New here

[Guest guest]

Hi there! So glad you found us.... We're Rochester veterans now! Feel free to give me a call if you want to chat.... 201 262-0124.- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

From: nodonnell20 <nodonnell20@...>Subject: new hereinfantile scoliosis treatment Date: Tuesday, July 13, 2010, 1:06 AM

Hello! I feel fortunate to have found all of you parents! My name is Nicki and I have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am a physical therapist so I was shcoked to see a rib hump on the left side of my son in the bath tub one night. I knew immediatly it was scoliosis but I had some resistance from his pedi. She reluctantly ordered an xray at the visit that we FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is now 9 mo old) and his COBB was 14. When we got the results of xray #1 I immedialty called boston children hospital and made an appt knowing it would be a long wait to get in. That appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us to follow up with the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a callback from her

after she speaks with him about the 14 degree results. Does anyone have any insight? I feel very fortunate that i caught this, where I think is, early. I have been doing research and saw Dr Rubery in Rochester NY... is it too early to see him about this too? At what point do they consider casting? Thanks in advance!

[Guest guest]

Yes, you caught this early. Good job! I would def make the appt in

Boston and request that they remeasure the RVAD. If it has increased past

20 then the curve will be considered progressive. If it has not increased

(and actually decreased), then your precious babe may have a case of self

resolving scoli. Fingers crossed! Can you see a visible rib hump? If

the rib hump is visible and your maternal instinct and RVAD indicate thats

is progressing, I would would make an appt w/ Rochester asap.

Let us know how we can help.

HRH

> Hello! I feel fortunate to have found all of you parents! My name is Nicki

> and I have a 9 mo old son who we are in the process of diagnosing with

> scoliosis. I am a physical therapist so I was shcoked to see a rib hump on

> the left side of my son in the bath tub one night. I knew immediatly it

> was scoliosis but I had some resistance from his pedi. She reluctantly

> ordered an xray at the visit that we FINALLY got after weeks of waiting.

> The xray showed a COBB of 9 and after she talked to a local neurosurgeon,

> it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is

> now 9 mo old) and his COBB was 14.

>

> When we got the results of xray #1 I immedialty called boston children

> hospital and made an appt knowing it would be a long wait to get in. That

> appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us

> to follow up with the neurosurgeon too (who is not a pedi neurosuregeon).

> I am waiting on a callback from her after she speaks with him about the 14

> degree results.

>

> Does anyone have any insight? I feel very fortunate that i caught this,

> where I think is, early. I have been doing research and saw Dr Rubery in

> Rochester NY... is it too early to see him about this too? At what point

> do they consider casting?

>

> Thanks in advance!

>

>

[Guest guest]

We also started at BOston Children's and are not being treated by Dr. S in

Rochester. Boston does not do casting (or at least they were not_ a year ago

and refereed us to Dr. S in rochester who we love. I would suggest getting an

MRI of the brain and spine ASAP as that will be needed to rule out congenital

causes for scoliosis and is preferred prior to casting. I would absolutely

start seeing Rochester about this now. I would start casting as soon as you

know it is progressive, which it seems like it may be since it went from 9 to 15

in 5 weeks. The sooner you start the shorter your treatment is likely to be.

Rochester is incredible and I would recommend them to anyone. I hear great

things about Dr. R as well as our doctor. Please feel free to give me a call

518-686-1452 if you want to know anything about rochester or the journey in

general. I am a stay at home mom so I am always here!

Jenn

Mommy to Cole, 2.5 years old, 1st brace from rochester, 2 degrees down from 47

after 10 months in 5 casts

>

> Hello! I feel fortunate to have found all of you parents! My name is Nicki and

I have a 9 mo old son who we are in the process of diagnosing with scoliosis. I

am a physical therapist so I was shcoked to see a rib hump on the left side of

my son in the bath tub one night. I knew immediatly it was scoliosis but I had

some resistance from his pedi. She reluctantly ordered an xray at the visit that

we FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she

talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray.

Today was the redo (he is now 9 mo old) and his COBB was 14.

>

> When we got the results of xray #1 I immedialty called boston children

hospital and made an appt knowing it would be a long wait to get in. That appt

is now 3 weeks away and its with a pediatric ortho. Our pedi wants us to follow

up with the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on

a callback from her after she speaks with him about the 14 degree results.

>

> Does anyone have any insight? I feel very fortunate that i caught this, where

I think is, early. I have been doing research and saw Dr Rubery in Rochester

NY... is it too early to see him about this too? At what point do they consider

casting?

>

> Thanks in advance!

>

[Guest guest]

Hi Nicki,

My daughter just had her first casting done at Boston Children's last week. 's curve was 53 degrees and we saw both Dr. Hedquist and Dr. Karlin in pedi ortho. We also had an MRI done at Children's prior to the casting. They just started their casting program last Jan however Dr Karlin has been doing casting since the 80's. Both doctors were very helpful and for us casting was the best option. Hopefully this gives you some info you needed. We also needed to REALLY push our pediatrician and it took way to long for a diagnosis...

mom to , 16 mo, 53 curve down to 30 with first cast

From: nodonnell20 <nodonnell20@...>infantile scoliosis treatment Sent: Mon, July 12, 2010 9:06:00 PMSubject: new here

Hello! I feel fortunate to have found all of you parents! My name is Nicki and I have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am a physical therapist so I was shcoked to see a rib hump on the left side of my son in the bath tub one night. I knew immediatly it was scoliosis but I had some resistance from his pedi. She reluctantly ordered an xray at the visit that we FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is now 9 mo old) and his COBB was 14. When we got the results of xray #1 I immedialty called boston children hospital and made an appt knowing it would be a long wait to get in. That appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us to follow up with the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a callback from her after

she speaks with him about the 14 degree results. Does anyone have any insight? I feel very fortunate that i caught this, where I think is, early. I have been doing research and saw Dr Rubery in Rochester NY... is it too early to see him about this too? At what point do they consider casting? Thanks in advance!

[Guest guest]

Hate to be a broken record, but please try and refrain from mentioning

docs names on CAST. I have no doubt that Boston has been applying Risser

casts since the 80's and probably even before then..... Early Treatment

with EDF is a 3 dimensional corrective casting technique which utilizes a

childs rapid rate of growth to train the young spine to grow straight

gently & permanently. Risser is a 2 point mold and was originally created

as a last ditch effort at maintenance, or to hold a surgery post op. EDF

is simply an improvement to the Risser technique. The pioneer of this

potential cure (ET w/ EDF/Mehta Method) added Early Treatment to the mix

and specialized it for rapidly growing infants. I recommend that its

confirmed with Boston that they have indeed modified their Risser frame to

practice the 3 dimensional technique of EDF. I would also recommend

confirming that they understand the principles of Early Treatment and are

trimming the correct windows. Understanding the principles of ET are

crucial for the child to grow straight and for the child to be

comfortable. The widely trimmed mushroom shaped window in front allows

room for proper breathing/chest expansion, prevents rib flaring and

reduces risk of any chest wall deformity. The hole on the concavity side

in back (not past the midline) is specifically to address rotation, which

is KEY to ensure ET w/ EDF & Mehtas Method be carried out

effectively....If these very important factors can be confirmed, it will

be great news as many folks have had to travel from Boston to get treated

elsewhere. Its great news to hear that the docs in Boston now feel that

casting is an option...As I dont recall anyone on this group ever being

casted in Boston. This shows that the tide is now changing!!!! Yay!!!

This has been many years in the making.....Please let us know and thanks

again for the info.

Sincerely,

HRH

> Hi Nicki,

> My daughter just had her first casting done at Boston Children's

> last

> week.  's curve was 53 degrees and we saw both Dr. Hedquist and Dr.

> Karlin

> in  pedi ortho.  We also had an MRI done at Children's prior to the

> casting. 

> They just started their casting program last Jan however Dr Karlin has

> been

> doing casting since the 80's.  Both doctors were very helpful and for us

> casting

> was the best option.  Hopefully this gives you some info you needed.  We

> also

> needed to REALLY push our pediatrician and it took way to long for a

> diagnosis...

>

>

> mom to , 16 mo, 53 curve down to 30 with first cast

>

>

>

>

> ________________________________

> From: nodonnell20 <nodonnell20@...>

> infantile scoliosis treatment

> Sent: Mon, July 12, 2010 9:06:00 PM

> Subject: new here

>

>  

> Hello! I feel fortunate to have found all of you parents! My name is Nicki

> and I

> have a 9 mo old son who we are in the process of diagnosing with

> scoliosis. I am

> a physical therapist so I was shcoked to see a rib hump on the left side

> of my

> son in the bath tub one night. I knew immediatly it was scoliosis but I

> had some

> resistance from his pedi. She reluctantly ordered an xray at the visit

> that we

> FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after

> she

> talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an

> xray.

> Today was the redo (he is now 9 mo old) and his COBB was 14.

