Re: How to expedite treatment for our daugher?

[Guest guest]

o,

I so hear you that sounds very much like our journey w/ the local doc.

Same story with the EDF windows & table with the straps. We made the same

choice as you to travel. I was also scared for time. We did the same,

over nighted all medical info we could find on Levi (MRI, X rays, & dr.

notes) It took a few weeks for the doc to accept Levi as a patient. Be

persistent but polite! I would be told " you should hear from us by Wed " &

such. Wed would come & go & I'd call first thing Thurs. morning. It went

on like this for more then 2 weeks. Keep calling & calling! We lucked out

SLC Shriner's plan for us was to have the Doc evaluate Levi based on the

records we sent & have him casted on our 1st trip. We were told 2 - 3

mos. but we asked to be put on a wait list for any cancellation. (we

would literally have flown out at a moments notice if that's what it took)

Luck was on our side we got an appointment for 3 weeks away due to someone

else cancelling. Best advise I received is to be " politely Pushy " !

Another thought is that perhaps you might send your daughters info to all

of the institutions you are considering & see who gets you in first? If

its just mailing documents what can it hurt? (just be polite & don't burn

bridges in case down the road you want to change doctors)

> Hi All,

>

> We went to see the Doctor A. in Miami yesterday. Although he had

> experience with EDF casting, he does not follow the Mehta process to the

> letter. He was extremely nice, provided an hour of explanation on the

> process, but I was concerned with what I've heard.

>

> My main concern was that they only do 3 sessions of casting for 6 weeks

> each and then they move all patients to bracing. Also, he cuts the

> windows a little different than the Mehta process. He does not have an EDF

> table and currently use a table that was modified (with straps) to do the

> same manipulation as is done with EDF frame.

>

> We decided to search treatment elsewhere on the recommended places. I

> started by calling Greenville, SC this morning to get an appointment.

>

> I asked for Vickie (person someone mentioned on the board) and they

> transferred me to . I faxed an application with all my information,

> called her back and talked to her.

>

> I tried to explain the urgency to start treatment with casting and asked

> if would be possible to have an appointment to see the Doctor followed by

> a possible casting (at this point it is clear that it is needed). My hope

> was to expedite this process and possibly reduce the number of trips to

> Greenville, SC.

>

> She stated that it was not a possibility. I would have to go with my

> daughter to see the Doctor and only after schedule casting (if the doctor

> ordered it). She did not give me a date but suggested that it would not

> be in December. She also told me she would call me once she had an

> appointment for my daugher.

>

> I volunteered to be sending my daughter's x-rays and pictures by FedEx

> overnight.

>

> I am really sad because I would like to have properly casted by

> no later than mid-January

>

> Anything I can do to expedite the process? Is there any other treatment

> center in US where things can move quicker?

>

> To us, it does not make a difference if we are traveling to Greenville,

> Chicago, Philadelphia or Rochester. At this point, I just want to find a

> place where we can quickly see the doctor that treats with Mehta and start

> the treatment a.s.a.p. I don't want to wait another 2 months before having

> in cast My understand is that at her age, her situation can

> worsen in a 8 weeks timeframe.

>

>

> Thanks in advance for any help,

>

> Perdigao

>

>

>

>

>

[Guest guest]

,

I don’t have a suggestion to

expedite things, but I can tell you that your concern and desire to move as

quickly as possible mirrors my own experience with my daughter. She was

diagnosed in April 2010, MRI delayed several weeks due to an upper respiratory

infection, but then we were able to get her casted the first week of June.

Our situation may have moved faster than what others experienced just due to

fortunate timing. However my daughter was 29 months old when first casted.

Her rib hump had been obvious for an entire year or more and went undiagnosed

due to another condition. Basically, the specialist for the other

condition didn’t need to see her anymore (thank goodness for that!), and

nobody else that saw her (pediatrician or physical therapist or us, her

parents) recognized it for what it was. The delay of 12 months (my guess

in how much earlier we could have started her casting) cost her the chance of

getting to 0 degrees. Instead, she may end up between 20-30 for the rest

of her life. That said, the casting dr feels that it is a good goal, and

we agree. I had to let go of my anger at the fact that nobody else

recognized it, and made it my goal to educate everyone I could.

That said, keep pushing gently but persistently

to have your daughter seen and treated! But don’t despair over a

couple months. We balance on a tightrope as parents…

Sherry

How

to expedite treatment for our daugher?

Hi All,

We went to see the Doctor A. in Miami yesterday. Although he had experience

with EDF casting, he does not follow the Mehta process to the letter. He was

extremely nice, provided an hour of explanation on the process, but I was

concerned with what I've heard.

My main concern was that they only do 3 sessions of casting for 6 weeks each

and then they move all patients to bracing. Also, he cuts the windows a little

different than the Mehta process. He does not have an EDF table and currently

use a table that was modified (with straps) to do the same manipulation as is

done with EDF frame.

We decided to search treatment elsewhere on the recommended places. I started

by calling Greenville, SC this morning to get an appointment.

I asked for Vickie (person someone mentioned on the board) and they transferred

me to . I faxed an application with all my information, called her back and

talked to her.

I tried to explain the urgency to start treatment with casting and asked if

would be possible to have an appointment to see the Doctor followed by a

possible casting (at this point it is clear that it is needed). My hope was to

expedite this process and possibly reduce the number of trips to Greenville,

SC.

She stated that it was not a possibility. I would have to go with my daughter

to see the Doctor and only after schedule casting (if the doctor ordered it).

She did not give me a date but suggested that it would not be in December. She

also told me she would call me once she had an appointment for my daugher.

I volunteered to be sending my daughter's x-rays and pictures by FedEx

overnight.

I am really sad because I would like to have properly casted by no

later than mid-January

Anything I can do to expedite the process? Is there any other treatment center

in US where things can move quicker?

To us, it does not make a difference if we are traveling to Greenville,

Chicago, Philadelphia or Rochester. At this point, I just want to find a place

where we can quickly see the doctor that treats with Mehta and start the

treatment a.s.a.p. I don't want to wait another 2 months before having

in cast My understand is that at her age, her situation can worsen

in a 8 weeks timeframe.

Thanks in advance for any help,

Perdigao

[Guest guest]

We were also able to bypass the 1st visit at SLC, but we did have to ask. We

sent all of our info there - Dr evaluated it and said we were a candidate -

scheduled an appt for consult, but we wanted to expedite things and get started

as quickly as possible - it still took time to get an appt - approx 6 -8 weeks -

even with that we ended up being delayed an additional month because of an ear

infection. We absolutely love/loved SLC - we started at 13 months and after 4

casts and 2 braces we are perfectly straight!

Best of luck - contact Angie at SLC - she will walk you thru the steps - she is

Dr D's scheduling coordinator - totally awesome lady!

Best of Luck!

Cyndy

>

> o,

> I so hear you that sounds very much like our journey w/ the local doc.

> Same story with the EDF windows & table with the straps. We made the same

> choice as you to travel. I was also scared for time. We did the same,

> over nighted all medical info we could find on Levi (MRI, X rays, & dr.

