RE: Re: New to group-sorta

[Guest guest]

Not all Shriners have Mehta trained docs..... We were referred over and over to 2 docs in NYC who did not do anything like our Mehta doc in Rochester NY. A Cotrel cast and casting table is not like the Mehta method and AMIL frame, which are specifically designed to help derotate the spine, correct the assymetry in the ribcage and straighten the spine itself. Other types of casts can cause damage to the chest wall and don't address all aspects of EDF. The Mehta method is meant to be a a long gentle process, but well worth it. You can send your daughter's medical info to a mehta doc for an evaluation before you go and they will call you with their recommendations free of charge..... It's definately worth the second opinion. Please keep me posted, Steph

Subject: Re: New to group-sortaTo: infantile_scoliosis Date: Sunday, May 17, 2009, 4:39 PM

We are at Miami Children's Hospital. Should I mention the dr's name? I thought that was a no-no. She went from 77-34 in the first two weeks of the cast. After that, for the next 10 weeks there was no improvement. He said a third cast would be "overkill." He told us after seeing that one week out of the cast she went from 34-66 that obviously she wasn't his typical toddler case and that more casting would be necessary. So we are on a casting indefinitely (no timetable) to keep her as straight as possible. The brace was useless for her. I don't know anything about EDF or Metha casting but hers is a Cotrel cast. Does that mean anything to anyone out there?I have been looking for another pedi ortho down here but everyone, i mean everyone, refers me to this guy.I will look into the Shriners in Greenville too. I thought there was a Shriner's in Tampa? Gotta look into it more.Thanks!Oh and I will post pictures soon

so you all can see her.> > > From: Take a guess? <angie815@.. .>> Subject: [infantile_scoliosi s] New to group-sorta> To: infantile_scoliosis @yahoogroups. com> Date: Sunday, May 17, 2009, 11:13 AM> > > > > > > > > Hi

all,> > I have been a "member" of this group for a little bit now - maybe a month or so. I have been in and out but haven't had a chance to post our story. So here goes:> > Isabel is currently 29 months (tomorrow ) We noticed her back was curving around 3 months. Her pedi hadn't noticed it. When we noticed it he referred us to a ped. ortho. at Miami Children's Hospital. This was at about 6 months. He told us to basically "wait and see." That as she starts being more mobile, the muscles in her back could cause her spine to straighten out. I was looking for a more proactive approach but my husband wasn't. He wanted to avoid anything if possible. I understood his logic and let it go. PLUS, everytime we mentioned she had scoliosis to someone, they recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we took his word and

waited and waited. We had appointments every 3-6 months. This past December (08) she turned 2. On her bday we took her for an appt. Her back had progressed from ~30something to late 60s in 6 months! So he> (the ortho) then suggested casting. He didn't explain anything as to how the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't ask everything I wanted to. Anyway, they casted her 2/2/08 with her first cast. Her back was at 77 degrees then. Noone ever mentioned to me that her organs could be compromised or any consequence of her scoliosis. I was severely depressed to see her suffering so much after the first cast. She couldn't walk and was just miserable. But we took her to her weekly PT and they helped with her balance. I am severely disappointed in the information the doctors failed to give. So, she was in her first cast for 6 weeks. They knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks after the

first cast. They removed the cast 4/28 and the ortho told us that 34 degrees was as good as it was going to get and that we would maintain it with a brace. He even had them expedite her brace and we had her> Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she knew it could come on and off. BUT we did get to put out the little pool and she had a blast. She had a super hard time learning how to walk again (without the cast) and seemed super uncomfortable in her own skin. Then we went to see the ortho again on the following Tuesday 5/5 and her back had gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she seems so much happier IN the cast then out of it. She does anything any other rambunctious toddler does, including touching her toes! A week later her back was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees, appt next tuesday again, still not thrilled but hoping to avoid surgery.

The dr seems to think that regardless we will have back surgery when she is 8-10 yrs old. I am relying on the little bit of faith I've got left to hope she won't. > > I am super glad to have found this group.> > ~Angie>

[Guest guest]

Hey,

I check into the Tampa Shriners and they do not have the Mehta casting. The Shriners in greenville Sc does. If that helps at all.

amy~

To: infantile_scoliosis Sent: Sunday, May 17, 2009 12:53:00 PMSubject: Re: Re: New to group-sorta

