lucas update

[Guest guest]

hi everyone,

lucas and i flew out to erie in the late morning on monday

from boston to philly and then philly to erie -- no direct

flights. things were delayed a bit, but we finally made it in

at 6p. lucas had a wonderful bath (i think he was in the tub

for over an hour). very pruney! had a wonderful time in the

game room and then stayed up late and watched videos in parent

housing. he outlasted me! his back looked very, very good to

my eye and his skin was almost perfect. considering his pee

accidents in the nighttime even with a pull-up, i was worried

about skin breakdown, but no problems. yeah!

tuesday morning, we went into pre-op around 9a. dr. sanders

liked the looks of his back. he asked if i wouldn't mind

getting the shirt, and i acquiesced to get a thinner cast and

try it out. also, i asked about dr. emans coming to erie, but

he said that it was going to be dr. hresko (sp?) from boston

children's to see the casting technique because they are

interested in doing it in boston . . . i didn't ask any

additional questions although i always have a lot. i forget

them while in pre-op. lucas went in no problems. one of the

surgical nurses carried him in and he inhaled the bubble gum

flavored anesthesia like a champ, they said.

about 45 min later, dr. sanders came out with x-rays (i was

shocked! since i talked about how he wasn't going to do

x-rays this time). out of cast, he is 17o (down from his last

out of cast in june at 25o). in cast, he is 8o. this is

great news to us since he had been holding steady at 13o for

almost all of his previous casts. then, dr. sanders said that

he would like to put lucas in a " bivalve " cast in june -- i'm

assuming like the one lexi has or had -- tracey, is lexi in a

brace now??? how did you like this removable cast? i think

you might have been the only person to have this.

i asked repeatedly if it is really time to do this. he said

repeatedly that he thought it was. i told him that we didn't

want to do something that would just be a " break " to be out of

cast, but to do it because it was time. he thought

strengthening back muscles with swimming and pt would be

beneficial and hopefully help keep/correct the curve further.

then, i asked if a brace would be better than a removable

cast. right now, he thinks that a cast is better moulded to

the body and would keep him in better alignment while he is in

it, but he can't be sure until june and getting this removable

cast.

that is the news regarding #s and next steps. i'm hopeful,

but nervous. in june, lucas will have been in casts for 2

years. it will be nice to have the summer to get his muscles

strong. plus, i can schedule the echocardiogram to check his

aorta related to his potential connective tissue

disorder/ehlers-danlos kyphoscoliosis type -- i'm still not so

sure about this though. i have to fax the report over to erie

to be included in his file there.

i'm sure i'm forgetting stuff, but this is already a novel,

and i have to get back to work! thanks for all the well

wishes. they seem to have helped!

deshea

[Guest guest]

It sounds like he got some awesome correction Deshea! Yay!!! I wonder why, if

they got better correction with this cast, they are thinking of going to the

bivalve cast? Seems like they'd want to keep him in a regular cast a bit longer

if they can still get more correction??? Well, I am sure he knows what he's

doing, and it will be nice to have something you can remove for bathing.

Noelle (12-2-01)

Ian (8-15-04)

lucas update

hi everyone,

lucas and i flew out to erie in the late morning on monday

from boston to philly and then philly to erie -- no direct

flights. things were delayed a bit, but we finally made it in

at 6p. lucas had a wonderful bath (i think he was in the tub

for over an hour). very pruney! had a wonderful time in the

game room and then stayed up late and watched videos in parent

housing. he outlasted me! his back looked very, very good to

my eye and his skin was almost perfect. considering his pee

accidents in the nighttime even with a pull-up, i was worried

about skin breakdown, but no problems. yeah!

tuesday morning, we went into pre-op around 9a. dr. sanders

liked the looks of his back. he asked if i wouldn't mind

getting the shirt, and i acquiesced to get a thinner cast and

try it out. also, i asked about dr. emans coming to erie, but

he said that it was going to be dr. hresko (sp?) from boston

children's to see the casting technique because they are

interested in doing it in boston . . . i didn't ask any

additional questions although i always have a lot. i forget

them while in pre-op. lucas went in no problems. one of the

surgical nurses carried him in and he inhaled the bubble gum

flavored anesthesia like a champ, they said.

