Re: Cast 3

[Guest guest]

Keeley,

How much did grow from cast 1 to cast 3?

Kylie just had her 1 week check up since cast 2 she's at 30 (from an original

47)but cast 1 got her down to 25. We did not x ray between cast 1 and 2 and as

you probably remember, she had no cast or brace from June 20 to Aug 31.

Becky

Becky Stuckless, Sign Language Interpreter

Doug Reimneitz

519.818.3203

Cast 3

Is it normal for the curve to be unchanged from cast to cast? was at 90

in the first cast. They took him to 45 on cast. Then out of cast for two

months it went back to 90. Then in cast 2 they took it to 50. When he was

xrayed yesterday it was still at 90. Then today they corrected to 50 again.

They also said that the rotation has increased a bit. Is this common?

Just not sure if the casting is going to give us the results? Or is surgery in

our near future? Any thoughts? Opinions and comments welcome.

Those who have had the surgery how did your children adapt? Are they in pain?

How old were they when they had surgery? Was it the VEPTR or the growing rods?

Sorry for so many questions.

Keeley

Sent from my BlackBerry® wireless handheld

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

[Guest guest]

Hi Keeley,

 

How old is again?

 

I'm asking because my daughter, Layla is 22 months old.  She also had a high degree of curvature, highest being at 97 degrees.  She didn't seem to be responding to the casts either.  Her doctor then put turnbuckles on the cast, adjusted them every week, which seemed to helping somewhat, getting down to 50s.  I thought maybe it was the casting technique so, I went to Shriners SC for 2nd opinion, and to try the Mehta casting, which hasn't been proven to cure scoliosis in higher degrees.  Casting went ok, went from 90 out of cast to 70 in cast.  Layla developed a sore, so had to remove that cast.  Decided to keep her with original doctor here in Orlando, FL.  In just 2 weeks, her curve went from 70 in cast to 97 out of cast, and her doctor said he felt something else might be going on.  So, he ordered an MRI (which she already had a  " normal "  just about a year ago), but thought it was necessary.  Thank goodness he did, because they found she had a tethered spinal cord, that may have been aggravating the scoliosis and not allowing her little body to respond to casting.  She had surgery last week and is doing fine.  Both the surgeon and the ortho believe that this surgery could save her from multiple scoliosis correcting surgery.  We will resume casting once she heals completely.  And again, they both seem positive that finding a correcting the tethering, will allow the casting to work the way it should.

 

Has had an MRI? 

 

I'm sorry if I rambled, but please let me know if you have any questions.  Oh, they even took pics of the surgery and detethering so I could see!  Amazing....

 

Hope this helps,

 

Trantham

On Wed, Sep 7, 2011 at 4:30 PM, <kfaul@...> wrote:

Is it normal for the curve to be unchanged from cast to cast?   was at 90 in the first cast.  They took him to 45 on cast.  Then out of cast for two months it went back to 90.  Then in cast 2 they took it to 50.  When he was xrayed yesterday it was still at 90.  Then today they corrected to 50 again.

They also said that the rotation has increased a bit.  Is this common?Just not sure if the casting is going to give us the results?  Or is surgery in our near future?  Any thoughts?  Opinions and comments welcome.

Those who have had the surgery how did your children adapt?  Are they in pain?  How old were they when they had surgery?  Was it the VEPTR or the growing rods?  Sorry for so many questions.KeeleySent from my BlackBerry® wireless handheld

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

[Guest guest]

He went from 79cm to 84cm. He grew lots.

I am glad that they are able to get it to 50

Sent from my BlackBerry® wireless handheld

Cast 3

Is it normal for the curve to be unchanged from cast to cast? was at 90

in the first cast. They took him to 45 on cast. Then out of cast for two

months it went back to 90. Then in cast 2 they took it to 50. When he was

xrayed yesterday it was still at 90. Then today they corrected to 50 again.

They also said that the rotation has increased a bit. Is this common?

Just not sure if the casting is going to give us the results? Or is surgery in

our near future? Any thoughts? Opinions and comments welcome.

Those who have had the surgery how did your children adapt? Are they in pain?

How old were they when they had surgery? Was it the VEPTR or the growing rods?

Sorry for so many questions.

Keeley

Sent from my BlackBerry® wireless handheld

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

[Guest guest]

Hi is 20months. They found a lipoma in his spine when he was 1. They want to hold off surgery as long as possible. They want his bone mass to increase.Thank goddness they did the MRI. Hopefully it helps. Sent from my BlackBerry® wireless handheldFrom: Trantham <brendalinnia@...>Sender: infantile scoliosis treatment Date: Wed, 7 Sep 2011 18:17:38 -0400<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Cast 3 Hi Keeley, How old is again? I'm asking because my daughter, Layla is 22 months old.  She also had a high degree of curvature, highest being at 97 degrees.  She didn't seem to be responding to the casts either.  Her doctor then put turnbuckles on the cast, adjusted them every week, which seemed to helping somewhat, getting down to 50s.  I thought maybe it was the casting technique so, I went to Shriners SC for 2nd opinion, and to try the Mehta casting, which hasn't been proven to cure scoliosis in higher degrees.  Casting went ok, went from 90 out of cast to 70 in cast.  Layla developed a sore, so had to remove that cast.  Decided to keep her with original doctor here in Orlando, FL.  In just 2 weeks, her curve went from 70 in cast to 97 out of cast, and her doctor said he felt something else might be going on.  So, he ordered an MRI (which she already had a  " normal "  just about a year ago), but thought it was necessary.  Thank goodness he did, because they found she had a tethered spinal cord, that may have been aggravating the scoliosis and not allowing her little body to respond to casting.  She had surgery last week and is doing fine.  Both the surgeon and the ortho believe that this surgery could save her from multiple scoliosis correcting surgery.  We will resume casting once she heals completely.  And again, they both seem positive that finding a correcting the tethering, will allow the casting to work the way it should. Has had an MRI?   I'm sorry if I rambled, but please let me know if you have any questions.  Oh, they even took pics of the surgery and detethering so I could see!  Amazing.... Hope this helps,  TranthamOn Wed, Sep 7, 2011 at 4:30 PM, <kfaul@...> wrote:Is it normal for the curve to be unchanged from cast to cast?   was at 90 in the first cast.  They took him to 45 on cast.  Then out of cast for two months it went back to 90.  Then in cast 2 they took it to 50.  When he was xrayed yesterday it was still at 90.  Then today they corrected to 50 again.They also said that the rotation has increased a bit.  Is this common?Just not sure if the casting is going to give us the results?  Or is surgery in our near future?  Any thoughts?  Opinions and comments welcome.Those who have had the surgery how did your children adapt?  Are they in pain?  How old were they when they had surgery?  Was it the VEPTR or the growing rods?  Sorry for so many questions.KeeleySent from my BlackBerry® wireless handheld------------------------------------

[Guest guest]

Keeley,

My daughter's curve started at 58 degrees and has remained essentially unchanged

in 6 casts and one brace. She does have other congenital problems, so that may

be the cause. We know that she will have to have surgery eventually, but we

will continue to cast and brace her for as long as possible so that she can

grow. Every orthopedic doctor we've consulted has said put off surgery until

it's absolutely necessary. I will admit having Audrey in a cast frustrating

when I know it's not correcting her, but I have to think of the alternative...

mom to Audrey, casts and brace from SLC

>

> Is it normal for the curve to be unchanged from cast to cast? was at

90 in the first cast. They took him to 45 on cast. Then out of cast for two

months it went back to 90. Then in cast 2 they took it to 50. When he was

xrayed yesterday it was still at 90. Then today they corrected to 50 again.