> notes) It took a few weeks for the doc to accept Levi as a patient. Be

> persistent but polite! I would be told " you should hear from us by Wed " &

> such. Wed would come & go & I'd call first thing Thurs. morning. It went

> on like this for more then 2 weeks. Keep calling & calling! We lucked out

> SLC Shriner's plan for us was to have the Doc evaluate Levi based on the

> records we sent & have him casted on our 1st trip. We were told 2 - 3

> mos. but we asked to be put on a wait list for any cancellation. (we

> would literally have flown out at a moments notice if that's what it took)

> Luck was on our side we got an appointment for 3 weeks away due to someone

> else cancelling. Best advise I received is to be " politely Pushy " !

> Another thought is that perhaps you might send your daughters info to all

> of the institutions you are considering & see who gets you in first? If

> its just mailing documents what can it hurt? (just be polite & don't burn

> bridges in case down the road you want to change doctors)

>

> > Hi All,

> >

> > We went to see the Doctor A. in Miami yesterday. Although he had

> > experience with EDF casting, he does not follow the Mehta process to the

> > letter. He was extremely nice, provided an hour of explanation on the

> > process, but I was concerned with what I've heard.

> >

> > My main concern was that they only do 3 sessions of casting for 6 weeks

> > each and then they move all patients to bracing. Also, he cuts the

> > windows a little different than the Mehta process. He does not have an EDF

> > table and currently use a table that was modified (with straps) to do the

> > same manipulation as is done with EDF frame.

> >

> > We decided to search treatment elsewhere on the recommended places. I

> > started by calling Greenville, SC this morning to get an appointment.

> >

> > I asked for Vickie (person someone mentioned on the board) and they

> > transferred me to . I faxed an application with all my information,

> > called her back and talked to her.

> >

> > I tried to explain the urgency to start treatment with casting and asked

> > if would be possible to have an appointment to see the Doctor followed by

> > a possible casting (at this point it is clear that it is needed). My hope

> > was to expedite this process and possibly reduce the number of trips to

> > Greenville, SC.

> >

> > She stated that it was not a possibility. I would have to go with my

> > daughter to see the Doctor and only after schedule casting (if the doctor

> > ordered it). She did not give me a date but suggested that it would not

> > be in December. She also told me she would call me once she had an

> > appointment for my daugher.

> >

> > I volunteered to be sending my daughter's x-rays and pictures by FedEx

> > overnight.

> >

> > I am really sad because I would like to have properly casted by

> > no later than mid-January

> >

> > Anything I can do to expedite the process? Is there any other treatment

> > center in US where things can move quicker?

> >

> > To us, it does not make a difference if we are traveling to Greenville,

> > Chicago, Philadelphia or Rochester. At this point, I just want to find a

> > place where we can quickly see the doctor that treats with Mehta and start

> > the treatment a.s.a.p. I don't want to wait another 2 months before having

> > in cast My understand is that at her age, her situation can

> > worsen in a 8 weeks timeframe.

> >

> >

> > Thanks in advance for any help,

> >

> > Perdigao

> >

> >

> >

> >

> >

>

[Guest guest]

Nice to know what's going on in Miami... Not so nice to hear that they

only do 3 sessions of EDF casting before placing the child into a brace.

Many children need more than 3 casts and every case is different, so this

is def not the Mehta method as she and the docs who have been trained by

her would continue treatment for as long as their young patient needed it.

Thanks again for getting the scoop on Miami. You are on the right track in

going to Greenville.

HRH

Hi All,

>

> We went to see the Doctor A. in Miami yesterday. Although he had

> experience with EDF casting, he does not follow the Mehta process to the

> letter. He was extremely nice, provided an hour of explanation on the

> process, but I was concerned with what I've heard.

>

> My main concern was that they only do 3 sessions of casting for 6 weeks

> each and then they move all patients to bracing. Also, he cuts the

> windows a little different than the Mehta process. He does not have an EDF

> table and currently use a table that was modified (with straps) to do the

> same manipulation as is done with EDF frame.

>

> We decided to search treatment elsewhere on the recommended places. I

> started by calling Greenville, SC this morning to get an appointment.

>

> I asked for Vickie (person someone mentioned on the board) and they

> transferred me to . I faxed an application with all my information,

> called her back and talked to her.

>

> I tried to explain the urgency to start treatment with casting and asked

> if would be possible to have an appointment to see the Doctor followed by

> a possible casting (at this point it is clear that it is needed). My hope

> was to expedite this process and possibly reduce the number of trips to

> Greenville, SC.

>

> She stated that it was not a possibility. I would have to go with my

> daughter to see the Doctor and only after schedule casting (if the doctor

> ordered it). She did not give me a date but suggested that it would not

> be in December. She also told me she would call me once she had an

> appointment for my daugher.

>

> I volunteered to be sending my daughter's x-rays and pictures by FedEx

> overnight.

>

> I am really sad because I would like to have properly casted by

> no later than mid-January

>

> Anything I can do to expedite the process? Is there any other treatment

> center in US where things can move quicker?

>

> To us, it does not make a difference if we are traveling to Greenville,

> Chicago, Philadelphia or Rochester. At this point, I just want to find a

> place where we can quickly see the doctor that treats with Mehta and start

> the treatment a.s.a.p. I don't want to wait another 2 months before having

> in cast My understand is that at her age, her situation can

> worsen in a 8 weeks timeframe.

>

>

> Thanks in advance for any help,

>

> Perdigao

>

>

>

>

>

[Guest guest]

Update:

I followed Amber's suggestions (thanks a lot!) and even though I got screamed at

for applying to multiple places at the same time - it worked

We got an appointment for at Shriners Chicago next week. If all goes

well, she will also have her first cast applied at that same trip. It was a

great relief to find a Mehta center that could start treatment this year. And

the Chicago team has been AWESOME so far. I had no idea that they would be so

helpful.

has done her MRI and although the exams won't be officially read until

next week; a very close Neurologist friend of mine had already looked at it and

stated that there is nothing to worry there.

We are ready for our trip next week. We have never been to Chicago and it will

be a fun family trip!

For now, thanks so much for all the help!

All the best,

>

> o,

> I so hear you that sounds very much like our journey w/ the local doc.

> Same story with the EDF windows & table with the straps. We made the same

> choice as you to travel. I was also scared for time. We did the same,

> over nighted all medical info we could find on Levi (MRI, X rays, & dr.

> notes) It took a few weeks for the doc to accept Levi as a patient. Be

> persistent but polite! I would be told " you should hear from us by Wed " &

> such. Wed would come & go & I'd call first thing Thurs. morning. It went

> on like this for more then 2 weeks. Keep calling & calling! We lucked out

> SLC Shriner's plan for us was to have the Doc evaluate Levi based on the

> records we sent & have him casted on our 1st trip. We were told 2 - 3

> mos. but we asked to be put on a wait list for any cancellation. (we

> would literally have flown out at a moments notice if that's what it took)

> Luck was on our side we got an appointment for 3 weeks away due to someone

> else cancelling. Best advise I received is to be " politely Pushy " !

> Another thought is that perhaps you might send your daughters info to all

> of the institutions you are considering & see who gets you in first? If

> its just mailing documents what can it hurt? (just be polite & don't burn

> bridges in case down the road you want to change doctors)

>

> > Hi All,

> >

> > We went to see the Doctor A. in Miami yesterday. Although he had

> > experience with EDF casting, he does not follow the Mehta process to the

> > letter. He was extremely nice, provided an hour of explanation on the

> > process, but I was concerned with what I've heard.

