think that was

strange too, a whole year? Would be nice I guess if so.. Okay then,

thanks again!!! ~Joy

> > > I was wondering how long typically, a brace lasts before

they

> > outgrow

> > > it. Evanlee is 1 and has only been in her brace for a

couple

> of

> > > months, but of course, I think it's getting too tight and

she

> > coughs

> > > alot when she is in it.

> > >

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

Yeah, looking back I think you're right, was basically insinuating

we probably wouldn't be back to them for revisit anytime soon.. I

automatically assumed once the year was up we'd be there bracing

again, if not before, but now I'm thinking that maybe he was

insinuating we'd hopefully be done with it by then without actually

saying that. Okay well I hope so, I feel so much better now

honestly, I was crying again! Maybe a little bit of pregnancy

hormones too, but that's another thing, w/another baby on the way we

are really just praying beyond belief that the correction continues

w/it's course of action b/c our plate is going to be so full as is!

Thanks again so much!! ~Joy

> > > I was wondering how long typically, a brace lasts before

they

> > outgrow

> > > it. Evanlee is 1 and has only been in her brace for a couple

> of

> > > months, but of course, I think it's getting too tight and

she

> > coughs

> > > alot when she is in it.

> > >

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

Joy,

I'll tell you our experience. Jake was 10o and 6o out of cast pre-brace. Our

doc mentioned possibly a year in the brace (if all went as planned) and for us

to follow-up with Boston Children's Hospital as they are trying to form a

" relationship " with the team there. We had the final cast cut off in Boston and

had a standing x-ray (our first standing one since starting the casting

journey). The doc there read Jake to be 12o and 17o and suggested that maybe we

weren't finished with casting. He sent us back to Erie. Erie took another

x-ray lying down and the measurements were the same -- 10o and 6o (after 2 weeks

with no support)! He couldn't believe the doc in Boston was so alarmed and

suggested we continue Jake's care there in Erie. It is a hike for us -- 9 hours

drive time straight through -- but if Jake continues to get better, we'll stay

there. Although we have given thought to finding someone (back in Boston or

maybe in Providence) locally to follow Jake.

I will say the Boston ortho said we did avoid surgery in our decision to cast

Jake early. He also said the future will be bumpy and Jake could possibly be in

and out of a brace until skeletal maturity but to " stay the course " . I, too,

believed that we might be finished with bracing within the year and was a little

disappointed to learn we still have quite a way to go.

I've heard that Mehta straighted out about 100 kids who remain straight today,

but I wonder how many of those kids were successfully weaned out of a brace and

how many were in and out of a brace for years and years. Is it possible to tell

which children will fit into which category? Who knows. The questions could

keep me up every night. I'm trying to learn to put my faith in God and take it

all one sweet day at a time.

Sincerely,

& Jake

mosunshinebaby <mosunshinebaby@...> wrote:

Hi Jen & Bert & anyone else who has experience w/bracing...

I'm kind of thrown off right now because I just spoke with my

husband & also Dr. about Solana's brace. She's @ 15o Cobb

out of cast, I won't know what she measures in her brace until she

has it on later today. But once she has it on he said we can just

f/u w/our local Ortho here @ Children's Hospital for x-rays every 2-

3 mos. to make sure it's holding her. He said that we shouldn't have

to worry about refitting her for a new brace anytime soon, probably

wouldn't have to worry about it for the next year or so! That really

shocked me because I didn't realize she'd be wearing it that long

inevitably? Or that it would get her through a whole years worth of

growth. He didn't seem to have any idea or prognosis on when she

might be able to be weaned off of it if ever, just that she's going

to be in a brace for the next year? Is this what you were told

initially too Jen? What was your guys' plan/course of action after

having his first brace fit and on? And where were you being treated

again?

I realize that many Scoli. kids from the past had to grow up in

bracing but I thought the whole idea of early treatment w/serial

casting was to be able to train the spine early enough to where it

would be strong enough to wean out of a brace eventually. Just

curious about what's going on w/other kids & bracing, because to me

it sounded like this is going to be a part of her life for a long

time & I thought a permenantly corrected state (w/no support) was

our goal.. have I been wishfully thinking that that goal would be

approaching sooner than a year plus?? The surprise is a whole new

upset to me. I actually wouldn't even mind her having to go through

another year of casting and/or bracing, or even two, I'm just

wondering what seems to be the " norm " with children who have already

gone through. I realize in actuality real goal is to avoid severe

deformity but I guess I just had my hopes up for her to be able to

live a semi-normal childhood like some of the kids here who are now

brace free.