>

>

> When we got the results of xray #1 I immedialty called boston children

> hospital

> and made an appt knowing it would be a long wait to get in. That appt is

> now 3

> weeks away and its with a pediatric ortho. Our pedi wants us to follow up

> with

> the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a

> callback from her after she speaks with him about the 14 degree results.

>

>

> Does anyone have any insight? I feel very fortunate that i caught this,

> where I

> think is, early. I have been doing research and saw Dr Rubery in Rochester

> NY...

> is it too early to see him about this too? At what point do they consider

> casting?

>

>

> Thanks in advance!

>

>

>

>

>

>

[Guest guest]

I just want to 2nd what is saying. Being able to add Boston to the list

of doctors who are correctly applying Mehta Style EDF casts would be a HUGE step

for early treatment. I also think it is imperative to ensure that the frame is

correct as are the application of the casts coming out of Boston, as it has been

to ensure this for all hospitals that are the go to referrals to new parents

from this group.

Too many doctors believe they are applying correct Mehta style EDF casts and are

in fact not due to lack of hands on training and correct information. It is

important that everyone knows the differences so that they can ensure that their

child's chances of getting a full correcting are maximized and they don't have

any negative effects from improperly applied casts and so that if the doctors

are not correctly applying a Mehta Style EDF cast that they can be educated

about the differences so that they can modify their technique and best help out

children.

It is important to mention that Mehta style EDF casting has only been in the US

about 5 years (am I getting this right ) before this doctors were using

Risser casting. Some doctors are able to get cobb angle correction from the

risser casting and therefore consider it the same because it was corrective.

These casts however were not addressing rotation which is KEY. I think I will

work on a comparison list between risser and Mehta style casting - maybe a sort

of check list so that parents can use it as a guide to talk to their physician

and clarify what type of casting they are actually getting as terms are often

inaccurately used interchangeably.

Early treatment is a parent driven movement and it is up to us to ensure we hold

our doctors to the correct standards. Let's confirm that boston is casting

correctly so we can cheer at the addition of a new hospital on the list of

correcting practicing Mehta trained doctors in the US.

Jenn

Mommy to cole, 2.5 years old, 1st brace from rochester, 2 degrees down from 47

after 10 months in 5 casts

>

> Hi Nicki,

> My daughter just had her first casting done at Boston Children's last

> week.  's curve was 53 degrees and we saw both Dr. Hedquist and Dr.

Karlin

> in  pedi ortho.  We also had an MRI done at Children's prior to the

casting. 

> They just started their casting program last Jan however Dr Karlin has been

> doing casting since the 80's.  Both doctors were very helpful and for us

casting

> was the best option.  Hopefully this gives you some info you needed.  We

also

> needed to REALLY push our pediatrician and it took way to long for a

> diagnosis...

>

>

> mom to , 16 mo, 53 curve down to 30 with first cast

>

>

>

>

> ________________________________

> From: nodonnell20 <nodonnell20@...>

> infantile scoliosis treatment

> Sent: Mon, July 12, 2010 9:06:00 PM

> Subject: new here

>

>  

> Hello! I feel fortunate to have found all of you parents! My name is Nicki and

I

> have a 9 mo old son who we are in the process of diagnosing with scoliosis. I

am

> a physical therapist so I was shcoked to see a rib hump on the left side of my

> son in the bath tub one night. I knew immediatly it was scoliosis but I had

some

> resistance from his pedi. She reluctantly ordered an xray at the visit that we

> FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she

> talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an

xray.

> Today was the redo (he is now 9 mo old) and his COBB was 14.

>

>

> When we got the results of xray #1 I immedialty called boston children

hospital

> and made an appt knowing it would be a long wait to get in. That appt is now 3

> weeks away and its with a pediatric ortho. Our pedi wants us to follow up with

> the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a

> callback from her after she speaks with him about the 14 degree results.

>

>

> Does anyone have any insight? I feel very fortunate that i caught this, where

I

> think is, early. I have been doing research and saw Dr Rubery in Rochester

NY...

> is it too early to see him about this too? At what point do they consider

> casting?

>

>

> Thanks in advance!

>

[Guest guest]

Jenn,

You hit the nail right on the head about rotation and Risser casts, but I firmly believe it has to do with the correct casting frame. All of 's cast were Risser casts on an adult size casting frame. He went from 34 degrees to 15 degrees in a series of 6 casts over 14 months. He did not have significant rotation(or so his doctor told us back then), but had some none the less. His rotation was NOT addressed using an adult size casting frame! He did however have the windows on his casts, but those were not near enough to help him.

This was all before ish Rite was trained by Dr. Mehta.

Fast forward to today 's rotation is coming back and has been in a brace since September 2007.

**New parents, you MUST demand Early Treatment with the proper casting frame, and IMO, using Dr. Mehta's casting techniques!!!!** has a checkup next month and it is very likely he will go back into bracing full time.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Thu, July 15, 2010 12:53:01 PMSubject: Re: new here

I just want to 2nd what is saying. Being able to add Boston to the list of doctors who are correctly applying Mehta Style EDF casts would be a HUGE step for early treatment. I also think it is imperative to ensure that the frame is correct as are the application of the casts coming out of Boston, as it has been to ensure this for all hospitals that are the go to referrals to new parents from this group. Too many doctors believe they are applying correct Mehta style EDF casts and are in fact not due to lack of hands on training and correct information. It is important that everyone knows the differences so that they can ensure that their child's chances of getting a full correcting are maximized and they don't have any negative effects from improperly applied casts and so that if the doctors are not correctly applying a Mehta Style EDF cast that they can be educated about the differences so that they can modify their technique and best

help out children. It is important to mention that Mehta style EDF casting has only been in the US about 5 years (am I getting this right ) before this doctors were using Risser casting. Some doctors are able to get cobb angle correction from the risser casting and therefore consider it the same because it was corrective. These casts however were not addressing rotation which is KEY. I think I will work on a comparison list between risser and Mehta style casting - maybe a sort of check list so that parents can use it as a guide to talk to their physician and clarify what type of casting they are actually getting as terms are often inaccurately used interchangeably. Early treatment is a parent driven movement and it is up to us to ensure we hold our doctors to the correct standards. Let's confirm that boston is casting correctly so we can cheer at the addition of a new hospital on the list of correcting practicing Mehta trained

doctors in the US.JennMommy to cole, 2.5 years old, 1st brace from rochester, 2 degrees down from 47 after 10 months in 5 casts>> Hi Nicki,> My daughter just had her first casting done at Boston Children's last > week. 's curve was 53 degrees and we saw both Dr. Hedquist and Dr. Karlin > in pedi ortho. We also had an MRI done at Children's prior to the casting. > They just started their casting program last Jan however Dr Karlin has been > doing casting since the 80's. Both doctors were very helpful and for us casting > was the best option. Hopefully this gives you some info you needed. We

also > needed to REALLY push our pediatrician and it took way to long for a > diagnosis...> > > mom to , 16 mo, 53 curve down to 30 with first cast> > > > > ________________________________> From: nodonnell20 <nodonnell20@...>> infantile scoliosis treatment > Sent: Mon, July 12, 2010 9:06:00 PM> Subject: new here> > Â > Hello! I feel fortunate to have found all of you parents! My name is Nicki and I > have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am > a physical therapist so I was shcoked to see a rib hump on the left side of my > son in the bath tub one night. I knew immediatly it was

scoliosis but I had some > resistance from his pedi. She reluctantly ordered an xray at the visit that we > FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she > talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. > Today was the redo (he is now 9 mo old) and his COBB was 14. > > > When we got the results of xray #1 I immedialty called boston children hospital > and made an appt knowing it would be a long wait to get in. That appt is now 3 > weeks away and its with a pediatric ortho. Our pedi wants us to follow up with > the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a > callback from her after she speaks with him about the 14 degree results. > > > Does anyone have any insight? I feel very fortunate that i caught this, where I > think is, early. I have been doing research

and saw Dr Rubery in Rochester NY... > is it too early to see him about this too? At what point do they consider > casting? > > > Thanks in advance!>

[Guest guest]

Jenn,

You hit the nail right on the head about rotation and Risser casts, but I firmly believe it has to do with the correct casting frame. All of 's cast were Risser casts on an adult size casting frame. He went from 34 degrees to 15 degrees in a series of 6 casts over 14 months. He did not have significant rotation(or so his doctor told us back then), but had some none the less. His rotation was NOT addressed using an adult size casting frame! He did however have the windows on his casts, but those were not near enough to help him.

This was all before ish Rite was trained by Dr. Mehta.

Fast forward to today 's rotation is coming back and has been in a brace since September 2007.

**New parents, you MUST demand Early Treatment with the proper casting frame, and IMO, using Dr. Mehta's casting techniques!!!!** has a checkup next month and it is very likely he will go back into bracing full time.

TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html

From: genericallyloud <jennifer.leggett@...>infantile scoliosis treatment Sent: Thu, July 15, 2010 12:53:01 PMSubject: Re: new here

I just want to 2nd what is saying. Being able to add Boston to the list of doctors who are correctly applying Mehta Style EDF casts would be a HUGE step for early treatment. I also think it is imperative to ensure that the frame is correct as are the application of the casts coming out of Boston, as it has been to ensure this for all hospitals that are the go to referrals to new parents from this group. Too many doctors believe they are applying correct Mehta style EDF casts and are in fact not due to lack of hands on training and correct information. It is important that everyone knows the differences so that they can ensure that their child's chances of getting a full correcting are maximized and they don't have any negative effects from improperly applied casts and so that if the doctors are not correctly applying a Mehta Style EDF cast that they can be educated about the differences so that they can modify their technique and best

help out children. It is important to mention that Mehta style EDF casting has only been in the US about 5 years (am I getting this right ) before this doctors were using Risser casting. Some doctors are able to get cobb angle correction from the risser casting and therefore consider it the same because it was corrective. These casts however were not addressing rotation which is KEY. I think I will work on a comparison list between risser and Mehta style casting - maybe a sort of check list so that parents can use it as a guide to talk to their physician and clarify what type of casting they are actually getting as terms are often inaccurately used interchangeably. Early treatment is a parent driven movement and it is up to us to ensure we hold our doctors to the correct standards. Let's confirm that boston is casting correctly so we can cheer at the addition of a new hospital on the list of correcting practicing Mehta trained

doctors in the US.JennMommy to cole, 2.5 years old, 1st brace from rochester, 2 degrees down from 47 after 10 months in 5 casts>> Hi Nicki,> My daughter just had her first casting done at Boston Children's last > week. 's curve was 53 degrees and we saw both Dr. Hedquist and Dr. Karlin > in pedi ortho. We also had an MRI done at Children's prior to the casting. > They just started their casting program last Jan however Dr Karlin has been > doing casting since the 80's. Both doctors were very helpful and for us casting > was the best option. Hopefully this gives you some info you needed. We

also > needed to REALLY push our pediatrician and it took way to long for a > diagnosis...> > > mom to , 16 mo, 53 curve down to 30 with first cast> > > > > ________________________________> From: nodonnell20 <nodonnell20@...>> infantile scoliosis treatment > Sent: Mon, July 12, 2010 9:06:00 PM> Subject: new here> > Â > Hello! I feel fortunate to have found all of you parents! My name is Nicki and I > have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am > a physical therapist so I was shcoked to see a rib hump on the left side of my > son in the bath tub one night. I knew immediatly it was

scoliosis but I had some > resistance from his pedi. She reluctantly ordered an xray at the visit that we > FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she > talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. > Today was the redo (he is now 9 mo old) and his COBB was 14. > > > When we got the results of xray #1 I immedialty called boston children hospital > and made an appt knowing it would be a long wait to get in. That appt is now 3 > weeks away and its with a pediatric ortho. Our pedi wants us to follow up with > the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a > callback from her after she speaks with him about the 14 degree results. > > > Does anyone have any insight? I feel very fortunate that i caught this, where I > think is, early. I have been doing research

and saw Dr Rubery in Rochester NY... > is it too early to see him about this too? At what point do they consider > casting? > > > Thanks in advance!>

[Guest guest]

Where are you from?

Dr E in Boston is fimilar with casting as he worked with the 2 shirners in Pa

and Erie while out son was casted...took pictures and saw him after each cast.

he still follows him for yearly appt and there is another child that he saw till

completion as well. Not sure he knows all the in.s and outs of the proceudre but

he has our files to refer to the success and which doctors worked with us

He was casted for 2 years 38 degress phase 2 rotation and now cast free ans

straight. slight rotation but not noticalbe depend on how he bends becasue his

hamstrings are tight he has trouble bending over for a kong time.... he was

braced f/t 1 year post cast and then P/t night for 6-8 months after. We had a

xray last sept and he was straight we go for 1 year follow up in Boston this

fall

>

> Yes, you caught this early. Good job! I would def make the appt in

> Boston and request that they remeasure the RVAD. If it has increased past

> 20 then the curve will be considered progressive. If it has not increased

> (and actually decreased), then your precious babe may have a case of self

> resolving scoli. Fingers crossed! Can you see a visible rib hump? If

> the rib hump is visible and your maternal instinct and RVAD indicate thats

> is progressing, I would would make an appt w/ Rochester asap.

> Let us know how we can help.

> HRH

>

> > Hello! I feel fortunate to have found all of you parents! My name is Nicki

> > and I have a 9 mo old son who we are in the process of diagnosing with

> > scoliosis. I am a physical therapist so I was shcoked to see a rib hump on

> > the left side of my son in the bath tub one night. I knew immediatly it

> > was scoliosis but I had some resistance from his pedi. She reluctantly

> > ordered an xray at the visit that we FINALLY got after weeks of waiting.

> > The xray showed a COBB of 9 and after she talked to a local neurosurgeon,

> > it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is

> > now 9 mo old) and his COBB was 14.

> >

> > When we got the results of xray #1 I immedialty called boston children

> > hospital and made an appt knowing it would be a long wait to get in. That

> > appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us

> > to follow up with the neurosurgeon too (who is not a pedi neurosuregeon).

> > I am waiting on a callback from her after she speaks with him about the 14

> > degree results.

> >

> > Does anyone have any insight? I feel very fortunate that i caught this,

> > where I think is, early. I have been doing research and saw Dr Rubery in

> > Rochester NY... is it too early to see him about this too? At what point

> > do they consider casting?

> >

> > Thanks in advance!

> >

> >

>

[Guest guest]

I agree about seeing a trained doctor in this procedure ,,,,,it is well worth

the travel time and time doing it ,,,,,,,I absoulty agree with heather

>

> Hate to be a broken record, but please try and refrain from mentioning

> docs names on CAST. I have no doubt that Boston has been applying Risser

> casts since the 80's and probably even before then..... Early Treatment

> with EDF is a 3 dimensional corrective casting technique which utilizes a

> childs rapid rate of growth to train the young spine to grow straight

> gently & permanently. Risser is a 2 point mold and was originally created

> as a last ditch effort at maintenance, or to hold a surgery post op. EDF

> is simply an improvement to the Risser technique. The pioneer of this

> potential cure (ET w/ EDF/Mehta Method) added Early Treatment to the mix

> and specialized it for rapidly growing infants. I recommend that its

> confirmed with Boston that they have indeed modified their Risser frame to

> practice the 3 dimensional technique of EDF. I would also recommend

> confirming that they understand the principles of Early Treatment and are

> trimming the correct windows. Understanding the principles of ET are

> crucial for the child to grow straight and for the child to be

> comfortable. The widely trimmed mushroom shaped window in front allows

> room for proper breathing/chest expansion, prevents rib flaring and

> reduces risk of any chest wall deformity. The hole on the concavity side

> in back (not past the midline) is specifically to address rotation, which

> is KEY to ensure ET w/ EDF & Mehtas Method be carried out

> effectively....If these very important factors can be confirmed, it will

> be great news as many folks have had to travel from Boston to get treated

> elsewhere. Its great news to hear that the docs in Boston now feel that

> casting is an option...As I dont recall anyone on this group ever being

> casted in Boston. This shows that the tide is now changing!!!! Yay!!!

> This has been many years in the making.....Please let us know and thanks

> again for the info.

> Sincerely,

> HRH

>

>

>

>

>

> > Hi Nicki,

> > My daughter just had her first casting done at Boston Children's

> > last

> > week.  's curve was 53 degrees and we saw both Dr. Hedquist and Dr.

> > Karlin

> > in  pedi ortho.  We also had an MRI done at Children's prior to the

> > casting. 

> > They just started their casting program last Jan however Dr Karlin has

> > been

> > doing casting since the 80's.  Both doctors were very helpful and for us

> > casting

> > was the best option.  Hopefully this gives you some info you needed.  We

> > also

> > needed to REALLY push our pediatrician and it took way to long for a

> > diagnosis...

> >

> >

> > mom to , 16 mo, 53 curve down to 30 with first cast

> >

> >

> >

> >

> > ________________________________

> > From: nodonnell20 <nodonnell20@...>

> > infantile scoliosis treatment

> > Sent: Mon, July 12, 2010 9:06:00 PM

> > Subject: new here

> >

> >  

> > Hello! I feel fortunate to have found all of you parents! My name is Nicki

> > and I

> > have a 9 mo old son who we are in the process of diagnosing with

> > scoliosis. I am

> > a physical therapist so I was shcoked to see a rib hump on the left side

> > of my

> > son in the bath tub one night. I knew immediatly it was scoliosis but I

> > had some

> > resistance from his pedi. She reluctantly ordered an xray at the visit

> > that we

> > FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after

> > she

> > talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an

> > xray.

> > Today was the redo (he is now 9 mo old) and his COBB was 14.