> >

> > My main concern was that they only do 3 sessions of casting for 6 weeks

> > each and then they move all patients to bracing. Also, he cuts the

> > windows a little different than the Mehta process. He does not have an EDF

> > table and currently use a table that was modified (with straps) to do the

> > same manipulation as is done with EDF frame.

> >

> > We decided to search treatment elsewhere on the recommended places. I

> > started by calling Greenville, SC this morning to get an appointment.

> >

> > I asked for Vickie (person someone mentioned on the board) and they

> > transferred me to . I faxed an application with all my information,

> > called her back and talked to her.

> >

> > I tried to explain the urgency to start treatment with casting and asked

> > if would be possible to have an appointment to see the Doctor followed by

> > a possible casting (at this point it is clear that it is needed). My hope

> > was to expedite this process and possibly reduce the number of trips to

> > Greenville, SC.

> >

> > She stated that it was not a possibility. I would have to go with my

> > daughter to see the Doctor and only after schedule casting (if the doctor

> > ordered it). She did not give me a date but suggested that it would not

> > be in December. She also told me she would call me once she had an

> > appointment for my daugher.

> >

> > I volunteered to be sending my daughter's x-rays and pictures by FedEx

> > overnight.

> >

> > I am really sad because I would like to have properly casted by

> > no later than mid-January

> >

> > Anything I can do to expedite the process? Is there any other treatment

> > center in US where things can move quicker?

> >

> > To us, it does not make a difference if we are traveling to Greenville,

> > Chicago, Philadelphia or Rochester. At this point, I just want to find a

> > place where we can quickly see the doctor that treats with Mehta and start

> > the treatment a.s.a.p. I don't want to wait another 2 months before having

> > in cast My understand is that at her age, her situation can

> > worsen in a 8 weeks timeframe.

> >

> >

> > Thanks in advance for any help,

> >

> > Perdigao

> >

> >

> >

> >

> >

>

[Guest guest]

o,

I'm so glad you got your little one in & found a treatment plan you are

comfortable with! I'm so sorry you got screamed at! Can you tell me

why/who with out naming a direct name? I didn't know that would happen

perhaps my suggestions were a little off... Best of luck with casting!

We are headed to SLC next week also for Levi's second cast. Just a

warning that it is a very long day, but I actually found it better then

the day of the MRI since we were more prepared as to what to expect. Tip

if your little one likes a movie or cartoon bring it! Levi watched Yo

Gabba for like 4 hrs straight, I hate that show, but he was happy.

Amber

mommy to Levi

> Update:

>

> I followed Amber's suggestions (thanks a lot!) and even though I got

> screamed at for applying to multiple places at the same time - it worked

>

>

> We got an appointment for at Shriners Chicago next week. If all

> goes well, she will also have her first cast applied at that same trip. It

> was a great relief to find a Mehta center that could start treatment this

> year. And the Chicago team has been AWESOME so far. I had no idea that

> they would be so helpful.

> has done her MRI and although the exams won't be officially read

> until next week; a very close Neurologist friend of mine had already

> looked at it and stated that there is nothing to worry there.

>

> We are ready for our trip next week. We have never been to Chicago and it

> will be a fun family trip!

> For now, thanks so much for all the help!

>

> All the best,

>

>

>

>

>>

>> o,

>> I so hear you that sounds very much like our journey w/ the local doc.

>> Same story with the EDF windows & table with the straps. We made the

>> same

>> choice as you to travel. I was also scared for time. We did the same,

>> over nighted all medical info we could find on Levi (MRI, X rays, & dr.

>> notes) It took a few weeks for the doc to accept Levi as a patient. Be

>> persistent but polite! I would be told " you should hear from us by Wed "

>> &

>> such. Wed would come & go & I'd call first thing Thurs. morning. It went

>> on like this for more then 2 weeks. Keep calling & calling! We lucked

>> out

>> SLC Shriner's plan for us was to have the Doc evaluate Levi based on the

>> records we sent & have him casted on our 1st trip. We were told 2 - 3

>> mos. but we asked to be put on a wait list for any cancellation. (we

>> would literally have flown out at a moments notice if that's what it

>> took)

>> Luck was on our side we got an appointment for 3 weeks away due to

>> someone

>> else cancelling. Best advise I received is to be " politely Pushy " !

>> Another thought is that perhaps you might send your daughters info to

>> all

>> of the institutions you are considering & see who gets you in first? If

>> its just mailing documents what can it hurt? (just be polite & don't

>> burn

>> bridges in case down the road you want to change doctors)

>>

>> > Hi All,

>> >

>> > We went to see the Doctor A. in Miami yesterday. Although he had

>> > experience with EDF casting, he does not follow the Mehta process to

>> the

>> > letter. He was extremely nice, provided an hour of explanation on the

>> > process, but I was concerned with what I've heard.

>> >

>> > My main concern was that they only do 3 sessions of casting for 6

>> weeks

>> > each and then they move all patients to bracing. Also, he cuts the

>> > windows a little different than the Mehta process. He does not have an

>> EDF

>> > table and currently use a table that was modified (with straps) to do

>> the

>> > same manipulation as is done with EDF frame.

>> >

>> > We decided to search treatment elsewhere on the recommended places. I

>> > started by calling Greenville, SC this morning to get an appointment.

>> >

>> > I asked for Vickie (person someone mentioned on the board) and they

>> > transferred me to . I faxed an application with all my

>> information,

>> > called her back and talked to her.

>> >

>> > I tried to explain the urgency to start treatment with casting and

>> asked

>> > if would be possible to have an appointment to see the Doctor followed

>> by

>> > a possible casting (at this point it is clear that it is needed). My

>> hope

>> > was to expedite this process and possibly reduce the number of trips

>> to

>> > Greenville, SC.

>> >

>> > She stated that it was not a possibility. I would have to go with my

>> > daughter to see the Doctor and only after schedule casting (if the

>> doctor

>> > ordered it). She did not give me a date but suggested that it would

>> not

>> > be in December. She also told me she would call me once she had an

>> > appointment for my daugher.

>> >

>> > I volunteered to be sending my daughter's x-rays and pictures by FedEx

>> > overnight.

>> >

>> > I am really sad because I would like to have properly casted

>> by

>> > no later than mid-January

>> >

>> > Anything I can do to expedite the process? Is there any other

>> treatment

>> > center in US where things can move quicker?

>> >

>> > To us, it does not make a difference if we are traveling to

>> Greenville,

>> > Chicago, Philadelphia or Rochester. At this point, I just want to find

>> a

>> > place where we can quickly see the doctor that treats with Mehta and

>> start

>> > the treatment a.s.a.p. I don't want to wait another 2 months before

>> having

>> > in cast My understand is that at her age, her situation

>> can

>> > worsen in a 8 weeks timeframe.

>> >

>> >

>> > Thanks in advance for any help,

>> >

>> > Perdigao

>> >

>> >

>> >

>> >

>> >

>>

>

>

>

[Guest guest]

Hi Amber,

Don't worry about it It was my fault because I applied to three different

Shriners and they could see in their system that I had more than one application

open. If I had not done it, I would probably not be starting treatment this

year. I quickly apologized, explained that we were desperate to get treatment

sooner than later and canceled the other applications Again, thanks for the

help!