QUESTION TO ANYONE WHO'S MOVED FROM CASTING TO BRACING: How long did

your child have a brace before you were able to wean them out? And

how many are currently still in a brace, how long has your child

been in one?

Sorry for the length here, I don't mean to sound ungreatful for

where we are @ this point in her treatment, the idea of her having

to grow up in a brace is saddening to me though & I just hope I'm

completely jumping the boat on what I got out of the conversation..

I'm sure there's simply no way to know @ this point, that's why it

I'm looking for shared experiences from anyone I haven't already. I

know Madison's story was 2 braces in 8 mos. before weaning right?

Anyone else have any input? Thank you so much in advance for it if

so, It's very much appreciated!! Sincerest gratitude, ~Joy & Sol

> I was wondering how long typically, a brace lasts before they

outgrow

> it. Evanlee is 1 and has only been in her brace for a couple of

> months, but of course, I think it's getting too tight and she

coughs

> alot when she is in it.

>

>

>

> __________________________________________________

>

[Guest guest]

Joy,

I can't really add anything different than the other mothers here. I think Jen

at this time is the best one to gain perspective from as Madison is out

of her brace. Like she said though....each child is so different and there is no

cookie cutter pattern to fit them all. It is disheartening to think about your

little one in a brace for so long, but the ultimate goal is of course to have

them corrected and stable so they need no surgery or anything like that.

I have come to deal with the fact that Lexi could very well be in a brace until

she is into her teens. I look at it that way and if it is sooner then I am

pleasantly surprised and have something to celebrate. Like our orthotist said to

me at the beginning of all this " there is no way to know when that magic window

of time appears to know that the brace can come off and no progression will

reoccur " In Lexi's case, we will begin to lessen the time in a brace in the next

6 months....very slowly and follow her back even more closely.

I think the most important thing to take into consideration is this. I know as

a mom it is tough stuff to think about your child spending all the time in a

brace BUT.....the longterm sacrifices will hopefully be worth it later. Also,

remember to keep a brave face in front of the little ones. If they pick up from

us as parents that the brace is a " bad " thing they will begin to have doubts

about it and possibly self esteem issues with it if they have to wear it into

later years. We make such a big deal about Lexi's brace and how cool it looks

that she really thinks she is awesome in it ( and she is!! ) And remember , they

do get to spend some time out of the brace and enjoy like with freedom even for

a few hours a day. I know it is tough....but you have all of us to fall back on

and we will all get through it together :-)

Tracey

Re: Re: Brace Question-- & Solana update

Joy,

I'll tell you our experience. Jake was 10o and 6o out of cast pre-brace. Our

doc mentioned possibly a year in the brace (if all went as planned) and for us

to follow-up with Boston Children's Hospital as they are trying to form a

" relationship " with the team there. We had the final cast cut off in Boston and

had a standing x-ray (our first standing one since starting the casting

journey). The doc there read Jake to be 12o and 17o and suggested that maybe we

weren't finished with casting. He sent us back to Erie. Erie took another x-ray

lying down and the measurements were the same -- 10o and 6o (after 2 weeks with

no support)! He couldn't believe the doc in Boston was so alarmed and suggested

we continue Jake's care there in Erie. It is a hike for us -- 9 hours drive time

straight through -- but if Jake continues to get better, we'll stay there.

Although we have given thought to finding someone (back in Boston or maybe in

Providence) locally to follow Jake.

I will say the Boston ortho said we did avoid surgery in our decision to cast

Jake early. He also said the future will be bumpy and Jake could possibly be in

and out of a brace until skeletal maturity but to " stay the course " . I, too,

believed that we might be finished with bracing within the year and was a little

disappointed to learn we still have quite a way to go.

I've heard that Mehta straighted out about 100 kids who remain straight today,

but I wonder how many of those kids were successfully weaned out of a brace and

how many were in and out of a brace for years and years. Is it possible to tell

which children will fit into which category? Who knows. The questions could keep

me up every night. I'm trying to learn to put my faith in God and take it all

one sweet day at a time.

Sincerely,

& Jake

mosunshinebaby <mosunshinebaby@...> wrote:

Hi Jen & Bert & anyone else who has experience w/bracing...