about 45 min later, dr. sanders came out with x-rays (i was

shocked! since i talked about how he wasn't going to do

x-rays this time). out of cast, he is 17o (down from his last

out of cast in june at 25o). in cast, he is 8o. this is

great news to us since he had been holding steady at 13o for

almost all of his previous casts. then, dr. sanders said that

he would like to put lucas in a " bivalve " cast in june -- i'm

assuming like the one lexi has or had -- tracey, is lexi in a

brace now??? how did you like this removable cast? i think

you might have been the only person to have this.

i asked repeatedly if it is really time to do this. he said

repeatedly that he thought it was. i told him that we didn't

want to do something that would just be a " break " to be out of

cast, but to do it because it was time. he thought

strengthening back muscles with swimming and pt would be

beneficial and hopefully help keep/correct the curve further.

then, i asked if a brace would be better than a removable

cast. right now, he thinks that a cast is better moulded to

the body and would keep him in better alignment while he is in

it, but he can't be sure until june and getting this removable

cast.

that is the news regarding #s and next steps. i'm hopeful,

but nervous. in june, lucas will have been in casts for 2

years. it will be nice to have the summer to get his muscles

strong. plus, i can schedule the echocardiogram to check his

aorta related to his potential connective tissue

disorder/ehlers-danlos kyphoscoliosis type -- i'm still not so

sure about this though. i have to fax the report over to erie

to be included in his file there.

i'm sure i'm forgetting stuff, but this is already a novel,

and i have to get back to work! thanks for all the well

wishes. they seem to have helped!

deshea

[Guest guest]

jennifer,

i think that it is probably related to the fact that he has been in

casts for 2 yrs come june. that is a long time, and perhaps at this

point dr. sanders thinks he can get the same correction in a bivalve

cast with the added benefit of swimming and pt. of course, i am not

dr. sanders so i'm not sure what he is thinking exactly. also, lucas

will be 4 1/2 yrs old, and there is less growth at this age. in june,

we'll see if this whole scenario will really happen. i do not want to

sacrifice all of the progress we've made so far. maybe we'll have a

longer discussion with dr. sanders about what he is thinking come june.

deshea

>

> It sounds like he got some awesome correction Deshea! Yay!!! I

wonder why, if they got better correction with this cast, they are

thinking of going to the bivalve cast? Seems like they'd want to keep

him in a regular cast a bit longer if they can still get more

correction??? Well, I am sure he knows what he's doing, and it will

be nice to have something you can remove for bathing.

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> lucas update

>

>

> hi everyone,

>

> lucas and i flew out to erie in the late morning on monday

> from boston to philly and then philly to erie -- no direct

> flights. things were delayed a bit, but we finally made it in

> at 6p. lucas had a wonderful bath (i think he was in the tub

> for over an hour). very pruney! had a wonderful time in the

> game room and then stayed up late and watched videos in parent

> housing. he outlasted me! his back looked very, very good to

> my eye and his skin was almost perfect. considering his pee

> accidents in the nighttime even with a pull-up, i was worried

> about skin breakdown, but no problems. yeah!

>

> tuesday morning, we went into pre-op around 9a. dr. sanders

> liked the looks of his back. he asked if i wouldn't mind

> getting the shirt, and i acquiesced to get a thinner cast and

> try it out. also, i asked about dr. emans coming to erie, but

> he said that it was going to be dr. hresko (sp?) from boston

> children's to see the casting technique because they are

> interested in doing it in boston . . . i didn't ask any

> additional questions although i always have a lot. i forget

> them while in pre-op. lucas went in no problems. one of the

> surgical nurses carried him in and he inhaled the bubble gum

> flavored anesthesia like a champ, they said.

>

> about 45 min later, dr. sanders came out with x-rays (i was

> shocked! since i talked about how he wasn't going to do

> x-rays this time). out of cast, he is 17o (down from his last

> out of cast in june at 25o). in cast, he is 8o. this is

> great news to us since he had been holding steady at 13o for

> almost all of his previous casts. then, dr. sanders said that

> he would like to put lucas in a " bivalve " cast in june -- i'm

> assuming like the one lexi has or had -- tracey, is lexi in a

> brace now??? how did you like this removable cast? i think

> you might have been the only person to have this.