I have loaded my IPad and IPhone with movies and music videos for . I

never thought I would learn kid's songs, but sometimes I catch myself singing

them when driving ... It is unbelievable the amount of times I have to hear them

in a day Thanks for the tip.

Good luck for Levi at SLC!

All the best,

> >>

> >> o,

> >> I so hear you that sounds very much like our journey w/ the local doc.

> >> Same story with the EDF windows & table with the straps. We made the

> >> same

> >> choice as you to travel. I was also scared for time. We did the same,

> >> over nighted all medical info we could find on Levi (MRI, X rays, & dr.

> >> notes) It took a few weeks for the doc to accept Levi as a patient. Be

> >> persistent but polite! I would be told " you should hear from us by Wed "

> >> &

> >> such. Wed would come & go & I'd call first thing Thurs. morning. It went

> >> on like this for more then 2 weeks. Keep calling & calling! We lucked

> >> out

> >> SLC Shriner's plan for us was to have the Doc evaluate Levi based on the

> >> records we sent & have him casted on our 1st trip. We were told 2 - 3

> >> mos. but we asked to be put on a wait list for any cancellation. (we

> >> would literally have flown out at a moments notice if that's what it

> >> took)

> >> Luck was on our side we got an appointment for 3 weeks away due to

> >> someone

> >> else cancelling. Best advise I received is to be " politely Pushy " !

> >> Another thought is that perhaps you might send your daughters info to

> >> all

> >> of the institutions you are considering & see who gets you in first? If

> >> its just mailing documents what can it hurt? (just be polite & don't

> >> burn

> >> bridges in case down the road you want to change doctors)

> >>

> >> > Hi All,

> >> >

> >> > We went to see the Doctor A. in Miami yesterday. Although he had

> >> > experience with EDF casting, he does not follow the Mehta process to

> >> the

> >> > letter. He was extremely nice, provided an hour of explanation on the

> >> > process, but I was concerned with what I've heard.

> >> >

> >> > My main concern was that they only do 3 sessions of casting for 6

> >> weeks

> >> > each and then they move all patients to bracing. Also, he cuts the

> >> > windows a little different than the Mehta process. He does not have an

> >> EDF

> >> > table and currently use a table that was modified (with straps) to do

> >> the

> >> > same manipulation as is done with EDF frame.

> >> >

> >> > We decided to search treatment elsewhere on the recommended places. I

> >> > started by calling Greenville, SC this morning to get an appointment.

> >> >

> >> > I asked for Vickie (person someone mentioned on the board) and they

> >> > transferred me to . I faxed an application with all my

> >> information,

> >> > called her back and talked to her.

> >> >

> >> > I tried to explain the urgency to start treatment with casting and

> >> asked

> >> > if would be possible to have an appointment to see the Doctor followed

> >> by

> >> > a possible casting (at this point it is clear that it is needed). My

> >> hope

> >> > was to expedite this process and possibly reduce the number of trips

> >> to

> >> > Greenville, SC.

> >> >

> >> > She stated that it was not a possibility. I would have to go with my

> >> > daughter to see the Doctor and only after schedule casting (if the

> >> doctor

> >> > ordered it). She did not give me a date but suggested that it would

> >> not

> >> > be in December. She also told me she would call me once she had an

> >> > appointment for my daugher.

> >> >

> >> > I volunteered to be sending my daughter's x-rays and pictures by FedEx

> >> > overnight.

> >> >

> >> > I am really sad because I would like to have properly casted

> >> by

> >> > no later than mid-January

> >> >

> >> > Anything I can do to expedite the process? Is there any other

> >> treatment

> >> > center in US where things can move quicker?

> >> >

> >> > To us, it does not make a difference if we are traveling to

> >> Greenville,

> >> > Chicago, Philadelphia or Rochester. At this point, I just want to find

> >> a

> >> > place where we can quickly see the doctor that treats with Mehta and

> >> start

> >> > the treatment a.s.a.p. I don't want to wait another 2 months before

> >> having

> >> > in cast My understand is that at her age, her situation

> >> can

> >> > worsen in a 8 weeks timeframe.

> >> >

> >> >

> >> > Thanks in advance for any help,

> >> >

> >> > Perdigao

> >> >

> >> >

> >> >

> >> >

> >> >

> >>

> >

> >

> >

>

[Guest guest]

Yay for lil !! Please keep us posted.

HRH

> Update:

>

> I followed Amber's suggestions (thanks a lot!) and even though I got

> screamed at for applying to multiple places at the same time - it worked

>

>

> We got an appointment for at Shriners Chicago next week. If all

> goes well, she will also have her first cast applied at that same trip. It

> was a great relief to find a Mehta center that could start treatment this

> year. And the Chicago team has been AWESOME so far. I had no idea that

> they would be so helpful.

> has done her MRI and although the exams won't be officially read

> until next week; a very close Neurologist friend of mine had already

> looked at it and stated that there is nothing to worry there.

>

> We are ready for our trip next week. We have never been to Chicago and it

> will be a fun family trip!

> For now, thanks so much for all the help!

>

> All the best,

>

>

>

>

>>

>> o,

>> I so hear you that sounds very much like our journey w/ the local doc.

>> Same story with the EDF windows & table with the straps. We made the

>> same

>> choice as you to travel. I was also scared for time. We did the same,

>> over nighted all medical info we could find on Levi (MRI, X rays, & dr.

>> notes) It took a few weeks for the doc to accept Levi as a patient. Be

>> persistent but polite! I would be told " you should hear from us by Wed "

>> &

>> such. Wed would come & go & I'd call first thing Thurs. morning. It went

>> on like this for more then 2 weeks. Keep calling & calling! We lucked

>> out

>> SLC Shriner's plan for us was to have the Doc evaluate Levi based on the

>> records we sent & have him casted on our 1st trip. We were told 2 - 3

>> mos. but we asked to be put on a wait list for any cancellation. (we

>> would literally have flown out at a moments notice if that's what it

>> took)

>> Luck was on our side we got an appointment for 3 weeks away due to

>> someone

>> else cancelling. Best advise I received is to be " politely Pushy " !

>> Another thought is that perhaps you might send your daughters info to

>> all

>> of the institutions you are considering & see who gets you in first? If

>> its just mailing documents what can it hurt? (just be polite & don't

>> burn

>> bridges in case down the road you want to change doctors)

>>

>> > Hi All,

>> >

>> > We went to see the Doctor A. in Miami yesterday. Although he had

>> > experience with EDF casting, he does not follow the Mehta process to

>> the

>> > letter. He was extremely nice, provided an hour of explanation on the

>> > process, but I was concerned with what I've heard.

>> >

>> > My main concern was that they only do 3 sessions of casting for 6

>> weeks

>> > each and then they move all patients to bracing. Also, he cuts the

>> > windows a little different than the Mehta process. He does not have an

>> EDF

>> > table and currently use a table that was modified (with straps) to do

>> the

>> > same manipulation as is done with EDF frame.

>> >

>> > We decided to search treatment elsewhere on the recommended places. I

>> > started by calling Greenville, SC this morning to get an appointment.

>> >

>> > I asked for Vickie (person someone mentioned on the board) and they

>> > transferred me to . I faxed an application with all my

>> information,

>> > called her back and talked to her.