> They also said that the rotation has increased a bit. Is this common?

>

> Just not sure if the casting is going to give us the results? Or is surgery

in our near future? Any thoughts? Opinions and comments welcome.

>

> Those who have had the surgery how did your children adapt? Are they in pain?

How old were they when they had surgery? Was it the VEPTR or the growing rods?

Sorry for so many questions.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

[Guest guest]

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheldFrom: "audreymdawson" <audreymdawson@...>Sender: infantile scoliosis treatment Date: Thu, 08 Sep 2011 17:04:19 -0000<infantile scoliosis treatment >Reply infantile scoliosis treatment Subject: Re: Cast 3 Keeley,My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...mom to Audrey, casts and brace from SLC>> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again. > They also said that the rotation has increased a bit. Is this common?> > Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome. > > Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions. > Keeley > Sent from my BlackBerry® wireless handheld>

[Guest guest]

Hi,I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into

buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute. Tame Sent from my iPhoneOn Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheldFrom: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000<infantile scoliosis treatment >Reply infantile scoliosis treatment

Subject: Re: Cast 3

Keeley,

My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...

mom to Audrey, casts and brace from SLC

>

> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again.

> They also said that the rotation has increased a bit. Is this common?

>

> Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome.

>

> Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

[Guest guest]

tame,if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into

buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute. Tame Sent from my iPhoneOn Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheldFrom: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000<infantile scoliosis treatment >Reply infantile scoliosis treatment

Subject: Re: Cast 3

Keeley,

My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...

mom to Audrey, casts and brace from SLC

>

> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again.

> They also said that the rotation has increased a bit. Is this common?

>

> Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome.

>

> Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

[Guest guest]

Hey Tame! I am having a major issue with cast vs. brace also! We use Dr. K in B’ham Alabama at Children’s hospital! Sierra started casting in April of 2010 with a 34 degree curve that I noticed NOT her Ped. and contacted , ISOP and was into see Dr. K with in a week! He determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis. Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So this hit me like a ton of bricks! Anyway, Sierra just received her 8th cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast. Sierra is 2 1/2 yrs. old!

In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They had to cast her twice that day and messed up the cast and I knew it..it was just NOT right. We should have went back & had it redone before waiting untill 12 weeks in June!

In June she was only 17 degrees out of cast...she had a major growth spurt & with that jacked up cast on we did not get much out of cast correction, BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat out told me that he felt sure he could get Sierra down to ZERO or atleast single digits out of cast!!! I have it written down and remember everything he says like that!!!! Well, In Sept. we go in and Sierra is 16 degrees out of cast, but again he got her down to ZERO or negative a few degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny pheno type & he says her spine is super stiff! Dr. K all of sudden says we have missed the major growth spurts before age 2 yrs. & now that she is 2 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He wants us to bring her in remove 8th cast & immediately have her fitted for the Providence Brace...the thing is he does not want her spine to relax a bit...BUT we have to wait 3-4 days to get the brace back!!! What then???? Sierra will be out of cast/brace for several days!!!! I say it is bull shit and I am getting more concerned my the minute or pissed you should say! When I talked to Dr. K nurse and expressed my concerns..she said very smart ass....Well u can’t keep casting forever!!!! OK! I kinda freaked on her! I said that I was deeply worried that Sierra may start regressing back in the brace & she said well you are gonna always have that worry...I was like do u have children??? She said “NOâ€...well enough said right! I asked Dr. k when he mentioned the brace what if Sierra bounced back into the 20 degrees or so...since we gonna be X-raying every 4-6 months...He said well, we will just CAST again....I’m like WTHE!!!! I have this GUT feeling just like when I discovered her curve at 9 mo.s old. I want to keep casting and c if we can get more correction!!! I am scheduling a conference call with Dr. K, Myself & my husband. I feel we r being bullied into a brace & I do NOT like it at all! We have came a very LONG way to end up going backwards! We can handle the cast we been doing in since she was 12 mo. old!!! Just upset & very frustrated!!!

Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a 3-4 degree margin of error!!!! Whatever!!!

From: candice_welch85@...

Sent: Friday, September 09, 2011 11:05 AM

infantile scoliosis treatment

Subject: Re: Re: Cast 3

tame,

if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.

On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,

I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute.

Tame

Sent from my iPhone

On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheld

From: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000

<infantile scoliosis treatment >

Replyinfantile scoliosis treatment

Subject: Re: Cast 3

Keeley,My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...mom to Audrey, casts and brace from SLC>> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again. > They also said that the rotation has increased a bit. Is this common?> > Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome. > > Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions. > Keeley > Sent from my BlackBerry® wireless handheld>

[Guest guest]

My thoughts exactly and it is TOTAL bullshit. Can't type now, but will later. Our story is similar. It is frustrating and just wrong. As a side note I not only discovered his scoliosis bur also his RARE syndrome. TSent from my iPhoneOn Sep 9, 2011, at 12:06 PM, "Kristi" <kristij@...> wrote:

Hey Tame! I am having a major issue with cast vs. brace also! We use Dr. K in B’ham Alabama at Children’s hospital! Sierra started casting in April of 2010 with a 34 degree curve that I noticed NOT her Ped. and contacted , ISOP and was into see Dr. K with in a week! He determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis. Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So this hit me like a ton of bricks! Anyway, Sierra just received her 8th cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast. Sierra is 2 1/2 yrs. old!

In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They had to cast her twice that day and messed up the cast and I knew it..it was just NOT right. We should have went back & had it redone before waiting untill 12 weeks in June!

In June she was only 17 degrees out of cast...she had a major growth spurt & with that jacked up cast on we did not get much out of cast correction, BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat out told me that he felt sure he could get Sierra down to ZERO or atleast single digits out of cast!!! I have it written down and remember everything he says like that!!!! Well, In Sept. we go in and Sierra is 16 degrees out of cast, but again he got her down to ZERO or negative a few degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny pheno type & he says her spine is super stiff! Dr. K all of sudden says we have missed the major growth spurts before age 2 yrs. & now that she is 2 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He wants us to bring her in remove 8th cast & immediately have her fitted for the Providence Brace...the thing is he does not want her spine to relax a bit...BUT we have to wait 3-4 days to get the brace back!!! What then???? Sierra will be out of cast/brace for several days!!!! I say it is bull shit and I am getting more concerned my the minute or pissed you should say! When I talked to Dr. K nurse and expressed my concerns..she said very smart ass....Well u can’t keep casting forever!!!! OK! I kinda freaked on her! I said that I was deeply worried that Sierra may start regressing back in the brace & she said well you are gonna always have that worry...I was like do u have children??? She said “NOâ€...well enough said right! I asked Dr. k when he mentioned the brace what if Sierra bounced back into the 20 degrees or so...since we gonna be X-raying every 4-6 months...He said well, we will just CAST again....I’m like WTHE!!!! I have this GUT feeling just like when I discovered her curve at 9 mo.s old. I want to keep casting and c if we can get more correction!!! I am scheduling a conference call with Dr. K, Myself & my husband. I feel we r being bullied into a brace & I do NOT like it at all! We have came a very LONG way to end up going backwards! We can handle the cast we been doing in since she was 12 mo. old!!! Just upset & very frustrated!!!

Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a 3-4 degree margin of error!!!! Whatever!!!

From: candice_welch85@...

Sent: Friday, September 09, 2011 11:05 AM

infantile scoliosis treatment

Subject: Re: Re: Cast 3

tame,

if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.

On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,

I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute.

Tame

Sent from my iPhone

On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheld

From: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000

<infantile scoliosis treatment >

Replyinfantile scoliosis treatment

Subject: Re: Cast 3

Keeley,My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...mom to Audrey, casts and brace from SLC>> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again. > They also said that the rotation has increased a bit. Is this common?> > Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome. > > Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions. > Keeley > Sent from my BlackBerry® wireless handheld>

[Guest guest]

Our doc said Ben is too old and too big to be cured, so he wants to brace but ALSO said they would cast later if he gets worse. I wanted to throw my hands up in the air and say what's the point of casting later? NOW is the only shot we have. His back has improved so much already. All I want to do is reverse the curve as much as possible and manage it the best we can until his syndrome time clock slows his growth down. One apt the doc said he was happy w the progress and we would keep going and now the next time he wants to throw in the towel and quit. ??????? I do not want to yo yo bk and forth between cast and brace. My son isn't getting younger and his back won't get better in brace. We tried that for 2 years when Ben was 2 he went in a Boston bending brace at night only. He had one curve and it was eleven degrees. I asked about Mehta then and got a big fat smack down on that. I will regret staying with that ass of a

doc as long as we did:( he was horrible.... He actually changed out bending brace to a tlso brace and didn't tell us. When we got the script for it and I saw it wasn't a bending brace I called to ask about it. The nurse told me it was the same just dif wording. I went to ortho to have it made and when we picked it up it was a completely dif type. The doc didn't give us any directions so the ortho said to have him wear it 23 hrs a day. How can you change my child from a night only bending brace to a day/night brace and NOT tell the parent? Or give any instructions? Needless to say we never went back. We switched to a new ortho sugeon who we loved. He was really good and explained everything. He took a lot of time.after a few months he suggested we try casting but he's only trained in risser. He helped me get into ish rite. He made a personal phone call. I wanted dr s at ish bc he knows our other doc here in la and I thought we could all work

together uf an emerge cy came up.... We got doc r. He is okay but we just are not on the same page. My son has been through so much and he's doing so good... So so good I can hardly believe it:) except for his back ... Which is tremendously better. He grew 1 inch from may 22 to august 8. He's flexible, he's growing, he's happier in a cast, he looks normal w clothes on over it, he's running, riding a bike, ruding a scooter, laughing...... He moves around better in a cast. My doc wants to pull the plug bc he wants him to live a normal life and won't be cured. My son does live a normal life in the sense that it's the o ly life he knows. It's the only life we k ow....it's normal bc we live it every day. It's just the way it is. My sons life will always be harder and different than others. His syndrome will sometimes set him apart in some ways. I'm ok w that. It will never define him or exclude him.... It will only cause us to redefine the way things

are done and find a way around them. The fact that he has to deal w his back on top of it all is unfortunate but it is what it is. I just want to right to make decisions that are soundly based on his medical history and improving his future life rather than adding to the problematic drama. I need to help him get his back to a managable range to hold off surgery. We are so close to the magic number of 20 degrees. I was ready to cast for 2 yrs straight. Not 8 m and 5 casts. Ugh. I shoulda been a doctor.T Sent from my iPhoneOn Sep 9, 2011, at 12:06 PM, "Kristi" <kristij@...> wrote:

Hey Tame! I am having a major issue with cast vs. brace also! We use Dr. K in B’ham Alabama at Children’s hospital! Sierra started casting in April of 2010 with a 34 degree curve that I noticed NOT her Ped. and contacted , ISOP and was into see Dr. K with in a week! He determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis. Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So this hit me like a ton of bricks! Anyway, Sierra just received her 8th cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast. Sierra is 2 1/2 yrs. old!

In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They had to cast her twice that day and messed up the cast and I knew it..it was just NOT right. We should have went back & had it redone before waiting untill 12 weeks in June!

In June she was only 17 degrees out of cast...she had a major growth spurt & with that jacked up cast on we did not get much out of cast correction, BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat out told me that he felt sure he could get Sierra down to ZERO or atleast single digits out of cast!!! I have it written down and remember everything he says like that!!!! Well, In Sept. we go in and Sierra is 16 degrees out of cast, but again he got her down to ZERO or negative a few degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny pheno type & he says her spine is super stiff! Dr. K all of sudden says we have missed the major growth spurts before age 2 yrs. & now that she is 2 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He wants us to bring her in remove 8th cast & immediately have her fitted for the Providence Brace...the thing is he does not want her spine to relax a bit...BUT we have to wait 3-4 days to get the brace back!!! What then???? Sierra will be out of cast/brace for several days!!!! I say it is bull shit and I am getting more concerned my the minute or pissed you should say! When I talked to Dr. K nurse and expressed my concerns..she said very smart ass....Well u can’t keep casting forever!!!! OK! I kinda freaked on her! I said that I was deeply worried that Sierra may start regressing back in the brace & she said well you are gonna always have that worry...I was like do u have children??? She said “NOâ€...well enough said right! I asked Dr. k when he mentioned the brace what if Sierra bounced back into the 20 degrees or so...since we gonna be X-raying every 4-6 months...He said well, we will just CAST again....I’m like WTHE!!!! I have this GUT feeling just like when I discovered her curve at 9 mo.s old. I want to keep casting and c if we can get more correction!!! I am scheduling a conference call with Dr. K, Myself & my husband. I feel we r being bullied into a brace & I do NOT like it at all! We have came a very LONG way to end up going backwards! We can handle the cast we been doing in since she was 12 mo. old!!! Just upset & very frustrated!!!

Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a 3-4 degree margin of error!!!! Whatever!!!

From: candice_welch85@...

Sent: Friday, September 09, 2011 11:05 AM

infantile scoliosis treatment

Subject: Re: Re: Cast 3

tame,

if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.

On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,

I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute.

Tame

Sent from my iPhone

On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheld

From: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000

<infantile scoliosis treatment >

Replyinfantile scoliosis treatment

Subject: Re: Cast 3

Keeley,My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...mom to Audrey, casts and brace from SLC>> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again. > They also said that the rotation has increased a bit. Is this common?> > Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome. > > Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions. > Keeley > Sent from my BlackBerry® wireless handheld>

[Guest guest]

Last but not least I forgot my game plan. Since the docs suddenly worried about the number of times Ben has to be sedated I want to move cast dates from 8 to 10 weeks (even tho the first cast was that long due to a scheduling glitch and his cast was waaaay tight) and do xrays every other cast. That will minimize drugs in his system as well as radiation. If I have to tatoo it on my forehead that I don't expect a cure I will. I'm a realistic person. I know what's on the table. I understand it. I'm not in a dreamworld. The reality is if you take my baby out of a cast at this moment he will most likely have surgery by 8. I don't want that. If we need surgery then I prefer 12 at earliest. We only have one more shot at this. If we can keep him in cast and in the low 20's I think we stand a chance. I will also offer the idea of molding for a brace in may (which means he will be in a cast for total of 16 m. Bracing 6 wks

later(he grows so damn fast our braces never lasted long-and waiting 8 weeks for a brace is silly) wear a brace till september and xray (that's 3 mo) and if there is ANY sign of regression we go back to a cast. I'm off for the summer so can work w Ben to build core strength. I think it's a fair and reasonable plan/compromise...... The question is, will he? And what if he says no? T Sent from my iPhoneOn Sep 9, 2011, at 12:06 PM, "Kristi" <kristij@...> wrote:

Hey Tame! I am having a major issue with cast vs. brace also! We use Dr. K in B’ham Alabama at Children’s hospital! Sierra started casting in April of 2010 with a 34 degree curve that I noticed NOT her Ped. and contacted , ISOP and was into see Dr. K with in a week! He determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis. Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So this hit me like a ton of bricks! Anyway, Sierra just received her 8th cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast. Sierra is 2 1/2 yrs. old!

In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They had to cast her twice that day and messed up the cast and I knew it..it was just NOT right. We should have went back & had it redone before waiting untill 12 weeks in June!

In June she was only 17 degrees out of cast...she had a major growth spurt & with that jacked up cast on we did not get much out of cast correction, BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat out told me that he felt sure he could get Sierra down to ZERO or atleast single digits out of cast!!! I have it written down and remember everything he says like that!!!! Well, In Sept. we go in and Sierra is 16 degrees out of cast, but again he got her down to ZERO or negative a few degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny pheno type & he says her spine is super stiff! Dr. K all of sudden says we have missed the major growth spurts before age 2 yrs. & now that she is 2 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He wants us to bring her in remove 8th cast & immediately have her fitted for the Providence Brace...the thing is he does not want her spine to relax a bit...BUT we have to wait 3-4 days to get the brace back!!! What then???? Sierra will be out of cast/brace for several days!!!! I say it is bull shit and I am getting more concerned my the minute or pissed you should say! When I talked to Dr. K nurse and expressed my concerns..she said very smart ass....Well u can’t keep casting forever!!!! OK! I kinda freaked on her! I said that I was deeply worried that Sierra may start regressing back in the brace & she said well you are gonna always have that worry...I was like do u have children??? She said “NOâ€...well enough said right! I asked Dr. k when he mentioned the brace what if Sierra bounced back into the 20 degrees or so...since we gonna be X-raying every 4-6 months...He said well, we will just CAST again....I’m like WTHE!!!! I have this GUT feeling just like when I discovered her curve at 9 mo.s old. I want to keep casting and c if we can get more correction!!! I am scheduling a conference call with Dr. K, Myself & my husband. I feel we r being bullied into a brace & I do NOT like it at all! We have came a very LONG way to end up going backwards! We can handle the cast we been doing in since she was 12 mo. old!!! Just upset & very frustrated!!!

Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a 3-4 degree margin of error!!!! Whatever!!!

From: candice_welch85@...

Sent: Friday, September 09, 2011 11:05 AM

infantile scoliosis treatment

Subject: Re: Re: Cast 3

tame,

if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.

On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,

I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute.

Tame

Sent from my iPhone

On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheld

From: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000

<infantile scoliosis treatment >

Replyinfantile scoliosis treatment

Subject: Re: Cast 3

Keeley,My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...mom to Audrey, casts and brace from SLC>> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again. > They also said that the rotation has increased a bit. Is this common?> > Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome. > > Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions. > Keeley > Sent from my BlackBerry® wireless handheld>

[Guest guest]

I think so too. Once his growth slows his spine might stabilize a bit and he will do better in a brace. His scoliosis was always slow but steady progression in brace. TSent from my iPhoneOn Sep 9, 2011, at 11:05 AM, candice_welch85@... wrote:

tame,if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into

buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute. Tame Sent from my iPhoneOn Sep 8, 2011, at 12:50 PM, kfaul@...

wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheldFrom: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000<infantile scoliosis treatment >Reply infantile scoliosis treatment

Subject: Re: Cast 3

Keeley,

My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...

mom to Audrey, casts and brace from SLC

>

> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again.

> They also said that the rotation has increased a bit. Is this common?

>

> Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome.

>

> Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

[Guest guest]

Tame, I know there can be some difficult doctors out there but I think with your very well thought out explanation, it would be pretty darn tough for him to argue with you. I don't think he has a legitimate argument so far and I think you do, so it would be interesting to watch him try and come up with something after hearing you out. If he still persists in a way you are not comfortable, go to the hospital board. Whatever you do, don't give up! The bottom line is you are the parent and in the end the decisions for his treatment are yours, not the doctors. Hang in there!

Ann Boros

www.curvybaby.comjayann_24@... To: infantile scoliosis treatment From: dazies2001@...Date: Fri, 9 Sep 2011 19:35:25 -0700Subject: Re: Re: Cast 3

Last but not least I forgot my game plan. Since the docs suddenly worried about the number of times Ben has to be sedated I want to move cast dates from 8 to 10 weeks (even tho the first cast was that long due to a scheduling glitch and his cast was waaaay tight) and do xrays every other cast. That will minimize drugs in his system as well as radiation. If I have to tatoo it on my forehead that I don't expect a cure I will. I'm a realistic person. I know what's on the table. I understand it. I'm not in a dreamworld. The reality is if you take my baby out of a cast at this moment he will most likely have surgery by 8. I don't want that. If we need surgery then I prefer 12 at earliest. We only have one more shot at this. If we can keep him in cast and in the low 20's I think we stand a chance. I will also offer the idea of molding for a brace in may (which means he will be in a cast for total of 16 m. Bracing 6 wks

later(he grows so damn fast our braces never lasted long-and waiting 8 weeks for a brace is silly) wear a brace till september and xray (that's 3 mo) and if there is ANY sign of regression we go back to a cast. I'm off for the summer so can work w Ben to build core strength. I think it's a fair and reasonable plan/compromise...... The question is, will he? And what if he says no? T Sent from my iPhoneOn Sep 9, 2011, at 12:06 PM, "Kristi" <kristij@...> wrote:

Hey Tame! I am having a major issue with cast vs. brace also! We use Dr. K in B’ham Alabama at Children’s hospital! Sierra started casting in April of 2010 with a 34 degree curve that I noticed NOT her Ped. and contacted , ISOP and was into see Dr. K with in a week! He determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis. Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So this hit me like a ton of bricks! Anyway, Sierra just received her 8th cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast. Sierra is 2 1/2 yrs. old!

In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They had to cast her twice that day and messed up the cast and I knew it..it was just NOT right. We should have went back & had it redone before waiting untill 12 weeks in June!

In June she was only 17 degrees out of cast...she had a major growth spurt & with that jacked up cast on we did not get much out of cast correction, BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat out told me that he felt sure he could get Sierra down to ZERO or atleast single digits out of cast!!! I have it written down and remember everything he says like that!!!! Well, In Sept. we go in and Sierra is 16 degrees out of cast, but again he got her down to ZERO or negative a few degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny pheno type & he says her spine is super stiff! Dr. K all of sudden says we have missed the major growth spurts before age 2 yrs. & now that she is 2 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He wants us to bring her in remove 8th cast & immediately have her fitted for the Providence Brace...the thing is he does not want her spine to relax a bit...BUT we have to wait 3-4 days to get the brace back!!! What then???? Sierra will be out of cast/brace for several days!!!! I say it is bull shit and I am getting more concerned my the minute or pissed you should say! When I talked to Dr. K nurse and expressed my concerns..she said very smart ass....Well u can’t keep casting forever!!!! OK! I kinda freaked on her! I said that I was deeply worried that Sierra may start regressing back in the brace & she said well you are gonna always have that worry...I was like do u have children??? She said “NO”...well enough said right! I asked Dr. k when he mentioned the brace what if Sierra bounced back into the 20 degrees or so...since we gonna be X-raying every 4-6 months...He said well, we will just CAST again....I’m like WTHE!!!! I have this GUT feeling just like when I discovered her curve at 9 mo.s old. I want to keep casting and c if we can get more correction!!! I am scheduling a conference call with Dr. K, Myself & my husband. I feel we r being bullied into a brace & I do NOT like it at all! We have came a very LONG way to end up going backwards! We can handle the cast we been doing in since she was 12 mo. old!!! Just upset & very frustrated!!!

Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a 3-4 degree margin of error!!!! Whatever!!!

From: candice_welch85@...

Sent: Friday, September 09, 2011 11:05 AM

infantile scoliosis treatment

Subject: Re: Re: Cast 3

tame,

if I was you I would also like to cast atleast till he is 5 because of the overgrowth syndrome. he is your son you should be able to choose what treatment you want.

On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

Hi,

I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green earth is wrong with my doctor. If I could choke him I might. My son has a syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the next time we go in which is oct 6. I'm sooooooooo upset. He seems to think my child should lead a normal life and be braced since casting won't cure him. I know it won't cure him, but I want to buy him time. Why do other docs get into the buy time thing but mine doesn't? He started w s curve in mid to high 40's and is now at 26/25. This is progress to me. I hope your children have the opportunity to buy time they need. I just don't understand this whole medical process sometimes and WHY it has to be so complicated. I am venting since I'm mad tonight, but really I want you to know as crazy as it seems you are lucky your doc is into buying time. Dunno if either of you have done bracing, but our fam prefers casting over bracing. I'm in the process of writing a letter to our doc trying to convince him to continue w Mehta. Without a cast I feel like my son will get the shaft to put it bluntly. He has a overgrowth syndrome and will grow faster than normal until his 5th yr of life. If we can't manage his scoliosis within that time frame..... We loose. I am glad your docs agree with casts to buy time. I'm sorry your children may not be completely cured. I guess I just want you to know all is not lost. You still have options and in my opinion buying time is a good thing. Please don't doubt that even for a minute.

Tame

Sent from my iPhone

On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

Thanks . Our ortho said the same today. Try to put off surgery as long as we can. Keeley Sent from my BlackBerry® wireless handheld

From: "audreymdawson" <audreymdawson@...>

Sender: infantile scoliosis treatment

Date: Thu, 08 Sep 2011 17:04:19 -0000

<infantile scoliosis treatment >

Replyinfantile scoliosis treatment

Subject: Re: Cast 3

Keeley,My daughter's curve started at 58 degrees and has remained essentially unchanged in 6 casts and one brace. She does have other congenital problems, so that may be the cause. We know that she will have to have surgery eventually, but we will continue to cast and brace her for as long as possible so that she can grow. Every orthopedic doctor we've consulted has said put off surgery until it's absolutely necessary. I will admit having Audrey in a cast frustrating when I know it's not correcting her, but I have to think of the alternative...mom to Audrey, casts and brace from SLC>> Is it normal for the curve to be unchanged from cast to cast? was at 90 in the first cast. They took him to 45 on cast. Then out of cast for two months it went back to 90. Then in cast 2 they took it to 50. When he was xrayed yesterday it was still at 90. Then today they corrected to 50 again. > They also said that the rotation has increased a bit. Is this common?> > Just not sure if the casting is going to give us the results? Or is surgery in our near future? Any thoughts? Opinions and comments welcome. > > Those who have had the surgery how did your children adapt? Are they in pain? How old were they when they had surgery? Was it the VEPTR or the growing rods? Sorry for so many questions. > Keeley > Sent from my BlackBerry® wireless handheld>

[Guest guest]

Hi Tame,

It sounds like you know what you want and how to explain it. Please let us know

what your Dr. says. Hopefully you can continue casting and keep the progression

in check.

[Guest guest]

Hi Keeley,

Its normal for such a severe curve/rotation to regress immediately if the

EDF casts are not applied in a solid block. A solid series of edf casting

may be able to improve body shape and decrease curve(s)/rotation prior to

surgery if the child has missed the window of opportunity to grow

straight.

My daughter had 100 degree curve(s) by age 2 and needed surgery by age 8.

We were able to buy her 6.5 yrs of invaluable growth time prior to taking

the surgical leap.

I wont sugar coat here..Repeated surgeries were difficult on her (and I)

and the distraction hardware was only good for 7 legthenings. There were

multiple complications and her spine had fused by age 11. This is my

daughters story only and I hope you hear better news from other parents.

Please let me know if you have any questions on Olivias care.

HRH

> Is it normal for the curve to be unchanged from cast to cast? was

> at 90 in the first cast. They took him to 45 on cast. Then out of cast

> for two months it went back to 90. Then in cast 2 they took it to 50.

> When he was xrayed yesterday it was still at 90. Then today they

> corrected to 50 again.

> They also said that the rotation has increased a bit. Is this common?

>

> Just not sure if the casting is going to give us the results? Or is

> surgery in our near future? Any thoughts? Opinions and comments welcome.

>

> Those who have had the surgery how did your children adapt? Are they in

> pain? How old were they when they had surgery? Was it the VEPTR or the

> growing rods? Sorry for so many questions.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

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

>

>

[Guest guest]

So glad an MRI was ordered and that you guys are now on the right track!

HRH

> Hi Keeley,

>

> How old is again?

>

> I'm asking because my daughter, Layla is 22 months old. She also had a

> high

> degree of curvature, highest being at 97 degrees. She didn't seem to be

> responding to the casts either. Her doctor then put turnbuckles on the

> cast, adjusted them every week, which seemed to helping somewhat, getting

> down to 50s. I thought maybe it was the casting technique so, I went to

> Shriners SC for 2nd opinion, and to try the Mehta casting, which hasn't

> been

> proven to cure scoliosis in higher degrees. Casting went ok, went from 90

> out of cast to 70 in cast. Layla developed a sore, so had to remove that

> cast. Decided to keep her with original doctor here in Orlando, FL. In

> just 2 weeks, her curve went from 70 in cast to 97 out of cast, and her

> doctor said he felt something else might be going on. So, he ordered an

> MRI

> (which she already had a " normal " just about a year ago), but thought it

> was

> necessary. Thank goodness he did, because they found she had a tethered

> spinal cord, that may have been aggravating the scoliosis and not allowing

> her little body to respond to casting. She had surgery last week and is

> doing fine. Both the surgeon and the ortho believe that this surgery

> could

> save her from multiple scoliosis correcting surgery. We will resume

> casting

> once she heals completely. And again, they both seem positive that

> finding

> a correcting the tethering, will allow the casting to work the way it

> should.

>

> Has had an MRI?

>

> I'm sorry if I rambled, but please let me know if you have any questions.

> Oh, they even took pics of the surgery and detethering so I could see!

> Amazing....

>

> Hope this helps,

>

> Trantham

>

> On Wed, Sep 7, 2011 at 4:30 PM, <kfaul@...> wrote:

>

>> Is it normal for the curve to be unchanged from cast to cast?

>> was

>> at 90 in the first cast. They took him to 45 on cast. Then out of cast

>> for

>> two months it went back to 90. Then in cast 2 they took it to 50. When

>> he

>> was xrayed yesterday it was still at 90. Then today they corrected to

>> 50

>> again.

>> They also said that the rotation has increased a bit. Is this common?

>>

>> Just not sure if the casting is going to give us the results? Or is

>> surgery in our near future? Any thoughts? Opinions and comments

>> welcome.

>>

>> Those who have had the surgery how did your children adapt? Are they in

>> pain? How old were they when they had surgery? Was it the VEPTR or the

>> growing rods? Sorry for so many questions.

>> Keeley

>> Sent from my BlackBerry® wireless handheld

>>

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

>>

>>

[Guest guest]

Sorry Tame. Im sure you've gathered all ammunition in continuing w/

casting and hope you are able to persuade the doc. Let me know if you

ever need help.

HRH

> Hi,

> I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green

> earth is wrong with my doctor. If I could choke him I might. My son has a

> syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is

> 4.5 yrs) but my doc wants to mold him for a brace the next time we go in

> which is oct 6. I'm sooooooooo upset. He seems to think my child should

> lead a normal life and be braced since casting won't cure him. I know it

> won't cure him, but I want to buy him time. Why do other docs get into the

> buy time thing but mine doesn't? He started w s curve in mid to high 40's

> and is now at 26/25. This is progress to me. I hope your children have

> the opportunity to buy time they need. I just don't understand this whole

> medical process sometimes and WHY it has to be so complicated. I am

> venting since I'm mad tonight, but really I want you to know as crazy as

> it seems you are lucky your doc is into buying time. Dunno if either of

> you have done

> bracing, but our fam prefers casting over bracing. I'm in the process of

> writing a letter to our doc trying to convince him to continue w Mehta.

> Without a cast I feel like my son will get the shaft to put it bluntly.

> He has a overgrowth syndrome and will grow faster than normal until his

> 5th yr of life. If we can't manage his scoliosis within that time

> frame..... We loose. I am glad your docs agree with casts to buy time.

> I'm sorry your children may not be completely cured. I guess I just want

> you to know all is not lost. You still have options and in my opinion

> buying time is a good thing. Please don't doubt that even for a minute.

> Tame

>

> Sent from my iPhone

>

> On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

>

>

>

> Thanks . Our ortho said the same today. Try to put off surgery as

> long as we can.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

> From: " audreymdawson " <audreymdawson@...>

> Sender: infantile scoliosis treatment

> Date: Thu, 08 Sep 2011 17:04:19 -0000

> <infantile scoliosis treatment >

> Replyinfantile scoliosis treatment

> Subject: Re: Cast 3

>

> Keeley,

> My daughter's curve started at 58 degrees and has remained essentially

> unchanged in 6 casts and one brace. She does have other congenital

> problems, so that may be the cause. We know that she will have to have

> surgery eventually, but we will continue to cast and brace her for as long

> as possible so that she can grow. Every orthopedic doctor we've consulted

> has said put off surgery until it's absolutely necessary. I will admit

> having Audrey in a cast frustrating when I know it's not correcting her,

> but I have to think of the alternative...

>

> mom to Audrey, casts and brace from SLC

>

>

>>

>> Is it normal for the curve to be unchanged from cast to cast? was

>> at 90 in the first cast. They took him to 45 on cast. Then out of cast

>> for two months it went back to 90. Then in cast 2 they took it to 50.

>> When he was xrayed yesterday it was still at 90. Then today they

>> corrected to 50 again.

>> They also said that the rotation has increased a bit. Is this common?

>>

>> Just not sure if the casting is going to give us the results? Or is

>> surgery in our near future? Any thoughts? Opinions and comments welcome.

>>

>> Those who have had the surgery how did your children adapt? Are they in

>> pain? How old were they when they had surgery? Was it the VEPTR or the

>> growing rods? Sorry for so many questions.

>> Keeley

>> Sent from my BlackBerry® wireless handheld

>>

>

>

>

>

>

[Guest guest]

How'd the conf. call go? I think its a great idea to speak to the

treating doc direct and always make sure that the goal is the same for

your child.. The good thing is, we have seen great results with bracing

(post ET w/ edf casting) if the rotation has been corrected & the cobb is

low. The childs muscles/tissues in many cases seem to respond well and

more correction can be attained by going into a well made brace. Its also

positive that your doc is willing to cast again should you notice

regression. And~ I know you'll be watching her lil back like a hawk.

Please keep me posted. Im home now.

HRH

> Hey Tame! I am having a major issue with cast vs. brace also! We use Dr.

> K in B’ham Alabama at Children’s hospital! Sierra started casting in

> April of 2010 with a 34 degree curve that I noticed NOT her Ped. and

> contacted , ISOP and was into see Dr. K with in a week! He

> determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis.

> Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So

> this hit me like a ton of bricks! Anyway, Sierra just received her 8th

> cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast.

> Sierra is 2 1/2 yrs. old!

> In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They

> had to cast her twice that day and messed up the cast and I knew it..it

> was just NOT right. We should have went back & had it redone before

> waiting untill 12 weeks in June!

> In June she was only 17 degrees out of cast...she had a major growth spurt

> & with that jacked up cast on we did not get much out of cast correction,

> BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat

> out told me that he felt sure he could get Sierra down to ZERO or atleast

> single digits out of cast!!! I have it written down and remember

> everything he says like that!!!! Well, In Sept. we go in and Sierra is 16

> degrees out of cast, but again he got her down to ZERO or negative a few

> degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny

> pheno type & he says her spine is super stiff! Dr. K all of sudden says we

> have missed the major growth spurts before age 2 yrs. & now that she is 2

> 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He

> wants us to bring her in remove 8th cast & immediately have her fitted for

> the Providence Brace...the thing is he does not want her spine to relax a

> bit...BUT we have to wait 3-4 days to get the brace back!!! What then????

> Sierra will be out of cast/brace for several days!!!! I say it is bull

> shit and I am getting more concerned my the minute or pissed you should

> say! When I talked to Dr. K nurse and expressed my concerns..she said very

> smart ass....Well u can’t keep casting forever!!!! OK! I kinda freaked

> on her! I said that I was deeply worried that Sierra may start regressing

> back in the brace & she said well you are gonna always have that worry...I

> was like do u have children??? She said “NOâ€...well enough said right!

> I asked Dr. k when he mentioned the brace what if Sierra bounced back into

> the 20 degrees or so...since we gonna be X-raying every 4-6 months...He

> said well, we will just CAST again....I’m like WTHE!!!! I have this GUT

> feeling just like when I discovered her curve at 9 mo.s old. I want to

> keep casting and c if we can get more correction!!! I am scheduling a

> conference call with Dr. K, Myself & my husband. I feel we r being bullied

> into a brace & I do NOT like it at all! We have came a very LONG way to

> end up going backwards! We can handle the cast we been doing in since she

> was 12 mo. old!!! Just upset & very frustrated!!!

> Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO

> in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a

> 3-4 degree margin of error!!!! Whatever!!!

> From: candice_welch85@...

> Sent: Friday, September 09, 2011 11:05 AM

> infantile scoliosis treatment

> Subject: Re: Re: Cast 3

>

>

>

> tame,

> if I was you I would also like to cast atleast till he is 5 because of the

> overgrowth syndrome. he is your son you should be able to choose what

> treatment you want.

>

>

>

> On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

>

>

>

> Hi,

> I'm in a spit fire mood tonight so watch out:) I wonder what on Gods

> green earth is wrong with my doctor. If I could choke him I might. My

> son has a syndrome and scoliosis. I want to keep him in cast (he's in

> his 4th and is 4.5 yrs) but my doc wants to mold him for a brace the

> next time we go in which is oct 6. I'm sooooooooo upset. He seems to

> think my child should lead a normal life and be braced since casting

> won't cure him. I know it won't cure him, but I want to buy him time.

> Why do other docs get into the buy time thing but mine doesn't? He

> started w s curve in mid to high 40's and is now at 26/25. This is

> progress to me. I hope your children have the opportunity to buy time

> they need. I just don't understand this whole medical process sometimes

> and WHY it has to be so complicated. I am venting since I'm mad tonight,

> but really I want you to know as crazy as it seems you are lucky your

> doc is into buying time. Dunno if either of you have done bracing, but

> our fam prefers casting over bracing. I'm in the process of writing a

> letter to our doc trying to convince him to continue w Mehta. Without a

> cast I feel like my son will get the shaft to put it bluntly. He has a

> overgrowth syndrome and will grow faster than normal until his 5th yr of

> life. If we can't manage his scoliosis within that time frame..... We

> loose. I am glad your docs agree with casts to buy time. I'm sorry your

> children may not be completely cured. I guess I just want you to know

> all is not lost. You still have options and in my opinion buying time is

> a good thing. Please don't doubt that even for a minute.

> Tame

>

> Sent from my iPhone

>

> On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

>

>

> Thanks . Our ortho said the same today. Try to put off surgery as

> long as we can.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

>

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

>

> From: " audreymdawson " <audreymdawson@...>

> Sender: infantile scoliosis treatment

> Date: Thu, 08 Sep 2011 17:04:19 -0000

> <infantile scoliosis treatment >

> Replyinfantile scoliosis treatment

> Subject: Re: Cast 3

>

>

> Keeley,

> My daughter's curve started at 58 degrees and has remained essentially

> unchanged in 6 casts and one brace. She does have other congenital

> problems, so that may be the cause. We know that she will have to have

> surgery eventually, but we will continue to cast and brace her for as

> long as possible so that she can grow. Every orthopedic doctor we've

> consulted has said put off surgery until it's absolutely necessary. I

> will admit having Audrey in a cast frustrating when I know it's not

> correcting her, but I have to think of the alternative...

>

> mom to Audrey, casts and brace from SLC

>

>

> >

> > Is it normal for the curve to be unchanged from cast to cast?

> was at 90 in the first cast. They took him to 45 on cast. Then out

> of cast for two months it went back to 90. Then in cast 2 they took

> it to 50. When he was xrayed yesterday it was still at 90. Then

> today they corrected to 50 again.

> > They also said that the rotation has increased a bit. Is this

> common?

> >

> > Just not sure if the casting is going to give us the results? Or is

> surgery in our near future? Any thoughts? Opinions and comments

> welcome.

> >

> > Those who have had the surgery how did your children adapt? Are they

> in pain? How old were they when they had surgery? Was it the VEPTR

> or the growing rods? Sorry for so many questions.

> > Keeley

> > Sent from my BlackBerry® wireless handheld

> >

>

>

>

>

[Guest guest]

I think you're spot on w/ your plan Tame.

HRH

> Last but not least I forgot my game plan. Since the docs suddenly worried

> about the number of times Ben has to be sedated I want to move cast dates

> from 8 to 10 weeks (even tho the first cast was that long due to a

> scheduling glitch and his cast was waaaay tight) and do xrays every other

> cast. That will minimize drugs in his system as well as radiation. If I

> have to tatoo it on my forehead that I don't expect a cure I will. I'm a

> realistic person. I know what's on the table. I understand it. I'm not in

> a dreamworld. The reality is if you take my baby out of a cast at this

> moment he will most likely have surgery by 8. I don't want that. If we

> need surgery then I prefer 12 at earliest. We only have one more shot at

> this. If we can keep him in cast and in the low 20's I think we stand a

> chance. I will also offer the idea of molding for a brace in may (which

> means he will be in a cast for total of 16 m. Bracing 6 wks later(he grows

> so damn fast our braces

> never lasted long-and waiting 8 weeks for a brace is silly) wear a brace

> till september and xray (that's 3 mo) and if there is ANY sign of

> regression we go back to a cast. I'm off for the summer so can work w Ben

> to build core strength. I think it's a fair and reasonable

> plan/compromise...... The question is, will he? And what if he says no?

> T

>

> Sent from my iPhone

>

> On Sep 9, 2011, at 12:06 PM, " Kristi " <kristij@...> wrote:

>

>

>

> Hey Tame! I am having a major issue with cast vs. brace also! We use Dr.

> K in B’ham Alabama at Children’s hospital! Sierra started casting in

> April of 2010 with a 34 degree curve that I noticed NOT her Ped. and

> contacted , ISOP and was into see Dr. K with in a week! He

> determined Sierra indeed have Idiopathic Progressive Infantile Scoliosis.

> Sierra was born full term perfectly healthy/normal at 8 lbs. and 3 oz. So

> this hit me like a ton of bricks! Anyway, Sierra just received her 8th

> cast on Sept. 2nd 2011! She was 16 degrees out of cast and ZERO in cast.

> Sierra is 2 1/2 yrs. old!

> In March Sierra was 19 degrees out of cast and 12 degrees in cast!!!! They

> had to cast her twice that day and messed up the cast and I knew it..it

> was just NOT right. We should have went back & had it redone before

> waiting untill 12 weeks in June!

> In June she was only 17 degrees out of cast...she had a major growth spurt

> & with that jacked up cast on we did not get much out of cast correction,

> BUT Dr. K got her down to ZERO or even negative 1 or 2 degrees and flat

> out told me that he felt sure he could get Sierra down to ZERO or atleast

> single digits out of cast!!! I have it written down and remember

> everything he says like that!!!! Well, In Sept. we go in and Sierra is 16

> degrees out of cast, but again he got her down to ZERO or negative a few

> degrees!!!! Very little correction out of cast! UGH!!! Sierra is skinny

> pheno type & he says her spine is super stiff! Dr. K all of sudden says we

> have missed the major growth spurts before age 2 yrs. & now that she is 2

> 1/2 we should just go to a nite time PROVIDENCE BRACE on Nov. 14th! He

> wants us to bring her in remove 8th cast & immediately have her fitted for

> the Providence Brace...the thing is he does not want her spine to relax a

> bit...BUT we have to

> wait 3-4 days to get the brace back!!! What then???? Sierra will be out

> of cast/brace for several days!!!! I say it is bull shit and I am getting

> more concerned my the minute or pissed you should say! When I talked to

> Dr. K nurse and expressed my concerns..she said very smart ass....Well u

> can’t keep casting forever!!!! OK! I kinda freaked on her! I said that

> I was deeply worried that Sierra may start regressing back in the brace &

> she said well you are gonna always have that worry...I was like do u have

> children??? She said “NOâ€...well enough said right! I asked Dr. k

> when he mentioned the brace what if Sierra bounced back into the 20

> degrees or so...since we gonna be X-raying every 4-6 months...He said

> well, we will just CAST again....I’m like WTHE!!!! I have this GUT

> feeling just like when I discovered her curve at 9 mo.s old. I want to

> keep casting and c if we can get more correction!!! I am scheduling a

> conference call with Dr. K, Myself &

> my husband. I feel we r being bullied into a brace & I do NOT like it at

> all! We have came a very LONG way to end up going backwards! We can

> handle the cast we been doing in since she was 12 mo. old!!! Just upset &

> very frustrated!!!

> Thanks! Kristi Mommy to Sierra 34 degrees. 2 1/2 yrs. old and down to ZERO

> in 7th & 8TH cast...BUT in Teens OUT of cast...plus DR. k says you have a

> 3-4 degree margin of error!!!! Whatever!!!

> From: candice_welch85@...

> Sent: Friday, September 09, 2011 11:05 AM

> infantile scoliosis treatment

> Subject: Re: Re: Cast 3

>

> tame,

> if I was you I would also like to cast atleast till he is 5 because of the

> overgrowth syndrome. he is your son you should be able to choose what

> treatment you want.

>

>

>

> On 2011-09-08, at 6:14 PM, Tame Olson <dazies2001@...> wrote:

>

>

> Hi,

> I'm in a spit fire mood tonight so watch out:) I wonder what on Gods green

> earth is wrong with my doctor. If I could choke him I might. My son has a

> syndrome and scoliosis. I want to keep him in cast (he's in his 4th and is

> 4.5 yrs) but my doc wants to mold him for a brace the next time we go in

> which is oct 6. I'm sooooooooo upset. He seems to think my child should

> lead a normal life and be braced since casting won't cure him. I know it

> won't cure him, but I want to buy him time. Why do other docs get into the

> buy time thing but mine doesn't? He started w s curve in mid to high 40's

> and is now at 26/25. This is progress to me. I hope your children have

> the opportunity to buy time they need. I just don't understand this whole

> medical process sometimes and WHY it has to be so complicated. I am

> venting since I'm mad tonight, but really I want you to know as crazy as

> it seems you are lucky your doc is into buying time. Dunno if either of

> you have done

> bracing, but our fam prefers casting over bracing. I'm in the process of

> writing a letter to our doc trying to convince him to continue w Mehta.

> Without a cast I feel like my son will get the shaft to put it bluntly.

> He has a overgrowth syndrome and will grow faster than normal until his

> 5th yr of life. If we can't manage his scoliosis within that time

> frame..... We loose. I am glad your docs agree with casts to buy time.

> I'm sorry your children may not be completely cured. I guess I just want

> you to know all is not lost. You still have options and in my opinion

> buying time is a good thing. Please don't doubt that even for a minute.

> Tame

>

> Sent from my iPhone

>

> On Sep 8, 2011, at 12:50 PM, kfaul@... wrote:

>

> Thanks . Our ortho said the same today. Try to put off surgery as

> long as we can.

> Keeley

> Sent from my BlackBerry® wireless handheld

>

> From: " audreymdawson " <audreymdawson@...>

> Sender: infantile scoliosis treatment

> Date: Thu, 08 Sep 2011 17:04:19 -0000

> <infantile scoliosis treatment >

> Replyinfantile scoliosis treatment

> Subject: Re: Cast 3

>

>

> Keeley,

> My daughter's curve started at 58 degrees and has remained essentially

> unchanged in 6 casts and one brace. She does have other congenital

> problems, so that may be the cause. We know that she will have to have

> surgery eventually, but we will continue to cast and brace her for as long

> as possible so that she can grow. Every orthopedic doctor we've consulted

> has said put off surgery until it's absolutely necessary. I will admit

> having Audrey in a cast frustrating when I know it's not correcting her,

> but I have to think of the alternative...

>

> mom to Audrey, casts and brace from SLC

>

>

>>

>> Is it normal for the curve to be unchanged from cast to cast? was

>> at 90 in the first cast. They took him to 45 on cast. Then out of cast

>> for two months it went back to 90. Then in cast 2 they took it to 50.

>> When he was xrayed yesterday it was still at 90. Then today they

>> corrected to 50 again.

>> They also said that the rotation has increased a bit. Is this common?

>>

>> Just not sure if the casting is going to give us the results? Or is

>> surgery in our near future? Any thoughts? Opinions and comments welcome.

>>

>> Those who have had the surgery how did your children adapt? Are they in

>> pain? How old were they when they had surgery? Was it the VEPTR or the

>> growing rods? Sorry for so many questions.

>> Keeley

>> Sent from my BlackBerry® wireless handheld

>>

>

>

>

>

>

>

>