I'm kind of thrown off right now because I just spoke with my

husband & also Dr. about Solana's brace. She's @ 15o Cobb

out of cast, I won't know what she measures in her brace until she

has it on later today. But once she has it on he said we can just

f/u w/our local Ortho here @ Children's Hospital for x-rays every 2-

3 mos. to make sure it's holding her. He said that we shouldn't have

to worry about refitting her for a new brace anytime soon, probably

wouldn't have to worry about it for the next year or so! That really

shocked me because I didn't realize she'd be wearing it that long

inevitably? Or that it would get her through a whole years worth of

growth. He didn't seem to have any idea or prognosis on when she

might be able to be weaned off of it if ever, just that she's going

to be in a brace for the next year? Is this what you were told

initially too Jen? What was your guys' plan/course of action after

having his first brace fit and on? And where were you being treated

again?

I realize that many Scoli. kids from the past had to grow up in

bracing but I thought the whole idea of early treatment w/serial

casting was to be able to train the spine early enough to where it

would be strong enough to wean out of a brace eventually. Just

curious about what's going on w/other kids & bracing, because to me

it sounded like this is going to be a part of her life for a long

time & I thought a permenantly corrected state (w/no support) was

our goal.. have I been wishfully thinking that that goal would be

approaching sooner than a year plus?? The surprise is a whole new

upset to me. I actually wouldn't even mind her having to go through

another year of casting and/or bracing, or even two, I'm just

wondering what seems to be the " norm " with children who have already

gone through. I realize in actuality real goal is to avoid severe

deformity but I guess I just had my hopes up for her to be able to

live a semi-normal childhood like some of the kids here who are now

brace free.

QUESTION TO ANYONE WHO'S MOVED FROM CASTING TO BRACING: How long did

your child have a brace before you were able to wean them out? And

how many are currently still in a brace, how long has your child

been in one?

Sorry for the length here, I don't mean to sound ungreatful for

where we are @ this point in her treatment, the idea of her having

to grow up in a brace is saddening to me though & I just hope I'm

completely jumping the boat on what I got out of the conversation..

I'm sure there's simply no way to know @ this point, that's why it

I'm looking for shared experiences from anyone I haven't already. I

know Madison's story was 2 braces in 8 mos. before weaning right?

Anyone else have any input? Thank you so much in advance for it if

so, It's very much appreciated!! Sincerest gratitude, ~Joy & Sol

> I was wondering how long typically, a brace lasts before they

outgrow

> it. Evanlee is 1 and has only been in her brace for a couple of

> months, but of course, I think it's getting too tight and she

coughs

> alot when she is in it.

>

>

>

> __________________________________________________

>

[Guest guest]

To Every One,

Wanted to say about the brace thing was that when the kiddos get to that

dreaded period that they call puberty. Lol. Most of the time the kids go

through their last major growth spurt and that's another period where you

really need to watch their spines. That's when the spine can move again.

Not sure what Madison's doctor said about the future if anything. But

wanted to mention this mainly because this is where the brace will come into

play if they need it. Just thought I'd throw this out there.

Betty

[Guest guest]

Tracey,

Especially since her brace is a pink camo. Never thought they would make a

brace like that. Like I said in that other post about Lexi's brace, I was

totally jealous. Lol

Betty

[Guest guest]

Yeah, thanks for your input Tracey! We are very positive with her

about the whole thing, her cast the whole time, yey you get to go

back to the froggy hospital to get a new one!! And even just talking

to her tonight asked if she got her new brace & said ooooh neato! I

can't wait to see it!! Keeping a brave face & positive attitude

definitely comes natural to me as well as my husband & other little

girl so she's in the best family if she did happen to end up in a

brace for years on & off. I was just a little shocked today because

I was under the impression that it was in fact a pretty cut & dry

process if you get it under control early enough, as many casts to

get it as low as possible & then bracing until the Dr. feels it's

strong enough to wean out. From Mehta's studies, the 100 kids, to me

it seemed there was a mean time of actual correction consisting of

casting & bracing treatment, ending in no support whatsoever, so

again, just a little surprised & wondering what's going on thus far

w/other kiddos undergoing bracing. I was prepared to montior closely

after bracing of course.. just thought the brace would be a short

lived end to her treatment, who knows, maybe it will be! And of

course not the end of the world if not, it will definitely be nice

to have the hour free time or whatever while she's in it, so thanks

for putting a positive spin on it, I do appreciate it! Just needed

this day to process potentials I guess while gaining your guys'

input. Thanks so much again! Take care ~Joy

PS-- Dr. Sander's suggested I f/u w/her ortho here @ Children's b/c

he knows him personally & seemingly has high regard for him to

handle her @ this point in her treatment, I'm anxious to do that f/u

in a few mos. to see what she measures standing. Also, one of the

Dr.'s working there w/him (Kisham I believe) is moving here to Cali.