>> >

>> > I tried to explain the urgency to start treatment with casting and

>> asked

>> > if would be possible to have an appointment to see the Doctor followed

>> by

>> > a possible casting (at this point it is clear that it is needed). My

>> hope

>> > was to expedite this process and possibly reduce the number of trips

>> to

>> > Greenville, SC.

>> >

>> > She stated that it was not a possibility. I would have to go with my

>> > daughter to see the Doctor and only after schedule casting (if the

>> doctor

>> > ordered it). She did not give me a date but suggested that it would

>> not

>> > be in December. She also told me she would call me once she had an

>> > appointment for my daugher.

>> >

>> > I volunteered to be sending my daughter's x-rays and pictures by FedEx

>> > overnight.

>> >

>> > I am really sad because I would like to have properly casted

>> by

>> > no later than mid-January

>> >

>> > Anything I can do to expedite the process? Is there any other

>> treatment

>> > center in US where things can move quicker?

>> >

>> > To us, it does not make a difference if we are traveling to

>> Greenville,

>> > Chicago, Philadelphia or Rochester. At this point, I just want to find

>> a

>> > place where we can quickly see the doctor that treats with Mehta and

>> start

>> > the treatment a.s.a.p. I don't want to wait another 2 months before

>> having

>> > in cast My understand is that at her age, her situation

>> can

>> > worsen in a 8 weeks timeframe.

>> >

>> >

>> > Thanks in advance for any help,

>> >

>> > Perdigao

>> >

>> >

>> >

>> >

>> >

>>

>

>

>

[Guest guest]

Sherry we have the same story! Abigail was diagnosed when she was 3, a year

after I started questioning how she was walking. Her GP, physical therapist and

the ortho specialist we saw all said she was fine...missing her scoliosis and

rotation as the cause of her awkward gait(Ortho noted hip rotation in

notes..hmm..would think an x-ray would be in order?) It wasn't until I noticed

the rib hump on her back and asked her GP about it that everything clicked in

placed and we had to live with her missing her chance for a straight spine. I

still harbor anger for the ortho " specialist " who didn't do his job but it is

much less than it used to be..I am thankful we did catch it before it got a

whole lot worse!

>

> ,

>

> I don't have a suggestion to expedite things, but I can tell you that your

> concern and desire to move as quickly as possible mirrors my own experience

> with my daughter. She was diagnosed in April 2010, MRI delayed several

> weeks due to an upper respiratory infection, but then we were able to get

> her casted the first week of June. Our situation may have moved faster than

> what others experienced just due to fortunate timing. However my daughter

> was 29 months old when first casted. Her rib hump had been obvious for an

> entire year or more and went undiagnosed due to another condition.

> Basically, the specialist for the other condition didn't need to see her

> anymore (thank goodness for that!), and nobody else that saw her

> (pediatrician or physical therapist or us, her parents) recognized it for

> what it was. The delay of 12 months (my guess in how much earlier we could

> have started her casting) cost her the chance of getting to 0 degrees.

> Instead, she may end up between 20-30 for the rest of her life. That said,

> the casting dr feels that it is a good goal, and we agree. I had to let go

> of my anger at the fact that nobody else recognized it, and made it my goal

> to educate everyone I could.

>

>

>

> That said, keep pushing gently but persistently to have your daughter seen

> and treated! But don't despair over a couple months. We balance on a

> tightrope as parents.

>

>

>

> Sherry

>

>

>

> How to expedite treatment for our daugher?

>

>

>

>

>

> Hi All,

>

> We went to see the Doctor A. in Miami yesterday. Although he had experience

> with EDF casting, he does not follow the Mehta process to the letter. He was

> extremely nice, provided an hour of explanation on the process, but I was

> concerned with what I've heard.

>

> My main concern was that they only do 3 sessions of casting for 6 weeks each

> and then they move all patients to bracing. Also, he cuts the windows a

> little different than the Mehta process. He does not have an EDF table and

> currently use a table that was modified (with straps) to do the same

> manipulation as is done with EDF frame.

>

> We decided to search treatment elsewhere on the recommended places. I

> started by calling Greenville, SC this morning to get an appointment.

>

> I asked for Vickie (person someone mentioned on the board) and they

> transferred me to . I faxed an application with all my information,

> called her back and talked to her.

>

> I tried to explain the urgency to start treatment with casting and asked if

> would be possible to have an appointment to see the Doctor followed by a

> possible casting (at this point it is clear that it is needed). My hope was

> to expedite this process and possibly reduce the number of trips to

> Greenville, SC.

>

> She stated that it was not a possibility. I would have to go with my

> daughter to see the Doctor and only after schedule casting (if the doctor

> ordered it). She did not give me a date but suggested that it would not be

> in December. She also told me she would call me once she had an appointment

> for my daugher.

>

> I volunteered to be sending my daughter's x-rays and pictures by FedEx

> overnight.

>

> I am really sad because I would like to have properly casted by no

> later than mid-January

>

> Anything I can do to expedite the process? Is there any other treatment

> center in US where things can move quicker?

>

> To us, it does not make a difference if we are traveling to Greenville,

> Chicago, Philadelphia or Rochester. At this point, I just want to find a

> place where we can quickly see the doctor that treats with Mehta and start

> the treatment a.s.a.p. I don't want to wait another 2 months before having

> in cast My understand is that at her age, her situation can

> worsen in a 8 weeks timeframe.

>

> Thanks in advance for any help,

>

> Perdigao

>

[Guest guest]

I didn’t mention it, but Eden had an awkward gait as

well! I kept questioning it, but everything was attributed to her brachial

plexus injury. Looking back, that time period was so overwhelming.

I DID question it, but did I actually verbalize the question to the

doctors? Probably not, since we saw them so few and far between. I

am thankful every single day for my daughter’s physical therapist who

recommended Eden get a baseline xray for scoliosis as she was worried Eden could develop it.

How little did we know that she was already 49 deg! Quite a learning

experience for all of us. It was not the therapist’s job to

recognize or diagnose it, but she is sharp as a whip and only in her mid-20’s.

Sherry

How to expedite treatment for our daugher?

>

>

>

>

>

> Hi All,

>

> We went to see the Doctor A. in Miami yesterday. Although he had

experience

> with EDF casting, he does not follow the Mehta process to the letter. He

was

> extremely nice, provided an hour of explanation on the process, but I was

> concerned with what I've heard.

>

> My main concern was that they only do 3 sessions of casting for 6 weeks

each

> and then they move all patients to bracing. Also, he cuts the windows a

> little different than the Mehta process. He does not have an EDF table and

> currently use a table that was modified (with straps) to do the same

> manipulation as is done with EDF frame.

>

> We decided to search treatment elsewhere on the recommended places. I

> started by calling Greenville, SC this morning to get an appointment.

>

> I asked for Vickie (person someone mentioned on the board) and they

> transferred me to . I faxed an application with all my information,

> called her back and talked to her.

>

> I tried to explain the urgency to start treatment with casting and asked

if

> would be possible to have an appointment to see the Doctor followed by a

> possible casting (at this point it is clear that it is needed). My hope

was

> to expedite this process and possibly reduce the number of trips to

> Greenville, SC.

>

> She stated that it was not a possibility. I would have to go with my

> daughter to see the Doctor and only after schedule casting (if the doctor

> ordered it). She did not give me a date but suggested that it would not be

> in December. She also told me she would call me once she had an

appointment

> for my daugher.