> >

> >

> > When we got the results of xray #1 I immedialty called boston children

> > hospital

> > and made an appt knowing it would be a long wait to get in. That appt is

> > now 3

> > weeks away and its with a pediatric ortho. Our pedi wants us to follow up

> > with

> > the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on a

> > callback from her after she speaks with him about the 14 degree results.

> >

> >

> > Does anyone have any insight? I feel very fortunate that i caught this,

> > where I

> > think is, early. I have been doing research and saw Dr Rubery in Rochester

> > NY...

> > is it too early to see him about this too? At what point do they consider

> > casting?

> >

> >

> > Thanks in advance!

> >

> >

> >

> >

> >

> >

>

[Guest guest]

> I just want to 2nd what is saying. Being able to add Boston to

> the list of doctors who are correctly applying Mehta Style EDF casts would

> be a HUGE step for early treatment. I also think it is imperative to

> ensure that the frame is correct as are the application of the casts

> coming out of Boston, as it has been to ensure this for all hospitals that

> are the go to referrals to new parents from this group.

>

> Too many doctors believe they are applying correct Mehta style EDF casts

> and are in fact not due to lack of hands on training and correct

> information. It is important that everyone knows the differences so that

> they can ensure that their child's chances of getting a full correcting

> are maximized and they don't have any negative effects from improperly

> applied casts and so that if the doctors are not correctly applying a

> Mehta Style EDF cast that they can be educated about the differences so

> that they can modify their technique and best help out children.

>

> It is important to mention that Mehta style EDF casting has only been in

> the US about 5 years (am I getting this right ) before this doctors

> were using Risser casting. Some doctors are able to get cobb angle

> correction from the risser casting and therefore consider it the same

> because it was corrective. These casts however were not addressing

> rotation which is KEY. I think I will work on a comparison list between

> risser and Mehta style casting - maybe a sort of check list so that

> parents can use it as a guide to talk to their physician and clarify what

> type of casting they are actually getting as terms are often inaccurately

> used interchangeably.

>

> Early treatment is a parent driven movement and it is up to us to ensure

> we hold our doctors to the correct standards. Let's confirm that boston

> is casting correctly so we can cheer at the addition of a new hospital on

> the list of correcting practicing Mehta trained doctors in the US.

>

> Jenn

> Mommy to cole, 2.5 years old, 1st brace from rochester, 2 degrees down

> from 47 after 10 months in 5 casts

>

>

>>

>> Hi Nicki,

>> My daughter just had her first casting done at Boston Children's

>> last

>> week.  's curve was 53 degrees and we saw both Dr. Hedquist and

>> Dr. Karlin

>> in  pedi ortho.  We also had an MRI done at Children's prior to the

>> casting. 

>> They just started their casting program last Jan however Dr Karlin has

>> been

>> doing casting since the 80's.  Both doctors were very helpful and for

>> us casting

>> was the best option.  Hopefully this gives you some info you needed. 

>> We also

>> needed to REALLY push our pediatrician and it took way to long for a

>> diagnosis...

>>

>>

>> mom to , 16 mo, 53 curve down to 30 with first cast

>>

>>

>>

>>

>> ________________________________

>> From: nodonnell20 <nodonnell20@...>

>> infantile scoliosis treatment

>> Sent: Mon, July 12, 2010 9:06:00 PM

>> Subject: new here

>>

>>  

>> Hello! I feel fortunate to have found all of you parents! My name is

>> Nicki and I

>> have a 9 mo old son who we are in the process of diagnosing with

>> scoliosis. I am

>> a physical therapist so I was shcoked to see a rib hump on the left side

>> of my

>> son in the bath tub one night. I knew immediatly it was scoliosis but I

>> had some

>> resistance from his pedi. She reluctantly ordered an xray at the visit

>> that we

>> FINALLY got after weeks of waiting. The xray showed a COBB of 9 and

>> after she

>> talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo

>> an xray.

>> Today was the redo (he is now 9 mo old) and his COBB was 14.

>>

>>

>> When we got the results of xray #1 I immedialty called boston children

>> hospital

>> and made an appt knowing it would be a long wait to get in. That appt is

>> now 3

>> weeks away and its with a pediatric ortho. Our pedi wants us to follow

>> up with

>> the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on

>> a

>> callback from her after she speaks with him about the 14 degree results.

>>

>>

>> Does anyone have any insight? I feel very fortunate that i caught this,

>> where I

>> think is, early. I have been doing research and saw Dr Rubery in

>> Rochester NY...

>> is it too early to see him about this too? At what point do they

>> consider

>> casting?

>>

>>

>> Thanks in advance!

>>

>

>

>

[Guest guest]

Exactly right. Early Treatment w/ EDF was not available in the U.S prior

to May 2005. If it was, my daughter would have had it. I searched from

Fl. to CA and every state in between...Not a soul was doing ET. Even a

risser was hard to get back then...Now, you can at least get a risser and

thats because casting is better than wait and see. period..Unfortunately,

the ET movement has brought back to life the standard Risser cast and we

need to make clear distinctions between both methods so no children will

fall through the cracks. If a parent requests " casting " at their local

orthos office, odds are they will get a risser....when they should be

getting an EDF applied early & properly.

My 2 cents.

HRH

> I just want to 2nd what is saying. Being able to add Boston to

> the list of doctors who are correctly applying Mehta Style EDF casts would

> be a HUGE step for early treatment. I also think it is imperative to

> ensure that the frame is correct as are the application of the casts

> coming out of Boston, as it has been to ensure this for all hospitals that

> are the go to referrals to new parents from this group.

>

> Too many doctors believe they are applying correct Mehta style EDF casts

> and are in fact not due to lack of hands on training and correct

> information. It is important that everyone knows the differences so that

> they can ensure that their child's chances of getting a full correcting

> are maximized and they don't have any negative effects from improperly

> applied casts and so that if the doctors are not correctly applying a

> Mehta Style EDF cast that they can be educated about the differences so

> that they can modify their technique and best help out children.

>

> It is important to mention that Mehta style EDF casting has only been in

> the US about 5 years (am I getting this right ) before this doctors

> were using Risser casting. Some doctors are able to get cobb angle

> correction from the risser casting and therefore consider it the same

> because it was corrective. These casts however were not addressing

> rotation which is KEY. I think I will work on a comparison list between

> risser and Mehta style casting - maybe a sort of check list so that

> parents can use it as a guide to talk to their physician and clarify what

> type of casting they are actually getting as terms are often inaccurately

> used interchangeably.

>

> Early treatment is a parent driven movement and it is up to us to ensure

> we hold our doctors to the correct standards. Let's confirm that boston

> is casting correctly so we can cheer at the addition of a new hospital on

> the list of correcting practicing Mehta trained doctors in the US.

>

> Jenn

> Mommy to cole, 2.5 years old, 1st brace from rochester, 2 degrees down

> from 47 after 10 months in 5 casts

>

>

>>

>> Hi Nicki,

>> My daughter just had her first casting done at Boston Children's

>> last

>> week.  's curve was 53 degrees and we saw both Dr. Hedquist and

>> Dr. Karlin

>> in  pedi ortho.  We also had an MRI done at Children's prior to the

>> casting. 

>> They just started their casting program last Jan however Dr Karlin has

>> been

>> doing casting since the 80's.  Both doctors were very helpful and for

>> us casting

>> was the best option.  Hopefully this gives you some info you needed. 

>> We also

>> needed to REALLY push our pediatrician and it took way to long for a

>> diagnosis...

>>

>>

>> mom to , 16 mo, 53 curve down to 30 with first cast

>>

>>

>>

>>

>> ________________________________

>> From: nodonnell20 <nodonnell20@...>

>> infantile scoliosis treatment

>> Sent: Mon, July 12, 2010 9:06:00 PM

>> Subject: new here

>>

>>  

>> Hello! I feel fortunate to have found all of you parents! My name is

>> Nicki and I

>> have a 9 mo old son who we are in the process of diagnosing with

>> scoliosis. I am

>> a physical therapist so I was shcoked to see a rib hump on the left side

>> of my

>> son in the bath tub one night. I knew immediatly it was scoliosis but I

>> had some

>> resistance from his pedi. She reluctantly ordered an xray at the visit

>> that we

>> FINALLY got after weeks of waiting. The xray showed a COBB of 9 and

>> after she

>> talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo

>> an xray.

>> Today was the redo (he is now 9 mo old) and his COBB was 14.

>>

>>

>> When we got the results of xray #1 I immedialty called boston children

>> hospital

>> and made an appt knowing it would be a long wait to get in. That appt is

>> now 3

>> weeks away and its with a pediatric ortho. Our pedi wants us to follow

>> up with

>> the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on

>> a

>> callback from her after she speaks with him about the 14 degree results.

>>

>>

>> Does anyone have any insight? I feel very fortunate that i caught this,

>> where I

>> think is, early. I have been doing research and saw Dr Rubery in

>> Rochester NY...

>> is it too early to see him about this too? At what point do they

>> consider

>> casting?

>>

>>

>> Thanks in advance!

>>

>

>

>

[Guest guest]

Thanks for sharing that, Tasha....You are so right on with all know.

HRH

> Jenn,

> You hit the nail right on the head about rotation and Risser casts, but I

> firmly

> believe it has to do with the correct casting frame.  All of 's

> cast were

> Risser casts on an adult size casting frame.  He went from 34 degrees to

> 15

> degrees in a series of 6 casts over 14 months.   He did not have

> significant

> rotation(or so his doctor told us back then), but had some none the

> less.  His

> rotation was NOT addressed using an adult size casting frame!  He did

> however

> have the windows on his casts, but those were not near enough to help

> him. 

> This was all before ish Rite was trained by Dr. Mehta. 

> Fast forward to today 's rotation is coming back and has been in

> a brace

> since September 2007. 

>

> **New parents, you MUST demand Early Treatment with the proper casting

> frame,

> and IMO, using Dr. Mehta's casting techniques!!!!**  

> has a checkup next month and it is very likely he will go back into

> bracing

> full time.  

> Tasha

> Mommy of 5 year old twin boys- and

> Fort Worth, Texas

> is treated at Texas ish Rite Hospital in Dallas, Texas

> Series of 6 casts for 14 months followed by bracing since September 2007

> You can read 's story at....

> http://www.infantilescoliosis.org/stories.html

>

>

>

>

>

>

>

>

> ________________________________

> From: genericallyloud <jennifer.leggett@...>

> infantile scoliosis treatment

> Sent: Thu, July 15, 2010 12:53:01 PM

> Subject: Re: new here

>

>  

> I just want to 2nd what is saying. Being able to add Boston to the

> list

> of doctors who are correctly applying Mehta Style EDF casts would be a

> HUGE step

> for early treatment. I also think it is imperative to ensure that the

> frame is

> correct as are the application of the casts coming out of Boston, as it

> has been

> to ensure this for all hospitals that are the go to referrals to new

> parents

> from this group.

>

>

> Too many doctors believe they are applying correct Mehta style EDF casts

> and are

> in fact not due to lack of hands on training and correct information. It

> is

> important that everyone knows the differences so that they can ensure that

> their

> child's chances of getting a full correcting are maximized and they don't

> have

> any negative effects from improperly applied casts and so that if the

> doctors

> are not correctly applying a Mehta Style EDF cast that they can be

> educated

> about the differences so that they can modify their technique and best

> help out

> children.

>

>

> It is important to mention that Mehta style EDF casting has only been in

> the US

> about 5 years (am I getting this right ) before this doctors were

> using

> Risser casting. Some doctors are able to get cobb angle correction from

> the

> risser casting and therefore consider it the same because it was

> corrective.

> These casts however were not addressing rotation which is KEY. I think I

> will

> work on a comparison list between risser and Mehta style casting - maybe a

> sort

> of check list so that parents can use it as a guide to talk to their

> physician

> and clarify what type of casting they are actually getting as terms are

> often

> inaccurately used interchangeably.

>

>

> Early treatment is a parent driven movement and it is up to us to ensure

> we hold

> our doctors to the correct standards. Let's confirm that boston is casting

> correctly so we can cheer at the addition of a new hospital on the list of

> correcting practicing Mehta trained doctors in the US.

>

> Jenn

> Mommy to cole, 2.5 years old, 1st brace from rochester, 2 degrees down

> from 47

> after 10 months in 5 casts

>

>

>>

>> Hi Nicki,

>> My daughter just had her first casting done at Boston Children's

>> last

>> week.  's curve was 53 degrees and we saw both Dr. Hedquist and

>> Dr.

>>Karlin

>>

>> in  pedi ortho.  We also had an MRI done at Children's prior to

>> the

>>casting. 

>>

>> They just started their casting program last Jan however Dr Karlin has

>> been

>> doing casting since the 80's.  Both doctors were very helpful and for

>> us

>>casting

>>

>> was the best option.  Hopefully this gives you some info you

>> needed.  We also

>>

>> needed to REALLY push our pediatrician and it took way to long for a

>> diagnosis...

>>

>>

>> mom to , 16 mo, 53 curve down to 30 with first cast

>>

>>

>>

>>

>> ________________________________

>> From: nodonnell20 <nodonnell20@...>

>> infantile scoliosis treatment

>> Sent: Mon, July 12, 2010 9:06:00 PM

>> Subject: new here

>>

>>  

>> Hello! I feel fortunate to have found all of you parents! My name is

>> Nicki and

>>I

>>

>> have a 9 mo old son who we are in the process of diagnosing with

>> scoliosis. I

>>am

>>

>> a physical therapist so I was shcoked to see a rib hump on the left side

>> of my

>

>> son in the bath tub one night. I knew immediatly it was scoliosis but I

>> had

>>some

>>

>> resistance from his pedi. She reluctantly ordered an xray at the visit

>> that we

>

>> FINALLY got after weeks of waiting. The xray showed a COBB of 9 and

>> after she

>> talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo

>> an

>>xray.

>>

>> Today was the redo (he is now 9 mo old) and his COBB was 14.

>>

>>

>> When we got the results of xray #1 I immedialty called boston children

>> hospital

>>

>> and made an appt knowing it would be a long wait to get in. That appt is

>> now 3

>

>> weeks away and its with a pediatric ortho. Our pedi wants us to follow

>> up with

>

>> the neurosurgeon too (who is not a pedi neurosuregeon). I am waiting on

>> a

>> callback from her after she speaks with him about the 14 degree results.

>>

>>

>> Does anyone have any insight? I feel very fortunate that i caught this,

>> where I

>>

>> think is, early. I have been doing research and saw Dr Rubery in

>> Rochester

>>NY...

>>

>> is it too early to see him about this too? At what point do they

>> consider

>> casting?

>>

>>

>> Thanks in advance!

>>

>

>

>

>

>

>

[Guest guest]

Bet you're glad its over! Hows Ruby?

HRH

> Where are you from?

>

> Dr E in Boston is fimilar with casting as he worked with the 2 shirners in

> Pa and Erie while out son was casted...took pictures and saw him after

> each cast. he still follows him for yearly appt and there is another child

> that he saw till completion as well. Not sure he knows all the in.s and

> outs of the proceudre but he has our files to refer to the success and

> which doctors worked with us

>

> He was casted for 2 years 38 degress phase 2 rotation and now cast free

> ans straight. slight rotation but not noticalbe depend on how he bends

> becasue his hamstrings are tight he has trouble bending over for a kong

> time.... he was braced f/t 1 year post cast and then P/t night for 6-8

> months after. We had a xray last sept and he was straight we go for 1 year

> follow up in Boston this fall

>

>

>>

>> Yes, you caught this early. Good job! I would def make the appt in

>> Boston and request that they remeasure the RVAD. If it has increased

>> past

>> 20 then the curve will be considered progressive. If it has not

>> increased

>> (and actually decreased), then your precious babe may have a case of

>> self

>> resolving scoli. Fingers crossed! Can you see a visible rib hump? If

>> the rib hump is visible and your maternal instinct and RVAD indicate

>> thats

>> is progressing, I would would make an appt w/ Rochester asap.

>> Let us know how we can help.

>> HRH

>>

>> > Hello! I feel fortunate to have found all of you parents! My name is

>> Nicki

>> > and I have a 9 mo old son who we are in the process of diagnosing with

>> > scoliosis. I am a physical therapist so I was shcoked to see a rib

>> hump on

>> > the left side of my son in the bath tub one night. I knew immediatly

>> it

>> > was scoliosis but I had some resistance from his pedi. She reluctantly

>> > ordered an xray at the visit that we FINALLY got after weeks of

>> waiting.

>> > The xray showed a COBB of 9 and after she talked to a local

>> neurosurgeon,

>> > it was agreed to wait 5 weeks then redo an xray. Today was the redo

>> (he is

>> > now 9 mo old) and his COBB was 14.

>> >

>> > When we got the results of xray #1 I immedialty called boston children

>> > hospital and made an appt knowing it would be a long wait to get in.

>> That

>> > appt is now 3 weeks away and its with a pediatric ortho. Our pedi

>> wants us

>> > to follow up with the neurosurgeon too (who is not a pedi

>> neurosuregeon).

>> > I am waiting on a callback from her after she speaks with him about

>> the 14

>> > degree results.

>> >

>> > Does anyone have any insight? I feel very fortunate that i caught

>> this,

>> > where I think is, early. I have been doing research and saw Dr Rubery

>> in

>> > Rochester NY... is it too early to see him about this too? At what

>> point

>> > do they consider casting?

>> >

>> > Thanks in advance!

>> >

>> >

>>

>

>

>

[Guest guest]

oh my god shannon - I just got tears in my eyes. We are seeing Dr Hedequist in 2 weeks. As I said I am a PT and I have a patient with polio (only 27 years old too) who sees Dr Hedequist so when I saw his name in the spinal program, I requested him. Where do you live?? I would love to talk to you more

Nicki

From: Leary <sleary7676@...>infantile scoliosis treatment Sent: Wed, July 14, 2010 3:19:00 PMSubject: Re: new here

Hi Nicki,

My daughter just had her first casting done at Boston Children's last week. 's curve was 53 degrees and we saw both Dr. Hedquist and Dr. Karlin in pedi ortho. We also had an MRI done at Children's prior to the casting. They just started their casting program last Jan however Dr Karlin has been doing casting since the 80's. Both doctors were very helpful and for us casting was the best option. Hopefully this gives you some info you needed. We also needed to REALLY push our pediatrician and it took way to long for a diagnosis...

mom to , 16 mo, 53 curve down to 30 with first cast

From: nodonnell20 <nodonnell20>infantile scoliosis treatment @groups. comSent: Mon, July 12, 2010 9:06:00 PMSubject: [infantile_scoliosi s] new here

Hello! I feel fortunate to have found all of you parents! My name is Nicki and I have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am a physical therapist so I was shcoked to see a rib hump on the left side of my son in the bath tub one night. I knew immediatly it was scoliosis but I had some resistance from his pedi. She reluctantly ordered an xray at the visit that we FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is now 9 mo old) and his COBB was 14. When we got the results of xray #1 I immedialty called boston children hospital and made an appt knowing it would be a long wait to get in. That appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us to follow up with the neurosurgeon too (who is not a pedi neurosuregeon) . I am waiting on a callback from her after

she speaks with him about the 14 degree results. Does anyone have any insight? I feel very fortunate that i caught this, where I think is, early. I have been doing research and saw Dr Rubery in Rochester NY... is it too early to see him about this too? At what point do they consider casting? Thanks in advance!

[Guest guest]

Hi Nicki,

Here is my home email shannie76@... Email me and I can give you some feedback on our experience.. =)

From: Nicki Odonnell <nodonnell20@...>infantile scoliosis treatment Sent: Sun, July 18, 2010 1:32:53 PMSubject: Re: new here

oh my god shannon - I just got tears in my eyes. We are seeing Dr Hedequist in 2 weeks. As I said I am a PT and I have a patient with polio (only 27 years old too) who sees Dr Hedequist so when I saw his name in the spinal program, I requested him. Where do you live?? I would love to talk to you more

Nicki

From: Leary <sleary7676 (DOT) com>infantile scoliosis treatment @groups. comSent: Wed, July 14, 2010 3:19:00 PMSubject: Re: [infantile_scoliosi s] new here

Hi Nicki,

My daughter just had her first casting done at Boston Children's last week. 's curve was 53 degrees and we saw both Dr. Hedquist and Dr. Karlin in pedi ortho. We also had an MRI done at Children's prior to the casting. They just started their casting program last Jan however Dr Karlin has been doing casting since the 80's. Both doctors were very helpful and for us casting was the best option. Hopefully this gives you some info you needed. We also needed to REALLY push our pediatrician and it took way to long for a diagnosis...

mom to , 16 mo, 53 curve down to 30 with first cast

From: nodonnell20 <nodonnell20>infantile scoliosis treatment @groups. comSent: Mon, July 12, 2010 9:06:00 PMSubject: [infantile_scoliosi s] new here

Hello! I feel fortunate to have found all of you parents! My name is Nicki and I have a 9 mo old son who we are in the process of diagnosing with scoliosis. I am a physical therapist so I was shcoked to see a rib hump on the left side of my son in the bath tub one night. I knew immediatly it was scoliosis but I had some resistance from his pedi. She reluctantly ordered an xray at the visit that we FINALLY got after weeks of waiting. The xray showed a COBB of 9 and after she talked to a local neurosurgeon, it was agreed to wait 5 weeks then redo an xray. Today was the redo (he is now 9 mo old) and his COBB was 14. When we got the results of xray #1 I immedialty called boston children hospital and made an appt knowing it would be a long wait to get in. That appt is now 3 weeks away and its with a pediatric ortho. Our pedi wants us to follow up with the neurosurgeon too (who is not a pedi neurosuregeon) . I am waiting on a callback from her after

she speaks with him about the 14 degree results. Does anyone have any insight? I feel very fortunate that i caught this, where I think is, early. I have been doing research and saw Dr Rubery in Rochester NY... is it too early to see him about this too? At what point do they consider casting? Thanks in advance!

[Guest guest]

Hello ,

Welcome!

>

> i need to get healthy 5 7 250. i have cfs,fibro etc. so exercise is sometimes

hard. i can crash in bed for days.so i need to lose slower than i want to. mary

in pa

>

[Guest guest]

HI ,

Weight loss is the toughest thing to achieve but losing slowly is the best way to do it. I have a hard time of it myself and I haven't mastered it yet but a complete change of lifestyle is what it takes. If you do that you will take it off the way you need to. Slowly.

You don't need to deprive yourself of everything all the time... maybe some of the time hehehe. Smaller portions is what you need to keep in mind. Healthy foods is a must and some kind of exercise for 30 minutes every day. I am learning that the exercise part is not negotiable. Find something you can do and do it. Maybe you will need to do 3 increments of 10 minutes each day to get your 30 minutes in but that will work too. Even if you start by sitting in a chair and waving a little flag will have an effect on your arms. I don't know how limited you are but it sounds like you have a lot of medical problems. If you can't stand to exercise then sit but just keep some parts of your body moving all the time. It will really work. Every movement burns calories.

This is a wonderful group and you will find plenty of support here.

I'm still sort of shy *blush* about emailing but I am doing it. They are very compassionate here. I hope you will feel you have finally found a good support base here like I have.

Take care,

Ervin

-in Bancroft, ON Canada

From: mygavin5

Sent: Wednesday, July 21, 2010 10:07 PM

100-plus

Subject: new here

i need to get healthy 5 7 250. i have cfs,fibro etc. so exercise is sometimes hard. i can crash in bed for days.so i need to lose slower than i want to. mary in pa

[Guest guest]

Welcome to the group, ! Have you decided on a plan of action?

   elisaannh

-- new here

i need to get healthy 5 7 250. i have cfs,fibro etc. so exercise is sometimes hard. i can crash in bed for days.so i need to lose slower than i want to. mary in pa

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

[Guest guest]

,

Do not wait to apply to Shriners Hospital - there are many families on this site

who go to Chicago who can give you phone numbers. The application process is

easy and you'll need to send the xrays, but waiting to see if your daughter's

spine gets worse is not the approach to take because it probably will.

mom to Audrey, 3rd cast, SLC

>

> Hi!

>

> We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months old next week. She was diagnosed with moderate scoliosis in June of this

year. She has had an MRI that came back normal (thank goodness). We are seeing a

doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and

decide from there. He mentioned the Boston brace and possibly body casting but

didn't give a lot of detail. My daughter's curve is currently at 36%.

>

> After much research on my own, I read about Mehta casting. I don't even know

if my daughter would qualify for this type of cast. We are looking into applying

at Shriner's hospital in Chicago.

>

> We adopted my daughter from Ethiopia last year. She came home at just under 6

months of age with very low muscle tone. She is yet to walk independently but is

getting close. We have her in PT and are looking to qualify for Early

intervention in our state. We worry about not doing anything and it getting a

lot worse and we worry that casting will hold her back devleopment wise. So much

to decide....

>

> We are hoping to gain insight, info and support as we navigate this process

for our daughter.

>

> Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

Chicago? Advice as we start that process?

>

>

> mom, to Kiya, 20 months

>

[Guest guest]

Hi , welcome to CAST!

36 degrees, is that in a lying down X-ray? Standing is more accurate, and will likely be higher. 36 is already pretty high. My advice is also not to wait to apply to Shriners. Chicago is a terrific center for this method, many families love it there! I am sure some will respond soon. Watch and wait or wait and see is the wrong approach to take, unfortunately, and is the norm to hear from most doctors. The very best chance for correction and avoiding multiple spinal surgeries down the line is a properly applied series of casts done on the derotational, 3 dimensional table, as Chicago does. A regular Risser cast will not have the same chance at correction, that is likely the kind your current doctor referred to (?)

The best time to begin tretment is under age 2 and under 50-60 degrees. Truly the sooner, the better, these casts correct along with your child's natural growth spurts, and you do not want to miss one, as that can allow the condition to progress fast. Even weeks and certainly months can make a huge differerence in the length of treatment needed. The surgeries are not easy at all, are much more invasive, and can have many complications.

Mehta or EDF casting is the only potential cure, and it is gentle and non-surgical. At the least, it will postpone surgery for as long as possible, while bracing often does not even hold the curve in progressive cases. If you opt for bracing, the window of correction with proper casting can be lost, in some cases making surgery necessary very young, as young as 2 or 3, every 6 months or sooner. It has more than a 100 percent complication rate.

Parents of children with low muscle tone will know more about that, but they are here for sure, you can also search for it in older posts on this group. Casting is hard at first, but very do-able!

Congratulations on adopting Kiya, you are in the right place to do the very best thing for your precious child! Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners, currently down from 62 degrees to 19.7 in cast)

From: cjustl <cjustl@...>infantile scoliosis treatment Sent: Fri, July 23, 2010 12:15:28 PMSubject: New here

Hi!We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 months old next week. She was diagnosed with moderate scoliosis in June of this year. She has had an MRI that came back normal (thank goodness). We are seeing a doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and decide from there. He mentioned the Boston brace and possibly body casting but didn't give a lot of detail. My daughter's curve is currently at 36%. After much research on my own, I read about Mehta casting. I don't even know if my daughter would qualify for this type of cast. We are looking into applying at Shriner's hospital in Chicago.We adopted my daughter from Ethiopia last year. She came home at just under 6 months of age with very low muscle tone. She is yet to walk independently but is getting close. We have her in PT and are looking to qualify for Early intervention in our state. We worry about not doing

anything and it getting a lot worse and we worry that casting will hold her back devleopment wise. So much to decide....We are hoping to gain insight, info and support as we navigate this process for our daughter.Thanks in advance for any advice, info, etc. Anyone been to Shriner's in Chicago? Advice as we start that process?mom, to Kiya, 20 months

[Guest guest]

Heidi,

Have I told you lately how great you are in responding and giving great advice?

BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a rough

day for sure. Just wanted to give you kuddos on your responses!

Xoxo,

NIck Guthe <nickguthe@...> wrote:

>Hi , welcome to CAST!

>

>36 degrees, is that in a lying down X-ray? Standing is more accurate, and will

>likely be higher. 36 is already pretty high. My advice is also not to wait to

>apply to Shriners. Chicago is a terrific center for this method, many families

>love it there! I am sure some will respond soon. Watch and wait or wait and

see

>is the wrong approach to take, unfortunately, and is the norm to hear from most

>doctors. The very best chance for correction and avoiding multiple spinal

>surgeries down the line is a properly applied series of casts done on the

>derotational, 3 dimensional table, as Chicago does. A regular Risser cast will

>not have the same chance at correction, that is likely the kind your current

>doctor referred to (?)

>

>The best time to begin tretment is under age 2 and under 50-60 degrees. Truly

>the sooner, the better, these casts correct along with your child's natural

>growth spurts, and you do not want to miss one, as that can allow the condition

>to progress fast. Even weeks and certainly months can make a huge differerence

>in the length of treatment needed. The surgeries are not easy at all, are much

>more invasive, and can have many complications.

>

>Mehta or EDF casting is the only potential cure, and it is gentle and

>non-surgical. At the least, it will postpone surgery for as long as possible,

>while bracing often does not even hold the curve in progressive cases. If you

>opt for bracing, the window of correction with proper casting can be lost, in

>some cases making surgery necessary very young, as young as 2 or 3, every 6

>months or sooner. It has more than a 100 percent complication rate.

>

>Parents of children with low muscle tone will know more about that, but they

are

>here for sure, you can also search for it in older posts on this group. Casting

>is hard at first, but very do-able!

>

>Congratulations on adopting Kiya, you are in the right place to do the very

best

>thing for your precious child!

> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City Shriners,

>currently down from 62 degrees to 19.7 in cast)

>

>

>

>

>

>________________________________

>From: cjustl <cjustl@...>

>infantile scoliosis treatment

>Sent: Fri, July 23, 2010 12:15:28 PM

>Subject: New here

>

> 

>Hi!

>

>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months

>old next week. She was diagnosed with moderate scoliosis in June of this year.

>She has had an MRI that came back normal (thank goodness). We are seeing a

>doctor here in Madison, WI and he is telling us to repeat xrays in 3 months and

>decide from there. He mentioned the Boston brace and possibly body casting but

>didn't give a lot of detail. My daughter's curve is currently at 36%.

>

>

>After much research on my own, I read about Mehta casting. I don't even know if

>my daughter would qualify for this type of cast. We are looking into applying

at

>Shriner's hospital in Chicago.

>

>We adopted my daughter from Ethiopia last year. She came home at just under 6

>months of age with very low muscle tone. She is yet to walk independently but

is

>getting close. We have her in PT and are looking to qualify for Early

>intervention in our state. We worry about not doing anything and it getting a

>lot worse and we worry that casting will hold her back devleopment wise. So

much

>to decide....

>

>We are hoping to gain insight, info and support as we navigate this process for

>our daughter.

>

>Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

>Chicago? Advice as we start that process?

>

>

>mom, to Kiya, 20 months

>

>

>

>

>

>

[Guest guest]

Thank you everyone for the fast welcome. We are filling out our Shriner's

application this weekend. My daughter's 36% was done as a standing x-ray. I am

overwhelmed right now with info and I know I will have a ton of questions. I

hope I don't get annoying...

>

> >Hi , welcome to CAST!

> >

> >36 degrees, is that in a lying down X-ray? Standing is more accurate, and

will

> >likely be higher. 36 is already pretty high. My advice is also not to wait to

> >apply to Shriners. Chicago is a terrific center for this method, many

families

> >love it there! I am sure some will respond soon. Watch and wait or wait and

see

> >is the wrong approach to take, unfortunately, and is the norm to hear from

most

> >doctors. The very best chance for correction and avoiding multiple spinal

> >surgeries down the line is a properly applied series of casts done on the

> >derotational, 3 dimensional table, as Chicago does. A regular Risser cast

will

> >not have the same chance at correction, that is likely the kind your current

> >doctor referred to (?)

> >

> >The best time to begin tretment is under age 2 and under 50-60 degrees. Truly

> >the sooner, the better, these casts correct along with your child's natural

> >growth spurts, and you do not want to miss one, as that can allow the

condition

> >to progress fast. Even weeks and certainly months can make a huge

differerence

> >in the length of treatment needed. The surgeries are not easy at all, are

much

> >more invasive, and can have many complications.

> >

> >Mehta or EDF casting is the only potential cure, and it is gentle and

> >non-surgical. At the least, it will postpone surgery for as long as possible,

> >while bracing often does not even hold the curve in progressive cases. If

you

> >opt for bracing, the window of correction with proper casting can be lost,

in

> >some cases making surgery necessary very young, as young as 2 or 3, every 6

> >months or sooner. It has more than a 100 percent complication rate.

> >

> >Parents of children with low muscle tone will know more about that, but they

are

> >here for sure, you can also search for it in older posts on this group.

Casting

> >is hard at first, but very do-able!

> >

> >Congratulations on adopting Kiya, you are in the right place to do the very

best

> >thing for your precious child!

> > Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City

Shriners,

> >currently down from 62 degrees to 19.7 in cast)

> >

> >

> >

> >

> >

> >________________________________

> >From: cjustl <cjustl@...>

> >infantile scoliosis treatment

> >Sent: Fri, July 23, 2010 12:15:28 PM

> >Subject: New here

> >

> > 

> >Hi!

> >

> >We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months

> >old next week. She was diagnosed with moderate scoliosis in June of this

year.

> >She has had an MRI that came back normal (thank goodness). We are seeing a

> >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months

and

> >decide from there. He mentioned the Boston brace and possibly body casting

but

> >didn't give a lot of detail. My daughter's curve is currently at 36%.

> >

> >

> >After much research on my own, I read about Mehta casting. I don't even know

if

> >my daughter would qualify for this type of cast. We are looking into applying

at

> >Shriner's hospital in Chicago.

> >

> >We adopted my daughter from Ethiopia last year. She came home at just under 6

> >months of age with very low muscle tone. She is yet to walk independently but

is

> >getting close. We have her in PT and are looking to qualify for Early

> >intervention in our state. We worry about not doing anything and it getting a

> >lot worse and we worry that casting will hold her back devleopment wise. So

much

> >to decide....

> >

> >We are hoping to gain insight, info and support as we navigate this process

for

> >our daughter.

> >

> >Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

> >Chicago? Advice as we start that process?

> >

> >

> >mom, to Kiya, 20 months

> >

> >

> >

> >

> >

> >

>

[Guest guest]

,

My daughter Makenna is treated at Chicago Shriner's. The contact person is

Cree and her number is 773-385-5513. Call her directly Monday morning. She will

let you know what you need to do next. We filled out the application, sent it

through our local shrine... I am a rule follower, so I was just trying to do

what I was supposed to do. That route took me 8 weeks to get an appointment.

Call directly,it speeds things up.

The numbers that you've been given are Kiya's cobb angle. There is a second

angle that can be measured that is predictive of whether her scoliosis is

progressive. Our consultation is the first dr's visit where we heard that

number. This is what they do... and they are very good at it.

Don't worry too much about the cast interfering with her development. I've heard

lots of stories of kids learning to crawl and walk in casts. Makenna was already

walking when she got her first cast (her scoliosis developed later; she was 2.5

in her first cast). But she is able to do everything she did before. I am a

gymnastics coach and she plays at the gym all the time. She hangs on the bars,

she bounces on the trampoline, she walks on the beams, she climbs on mats and

jumps off of them... the only thing she can't do is roll! Her balance is a

little different in cast, but she adapts to the difference and compensates.

These kids are resillent and AMAZING!

Good luck and let me know if you have any questions. I would fill out your app,

but call before you put it in the mail...

Amy, mom to Makenna (3 years old, in 3rd cast. Treated at Chicago Shriner's.

Currently 14* out of cast - down from 23*)

You can read Makenna's full story at www.sosmakenna.com

> >

> > >Hi , welcome to CAST!

> > >

> > >36 degrees, is that in a lying down X-ray? Standing is more accurate, and

will

> > >likely be higher. 36 is already pretty high. My advice is also not to wait

to

> > >apply to Shriners. Chicago is a terrific center for this method, many

families

> > >love it there! I am sure some will respond soon. Watch and wait or wait

and see

> > >is the wrong approach to take, unfortunately, and is the norm to hear from

most

> > >doctors. The very best chance for correction and avoiding multiple spinal

> > >surgeries down the line is a properly applied series of casts done on the

> > >derotational, 3 dimensional table, as Chicago does. A regular Risser cast

will

> > >not have the same chance at correction, that is likely the kind your

current

> > >doctor referred to (?)

> > >

> > >The best time to begin tretment is under age 2 and under 50-60 degrees.

Truly

> > >the sooner, the better, these casts correct along with your child's natural

> > >growth spurts, and you do not want to miss one, as that can allow the

condition

> > >to progress fast. Even weeks and certainly months can make a huge

differerence

> > >in the length of treatment needed. The surgeries are not easy at all, are

much

> > >more invasive, and can have many complications.

> > >

> > >Mehta or EDF casting is the only potential cure, and it is gentle and

> > >non-surgical. At the least, it will postpone surgery for as long as

possible,

> > >while bracing often does not even hold the curve in progressive cases. If

you

> > >opt for bracing, the window of correction with proper casting can be lost,

in

> > >some cases making surgery necessary very young, as young as 2 or 3, every 6

> > >months or sooner. It has more than a 100 percent complication rate.

> > >

> > >Parents of children with low muscle tone will know more about that, but

they are

> > >here for sure, you can also search for it in older posts on this group.

Casting

> > >is hard at first, but very do-able!

> > >

> > >Congratulations on adopting Kiya, you are in the right place to do the very

best

> > >thing for your precious child!

> > > Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City

Shriners,

> > >currently down from 62 degrees to 19.7 in cast)

> > >

> > >

> > >

> > >

> > >

> > >________________________________

> > >From: cjustl <cjustl@>

> > >infantile scoliosis treatment

> > >Sent: Fri, July 23, 2010 12:15:28 PM

> > >Subject: New here

> > >

> > > 

> > >Hi!

> > >

> > >We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months

> > >old next week. She was diagnosed with moderate scoliosis in June of this

year.

> > >She has had an MRI that came back normal (thank goodness). We are seeing a

> > >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months

and

> > >decide from there. He mentioned the Boston brace and possibly body casting

but

> > >didn't give a lot of detail. My daughter's curve is currently at 36%.

> > >

> > >

> > >After much research on my own, I read about Mehta casting. I don't even

know if

> > >my daughter would qualify for this type of cast. We are looking into

applying at

> > >Shriner's hospital in Chicago.

> > >

> > >We adopted my daughter from Ethiopia last year. She came home at just under

6

> > >months of age with very low muscle tone. She is yet to walk independently

but is

> > >getting close. We have her in PT and are looking to qualify for Early

> > >intervention in our state. We worry about not doing anything and it getting

a

> > >lot worse and we worry that casting will hold her back devleopment wise. So

much

> > >to decide....

> > >

> > >We are hoping to gain insight, info and support as we navigate this process

for

> > >our daughter.

> > >

> > >Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

> > >Chicago? Advice as we start that process?

> > >

> > >

> > >mom, to Kiya, 20 months

> > >

> > >

> > >

> > >

> > >

> > >

> >

>

[Guest guest]

,

My daughter Makenna is treated at Chicago Shriner's. The contact person is

Cree and her number is 773-385-5513. Call her directly Monday morning. She will

let you know what you need to do next. We filled out the application, sent it

through our local shrine... I am a rule follower, so I was just trying to do

what I was supposed to do. That route took me 8 weeks to get an appointment.

Call directly,it speeds things up.

The numbers that you've been given are Kiya's cobb angle. There is a second

angle that can be measured that is predictive of whether her scoliosis is

progressive. Our consultation is the first dr's visit where we heard that

number. This is what they do... and they are very good at it.

Don't worry too much about the cast interfering with her development. I've heard

lots of stories of kids learning to crawl and walk in casts. Makenna was already

walking when she got her first cast (her scoliosis developed later; she was 2.5

in her first cast). But she is able to do everything she did before. I am a

gymnastics coach and she plays at the gym all the time. She hangs on the bars,

she bounces on the trampoline, she walks on the beams, she climbs on mats and

jumps off of them... the only thing she can't do is roll! Her balance is a

little different in cast, but she adapts to the difference and compensates.

These kids are resillent and AMAZING!

Good luck and let me know if you have any questions. I would fill out your app,

but call before you put it in the mail...

Amy, mom to Makenna (3 years old, in 3rd cast. Treated at Chicago Shriner's.

Currently 14* out of cast - down from 23*)

You can read Makenna's full story at www.sosmakenna.com

> >

> > >Hi , welcome to CAST!

> > >

> > >36 degrees, is that in a lying down X-ray? Standing is more accurate, and

will

> > >likely be higher. 36 is already pretty high. My advice is also not to wait

to

> > >apply to Shriners. Chicago is a terrific center for this method, many

families

> > >love it there! I am sure some will respond soon. Watch and wait or wait

and see

> > >is the wrong approach to take, unfortunately, and is the norm to hear from

most

> > >doctors. The very best chance for correction and avoiding multiple spinal

> > >surgeries down the line is a properly applied series of casts done on the

> > >derotational, 3 dimensional table, as Chicago does. A regular Risser cast

will

> > >not have the same chance at correction, that is likely the kind your

current

> > >doctor referred to (?)

> > >

> > >The best time to begin tretment is under age 2 and under 50-60 degrees.

Truly

> > >the sooner, the better, these casts correct along with your child's natural

> > >growth spurts, and you do not want to miss one, as that can allow the

condition

> > >to progress fast. Even weeks and certainly months can make a huge

differerence

> > >in the length of treatment needed. The surgeries are not easy at all, are

much

> > >more invasive, and can have many complications.

> > >

> > >Mehta or EDF casting is the only potential cure, and it is gentle and

> > >non-surgical. At the least, it will postpone surgery for as long as

possible,

> > >while bracing often does not even hold the curve in progressive cases. If

you

> > >opt for bracing, the window of correction with proper casting can be lost,

in

> > >some cases making surgery necessary very young, as young as 2 or 3, every 6

> > >months or sooner. It has more than a 100 percent complication rate.

> > >

> > >Parents of children with low muscle tone will know more about that, but

they are

> > >here for sure, you can also search for it in older posts on this group.

Casting

> > >is hard at first, but very do-able!

> > >

> > >Congratulations on adopting Kiya, you are in the right place to do the very

best

> > >thing for your precious child!

> > > Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City

Shriners,

> > >currently down from 62 degrees to 19.7 in cast)

> > >

> > >

> > >

> > >

> > >

> > >________________________________

> > >From: cjustl <cjustl@>

> > >infantile scoliosis treatment

> > >Sent: Fri, July 23, 2010 12:15:28 PM

> > >Subject: New here

> > >

> > > 

> > >Hi!

> > >

> > >We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20

months

> > >old next week. She was diagnosed with moderate scoliosis in June of this

year.

> > >She has had an MRI that came back normal (thank goodness). We are seeing a

> > >doctor here in Madison, WI and he is telling us to repeat xrays in 3 months

and

> > >decide from there. He mentioned the Boston brace and possibly body casting

but

> > >didn't give a lot of detail. My daughter's curve is currently at 36%.

> > >

> > >

> > >After much research on my own, I read about Mehta casting. I don't even

know if

> > >my daughter would qualify for this type of cast. We are looking into

applying at

> > >Shriner's hospital in Chicago.

> > >

> > >We adopted my daughter from Ethiopia last year. She came home at just under

6

> > >months of age with very low muscle tone. She is yet to walk independently

but is

> > >getting close. We have her in PT and are looking to qualify for Early

> > >intervention in our state. We worry about not doing anything and it getting

a

> > >lot worse and we worry that casting will hold her back devleopment wise. So

much

> > >to decide....

> > >

> > >We are hoping to gain insight, info and support as we navigate this process

for

> > >our daughter.

> > >

> > >Thanks in advance for any advice, info, etc. Anyone been to Shriner's in

> > >Chicago? Advice as we start that process?

> > >

> > >

> > >mom, to Kiya, 20 months

> > >

> > >

> > >

> > >

> > >

> > >

> >

>