>

> i asked repeatedly if it is really time to do this. he said

> repeatedly that he thought it was. i told him that we didn't

> want to do something that would just be a " break " to be out of

> cast, but to do it because it was time. he thought

> strengthening back muscles with swimming and pt would be

> beneficial and hopefully help keep/correct the curve further.

> then, i asked if a brace would be better than a removable

> cast. right now, he thinks that a cast is better moulded to

> the body and would keep him in better alignment while he is in

> it, but he can't be sure until june and getting this removable

> cast.

>

> that is the news regarding #s and next steps. i'm hopeful,

> but nervous. in june, lucas will have been in casts for 2

> years. it will be nice to have the summer to get his muscles

> strong. plus, i can schedule the echocardiogram to check his

> aorta related to his potential connective tissue

> disorder/ehlers-danlos kyphoscoliosis type -- i'm still not so

> sure about this though. i have to fax the report over to erie

> to be included in his file there.

>

> i'm sure i'm forgetting stuff, but this is already a novel,

> and i have to get back to work! thanks for all the well

> wishes. they seem to have helped!

>

> deshea

>

>

>

[Guest guest]

Deshea,

Sounds like things are working out well for Lucas, I'm glad. I bet the Spinecor

is easier for him movement wise than a rigid brace. How's he doing not being

able to go to school, I bet he's itching to go. Well, take care and I'm sure

you'll agree, the weather is really pleasant here, enjoy.

Jerry and Marissa

lucas update

hi everyone,

we've been away most of july and august, but we're back now that preschool is

starting up. since lucas doesn't turn 5 until november, he can't start

kindergarten until next year. :-(

i've been reading everyone's posts but haven't had a lot of time to reply, but

i hope to remedy that.

i thought i would post an update about lucas since we've made some changes

recently. lucas got his last cast off at the end of june in erie. he had a

removable brace made that looked a lot like the cast. dr. sanders said that our

next appt. in sept would be a clinic appt = no more casts for lucas because 1.

his curves are pretty low (but not 0o) 2. his age 4 yrs 6 mos or so. casts are

meant for correcting when kids are younger so that their growth helps with the

process. after sept, dr. sanders wanted us to return to boston children's for

continued follow-up with bracing.

as a brief history, lucas was diagnosed at 18 mos with a 68o/45o curve, he had

a tight/fatty filum that was detethered at 22 mos. he wore a tlso brace during

the day and a charleston/bending brace at night for 1 yr at boston children's

hospital. curves decreased initially, but then started to creep up again. at 2

1/2 yrs old, we took him to erie for casting. he was casted for 2 yrs. in june,

lucas was 13o laying down out of cast and 20o standing in brace.

my husband and i have always been curious about the spinecor brace since it is

not a rigid brace. after 3 yrs in either a rigid brace or casts, we have been

concerned about lucas' trunk muscles. we did start him on aquatic physical

therapy this summer which has helped a great deal. of course, this brace is

being offered to adolescents, but we were curious if lucas could be fitted. dr.

sanders and jonathan the orthotist do prescribe the spinecor, but they've only

been able to fit children who are 7 or 8 and older. therefore, we made a trip up

to montreal to visit drs. rivard and coillard who are the inventors of the

brace. lucas is the smallest child that they have ever tried to fit so it's a

bit of an experiment. he was put in the brace and then we returned for a 1 month

follow up last week. we decided to continue with this brace for now -- we always

have the option of returning to a rigid brace. his next appt in montreal is in

jan (gasp! 5 months!) we will be keepi!

ng an eye on his back and if anything looks like it's changing, then get an

x-ray sooner. currently, he is 18o/14o in the brace standing.

i would like to say that we are extremely grateful to dr. sanders and all the

people at erie for their help in getting us to this point. casting was truly a

god send, and we made it through lucas' early growth spurt and have a low curve

as a result. unheard of considering his initial curves. it's very hard to think

that we won't be going back to erie, but we've made it a point to make sure that

we keep dr. sanders in the loop by sending all of our newest x-rays and photos.

i do have a personal website if anyone is interested in seeing photos and

x-rays. i would prefer to mail off-group since it is password protected. when i

get a chance, perhaps i will post some on the photos section of the group.

thanks for letting me post a book!

deshea

[Guest guest]

Deshea,

Glad to hear the good news! So happy the spinecor is working out for Lucas.