Not all Shriners have Mehta trained docs..... We were referred over and over to 2 docs in NYC who did not do anything like our Mehta doc in Rochester NY. A Cotrel cast and casting table is not like the Mehta method and AMIL frame, which are specifically designed to help derotate the spine, correct the assymetry in the ribcage and straighten the spine itself. Other types of casts can cause damage to the chest wall and don't address all aspects of EDF. The Mehta method is meant to be a a long gentle process, but well worth it. You can send your daughter's medical info to a mehta doc for an evaluation before you go and they will call you with their recommendations free of charge..... It's definately worth the second opinion. Please keep me posted, Steph

From: Take a guess? <angie815yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: New to group-sortaTo: infantile_scoliosis @yahoogroups. comDate: Sunday, May 17, 2009, 4:39 PM

We are at Miami Children's Hospital. Should I mention the dr's name? I thought that was a no-no. She went from 77-34 in the first two weeks of the cast. After that, for the next 10 weeks there was no improvement. He said a third cast would be "overkill." He told us after seeing that one week out of the cast she went from 34-66 that obviously she wasn't his typical toddler case and that more casting would be necessary. So we are on a casting indefinitely (no timetable) to keep her as straight as possible. The brace was useless for her. I don't know anything about EDF or Metha casting but hers is a Cotrel cast. Does that mean anything to anyone out there?I have been looking for another pedi ortho down here but everyone, i mean everyone, refers me to this guy.I will look into the Shriners in Greenville too. I thought there was a Shriner's in Tampa? Gotta look into it more.Thanks!Oh and I will post pictures soon

so you all can see her.> > > From: Take a guess? <angie815@.. .>> Subject: [infantile_scoliosi s] New to group-sorta> To: infantile_scoliosis @yahoogroups. com> Date: Sunday, May 17, 2009, 11:13 AM> > > > > > > > > Hi all,> > I have been a "member" of this group for a little bit now - maybe a month or so. I have been

in and out but haven't had a chance to post our story. So here goes:> > Isabel is currently 29 months (tomorrow ) We noticed her back was curving around 3 months. Her pedi hadn't noticed it. When we noticed it he referred us to a ped. ortho. at Miami Children's Hospital. This was at about 6 months. He told us to basically "wait and see." That as she starts being more mobile, the muscles in her back could cause her spine to straighten out. I was looking for a more proactive approach but my husband wasn't. He wanted to avoid anything if possible. I understood his logic and let it go. PLUS, everytime we mentioned she had scoliosis to someone, they recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we took his word and waited and waited. We had appointments every 3-6 months. This past December (08) she turned 2. On her bday we took her

for an appt. Her back had progressed from ~30something to late 60s in 6 months! So he> (the ortho) then suggested casting. He didn't explain anything as to how the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't ask everything I wanted to. Anyway, they casted her 2/2/08 with her first cast. Her back was at 77 degrees then. Noone ever mentioned to me that her organs could be compromised or any consequence of her scoliosis. I was severely depressed to see her suffering so much after the first cast. She couldn't walk and was just miserable. But we took her to her weekly PT and they helped with her balance. I am severely disappointed in the information the doctors failed to give. So, she was in her first cast for 6 weeks. They knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks after the first cast. They removed the cast 4/28 and the ortho told us that 34 degrees was as good as it was going to get and

that we would maintain it with a brace. He even had them expedite her brace and we had her> Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she knew it could come on and off. BUT we did get to put out the little pool and she had a blast. She had a super hard time learning how to walk again (without the cast) and seemed super uncomfortable in her own skin. Then we went to see the ortho again on the following Tuesday 5/5 and her back had gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she seems so much happier IN the cast then out of it. She does anything any other rambunctious toddler does, including touching her toes! A week later her back was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees, appt next tuesday again, still not thrilled but hoping to avoid surgery. The dr seems to think that regardless we will have back surgery when she is 8-10 yrs old. I am relying on the little

bit of faith I've got left to hope she won't. > > I am super glad to have found this group.> > ~Angie>

[Guest guest]

Cotrel is the name of one of the ortho

surgeons in France that developed EDF casting for juveniles/adolescents with

scoliosis. The goal being to correct or at least maintain the curves of

older children/adults. EDF casting is an improvement to the Risser

technique, as it has the ability to correct/maintain lordosis. The Risser

technique does not have this ability. EDF was not developed

by Mehta. Mehta discovered that by applying EDF jackets early, the spine

could be channeled to grow straight by harnessing the childs rapid rate of

growth. She also found it necessary to modify the EDF cast to properly

fit the body of an infant, which is quite different from that of an adolescent or

juvenile.

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Kauffunger

Sent: Sunday, May 17, 2009 10:53

AM

To: infantile_scoliosis

Subject: Re:

Re: New to group-sorta

Not all Shriners have Mehta trained docs.....

We were referred over and over to 2 docs in NYC who did not do anything like

our Mehta doc in Rochester NY. A Cotrel cast and casting table is not

like the Mehta method and AMIL frame, which are specifically designed to help

derotate the spine, correct the assymetry in the ribcage and straighten the

spine itself. Other types of casts can cause damage to the chest wall

and don't address all aspects of EDF. The Mehta method is meant to be a

a long gentle process, but well worth it. You can send your daughter's

medical info to a mehta doc for an evaluation before you go and they will

call you with their recommendations free of charge..... It's definately

worth the second opinion. Please keep me posted, Steph

From: Take a guess? <angie815>

Subject: Re: New to group-sorta

To: infantile_scoliosis

Date: Sunday, May 17, 2009, 4:39 PM

We are at Miami

Children's Hospital. Should I mention the dr's name? I thought that was a

no-no.

She went from 77-34 in the first two weeks of the cast. After that, for the

next 10 weeks there was no improvement. He said a third cast would be

" overkill. " He told us after seeing that one week out of the cast

she went from 34-66 that obviously she wasn't his typical toddler case and

that more casting would be necessary. So we are on a casting indefinitely (no

timetable) to keep her as straight as possible. The brace was useless for

her. I don't know anything about EDF or Metha casting but hers is a Cotrel

cast. Does that mean anything to anyone out there?

I have been looking for another pedi ortho down here but everyone, i mean

everyone, refers me to this guy.

I will look into the Shriners in Greenville too. I thought there was a

Shriner's in Tampa? Gotta look into it more.

Thanks!

Oh and I will post pictures soon so you all can see her.

>

>

> From: Take a guess? <angie815@.. .>

> Subject: [infantile_scoliosi s] New to group-sorta

> To: infantile_scoliosis

@yahoogroups. com

> Date: Sunday, May 17, 2009, 11:13 AM

>

>

>

>

>

>

>

>

> Hi all,

>

> I have been a " member " of this group for a little bit now -

maybe a month or so. I have been in and out but haven't had a chance to post

our story. So here goes:

>

> Isabel is currently 29 months (tomorrow ) We noticed her back was

curving around 3 months. Her pedi hadn't noticed it. When we noticed it he

referred us to a ped. ortho. at Miami Children's Hospital. This was at about

6 months. He told us to basically " wait and see. " That as she

starts being more mobile, the muscles in her back could cause her spine to

straighten out. I was looking for a more proactive approach but my husband

wasn't. He wanted to avoid anything if possible. I understood his logic and

let it go. PLUS, everytime we mentioned she had scoliosis to someone, they

recommended this guy. This guy is supposedly the BEST of the BEST in Florida. Someone (an adult Ortho) even said he was among the best two in the nation. So we

took his word and waited and waited. We had appointments every 3-6 months.

This past December (08) she turned 2. On her bday we took her for an appt.

Her back had progressed from ~30something to late 60s in 6 months! So he

> (the ortho) then suggested casting. He didn't explain anything as to how

the cast would be and I wasn't there (had a newborn 12/2 at home) so I didn't

ask everything I wanted to. Anyway, they casted her 2/2/08 with her first

cast. Her back was at 77 degrees then. Noone ever mentioned to me that her

organs could be compromised or any consequence of her scoliosis. I was

severely depressed to see her suffering so much after the first cast. She

couldn't walk and was just miserable. But we took her to her weekly PT and

they helped with her balance. I am severely disappointed in the information

the doctors failed to give. So, she was in her first cast for 6 weeks. They

knocked her out 3/18 and replaced it. Her back was at 34 degrees 2 weeks

after the first cast. They removed the cast 4/28 and the ortho told us that

34 degrees was as good as it was going to get and that we would maintain it

with a brace. He even had them expedite her brace and we had her

> Milwaukee brace by 5/1 (Friday). She hated hated hated the brace bc she

knew it could come on and off. BUT we did get to put out the little pool and

she had a blast. She had a super hard time learning how to walk again

(without the cast) and seemed super uncomfortable in her own skin. Then we

went to see the ortho again on the following Tuesday 5/5 and her back had

gone from 34 to 66!!!!! In a week!!! So her third cast was put on 5/6 and she

seems so much happier IN the cast then out of it. She does anything any other

rambunctious toddler does, including touching her toes! A week later her back

was back at 27 degrees in the cast. So here we are...3rd cast, 27 degrees,

appt next tuesday again, still not thrilled but hoping to avoid surgery. The

dr seems to think that regardless we will have back surgery when she is 8-10

yrs old. I am relying on the little bit of faith I've got left to hope she

won't.

>

> I am super glad to have found this group.

>

> ~Angie

>