& can do her f/u's too, Dr. Sander's is sending her info. to both of

them for us to choose either one. Who knows, if it comes to molding

another brace I may end up wanting to go back to Dr. Sander's anyway

even though he didn't sound like he thought it was neccessary..

We'll see!

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple

of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Thanks for that Betty!

I'm actually amazed to have found out how many people I actually

know who have scoliosis now as adults, atleast 5 close friends &

even more friends or aquantainces of friends! Most of theirs are

over 10 degreee even, not such an uncommon thing it seems as adults

having not caught it in adolesence or rather just not braced it if

so. But yes, definitely something we will be aware & prepare for!

Thanks again, ~Joy

>

> To Every One,

>

>

>

> Wanted to say about the brace thing was that when the kiddos get

to that

> dreaded period that they call puberty. Lol. Most of the time the

kids go

> through their last major growth spurt and that's another period

where you

> really need to watch their spines. That's when the spine can move

again.

> Not sure what Madison's doctor said about the future if anything.

But

> wanted to mention this mainly because this is where the brace will

come into

> play if they need it. Just thought I'd throw this out there.

>

>

>

> Betty

>

>

>

>

[Guest guest]

Thanks for that Betty!

I'm actually amazed to have found out how many people I actually

know who have scoliosis now as adults, atleast 5 close friends &

even more friends or aquantainces of friends! Most of theirs are

over 10 degreee even, not such an uncommon thing it seems as adults

having not caught it in adolesence or rather just not braced it if

so. But yes, definitely something we will be aware & prepare for!

Thanks again, ~Joy

>

> To Every One,

>

>

>

> Wanted to say about the brace thing was that when the kiddos get

to that

> dreaded period that they call puberty. Lol. Most of the time the

kids go

> through their last major growth spurt and that's another period

where you

> really need to watch their spines. That's when the spine can move

again.

> Not sure what Madison's doctor said about the future if anything.

But

> wanted to mention this mainly because this is where the brace will

come into

> play if they need it. Just thought I'd throw this out there.

>

>

>

> Betty

>

>

>

>

[Guest guest]

I don't blame you Joy, it never hurts to be safe- if you want to go back to Dr.

. I " m glad in a way that this topic came up, b/c we've been wondering in

regards to the bracing as well.

Good luck with Sol's brace-keep us posted.

and Evan

mosunshinebaby <mosunshinebaby@...> wrote:

Yeah, thanks for your input Tracey! We are very positive with her

about the whole thing, her cast the whole time, yey you get to go

back to the froggy hospital to get a new one!! And even just talking

to her tonight asked if she got her new brace & said ooooh neato! I

can't wait to see it!! Keeping a brave face & positive attitude

definitely comes natural to me as well as my husband & other little

girl so she's in the best family if she did happen to end up in a

brace for years on & off. I was just a little shocked today because

I was under the impression that it was in fact a pretty cut & dry

process if you get it under control early enough, as many casts to

get it as low as possible & then bracing until the Dr. feels it's

strong enough to wean out. From Mehta's studies, the 100 kids, to me

it seemed there was a mean time of actual correction consisting of

casting & bracing treatment, ending in no support whatsoever, so

again, just a little surprised & wondering what's going on thus far

w/other kiddos undergoing bracing. I was prepared to montior closely

after bracing of course.. just thought the brace would be a short

lived end to her treatment, who knows, maybe it will be! And of

course not the end of the world if not, it will definitely be nice

to have the hour free time or whatever while she's in it, so thanks

for putting a positive spin on it, I do appreciate it! Just needed

this day to process potentials I guess while gaining your guys'

input. Thanks so much again! Take care ~Joy

PS-- Dr. Sander's suggested I f/u w/her ortho here @ Children's b/c

he knows him personally & seemingly has high regard for him to

handle her @ this point in her treatment, I'm anxious to do that f/u

in a few mos. to see what she measures standing. Also, one of the

Dr.'s working there w/him (Kisham I believe) is moving here to Cali.