I will keep him in my prayers (as I do the rest of the kiddos here)!

Thinking positive thoughts,

& Jake

" Deshea L. " <deshea@...> wrote:

hi everyone,

we've been away most of july and august, but we're back now that preschool is

starting up. since lucas doesn't turn 5 until november, he can't start

kindergarten until next year. :-(

i've been reading everyone's posts but haven't had a lot of time to reply, but i

hope to remedy that.

i thought i would post an update about lucas since we've made some changes

recently. lucas got his last cast off at the end of june in erie. he had a

removable brace made that looked a lot like the cast. dr. sanders said that our

next appt. in sept would be a clinic appt = no more casts for lucas because 1.

his curves are pretty low (but not 0o) 2. his age 4 yrs 6 mos or so. casts are

meant for correcting when kids are younger so that their growth helps with the

process. after sept, dr. sanders wanted us to return to boston children's for

continued follow-up with bracing.

as a brief history, lucas was diagnosed at 18 mos with a 68o/45o curve, he had a

tight/fatty filum that was detethered at 22 mos. he wore a tlso brace during the

day and a charleston/bending brace at night for 1 yr at boston children's

hospital. curves decreased initially, but then started to creep up again. at 2

1/2 yrs old, we took him to erie for casting. he was casted for 2 yrs. in june,

lucas was 13o laying down out of cast and 20o standing in brace.

my husband and i have always been curious about the spinecor brace since it is

not a rigid brace. after 3 yrs in either a rigid brace or casts, we have been

concerned about lucas' trunk muscles. we did start him on aquatic physical

therapy this summer which has helped a great deal. of course, this brace is

being offered to adolescents, but we were curious if lucas could be fitted. dr.

sanders and jonathan the orthotist do prescribe the spinecor, but they've only

been able to fit children who are 7 or 8 and older. therefore, we made a trip up

to montreal to visit drs. rivard and coillard who are the inventors of the

brace. lucas is the smallest child that they have ever tried to fit so it's a

bit of an experiment. he was put in the brace and then we returned for a 1 month

follow up last week. we decided to continue with this brace for now -- we always

have the option of returning to a rigid brace. his next appt in montreal is in

jan (gasp! 5 months!) we will be keepi!

ng an eye on his back and if anything looks like it's changing, then get an

x-ray sooner. currently, he is 18o/14o in the brace standing.

i would like to say that we are extremely grateful to dr. sanders and all the

people at erie for their help in getting us to this point. casting was truly a

god send, and we made it through lucas' early growth spurt and have a low curve

as a result. unheard of considering his initial curves. it's very hard to think

that we won't be going back to erie, but we've made it a point to make sure that

we keep dr. sanders in the loop by sending all of our newest x-rays and photos.

i do have a personal website if anyone is interested in seeing photos and

x-rays. i would prefer to mail off-group since it is password protected. when i

get a chance, perhaps i will post some on the photos section of the group.

thanks for letting me post a book!

deshea

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

I am glad to hear how well he is doing too Deshea! That is very interesting

about the Spinecor brace. What are the benefits of that brace over the typical

TLSO? How did you decide to go with the Spinecor over the TLSO?

Noelle (12-2-01)

Ian (8-15-04)

Re: lucas update

Deshea,

Glad to hear the good news! So happy the spinecor is working out for Lucas. I

will keep him in my prayers (as I do the rest of the kiddos here)!