>

> I volunteered to be sending my daughter's x-rays and pictures by FedEx

> overnight.

>

> I am really sad because I would like to have properly casted by

no

> later than mid-January

>

> Anything I can do to expedite the process? Is there any other treatment

> center in US where things can move quicker?

>

> To us, it does not make a difference if we are traveling to Greenville,

> Chicago, Philadelphia or Rochester. At this point, I just want to find a

> place where we can quickly see the doctor that treats with Mehta and start

> the treatment a.s.a.p. I don't want to wait another 2 months before having

> in cast My understand is that at her age, her situation can

> worsen in a 8 weeks timeframe.

>

> Thanks in advance for any help,

>

> Perdigao

>

[Guest guest]

I'm so glad you both mentioned gait. has always been picked on for his funny run...arms and legs flailing to the sides. I asked 3 of the 4 orthos we've seen about it. 2 of them basically blew me off, our current Dr had him run up and down the hallway, bUT said it was nothing to be concerned about. Of course we already knew he had scoliosis at this point. It was our chiropractor who took it upon herself to measure his legs. By her measurements one leg is half an inch shorter. I'm baffled that the Dr never checked this. She said the best way to check is to take xrays and measure from the films. She also can't say if this is cause or effect of his scoliosis. I'm going to ask the ortho at our next appointment in Feb, but was curious if anyone else has run into this? I'd love to think we could put a lift in his shoe and this would all magically resolve! (I can always dream, right!)'s mom, 6 years old, 38* & 29* Sent from my Verizon Wireless 4GLTE Phone How to expedite treatment for our daugher?> > > > > > Hi All,> > We went to see the Doctor A. in Miami yesterday. Although he hadexperience> with EDF casting, he does not follow the Mehta process to the letter. Hewas> extremely nice, provided an hour of explanation on the process, but I was> concerned with what I've heard. > > My main concern was that they only do 3 sessions of casting for 6 weekseach> and then they move all patients to bracing. Also, he cuts the windows a> little different than the Mehta process. He does not have an EDF table and> currently use a table that was modified (with straps) to do the same> manipulation as is done with EDF frame.> > We decided to search treatment elsewhere on the recommended places. I> started by calling Greenville, SC this morning to get an appointment. > > I asked for Vickie (person someone mentioned on the board) and they> transferred me to . I faxed an application with all my information,> called her back and talked to her.> > I tried to explain the urgency to start treatment with casting and askedif> would be possible to have an appointment to see the Doctor followed by a> possible casting (at this point it is clear that it is needed). My hopewas> to expedite this process and possibly reduce the number of trips to> Greenville, SC. > > She stated that it was not a possibility. I would have to go with my> daughter to see the Doctor and only after schedule casting (if the doctor> ordered it). She did not give me a date but suggested that it would not be> in December. She also told me she would call me once she had anappointment> for my daugher. > > I volunteered to be sending my daughter's x-rays and pictures by FedEx> overnight. > > I am really sad because I would like to have properly casted byno> later than mid-January > > Anything I can do to expedite the process? Is there any other treatment> center in US where things can move quicker?> > To us, it does not make a difference if we are traveling to Greenville,> Chicago, Philadelphia or Rochester. At this point, I just want to find a> place where we can quickly see the doctor that treats with Mehta and start> the treatment a.s.a.p. I don't want to wait another 2 months before having> in cast My understand is that at her age, her situation can> worsen in a 8 weeks timeframe.> > Thanks in advance for any help,> > Perdigao>

[Guest guest]

Sherry- you were lucky! My son was in P.T as a baby, and I was so concerned I

asked his physical therapist if she could watch Abigail walk..she did and said

she didn't notice anything too unusual just that her foot turned in a little.

Looking back I think you are right, I am not sure if I adequetly phrased my

concerns to the doctors about her gait, I focused on her feet a lot!

Stacey- that's exactly it! she would swing her leg out to the side when running

I always thought it was because her foot turned in but couldn't quite put my

finger on what was out of place! Our casting doctors measured her legs but

couldn't find a discrepancy..but they didn't use the x-rays. We also took Abby

to a chiropractor who said he did see some difference(looking at her x-rays!)

and recommended getting an orthotic for her shoe. He said he didn't know if it

would help but it couldn't hurt but the guy who makes the orthotics stopped

doing it and I haven't looked for another one..probably should, it actually

slipped my mind with so much else going on. Thanks for the unintentional

reminder!! :-) Abby is very close to your son, she's almost 5 with a 40* and 30*

double curve...best of luck to both of you!

-Ami

Abigail 4.5 40*/30* in 6th cast from Boston

>

> I'm so glad you both mentioned gait. has always been picked on for

> his funny run...arms and legs flailing to the sides. I asked 3 of the 4

> orthos we've seen about it. 2 of them basically blew me off, our current Dr

> had him run up and down the hallway, bUT said it was nothing to be concerned

> about. Of course we already knew he had scoliosis at this point. It was

> our chiropractor who took it upon herself to measure his legs. By her

> measurements one leg is half an inch shorter. I'm baffled that the Dr never

> checked this. She said the best way to check is to take xrays and measure

> from the films. She also can't say if this is cause or effect of his

> scoliosis. I'm going to ask the ortho at our next appointment in Feb, but

> was curious if anyone else has run into this? I'd love to think we could

> put a lift in his shoe and this would all magically resolve! (I can always

> dream, right!)

>

> 's mom, 6 years old, 38* & 29*

> Sent from my Verizon Wireless 4GLTE Phone

>

> Re: How to expedite treatment for our

> daugher?

>

>

>

>

>

>

> Sherry we have the same story! Abigail was diagnosed when she was 3, a year

> after I started questioning how she was walking. Her GP, physical therapist

> and the ortho specialist we saw all said she was fine...missing her

> scoliosis and rotation as the cause of her awkward gait(Ortho noted hip

> rotation in notes..hmm..would think an x-ray would be in order?) It wasn't

> until I noticed the rib hump on her back and asked her GP about it that

> everything

>

[Guest guest]

Hey ! I’m late getting in on the conversation but, we live in Alabama down on The Gulf Coast. I noticed my Daughter Sierra’s curve around 9 mo. (back in Dec. 2009) everyone said I was over reacting and it was just muscle build up on one side..she already had a rib hump! I did not point it out at..her 9 mo. check up to her Ped. which is a friend of the family...plus it was Christmas time and everything was really hectic. I also have another Daughter Summer who is 22 mo. older than Sierra. It really started bothering me the more I felt her spine...as if her spine disappered under her shoulder blade..she does have a high curve to the left. I called her Ped. (Sierra was then 11 mo.) I just knew in my gut that something was not right. We went in to see her Ped. and I pointed out Sierra’s curve...her Ped. was completely rattled and sent us next door to the hospital for X-rays....needles to save my husband and I were freaking out!!! as soon as we got home the phone rang....her Ped. said Sierra has scoliosis...they had Never seen it in an Infant and did not know how to measure her curve! Our Ped. had us set up to see a Ped. Ortho in Mobile Alabama..3 weeks away! I immediately got on the Internet and found ISOP and posted a “help message†& called me within minutes and told me all about Dr. Mehta and that we needed to find a casting Dr. We found Dr. K in Birmingham Alabama at Children’s Hospital. Dr. K had been trained by Dr. Mehta. I called my Ped. and we were in to see Dr. K the following week & he X-rayed Sierra had determined she had a 34 degree curve and rotation and wanted to cast her that very week! We started casting in April 2010. Sierra keeps her cast on 10-12 weeks at a time. We are now on cast #9. Sierra is 9 degrees OUT of cast and –6 degrees IN cast. Sierra has a very stiff spine so it has been a difficult road to get her down to single digits OUT of cast. Dr. K has been willing to keep casting untill we feel ready to go to a brace. Dr. K has the casting table ect. He has a video on You Tube showing the procedure. Sierra will be 3 yrs. in April 2012 and we go back in March 2012 for either 10th cast or go to a brace...depends on her #’s out of cast! Dr. K has all so trained his Partner in Mehta Casting! If you want Information on how to contact Dr. K let me know. I have his direct # and a # for his Nurse. Best Wishes! Kristi....my cell is 251-228-0431

: SR Clancy

Sent: Saturday, December 31, 2011 4:30 PM

infantile scoliosis treatment

Subject: RE: Re: How to expedite treatment for our daugher?