& can do her f/u's too, Dr. Sander's is sending her info. to both of

them for us to choose either one. Who knows, if it comes to molding

another brace I may end up wanting to go back to Dr. Sander's anyway

even though he didn't sound like he thought it was neccessary..

We'll see!

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple

of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Well, so after fitting her last night she measured 10o in her brace,

I have to check today whether that was lying down or standing-- 10

still seems high to be in a brace already? I have been told under 10

isn't really considered a scoliosis & visually it looks good so I

guess for now we'll just see how it goes.

Thanks & everyone else, we will! ~Joy & Sol

> > > I was wondering how long typically, a brace lasts before they

> > outgrow

> > > it. Evanlee is 1 and has only been in her brace for a couple

> of

> > > months, but of course, I think it's getting too tight and she

> > coughs

> > > alot when she is in it.

> > >

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

Joy this is the 6 million dollar question . The 144 kids in Miss Mehta's study

after casting grew straight and stayed straight. I belive she used to cast them

until they were 0 and then fit for a brace after that but only for 6 months and

then they were out and finisked though still xrayed in case the curve came back.

Maybe the docs are not as confident so they are painting a worse casr scenario

for you but it won't be necessary to brace until skeletal maturity. I wll be

interested to see how Lucus goes with the spinecor brace as I think that could

be an option for Bridget, but that is because we started to late with casting

(bridge was 3 and a half), wheras you as right, the aim of early treatment

which is started before 2 and better yet befroe 12 months is to harness growth

as a corrective force so that the kids can grow straight and stay straight

without a brace.

I think this end part of the casting is what the docs and the PARENTS should

be asking MIss Mehta about at the next ETTP.

Good luck with it all.

Bert

Tracey <pthahn@...> wrote:

Joy,

I can't really add anything different than the other mothers here. I think Jen

at this time is the best one to gain perspective from as Madison is out

of her brace. Like she said though....each child is so different and there is no

cookie cutter pattern to fit them all. It is disheartening to think about your

little one in a brace for so long, but the ultimate goal is of course to have

them corrected and stable so they need no surgery or anything like that.

I have come to deal with the fact that Lexi could very well be in a brace until

she is into her teens. I look at it that way and if it is sooner then I am

pleasantly surprised and have something to celebrate. Like our orthotist said to

me at the beginning of all this " there is no way to know when that magic window

of time appears to know that the brace can come off and no progression will

reoccur " In Lexi's case, we will begin to lessen the time in a brace in the next

6 months....very slowly and follow her back even more closely.

I think the most important thing to take into consideration is this. I know as a

mom it is tough stuff to think about your child spending all the time in a brace

BUT.....the longterm sacrifices will hopefully be worth it later. Also, remember

to keep a brave face in front of the little ones. If they pick up from us as

parents that the brace is a " bad " thing they will begin to have doubts about it

and possibly self esteem issues with it if they have to wear it into later

years. We make such a big deal about Lexi's brace and how cool it looks that she

really thinks she is awesome in it ( and she is!! ) And remember , they do get

to spend some time out of the brace and enjoy like with freedom even for a few

hours a day. I know it is tough....but you have all of us to fall back on and we

will all get through it together :-)

Tracey

Re: Re: Brace Question-- & Solana update

Joy,

I'll tell you our experience. Jake was 10o and 6o out of cast pre-brace. Our doc

mentioned possibly a year in the brace (if all went as planned) and for us to

follow-up with Boston Children's Hospital as they are trying to form a

" relationship " with the team there. We had the final cast cut off in Boston and

had a standing x-ray (our first standing one since starting the casting

journey). The doc there read Jake to be 12o and 17o and suggested that maybe we

weren't finished with casting. He sent us back to Erie. Erie took another x-ray

lying down and the measurements were the same -- 10o and 6o (after 2 weeks with

no support)! He couldn't believe the doc in Boston was so alarmed and suggested

we continue Jake's care there in Erie. It is a hike for us -- 9 hours drive time

straight through -- but if Jake continues to get better, we'll stay there.

Although we have given thought to finding someone (back in Boston or maybe in

Providence) locally to follow Jake.