Thinking positive thoughts,

& Jake

" Deshea L. " <deshea@...> wrote:

hi everyone,

we've been away most of july and august, but we're back now that preschool is

starting up. since lucas doesn't turn 5 until november, he can't start

kindergarten until next year. :-(

i've been reading everyone's posts but haven't had a lot of time to reply, but

i hope to remedy that.

i thought i would post an update about lucas since we've made some changes

recently. lucas got his last cast off at the end of june in erie. he had a

removable brace made that looked a lot like the cast. dr. sanders said that our

next appt. in sept would be a clinic appt = no more casts for lucas because 1.

his curves are pretty low (but not 0o) 2. his age 4 yrs 6 mos or so. casts are

meant for correcting when kids are younger so that their growth helps with the

process. after sept, dr. sanders wanted us to return to boston children's for

continued follow-up with bracing.

as a brief history, lucas was diagnosed at 18 mos with a 68o/45o curve, he had

a tight/fatty filum that was detethered at 22 mos. he wore a tlso brace during

the day and a charleston/bending brace at night for 1 yr at boston children's

hospital. curves decreased initially, but then started to creep up again. at 2

1/2 yrs old, we took him to erie for casting. he was casted for 2 yrs. in june,

lucas was 13o laying down out of cast and 20o standing in brace.

my husband and i have always been curious about the spinecor brace since it is

not a rigid brace. after 3 yrs in either a rigid brace or casts, we have been

concerned about lucas' trunk muscles. we did start him on aquatic physical

therapy this summer which has helped a great deal. of course, this brace is

being offered to adolescents, but we were curious if lucas could be fitted. dr.

sanders and jonathan the orthotist do prescribe the spinecor, but they've only

been able to fit children who are 7 or 8 and older. therefore, we made a trip up

to montreal to visit drs. rivard and coillard who are the inventors of the

brace. lucas is the smallest child that they have ever tried to fit so it's a

bit of an experiment. he was put in the brace and then we returned for a 1 month

follow up last week. we decided to continue with this brace for now -- we always

have the option of returning to a rigid brace. his next appt in montreal is in

jan (gasp! 5 months!) we will be keepi!

ng an eye on his back and if anything looks like it's changing, then get an

x-ray sooner. currently, he is 18o/14o in the brace standing.

i would like to say that we are extremely grateful to dr. sanders and all the

people at erie for their help in getting us to this point. casting was truly a

god send, and we made it through lucas' early growth spurt and have a low curve

as a result. unheard of considering his initial curves. it's very hard to think

that we won't be going back to erie, but we've made it a point to make sure that

we keep dr. sanders in the loop by sending all of our newest x-rays and photos.

i do have a personal website if anyone is interested in seeing photos and

x-rays. i would prefer to mail off-group since it is password protected. when i

get a chance, perhaps i will post some on the photos section of the group.

thanks for letting me post a book!

deshea

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

hi jennifer,

the benefit over a rigid brace is that the spinecor is like having physical

therapy on for 20 hours out of the day (lucas is supposed to get 2 hrs out in

the morning and 2 hrs out in the afternoon. more often it is just 2 hrs/day.)

it is supposed to teach his back how to support itself in the corrected

position. since he is working his muscles versus a tlso which causes muscles to

weaken over time, i'm hopeful that if we ever wean from a brace (crossing

fingers here), then his back will be able to support itself and not revert.

as i mentioned in my first post, we always have the option of going back to a

tlso, but for now and considering lucas' age, i wanted to try this.

i'll e-mail you the website off board so that you can take a look.

thanks for asking!

deshea

---- Original message ----

>Date: Tue, 5 Sep 2006 07:09:48 -0400

>From: " Claflin " <noellesmommy@...>

>Subject: Re: lucas update

><infantile scoliosis treatment >

>

> I am glad to hear how well he is doing too Deshea!

> That is very interesting about the Spinecor brace.

> What are the benefits of that brace over the typical

> TLSO? How did you decide to go with the Spinecor

> over the TLSO?

>

>

> Noelle (12-2-01)

> Ian (8-15-04)

> Re: lucas update

>

> Deshea,

>

> Glad to hear the good news! So happy the spinecor is

> working out for Lucas. I will keep him in my prayers

> (as I do the rest of the kiddos here)!

>

> Thinking positive thoughts,

> & Jake

>

> " Deshea L. " <deshea@...> wrote:

> hi everyone,

>

> we've been away most of july and august, but we're

> back now that preschool is starting up. since lucas

> doesn't turn 5 until november, he can't start

> kindergarten until next year. :-(

>

> i've been reading everyone's posts but haven't had a

> lot of time to reply, but i hope to remedy that.