I didn’t mention it, but Eden had an awkward gait as well! I kept questioning it, but everything was attributed to her brachial plexus injury. Looking back, that time period was so overwhelming. I DID question it, but did I actually verbalize the question to the doctors? Probably not, since we saw them so few and far between. I am thankful every single day for my daughter’s physical therapist who recommended Eden get a baseline xray for scoliosis as she was worried Eden could develop it. How little did we know that she was already 49 deg! Quite a learning experience for all of us. It was not the therapist’s job to recognize or diagnose it, but she is sharp as a whip and only in her mid-20’s.

Sherry

How to expedite treatment for our daugher?> > > > > > Hi All,> > We went to see the Doctor A. in Miami yesterday. Although he had experience> with EDF casting, he does not follow the Mehta process to the letter. He was> extremely nice, provided an hour of explanation on the process, but I was> concerned with what I've heard. > > My main concern was that they only do 3 sessions of casting for 6 weeks each> and then they move all patients to bracing. Also, he cuts the windows a> little different than the Mehta process. He does not have an EDF table and> currently use a table that was modified (with straps) to do the same> manipulation as is done with EDF frame.> > We decided to search treatment elsewhere on the recommended places. I> started by calling Greenville, SC this morning to get an appointment. > > I asked for Vickie (person someone mentioned on the board) and they> transferred me to . I faxed an application with all my information,> called her back and talked to her.> > I tried to explain the urgency to start treatment with casting and asked if> would be possible to have an appointment to see the Doctor followed by a> possible casting (at this point it is clear that it is needed). My hope was> to expedite this process and possibly reduce the number of trips to> Greenville, SC. > > She stated that it was not a possibility. I would have to go with my> daughter to see the Doctor and only after schedule casting (if the doctor> ordered it). She did not give me a date but suggested that it would not be> in December. She also told me she would call me once she had an appointment> for my daugher. > > I volunteered to be sending my daughter's x-rays and pictures by FedEx> overnight. > > I am really sad because I would like to have properly casted by no> later than mid-January > > Anything I can do to expedite the process? Is there any other treatment> center in US where things can move quicker?> > To us, it does not make a difference if we are traveling to Greenville,> Chicago, Philadelphia or Rochester. At this point, I just want to find a> place where we can quickly see the doctor that treats with Mehta and start> the treatment a.s.a.p. I don't want to wait another 2 months before having> in cast My understand is that at her age, her situation can> worsen in a 8 weeks timeframe.> > Thanks in advance for any help,> > Perdigao>

[Guest guest]

Hi Kristi, Thank you so much for the offer.  We were lucky and got our daughter seen and casted in Chicago Shriners right before the Christmas.  They were awesome and she is doing great with the cast and we are extremely happy with the results to-date. She completely adjusted to the cast and now acts as if it was not even there. Again, thank you for your kindness in offering help.

 Happy New Year for you and your family! All the best,  On Mon, Jan 2, 2012 at 11:26 AM, Kristi <kristij@...> wrote:

 

Hey !  I’m late getting in on the conversation but, we live in Alabama down on The Gulf Coast.  I noticed my Daughter Sierra’s curve around 9 mo. (back in Dec. 2009) everyone said I was over reacting and it was just muscle build up on one side..she already had a rib hump!  I did not point it out at..her 9 mo. check up to her Ped. which is a friend of the family...plus it was Christmas time and everything was really hectic.  I also have another Daughter Summer who is 22 mo. older than Sierra.  It really started bothering me the more I felt her spine...as if her spine disappered under her shoulder blade..she does have a high curve to the left.  I called her Ped. (Sierra was then 11 mo.) I just knew in my gut that something was not right.  We went in to see her Ped. and I pointed out Sierra’s curve...her Ped. was completely rattled and sent us next door to the hospital for X-rays....needles to save my husband and I were freaking out!!!  as soon as we got home the phone rang....her Ped. said Sierra has scoliosis...they had Never seen it in an Infant and did not know how to measure her curve!  Our Ped. had us set up to see a Ped. Ortho in Mobile Alabama..3 weeks away!  I immediately got on the Internet and found ISOP  and posted a “help message” & called me within minutes and told me all about Dr. Mehta and that we needed to find a casting Dr.  We found Dr. K in Birmingham Alabama at Children’s Hospital.  Dr. K had been trained by Dr. Mehta.  I called my Ped. and we were in to see Dr. K the following week & he X-rayed Sierra had determined she had a 34 degree curve and rotation and wanted to cast her that very week!  We started casting in April 2010.  Sierra keeps her cast on 10-12 weeks at a time.  We are now on cast #9.  Sierra is 9 degrees OUT of cast and –6 degrees IN cast.  Sierra has a very stiff spine so it has been a difficult road to get her down to single digits OUT of cast.  Dr. K has been willing to keep casting untill we feel ready to go to a brace.  Dr. K has the casting table ect.  He has a video on You Tube showing the procedure.  Sierra will be 3 yrs. in April 2012 and we go back in March 2012 for either 10th cast or go to a brace...depends on her #’s out of cast!  Dr. K has all so trained his Partner in Mehta Casting!  If you want Information on how to contact Dr. K let me know.  I have his direct # and a # for his Nurse.  Best Wishes!  Kristi....my cell is 251-228-0431

: SR Clancy

Sent: Saturday, December 31, 2011 4:30 PM

infantile scoliosis treatment

Subject: RE: Re: How to expedite treatment for our daugher?

 

 

I didn’t mention it, but Eden had an awkward gait as well!  I kept questioning it, but everything was attributed to her brachial plexus injury.  Looking back, that time period was so overwhelming.  I DID question it, but did I actually verbalize the question to the doctors?  Probably not, since we saw them so few and far between.  I am thankful every single day for my daughter’s physical therapist who recommended Eden get a baseline xray for scoliosis as she was worried Eden could develop it.  How little did we know that she was already 49 deg!  Quite a learning experience for all of us.  It was not the therapist’s job to recognize or diagnose it, but she is sharp as a whip and only in her mid-20’s.