I will say the Boston ortho said we did avoid surgery in our decision to cast

Jake early. He also said the future will be bumpy and Jake could possibly be in

and out of a brace until skeletal maturity but to " stay the course " . I, too,

believed that we might be finished with bracing within the year and was a little

disappointed to learn we still have quite a way to go.

I've heard that Mehta straighted out about 100 kids who remain straight today,

but I wonder how many of those kids were successfully weaned out of a brace and

how many were in and out of a brace for years and years. Is it possible to tell

which children will fit into which category? Who knows. The questions could keep

me up every night. I'm trying to learn to put my faith in God and take it all

one sweet day at a time.

Sincerely,

& Jake

mosunshinebaby <mosunshinebaby@...> wrote:

Hi Jen & Bert & anyone else who has experience w/bracing...

I'm kind of thrown off right now because I just spoke with my

husband & also Dr. about Solana's brace. She's @ 15o Cobb

out of cast, I won't know what she measures in her brace until she

has it on later today. But once she has it on he said we can just

f/u w/our local Ortho here @ Children's Hospital for x-rays every 2-

3 mos. to make sure it's holding her. He said that we shouldn't have

to worry about refitting her for a new brace anytime soon, probably

wouldn't have to worry about it for the next year or so! That really

shocked me because I didn't realize she'd be wearing it that long

inevitably? Or that it would get her through a whole years worth of

growth. He didn't seem to have any idea or prognosis on when she

might be able to be weaned off of it if ever, just that she's going

to be in a brace for the next year? Is this what you were told

initially too Jen? What was your guys' plan/course of action after

having his first brace fit and on? And where were you being treated

again?

I realize that many Scoli. kids from the past had to grow up in

bracing but I thought the whole idea of early treatment w/serial

casting was to be able to train the spine early enough to where it

would be strong enough to wean out of a brace eventually. Just

curious about what's going on w/other kids & bracing, because to me

it sounded like this is going to be a part of her life for a long

time & I thought a permenantly corrected state (w/no support) was

our goal.. have I been wishfully thinking that that goal would be

approaching sooner than a year plus?? The surprise is a whole new

upset to me. I actually wouldn't even mind her having to go through

another year of casting and/or bracing, or even two, I'm just

wondering what seems to be the " norm " with children who have already

gone through. I realize in actuality real goal is to avoid severe

deformity but I guess I just had my hopes up for her to be able to

live a semi-normal childhood like some of the kids here who are now

brace free.

QUESTION TO ANYONE WHO'S MOVED FROM CASTING TO BRACING: How long did

your child have a brace before you were able to wean them out? And

how many are currently still in a brace, how long has your child

been in one?

Sorry for the length here, I don't mean to sound ungreatful for

where we are @ this point in her treatment, the idea of her having

to grow up in a brace is saddening to me though & I just hope I'm

completely jumping the boat on what I got out of the conversation..

I'm sure there's simply no way to know @ this point, that's why it

I'm looking for shared experiences from anyone I haven't already. I

know Madison's story was 2 braces in 8 mos. before weaning right?

Anyone else have any input? Thank you so much in advance for it if

so, It's very much appreciated!! Sincerest gratitude, ~Joy & Sol

> I was wondering how long typically, a brace lasts before they

outgrow

> it. Evanlee is 1 and has only been in her brace for a couple of

> months, but of course, I think it's getting too tight and she

coughs

> alot when she is in it.

>

>

>

> __________________________________________________

>

[Guest guest]

bert,

fabulous response and you are absolutely right that this needs to be

addressed by miss mehta to the current orthos doing casting and

parents of kids at the transition from cast to brace. of course no

one can predict the future, but at least miss mehta has the most

experience.

as for her casting them to 0 degrees. i keep hoping that lucas falls

into the category of the child she used as an example in figure 2 in

which she only casted him to 20o. i'll post the figure legend here,

but can't post the pictures of the boy/man since we can't do

attachments to the group:

Photographs and radiographs of a boy in group 1, from referral for

treatment to follow-up at skeletal maturity. Figure 2a – At

treatment, aged 3 years

7 months, with a left thoracic scoliosis of 50°, RVAD at T10 of 24°

and in phase 2. There is a large rib hump. Scoliosis was detected at

15 months by his

mother. Figure 2b – Curve corrected to 20°, RVAD 1° and in phase 1 by

the age of 5 years 6 months. An underarm removable brace was prescribed.