>

> i thought i would post an update about lucas since

> we've made some changes recently. lucas got his last

> cast off at the end of june in erie. he had a

> removable brace made that looked a lot like the

> cast. dr. sanders said that our next appt. in sept

> would be a clinic appt = no more casts for lucas

> because 1. his curves are pretty low (but not 0o) 2.

> his age 4 yrs 6 mos or so. casts are meant for

> correcting when kids are younger so that their

> growth helps with the process. after sept, dr.

> sanders wanted us to return to boston children's for

> continued follow-up with bracing.

>

> as a brief history, lucas was diagnosed at 18 mos

> with a 68o/45o curve, he had a tight/fatty filum

> that was detethered at 22 mos. he wore a tlso brace

> during the day and a charleston/bending brace at

> night for 1 yr at boston children's hospital. curves

> decreased initially, but then started to creep up

> again. at 2 1/2 yrs old, we took him to erie for

> casting. he was casted for 2 yrs. in june, lucas was

> 13o laying down out of cast and 20o standing in

> brace.

>

> my husband and i have always been curious about the

> spinecor brace since it is not a rigid brace. after

> 3 yrs in either a rigid brace or casts, we have been

> concerned about lucas' trunk muscles. we did start

> him on aquatic physical therapy this summer which

> has helped a great deal. of course, this brace is

> being offered to adolescents, but we were curious if

> lucas could be fitted. dr. sanders and jonathan the

> orthotist do prescribe the spinecor, but they've

> only been able to fit children who are 7 or 8 and

> older. therefore, we made a trip up to montreal to

> visit drs. rivard and coillard who are the inventors

> of the brace. lucas is the smallest child that they

> have ever tried to fit so it's a bit of an

> experiment. he was put in the brace and then we

> returned for a 1 month follow up last week. we

> decided to continue with this brace for now -- we

> always have the option of returning to a rigid

> brace. his next appt in montreal is in jan (gasp! 5

> months!) we will be keepi!

> ng an eye on his back and if anything looks like

> it's changing, then get an x-ray sooner. currently,

> he is 18o/14o in the brace standing.

>

> i would like to say that we are extremely grateful

> to dr. sanders and all the people at erie for their

> help in getting us to this point. casting was truly

> a god send, and we made it through lucas' early

> growth spurt and have a low curve as a result.

> unheard of considering his initial curves. it's very

> hard to think that we won't be going back to erie,

> but we've made it a point to make sure that we keep

> dr. sanders in the loop by sending all of our newest

> x-rays and photos.

>

> i do have a personal website if anyone is interested

> in seeing photos and x-rays. i would prefer to mail

> off-group since it is password protected. when i get

> a chance, perhaps i will post some on the photos

> section of the group.

>

> thanks for letting me post a book!

> deshea

>

> ---------------------------------

> Talk is cheap. Use Messenger to make

> PC-to-Phone calls. Great rates starting at 1¢/min.

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

i know i am not in on this topic, but i wanted to share something that we were

told by lexi's pt when we started casting. i was concerned about muscle weakness

while she was in cast and i was told that anytime a child or person for that

matter is in a standing position vital back muscles are being used to stand

upright. they are also used when the arms are moved to pick up objects or move

for anything. this was even the reply while she was in the cast and even now

while in the brace. just because a brace or cast is applied doesn't necessarily

mean the muscles aren't being worked.

Re: lucas update

>

> Deshea,

>

> Glad to hear the good news! So happy the spinecor is

> working out for Lucas. I will keep him in my prayers

> (as I do the rest of the kiddos here)!

>

> Thinking positive thoughts,

> & Jake

>

> " Deshea L. " <deshea@...> wrote:

> hi everyone,

>

> we've been away most of july and august, but we're

> back now that preschool is starting up. since lucas

> doesn't turn 5 until november, he can't start

> kindergarten until next year. :-(

>

> i've been reading everyone's posts but haven't had a

> lot of time to reply, but i hope to remedy that.

>

> i thought i would post an update about lucas since

> we've made some changes recently. lucas got his last

> cast off at the end of june in erie. he had a

> removable brace made that looked a lot like the

> cast. dr. sanders said that our next appt. in sept

> would be a clinic appt = no more casts for lucas

> because 1. his curves are pretty low (but not 0o) 2.

> his age 4 yrs 6 mos or so. casts are meant for

> correcting when kids are younger so that their

> growth helps with the process. after sept, dr.

> sanders wanted us to return to boston children's for

> continued follow-up with bracing.

>

> as a brief history, lucas was diagnosed at 18 mos

> with a 68o/45o curve, he had a tight/fatty filum

> that was detethered at 22 mos. he wore a tlso brace

> during the day and a charleston/bending brace at

> night for 1 yr at boston children's hospital. curves

> decreased initially, but then started to creep up

> again. at 2 1/2 yrs old, we took him to erie for

> casting. he was casted for 2 yrs. in june, lucas was

> 13o laying down out of cast and 20o standing in

> brace.

>

> my husband and i have always been curious about the

> spinecor brace since it is not a rigid brace. after

> 3 yrs in either a rigid brace or casts, we have been

> concerned about lucas' trunk muscles. we did start

> him on aquatic physical therapy this summer which

> has helped a great deal. of course, this brace is

> being offered to adolescents, but we were curious if

> lucas could be fitted. dr. sanders and jonathan the

> orthotist do prescribe the spinecor, but they've

> only been able to fit children who are 7 or 8 and

> older. therefore, we made a trip up to montreal to

> visit drs. rivard and coillard who are the inventors

> of the brace. lucas is the smallest child that they

> have ever tried to fit so it's a bit of an

> experiment. he was put in the brace and then we

> returned for a 1 month follow up last week. we

> decided to continue with this brace for now -- we

> always have the option of returning to a rigid

> brace. his next appt in montreal is in jan (gasp! 5

> months!) we will be keepi!

> ng an eye on his back and if anything looks like

> it's changing, then get an x-ray sooner. currently,

> he is 18o/14o in the brace standing.

>

> i would like to say that we are extremely grateful

> to dr. sanders and all the people at erie for their

> help in getting us to this point. casting was truly

> a god send, and we made it through lucas' early

> growth spurt and have a low curve as a result.

> unheard of considering his initial curves. it's very

> hard to think that we won't be going back to erie,

> but we've made it a point to make sure that we keep

> dr. sanders in the loop by sending all of our newest

> x-rays and photos.

>

> i do have a personal website if anyone is interested

> in seeing photos and x-rays. i would prefer to mail

> off-group since it is password protected. when i get

> a chance, perhaps i will post some on the photos

> section of the group.

>

> thanks for letting me post a book!

> deshea

>

> ---------------------------------

> Talk is cheap. Use Messenger to make

> PC-to-Phone calls. Great rates starting at 1¢/min.

>

> [Non-text portions of this message have been

> removed]

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

tracey,

thanks for coming in on that! i don't want to scare anyone or anything. that

is not my intention at all. of course, i was worried about the effect of

casting and lucas' overall muscle development, but knew that casting was the

best thing for him. weighing the pros and cons at the time. address the

scoliosis now and work on gaining back muscle strength later. lucas was

definitely not a floppy thing coming out of the cast, but his stomach muscles

were definitely weak according to the aquatic pt we now go to, and we are

addressing this. also, his flexibility in the way that he moved was obvious

that he learned to move like he was in a cast or a hard brace. he moves much

more " normally " now.

deshea

---- Original message ----

>Date: Tue, 5 Sep 2006 09:16:49 -0500

>From: " Tracey " <pthahn@...>

>Subject: Re: lucas update

><infantile scoliosis treatment >

>

> i know i am not in on this topic, but i wanted to

> share something that we were told by lexi's pt when

> we started casting. i was concerned about muscle

> weakness while she was in cast and i was told that

> anytime a child or person for that matter is in a

> standing position vital back muscles are being used

> to stand upright. they are also used when the arms

> are moved to pick up objects or move for anything.

> this was even the reply while she was in the cast

> and even now while in the brace. just because a

> brace or cast is applied doesn't necessarily mean

> the muscles aren't being worked.

>

> Re: lucas update

> >

> > Deshea,

> >

> > Glad to hear the good news! So happy the spinecor

> is

> > working out for Lucas. I will keep him in my

> prayers

> > (as I do the rest of the kiddos here)!

> >

> > Thinking positive thoughts,

> > & Jake

> >

> > " Deshea L. " <deshea@...> wrote:

> > hi everyone,

> >

> > we've been away most of july and august, but we're

> > back now that preschool is starting up. since

> lucas

> > doesn't turn 5 until november, he can't start

> > kindergarten until next year. :-(

> >

> > i've been reading everyone's posts but haven't had

> a

> > lot of time to reply, but i hope to remedy that.

> >

> > i thought i would post an update about lucas since

> > we've made some changes recently. lucas got his

> last

> > cast off at the end of june in erie. he had a

> > removable brace made that looked a lot like the

> > cast. dr. sanders said that our next appt. in sept

> > would be a clinic appt = no more casts for lucas

> > because 1. his curves are pretty low (but not 0o)

> 2.

> > his age 4 yrs 6 mos or so. casts are meant for

> > correcting when kids are younger so that their

> > growth helps with the process. after sept, dr.

> > sanders wanted us to return to boston children's

> for

> > continued follow-up with bracing.

> >

> > as a brief history, lucas was diagnosed at 18 mos

> > with a 68o/45o curve, he had a tight/fatty filum

> > that was detethered at 22 mos. he wore a tlso

> brace

> > during the day and a charleston/bending brace at

> > night for 1 yr at boston children's hospital.

> curves

> > decreased initially, but then started to creep up

> > again. at 2 1/2 yrs old, we took him to erie for

> > casting. he was casted for 2 yrs. in june, lucas

> was

> > 13o laying down out of cast and 20o standing in

> > brace.

> >

> > my husband and i have always been curious about

> the

> > spinecor brace since it is not a rigid brace.

> after

> > 3 yrs in either a rigid brace or casts, we have

> been

> > concerned about lucas' trunk muscles. we did start

> > him on aquatic physical therapy this summer which

> > has helped a great deal. of course, this brace is

> > being offered to adolescents, but we were curious

> if

> > lucas could be fitted. dr. sanders and jonathan

> the

> > orthotist do prescribe the spinecor, but they've

> > only been able to fit children who are 7 or 8 and

> > older. therefore, we made a trip up to montreal to

> > visit drs. rivard and coillard who are the

> inventors

> > of the brace. lucas is the smallest child that

> they

> > have ever tried to fit so it's a bit of an

> > experiment. he was put in the brace and then we

> > returned for a 1 month follow up last week. we

> > decided to continue with this brace for now -- we

> > always have the option of returning to a rigid

> > brace. his next appt in montreal is in jan (gasp!

> 5

> > months!) we will be keepi!

> > ng an eye on his back and if anything looks like

> > it's changing, then get an x-ray sooner.

> currently,

> > he is 18o/14o in the brace standing.

> >

> > i would like to say that we are extremely grateful

> > to dr. sanders and all the people at erie for

> their

> > help in getting us to this point. casting was

> truly

> > a god send, and we made it through lucas' early

> > growth spurt and have a low curve as a result.

> > unheard of considering his initial curves. it's

> very

> > hard to think that we won't be going back to erie,

> > but we've made it a point to make sure that we

> keep

> > dr. sanders in the loop by sending all of our

> newest

> > x-rays and photos.

> >

> > i do have a personal website if anyone is

> interested

> > in seeing photos and x-rays. i would prefer to

> mail

> > off-group since it is password protected. when i

> get

> > a chance, perhaps i will post some on the photos

> > section of the group.

> >

> > thanks for letting me post a book!

> > deshea

> >

> > ---------------------------------

> > Talk is cheap. Use Messenger to make

> > PC-to-Phone calls. Great rates starting at

> 1¢/min.

> >

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

> > removed]

> >

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

> > removed]

> >

> >

>

> [Non-text portions of this message have been

> removed]

>

>