 

Sherry

 

How to expedite treatment for our daugher?> > > > > > Hi All,> > We went to see the Doctor A. in Miami yesterday. Although he had experience> with EDF casting, he does not follow the Mehta process to the letter. He was> extremely nice, provided an hour of explanation on the process, but I was> concerned with what I've heard. > > My main concern was that they only do 3 sessions of casting for 6 weeks each> and then they move all patients to bracing. Also, he cuts the windows a> little different than the Mehta process. He does not have an EDF table and> currently use a table that was modified (with straps) to do the same> manipulation as is done with EDF frame.> > We decided to search treatment elsewhere on the recommended places. I> started by calling Greenville, SC this morning to get an appointment. > > I asked for Vickie (person someone mentioned on the board) and they> transferred me to . I faxed an application with all my information,> called her back and talked to her.> > I tried to explain the urgency to start treatment with casting and asked if> would be possible to have an appointment to see the Doctor followed by a> possible casting (at this point it is clear that it is needed). My hope was> to expedite this process and possibly reduce the number of trips to> Greenville, SC. > > She stated that it was not a possibility. I would have to go with my> daughter to see the Doctor and only after schedule casting (if the doctor> ordered it). She did not give me a date but suggested that it would not be> in December. She also told me she would call me once she had an appointment> for my daugher. > > I volunteered to be sending my daughter's x-rays and pictures by FedEx> overnight. > > I am really sad because I would like to have properly casted by no> later than mid-January > > Anything I can do to expedite the process? Is there any other treatment> center in US where things can move quicker?> > To us, it does not make a difference if we are traveling to Greenville,> Chicago, Philadelphia or Rochester. At this point, I just want to find a> place where we can quickly see the doctor that treats with Mehta and start> the treatment a.s.a.p. I don't want to wait another 2 months before having> in cast My understand is that at her age, her situation can> worsen in a 8 weeks timeframe.> > Thanks in advance for any help,> > Perdigao>

[Guest guest]

Great News...if you ever have any questions or just want to chat feel free to contact me...like I said we have been doing this for almost 2 yrs. and we pretty much got it down! Best Wishes!

Kristi

From: Perdigao

Sent: Thursday, January 05, 2012 5:01 PM

infantile scoliosis treatment

Subject: Re: Re: How to expedite treatment for our daugher?

Hi Kristi,

Thank you so much for the offer. We were lucky and got our daughter seen and casted in Chicago Shriners right before the Christmas. They were awesome and she is doing great with the cast and we are extremely happy with the results to-date. She completely adjusted to the cast and now acts as if it was not even there. Again, thank you for your kindness in offering help.

Happy New Year for you and your family!

All the best,

On Mon, Jan 2, 2012 at 11:26 AM, Kristi <kristij@...> wrote:

Hey ! I’m late getting in on the conversation but, we live in Alabama down on The Gulf Coast. I noticed my Daughter Sierra’s curve around 9 mo. (back in Dec. 2009) everyone said I was over reacting and it was just muscle build up on one side..she already had a rib hump! I did not point it out at..her 9 mo. check up to her Ped. which is a friend of the family...plus it was Christmas time and everything was really hectic. I also have another Daughter Summer who is 22 mo. older than Sierra. It really started bothering me the more I felt her spine...as if her spine disappered under her shoulder blade..she does have a high curve to the left. I called her Ped. (Sierra was then 11 mo.) I just knew in my gut that something was not right. We went in to see her Ped. and I pointed out Sierra’s curve...her Ped. was completely rattled and sent us next door to the hospital for X-rays....needles to save my husband and I were freaking out!!! as soon as we got home the phone rang....her Ped. said Sierra has scoliosis...they had Never seen it in an Infant and did not know how to measure her curve! Our Ped. had us set up to see a Ped. Ortho in Mobile Alabama..3 weeks away! I immediately got on the Internet and found ISOP and posted a “help message” & called me within minutes and told me all about Dr. Mehta and that we needed to find a casting Dr. We found Dr. K in Birmingham Alabama at Children’s Hospital. Dr. K had been trained by Dr. Mehta. I called my Ped. and we were in to see Dr. K the following week & he X-rayed Sierra had determined she had a 34 degree curve and rotation and wanted to cast her that very week! We started casting in April 2010. Sierra keeps her cast on 10-12 weeks at a time. We are now on cast #9. Sierra is 9 degrees OUT of cast and –6 degrees IN cast. Sierra has a very stiff spine so it has been a difficult road to get her down to single digits OUT of cast. Dr. K has been willing to keep casting untill we feel ready to go to a brace. Dr. K has the casting table ect. He has a video on You Tube showing the procedure. Sierra will be 3 yrs. in April 2012 and we go back in March 2012 for either 10th cast or go to a brace...depends on her #’s out of cast! Dr. K has all so trained his Partner in Mehta Casting! If you want Information on how to contact Dr. K let me know. I have his direct # and a # for his Nurse. Best Wishes! Kristi....my cell is 251-228-0431

: SR Clancy

Sent: Saturday, December 31, 2011 4:30 PM

infantile scoliosis treatment

Subject: RE: Re: How to expedite treatment for our daugher?

I didn’t mention it, but Eden had an awkward gait as well! I kept questioning it, but everything was attributed to her brachial plexus injury. Looking back, that time period was so overwhelming. I DID question it, but did I actually verbalize the question to the doctors? Probably not, since we saw them so few and far between. I am thankful every single day for my daughter’s physical therapist who recommended Eden get a baseline xray for scoliosis as she was worried Eden could develop it. How little did we know that she was already 49 deg! Quite a learning experience for all of us. It was not the therapist’s job to recognize or diagnose it, but she is sharp as a whip and only in her mid-20’s.

Sherry

How to expedite treatment for our daugher?> > > > > > Hi All,> > We went to see the Doctor A. in Miami yesterday. Although he had experience> with EDF casting, he does not follow the Mehta process to the letter. He was> extremely nice, provided an hour of explanation on the process, but I was> concerned with what I've heard. > > My main concern was that they only do 3 sessions of casting for 6 weeks each> and then they move all patients to bracing. Also, he cuts the windows a> little different than the Mehta process. He does not have an EDF table and> currently use a table that was modified (with straps) to do the same> manipulation as is done with EDF frame.> > We decided to search treatment elsewhere on the recommended places. I> started by calling Greenville, SC this morning to get an appointment. > > I asked for Vickie (person someone mentioned on the board) and they> transferred me to . I faxed an application with all my information,> called her back and talked to her.> > I tried to explain the urgency to start treatment with casting and asked if> would be possible to have an appointment to see the Doctor followed by a> possible casting (at this point it is clear that it is needed). My hope was> to expedite this process and possibly reduce the number of trips to> Greenville, SC. > > She stated that it was not a possibility. I would have to go with my> daughter to see the Doctor and only after schedule casting (if the doctor> ordered it). She did not give me a date but suggested that it would not be> in December. She also told me she would call me once she had an appointment> for my daugher. > > I volunteered to be sending my daughter's x-rays and pictures by FedEx> overnight. > > I am really sad because I would like to have properly casted by no> later than mid-January > > Anything I can do to expedite the process? Is there any other treatment> center in US where things can move quicker?> > To us, it does not make a difference if we are traveling to Greenville,> Chicago, Philadelphia or Rochester. At this point, I just want to find a> place where we can quickly see the doctor that treats with Mehta and start> the treatment a.s.a.p. I don't want to wait another 2 months before having> in cast My understand is that at her age, her situation can> worsen in a 8 weeks timeframe.> > Thanks in advance for any help,> > Perdigao>