Three months later the curve had regressed to 13° and the brace was

discarded. Figure 2c – At the age of 6 years 3 months, there is

gradual spontaneous

resolution of the residual curve and rib hump. Figure 2d – At the age

of 8 years 1 month, there is further spontaneous straightening of the

spine with

restoration of the normal body shape. Figure 2e – A fully resolved

spine. Figure 2f – At the age of 17 years 6 months and Risser stage

4. He is now aged

24 years.

as for the spinecor, is this anywhere near you:

AUSTRALIA

DISTRIBUTOR

Zortex Orthotics

Suite 2, 96 Chandos Street,

St. Leonards, NSW 2065

Contact: Mr. Stuart Kerr

Phone: (02) 9438 5003

Fax: (02) 9436 3535

Email: Skerr@...

Also at:

The New Children's Hospital Medical Centre,

Suite 1, Hainsworth Street,

Westmead, NSW 2145

Contact: Mr Stuart Kerr

=)

deshea

On Sep 6, 2006, at 8:26 PM, bert lehane wrote:

> Joy this is the 6 million dollar question . The 144 kids in Miss

> Mehta's study after casting grew straight and stayed straight. I

> belive she used to cast them until they were 0 and then fit for a

> brace after that but only for 6 months and then they were out and

> finisked though still xrayed in case the curve came back.

>

> Maybe the docs are not as confident so they are painting a worse

> casr scenario for you but it won't be necessary to brace until

> skeletal maturity. I wll be interested to see how Lucus goes with

> the spinecor brace as I think that could be an option for Bridget,

> but that is because we started to late with casting (bridge was 3

> and a half), wheras you as right, the aim of early treatment which

> is started before 2 and better yet befroe 12 months is to harness

> growth as a corrective force so that the kids can grow straight and

> stay straight without a brace.

>

> I think this end part of the casting is what the docs and the

> PARENTS should be asking MIss Mehta about at the next ETTP.

>

> Good luck with it all.

>

> Bert

>

> Tracey <pthahn@...> wrote:

> Joy,

>

> I can't really add anything different than the other mothers here.

> I think Jen at this time is the best one to gain

> perspective from as Madison is out of her brace. Like she said

> though....each child is so different and there is no cookie cutter

> pattern to fit them all. It is disheartening to think about your

> little one in a brace for so long, but the ultimate goal is of

> course to have them corrected and stable so they need no surgery or

> anything like that.

> I have come to deal with the fact that Lexi could very well be in a

> brace until she is into her teens. I look at it that way and if it

> is sooner then I am pleasantly surprised and have something to

> celebrate. Like our orthotist said to me at the beginning of all

> this " there is no way to know when that magic window of time

> appears to know that the brace can come off and no progression will

> reoccur " In Lexi's case, we will begin to lessen the time in a

> brace in the next 6 months....very slowly and follow her back even

> more closely.

> I think the most important thing to take into consideration is

> this. I know as a mom it is tough stuff to think about your child

> spending all the time in a brace BUT.....the longterm sacrifices

> will hopefully be worth it later. Also, remember to keep a brave

> face in front of the little ones. If they pick up from us as

> parents that the brace is a " bad " thing they will begin to have

> doubts about it and possibly self esteem issues with it if they

> have to wear it into later years. We make such a big deal about

> Lexi's brace and how cool it looks that she really thinks she is

> awesome in it ( and she is!! ) And remember , they do get to spend

> some time out of the brace and enjoy like with freedom even for a

> few hours a day. I know it is tough....but you have all of us to

> fall back on and we will all get through it together :-)

>

> Tracey

> Re: Re: Brace Question-- & Solana update

>

> Joy,

>

> I'll tell you our experience. Jake was 10o and 6o out of cast pre-

> brace. Our doc mentioned possibly a year in the brace (if all went

> as planned) and for us to follow-up with Boston Children's Hospital

> as they are trying to form a " relationship " with the team there. We

> had the final cast cut off in Boston and had a standing x-ray (our

> first standing one since starting the casting journey). The doc

> there read Jake to be 12o and 17o and suggested that maybe we

> weren't finished with casting. He sent us back to Erie. Erie took

> another x-ray lying down and the measurements were the same -- 10o

> and 6o (after 2 weeks with no support)! He couldn't believe the doc

> in Boston was so alarmed and suggested we continue Jake's care

> there in Erie. It is a hike for us -- 9 hours drive time straight

> through -- but if Jake continues to get better, we'll stay there.

> Although we have given thought to finding someone (back in Boston

> or maybe in Providence) locally to follow Jake.

>

> I will say the Boston ortho said we did avoid surgery in our

> decision to cast Jake early. He also said the future will be bumpy

> and Jake could possibly be in and out of a brace until skeletal

> maturity but to " stay the course " . I, too, believed that we might

> be finished with bracing within the year and was a little

> disappointed to learn we still have quite a way to go.

>

> I've heard that Mehta straighted out about 100 kids who remain

> straight today, but I wonder how many of those kids were

> successfully weaned out of a brace and how many were in and out of

> a brace for years and years. Is it possible to tell which children

> will fit into which category? Who knows. The questions could keep

> me up every night. I'm trying to learn to put my faith in God and

> take it all one sweet day at a time.

>

> Sincerely,

> & Jake

> mosunshinebaby <mosunshinebaby@...> wrote:

> Hi Jen & Bert & anyone else who has experience w/bracing...

>

> I'm kind of thrown off right now because I just spoke with my

> husband & also Dr. about Solana's brace. She's @ 15o Cobb

> out of cast, I won't know what she measures in her brace until she

> has it on later today. But once she has it on he said we can just

> f/u w/our local Ortho here @ Children's Hospital for x-rays every 2-

> 3 mos. to make sure it's holding her. He said that we shouldn't have

> to worry about refitting her for a new brace anytime soon, probably

> wouldn't have to worry about it for the next year or so! That really

> shocked me because I didn't realize she'd be wearing it that long

> inevitably? Or that it would get her through a whole years worth of

> growth. He didn't seem to have any idea or prognosis on when she

> might be able to be weaned off of it if ever, just that she's going

> to be in a brace for the next year? Is this what you were told

> initially too Jen? What was your guys' plan/course of action after

> having his first brace fit and on? And where were you being treated

> again?

>

> I realize that many Scoli. kids from the past had to grow up in

> bracing but I thought the whole idea of early treatment w/serial

> casting was to be able to train the spine early enough to where it

> would be strong enough to wean out of a brace eventually. Just

> curious about what's going on w/other kids & bracing, because to me

> it sounded like this is going to be a part of her life for a long

> time & I thought a permenantly corrected state (w/no support) was

> our goal.. have I been wishfully thinking that that goal would be

> approaching sooner than a year plus?? The surprise is a whole new

> upset to me. I actually wouldn't even mind her having to go through

> another year of casting and/or bracing, or even two, I'm just

> wondering what seems to be the " norm " with children who have already

> gone through. I realize in actuality real goal is to avoid severe

> deformity but I guess I just had my hopes up for her to be able to

> live a semi-normal childhood like some of the kids here who are now

> brace free.

>

> QUESTION TO ANYONE WHO'S MOVED FROM CASTING TO BRACING: How long did

> your child have a brace before you were able to wean them out? And

> how many are currently still in a brace, how long has your child

> been in one?

>

> Sorry for the length here, I don't mean to sound ungreatful for

> where we are @ this point in her treatment, the idea of her having

> to grow up in a brace is saddening to me though & I just hope I'm

> completely jumping the boat on what I got out of the conversation..

> I'm sure there's simply no way to know @ this point, that's why it

> I'm looking for shared experiences from anyone I haven't already. I

> know Madison's story was 2 braces in 8 mos. before weaning right?

> Anyone else have any input? Thank you so much in advance for it if

> so, It's very much appreciated!! Sincerest gratitude, ~Joy & Sol

>

>

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Thanks for your input Bert!

> > I was wondering how long typically, a brace lasts before they

> outgrow

> > it. Evanlee is 1 and has only been in her brace for a couple of

> > months, but of course, I think it's getting too tight and she

> coughs

> > alot when she is in it.

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Actually found today that the degree was 7 in brace & not 10, but

that was also laying down. So we'll see what the measure is in a few

mos. standing.. Thanks again for all of your input!

> > > > I was wondering how long typically, a brace lasts before

they

> > > outgrow

> > > > it. Evanlee is 1 and has only been in her brace for a couple

> > of

> > > > months, but of course, I think it's getting too tight and

she

> > > coughs

> > > > alot when she is in it.

> > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >