Alternative Conservative Treatment

[Guest guest]

My name is Chad Braley, and I am the manager of research and

development at AtlanticProCare, a Prosthetics and Orthotics service

provider in portland ME. We have currently been funded by the

National Science Foundation to do research on a new alternative for

conservative treatment of club feet and other lower extremity

deformities. The orthosis is a simple, easy to wear, removable

orthosis that allows for natural mobility and ambulation. The goal

of this orthosis is to combine the positive aspects of casting

(Correct positioning) without the drawbacks (non-removable, limiting

of mobility, and emotional trauma). We have had over a 98% success

rate with this orthosis, and we are currently looking for intrested

parents and children to add to our study. For more information:

http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

or email me directly: csb@...

or contact our office directly:

and I will be glad to answer any questions or concerns that you

would have. We are currently working with the mothers of the

children that we have already fit to be available to contact or

discuss the use of the orthosis

Thanks

chad

[Guest guest]

Chad,

I would like for you to share more information about your brace with

the group. I read the brief article that you included in the link,

and you specifically mention that you are trying to emulate the

Ponseti method of casting. I am a bit skeptical that a brace can

provide the same correction as a plaster cast, so I hope you'll share

some more technical information with this group. Even though most of

us on this board are not in the medical field, many of us have

learned a lot about the dynamics of clubfoot and can follow detailed

technical information. Are there Ponseti trained doctors providing

input on this program? Are they listed on Dr. Ponseti's website

as " qualified " doctors? What does the KAFO look like? Do you have

pictures that you can share? How does the KAFO mold to the foot to

hold the bones in the proper position? (this is the reason that most

doctors use plaster over fiberglass- for the molding advantages)

Is there a concern with the brace being removable that a parent would

leave it off too long so the foot would regress (the bones would

move), then when they would try to put the brace back on it might

cause issues? How often do the children kick the brace off, or have

it move/slip so that it's not on correctly?

You state that you've had 98% success with the brace so far...what is

the definition of " success " and how many cases make up the 98%? What

are the age ranges of the children that you've been treating, and

have any of them had prior treatment? How old is your oldest patient

that underwent successful correction? What is the amount of time

that the KAFO is worn and how often are adjustments made? How many

different KAFO's are needed for treatment (is it adjustable the

entire time, or do different pieces need to be molded as time goes

by)?

What bracing is prescribed post-correction, or is this brace designed

to be worn for years to maintain correction?

Sorry for all the questions, but I hope you can provide us with some

more information about your program and how it specifically strives

to follow the Ponseti method of correction.

Thank you,

(mother of , dob 3-16-00, left clubfoot)

> My name is Chad Braley, and I am the manager of research and

> development at AtlanticProCare, a Prosthetics and Orthotics service

> provider in portland ME. We have currently been funded by the

> National Science Foundation to do research on a new alternative for

> conservative treatment of club feet and other lower extremity

> deformities. The orthosis is a simple, easy to wear, removable

> orthosis that allows for natural mobility and ambulation. The goal

> of this orthosis is to combine the positive aspects of casting

> (Correct positioning) without the drawbacks (non-removable,

limiting

> of mobility, and emotional trauma). We have had over a 98% success

> rate with this orthosis, and we are currently looking for intrested

> parents and children to add to our study. For more information:

>

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

>

> or email me directly: csb@a...

>

> or contact our office directly:

>

> and I will be glad to answer any questions or concerns that you

> would have. We are currently working with the mothers of the

> children that we have already fit to be available to contact or

> discuss the use of the orthosis

>

> Thanks

> chad

[Guest guest]

Who the hell is this guy and what's he doing on here thinking we're just going

to jump ship and use his new gadget because he says it's good?

s.

My name is Chad Braley, and I am the manager of research and

development at AtlanticProCare, a Prosthetics and Orthotics service

provider in portland ME. We have currently been funded by the

National Science Foundation to do research on a new alternative for

conservative treatment of club feet and other lower extremity

deformities. The orthosis is a simple, easy to wear, removable

orthosis that allows for natural mobility and ambulation. The goal

of this orthosis is to combine the positive aspects of casting

(Correct positioning) without the drawbacks (non-removable, limiting

of mobility, and emotional trauma). We have had over a 98% success

rate with this orthosis, and we are currently looking for intrested

parents and children to add to our study. For more information:

http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

or email me directly: csb@...

or contact our office directly:

and I will be glad to answer any questions or concerns that you

would have. We are currently working with the mothers of the

children that we have already fit to be available to contact or

discuss the use of the orthosis

Thanks

chad

[Guest guest]

HA! Go get 'em ! I had a question I didn't see you specifically

address. The guy speaks f of club feet and other lower extremity , and his 98%

success rate. How many of these children included in that 98% were clubfooted?

Was that positional club feet or congenital? Has there been any follow up

studies to prove the effectiveness over the long haul?

s.

Re: Alternative Conservative Treatment

Chad,

I would like for you to share more information about your brace with

the group. I read the brief article that you included in the link,

and you specifically mention that you are trying to emulate the

Ponseti method of casting. I am a bit skeptical that a brace can

provide the same correction as a plaster cast, so I hope you'll share

some more technical information with this group. Even though most of

us on this board are not in the medical field, many of us have

learned a lot about the dynamics of clubfoot and can follow detailed

technical information. Are there Ponseti trained doctors providing

input on this program? Are they listed on Dr. Ponseti's website

as " qualified " doctors? What does the KAFO look like? Do you have

pictures that you can share? How does the KAFO mold to the foot to

hold the bones in the proper position? (this is the reason that most

doctors use plaster over fiberglass- for the molding advantages)

Is there a concern with the brace being removable that a parent would

leave it off too long so the foot would regress (the bones would

move), then when they would try to put the brace back on it might

cause issues? How often do the children kick the brace off, or have

it move/slip so that it's not on correctly?

You state that you've had 98% success with the brace so far...what is

the definition of " success " and how many cases make up the 98%? What

are the age ranges of the children that you've been treating, and

have any of them had prior treatment? How old is your oldest patient

that underwent successful correction? What is the amount of time

that the KAFO is worn and how often are adjustments made? How many

different KAFO's are needed for treatment (is it adjustable the

entire time, or do different pieces need to be molded as time goes

by)?

What bracing is prescribed post-correction, or is this brace designed

to be worn for years to maintain correction?

Sorry for all the questions, but I hope you can provide us with some

more information about your program and how it specifically strives

to follow the Ponseti method of correction.

Thank you,

(mother of , dob 3-16-00, left clubfoot)

> My name is Chad Braley, and I am the manager of research and

> development at AtlanticProCare, a Prosthetics and Orthotics service

> provider in portland ME. We have currently been funded by the

> National Science Foundation to do research on a new alternative for

> conservative treatment of club feet and other lower extremity

> deformities. The orthosis is a simple, easy to wear, removable

> orthosis that allows for natural mobility and ambulation. The goal

> of this orthosis is to combine the positive aspects of casting

> (Correct positioning) without the drawbacks (non-removable,

limiting

> of mobility, and emotional trauma). We have had over a 98% success

> rate with this orthosis, and we are currently looking for intrested

> parents and children to add to our study. For more information:

>

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

>

> or email me directly: csb@a...

>

> or contact our office directly:

>

> and I will be glad to answer any questions or concerns that you

> would have. We are currently working with the mothers of the

> children that we have already fit to be available to contact or

> discuss the use of the orthosis

>

> Thanks

> chad

[Guest guest]

I must admit, my reaction is similar to the " what the &^%*? " response

to this message. I fear for the children of people who are part of

the trials on this. I wonder if we should get on their advertised

chat site to see what those people are experiencing. I do not agree

with their description of the terrible casts--makes it sound like

we've been torturing our kids. They say the KDAFO is low-cost,

effective and conservative. Hmmmm...sortof like casting!? And we

KNOW the casting works.

That said, we all have experienced or know of closed minded

individuals/doctors who will not even stop to listen to a non-

invasive technique and I refuse to be one of those. I'd really like

to know about this new treatment, armed with what we know and believe

about the true Ponseti approach. At least they say this on their

website: " Surgical interventions often lead to distortion to

appropriate biomechanical alignment and impair full function later in

the patient's life. "

> My name is Chad Braley, and I am the manager of research and

> development at AtlanticProCare, a Prosthetics and Orthotics service

> provider in portland ME. We have currently been funded by the

> National Science Foundation to do research on a new alternative for

> conservative treatment of club feet and other lower extremity

> deformities. The orthosis is a simple, easy to wear, removable

> orthosis that allows for natural mobility and ambulation. The goal

> of this orthosis is to combine the positive aspects of casting

> (Correct positioning) without the drawbacks (non-removable,

limiting

> of mobility, and emotional trauma). We have had over a 98% success

> rate with this orthosis, and we are currently looking for intrested

> parents and children to add to our study. For more information:

>

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

>

> or email me directly: csb@a...

>

> or contact our office directly:

>

> and I will be glad to answer any questions or concerns that you

> would have. We are currently working with the mothers of the

> children that we have already fit to be available to contact or

> discuss the use of the orthosis

>

> Thanks

> chad

[Guest guest]

Hi, folks,

I have received an initial response from Chad Braley. I do not think

he is a member of the group, but I emailed him my letter directly, so

he responded to me. I debated as to whether or not to allow his

original message to post, I did have to physically approve it to let

it show since he wasn't an unmoderated member of the board. I let it

post because I thought it was something that people should be aware

of (another example of a group " claiming " to follow Ponseti, but

based on the knowledge that we all have here, that claim being very

suspect), and I wanted to see if I could get more information about

why they think they are actually following the Ponseti method.

I received a picture of the brace, but he asked that I not post it

because it is patent-pending. I can tell you now based on his

initial response and the picture of the brace that I am highly

skeptical that they are following the method. I emailed him back a

few questions and asked him to review the Global HELP booklet and

explain to me how the brace accomplishes the same gradual positioning

of the foot (they only use one brace at the beginning and then

another once " neutral " is achieved). I want to post both of his

responses together, so if he responds to me tomorrow, I'll post it

all for you.

No need to hash it out on the board- I'm pretty sure that they're not

using the P method, but I'm trying to get them to prove to me

otherwise first. Oh, and there was a sample before and after picture

of a patient of theirs- the foot was clubbed, but not " extreme " and

the after picture stated that it was 4 months later. This foot would

have needed maybe 4 Ponseti casts........which certainly would not

have taken 4 months! The after picture did not show the dorsiflexion

of the foot, I don't know how they're addressing that, but I did ask

about tenotomies. Hopefully he'll reply tomorrow.

I'll keep the list updated.

Regards,

[Guest guest]

AFO's and KAFO's are expensive. Everyone knows that. Unless this is an

inexpensive kind... They're $1500-$2500 each. I want to know how these

are inexpensive, and what constitutes inexpensive?

What we do know is... the KAFO (knee ankle foot orthotic) as per Dr.

Ponseti doesn't provide the mobility for the ankle and calves that the DBB

does, thus causing some atrophy and no strengthening of the leg muscles

like the DBB. Just because it's bent at the knee mimicking the casts

doesn't mean it's appropriate.

I read this website again and it looks like they're *correcting* with this

DKAFO? What does the D stand for? I'd like to see a picture too.

And how can they call the success rate at 98% if these are new? We also

know that clubfoot wants to relapse. Unless these children have been in

this brace past the 5th year growth spurt they don't know the success at all.

And apparently they have NOT contacted Dr. Ponseti about this for his

opinion. Or maybe they have? And if they have... we all know he's not on

board since they make no mention of him other than *Ponseti like* on their

website.

We absolutely need more information. Pictures even.

No, even if I want to be fair... I'm not going to try this with my daughter.

Kori

At 01:59 PM 9/20/2004, you wrote:

>I must admit, my reaction is similar to the " what the &^%*? " response

>to this message. I fear for the children of people who are part of

>the trials on this. I wonder if we should get on their advertised

>chat site to see what those people are experiencing. I do not agree

>with their description of the terrible casts--makes it sound like

>we've been torturing our kids. They say the KDAFO is low-cost,

>effective and conservative. Hmmmm...sortof like casting!? And we

>KNOW the casting works.

>

>That said, we all have experienced or know of closed minded

>individuals/doctors who will not even stop to listen to a non-

>invasive technique and I refuse to be one of those. I'd really like

>to know about this new treatment, armed with what we know and believe

>about the true Ponseti approach. At least they say this on their

>website: " Surgical interventions often lead to distortion to

>appropriate biomechanical alignment and impair full function later in

>the patient's life. "

>

>

>

>

>

> > My name is Chad Braley, and I am the manager of research and

> > development at AtlanticProCare, a Prosthetics and Orthotics service

> > provider in portland ME. We have currently been funded by the

> > National Science Foundation to do research on a new alternative for

> > conservative treatment of club feet and other lower extremity

> > deformities. The orthosis is a simple, easy to wear, removable

> > orthosis that allows for natural mobility and ambulation. The goal

> > of this orthosis is to combine the positive aspects of casting

> > (Correct positioning) without the drawbacks (non-removable,

>limiting

> > of mobility, and emotional trauma). We have had over a 98% success

> > rate with this orthosis, and we are currently looking for intrested

> > parents and children to add to our study. For more information:

> >

> > http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

> >

> > or email me directly: csb@a...

> >

> > or contact our office directly:

> >

> > and I will be glad to answer any questions or concerns that you

> > would have. We are currently working with the mothers of the

> > children that we have already fit to be available to contact or

> > discuss the use of the orthosis

> >

> > Thanks

> > chad

>

>

>

>

>

[Guest guest]

Kori,

I'm with ya! I wouldn't try this on my own child for anything. But,

like said, I'd like to be informed about it. If it isn't

appropriate treatment (and it sounds like it's not), it'd be good to

be able to explain why not to other parents. It freaks me out that

people are signed up for it! Upon looking more carefully, I see that

the chat groups are not for the cf people but for other orthotic

treatments. Too bad. I'd like to hear what the parents are thinking

about their chosen treatment.

> > > My name is Chad Braley, and I am the manager of research and

> > > development at AtlanticProCare, a Prosthetics and Orthotics

service

> > > provider in portland ME. We have currently been funded by the

> > > National Science Foundation to do research on a new alternative

for

> > > conservative treatment of club feet and other lower extremity

> > > deformities. The orthosis is a simple, easy to wear, removable

> > > orthosis that allows for natural mobility and ambulation. The

goal

> > > of this orthosis is to combine the positive aspects of casting

> > > (Correct positioning) without the drawbacks (non-removable,

> >limiting

> > > of mobility, and emotional trauma). We have had over a 98%

success

> > > rate with this orthosis, and we are currently looking for

intrested

> > > parents and children to add to our study. For more information:

> > >

> > > http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

> > >

> > > or email me directly: csb@a...

> > >

> > > or contact our office directly:

> > >

> > > and I will be glad to answer any questions or concerns that you

> > > would have. We are currently working with the mothers of the

> > > children that we have already fit to be available to contact or

> > > discuss the use of the orthosis

> > >

> > > Thanks

> > > chad

> >

> >

> >

> >

> >

[Guest guest]

I keep picturing an " external fixator " type thing. Why is there no picture

of this thing on that site? Not that I would EVER!

And boy do you have a good point! What could be cheaper than a plaster ????

Why fix something that isn't broken??

Mommy to 12/17/98

and Christian 1/30/04

_____

From: shelleylapp

Sent: Monday, September 20, 2004 5:00 PM

To: nosurgery4clubfoot

Subject: Re: Alternative Conservative Treatment

I must admit, my reaction is similar to the " what the &^%*? " response

to this message. I fear for the children of people who are part of

the trials on this. I wonder if we should get on their advertised

chat site to see what those people are experiencing. I do not agree

with their description of the terrible casts--makes it sound like

we've been torturing our kids. They say the KDAFO is low-cost,

effective and conservative. Hmmmm...sortof like casting!? And we

KNOW the casting works.

That said, we all have experienced or know of closed minded

individuals/doctors who will not even stop to listen to a non-

invasive technique and I refuse to be one of those. I'd really like

to know about this new treatment, armed with what we know and believe

about the true Ponseti approach. At least they say this on their

website: " Surgical interventions often lead to distortion to

appropriate biomechanical alignment and impair full function later in

the patient's life. "

> My name is Chad Braley, and I am the manager of research and

> development at AtlanticProCare, a Prosthetics and Orthotics service

> provider in portland ME. We have currently been funded by the

> National Science Foundation to do research on a new alternative for

> conservative treatment of club feet and other lower extremity

> deformities. The orthosis is a simple, easy to wear, removable

> orthosis that allows for natural mobility and ambulation. The goal

> of this orthosis is to combine the positive aspects of casting

> (Correct positioning) without the drawbacks (non-removable,

limiting

> of mobility, and emotional trauma). We have had over a 98% success

> rate with this orthosis, and we are currently looking for intrested

> parents and children to add to our study. For more information:

>

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

>

> or email me directly: csb@a...

>

> or contact our office directly:

>

> and I will be glad to answer any questions or concerns that you

> would have. We are currently working with the mothers of the

> children that we have already fit to be available to contact or

> discuss the use of the orthosis

>

> Thanks

> chad

[Guest guest]

Ok my questions about this are, will they be refitted every week? I

wouldn't think that would be very cost effective. How do they

differ from the afo's, which we know does now work? I think that

instead of trying to come up with a new method of correcting they

should try to work on the tools to keep them corrected. Just my

opinion.

Tyler's mommy

bi-lateral atypical cf 1/14/03

new brace 9/9/04

4/12/94 non cf

5/24/95 non cf

> > > > My name is Chad Braley, and I am the manager of research and

> > > > development at AtlanticProCare, a Prosthetics and Orthotics

> service

> > > > provider in portland ME. We have currently been funded by the

> > > > National Science Foundation to do research on a new

alternative

> for

> > > > conservative treatment of club feet and other lower extremity

> > > > deformities. The orthosis is a simple, easy to wear,

removable

> > > > orthosis that allows for natural mobility and ambulation.

The

> goal

> > > > of this orthosis is to combine the positive aspects of

casting

> > > > (Correct positioning) without the drawbacks (non-removable,

> > >limiting

> > > > of mobility, and emotional trauma). We have had over a 98%

> success

> > > > rate with this orthosis, and we are currently looking for

> intrested

> > > > parents and children to add to our study. For more

information:

> > > >

> > > >

http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

> > > >

> > > > or email me directly: csb@a...

> > > >

> > > > or contact our office directly:

> > > >

> > > > and I will be glad to answer any questions or concerns that

you

> > > > would have. We are currently working with the mothers of the

> > > > children that we have already fit to be available to contact

or

> > > > discuss the use of the orthosis

> > > >

> > > > Thanks

> > > > chad

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Certainly, you make good points. I think his approach was a little too strong

or something - just out of left field there. But then those of us whove been

through bad treatments are maybe more touchy about trying something else once we

have found a method that does work.

s.

Re: Alternative Conservative Treatment

I must admit, my reaction is similar to the " what the &^%*? " response

to this message. I fear for the children of people who are part of

the trials on this. I wonder if we should get on their advertised

chat site to see what those people are experiencing. I do not agree

with their description of the terrible casts--makes it sound like

we've been torturing our kids. They say the KDAFO is low-cost,

effective and conservative. Hmmmm...sortof like casting!? And we

KNOW the casting works.

That said, we all have experienced or know of closed minded

individuals/doctors who will not even stop to listen to a non-

invasive technique and I refuse to be one of those. I'd really like

to know about this new treatment, armed with what we know and believe

about the true Ponseti approach. At least they say this on their

website: " Surgical interventions often lead to distortion to

appropriate biomechanical alignment and impair full function later in

the patient's life. "

> My name is Chad Braley, and I am the manager of research and

> development at AtlanticProCare, a Prosthetics and Orthotics service

> provider in portland ME. We have currently been funded by the

> National Science Foundation to do research on a new alternative for

> conservative treatment of club feet and other lower extremity

> deformities. The orthosis is a simple, easy to wear, removable

> orthosis that allows for natural mobility and ambulation. The goal

> of this orthosis is to combine the positive aspects of casting

> (Correct positioning) without the drawbacks (non-removable,

limiting

> of mobility, and emotional trauma). We have had over a 98% success

> rate with this orthosis, and we are currently looking for intrested

> parents and children to add to our study. For more information:

>

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

>

> or email me directly: csb@a...

>

> or contact our office directly:

>

> and I will be glad to answer any questions or concerns that you

> would have. We are currently working with the mothers of the

> children that we have already fit to be available to contact or

> discuss the use of the orthosis

>

> Thanks

> chad

[Guest guest]

Thanks jenny I'm real anxious to hear more.

s.

Re: Alternative Conservative Treatment

Hi, folks,

I have received an initial response from Chad Braley. I do not think

he is a member of the group, but I emailed him my letter directly, so

he responded to me. I debated as to whether or not to allow his

original message to post, I did have to physically approve it to let

it show since he wasn't an unmoderated member of the board. I let it

post because I thought it was something that people should be aware

of (another example of a group " claiming " to follow Ponseti, but

based on the knowledge that we all have here, that claim being very

suspect), and I wanted to see if I could get more information about

why they think they are actually following the Ponseti method.

I received a picture of the brace, but he asked that I not post it

because it is patent-pending. I can tell you now based on his

initial response and the picture of the brace that I am highly

skeptical that they are following the method. I emailed him back a

few questions and asked him to review the Global HELP booklet and

explain to me how the brace accomplishes the same gradual positioning

of the foot (they only use one brace at the beginning and then

another once " neutral " is achieved). I want to post both of his

responses together, so if he responds to me tomorrow, I'll post it

all for you.

No need to hash it out on the board- I'm pretty sure that they're not

using the P method, but I'm trying to get them to prove to me

otherwise first. Oh, and there was a sample before and after picture

of a patient of theirs- the foot was clubbed, but not " extreme " and

the after picture stated that it was 4 months later. This foot would

have needed maybe 4 Ponseti casts........which certainly would not

have taken 4 months! The after picture did not show the dorsiflexion

of the foot, I don't know how they're addressing that, but I did ask

about tenotomies. Hopefully he'll reply tomorrow.

I'll keep the list updated.

Regards,

[Guest guest]

> > > > > My name is Chad Braley, and I am the manager of research

and

> > > > > development at AtlanticProCare, a Prosthetics and

Orthotics

> > service

> > > > > provider in portland ME. We have currently been funded by

the

> > > > > National Science Foundation to do research on a new

> alternative

> > for

> > > > > conservative treatment of club feet and other lower

extremity

> > > > > deformities. The orthosis is a simple, easy to wear,

> removable

> > > > > orthosis that allows for natural mobility and ambulation.

> The

> > goal

> > > > > of this orthosis is to combine the positive aspects of

> casting

> > > > > (Correct positioning) without the drawbacks (non-removable,

> > > >limiting

> > > > > of mobility, and emotional trauma). We have had over a 98%

> > success

> > > > > rate with this orthosis, and we are currently looking for

> > intrested

> > > > > parents and children to add to our study. For more

> information:

> > > > >

> > > > >

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

> > > > >

> > > > > or email me directly: csb@a...

> > > > >

> > > > > or contact our office directly:

> > > > >

> > > > > and I will be glad to answer any questions or concerns

that

> you

> > > > > would have. We are currently working with the mothers of

the

> > > > > children that we have already fit to be available to

contact

> or

> > > > > discuss the use of the orthosis

> > > > >

> > > > > Thanks

> > > > > chad

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Really, the correction is the easy part in my opinion, the maintenance is the

hard part.

s.

Re: Alternative Conservative Treatment

Ok my questions about this are, will they be refitted every week? I

wouldn't think that would be very cost effective. How do they

differ from the afo's, which we know does now work? I think that

instead of trying to come up with a new method of correcting they

should try to work on the tools to keep them corrected. Just my

opinion.

Tyler's mommy

bi-lateral atypical cf 1/14/03

new brace 9/9/04

4/12/94 non cf

5/24/95 non cf

> > > > My name is Chad Braley, and I am the manager of research and

> > > > development at AtlanticProCare, a Prosthetics and Orthotics

> service

> > > > provider in portland ME. We have currently been funded by the

> > > > National Science Foundation to do research on a new

alternative

> for

> > > > conservative treatment of club feet and other lower extremity

> > > > deformities. The orthosis is a simple, easy to wear,

removable

> > > > orthosis that allows for natural mobility and ambulation.

The

> goal

> > > > of this orthosis is to combine the positive aspects of

casting

> > > > (Correct positioning) without the drawbacks (non-removable,

> > >limiting

> > > > of mobility, and emotional trauma). We have had over a 98%

> success

> > > > rate with this orthosis, and we are currently looking for

> intrested

> > > > parents and children to add to our study. For more

information:

> > > >

> > > >

http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

> > > >

> > > > or email me directly: csb@a...

> > > >

> > > > or contact our office directly:

> > > >

> > > > and I will be glad to answer any questions or concerns that

you

> > > > would have. We are currently working with the mothers of the

> > > > children that we have already fit to be available to contact

or

> > > > discuss the use of the orthosis

> > > >

> > > > Thanks

> > > > chad

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Chad,

Welcome to our group.

I am interested in learning about your groups new DKAFO. As you may

realize, regular AFO's and KAFO's are not used in the Ponseti

method. The U of Iowa had tried some in the 1980's when Dr. Ponseti

was in temporary retirement. They found that the rates of relapsing

were not as good when the AFO/KAFO type of system was used.

has indicated an information link from the Global HELP booklet that

explains a little about why the regular AFO/KAFO versions don't

work. But it would be interesting to see the concept behind what

your group is doing. I would like to pose some questions as well as

make some suggestions.

There have occasionally been other splint types of devises designed

to help with clubfoot correction and it is interesting to see if

they may be able to be of help. About 5 years ago, I came across a

group that had developed the CRS Langer Splint (counter rotation

system). I thought that it seemed like an interesting concept and

so I bought one to see how it worked. After getting it, I could see

why it would not work for the Ponseti method. In the meantime, one

of the paediatric orthopedic doctors who had helped to develop it

changed over to the Ponseti method about 2-3 years ago. I don't

think that it is available anymore in the U.S. But the U.K. website

of Langer still shows the CRS system.

http://www.lbguk.com/incidntls.htm

http://www.langerbiomechanics.com/

Since your group is located in Portland, Maine; do you have a group

of doctors elsewhere who are utilizing your method. From the POSNA

website which lists most but not all of the Ped Orthos in the U.S.,

there are 3 ped orthos in Bangor, Maine which is 125 miles North of

you, 3 in Concord N.H. (100 miles southwest) and 25 ped orthos in

Boston which is also 100 miles south. You had mentioned that you

had 3 ped orthos who are utilizing this modification of the Ponseti

method. Are they in one of these groups?

http://www.posna.org/index

As a comment about your web site information, you state: " Current

conservative treatments are often problematic in terms of compliance

and efficacy, often resulting in corrective surgery. " That may be

true in many other conservative methods, but not according to

studies done on the Ponseti method where the rate of Posterior

release surgeries is less than 5%

http://pediatrics.aappublications.org/cgi/content/abstract/113/2/376

Your site also mentions that " Existing braces do not provide

necessary physical manipulation and are often resented by the child

and the family. " While the FAB/DBB can be a bit challenging at

times, I think that the physical manipulation provided seemed

reasonable to us, especially considering the very good 40 year long

term outcome studies. Can you provide us with information on the

studies that have been done with your method, the rates of short and

long term relapses and longer term outcomes?

You mention that the DKAFO is low cost. Can you tell us what the

costs of the treatment and DKAFO's would be in your system.

Thanks for providing us information on your DKAFO treatment system.

and (3-17-99)

> My name is Chad Braley, and I am the manager of research and

> development at AtlanticProCare, a Prosthetics and Orthotics

service

> provider in portland ME. We have currently been funded by the

> National Science Foundation to do research on a new alternative

for

> conservative treatment of club feet and other lower extremity

> deformities. The orthosis is a simple, easy to wear, removable

> orthosis that allows for natural mobility and ambulation. The goal

> of this orthosis is to combine the positive aspects of casting

> (Correct positioning) without the drawbacks (non-removable,

limiting

> of mobility, and emotional trauma). We have had over a 98% success

> rate with this orthosis, and we are currently looking for

intrested

> parents and children to add to our study. For more information:

>

> http://www.atlanticprocare.com/whats_new_at_atlanticprocare.html

>

> or email me directly: csb@a...

>

> or contact our office directly:

>

> and I will be glad to answer any questions or concerns that you

> would have. We are currently working with the mothers of the

> children that we have already fit to be available to contact or

> discuss the use of the orthosis

>

> Thanks

> chad

[Guest guest]

We wanted to say thank you for all the responses from you and your

group. It was wonderful hearing from so many obviously concerned

and proactive people. It is apparent from the tone of many of the

responses that there is both a certain amount of disbelief about

our " claims " and that Dr. Ponseti has a very strong following in

your group. While the Ponseti method is certainly an outstanding

advancement over earlier treatments, our orthosis represents a new

direction in the treatment of clubfoot and ITT that builds on his

work and we have dozens and dozens of parents who will tell you that

the results have exceeded all expectations.

The orthosis that we have developed is the direct result of our

frustration with the inadequacies of traditional bracing and

surgical options. It sounds like we all agree that neither approach

offers ideal outcomes. Once the original concept was conceived we

worked for two years with a wide range of infants and young children

to develop and refine an orthosis that would combine the best

features of the stretching and casting techniques currently in use

while avoiding the pitfalls and discomfort of traditional bracing

(or the pain and deformities associated with surgery). Our goal was

to develop an orthosis that would ultimately replace surgery for

many children and provide a low cost alternative to serial casting

and subsequent orthotic management. We are running clinical trials

on the product of this research. Success, parent satisfaction and

patient compliance have been phenomenal and we have high hopes that

we may ultimately be able to offer an alternative to parents and

orthopedists that is actually an improvement over current

protocols.

Although the specific design of the orthosis must remain proprietary

at this time (while awaiting patent protection) I wanted to provide

responses to some of the concerns raised by your group:

1) This is not the Poinsettia method. Although I am very

familiar with this technique and applaud his pioneering work, my

intent is to incorporate what is correct about that method and

utilize those principles in a different way.

2) The orthosis incorporates ongoing, full time, stretching of

the foot and lower extremity that allows for gentle, gradual change

as though someone were actively manipulating the foot all of the

time.

3) The orthosis is removable to allow for ongoing inspection of

the skin and to avoid infection and tissue breakdown as occurs

occasionally with casting.

4) Depending on growth we find that typically the initial

positioning orthosis continues to fit appropriately during the first

several weeks and that there is then a transition to a dynamic

correctional orthosis that is outgrown every 3-4 months during the

first year and every 4-6 months during later years. (The design of

the orthosis allows for volume changes in the limb as well as long

bone growth.)

5) Donning, positioning and patient compliance have been

exceptional: one of the strongest attributes of this brace is that

is allows for movement of the lower extremity in all three planes,

which is critical to acceptance. We find that even donning the

orthosis for first time infants can comfortably tolerate 3-4 n-m of

rotational force without discomfort, often they appear to not

even " notice " the orthosis. There is also a built in sensory

feedback that encourages relaxing into the corrected position that

appears to assist in the children's acceptance.

6) Long term follow up data is not yet available as we have only

been working with children for 2 years but we have several children

who have relapsed following casting or surgery and who have

therefore required renewed treatment at age 2 to 2 1/2 . These

children have done very well with nighttime wear of the orthosis

(limited ambulation is possible in the brace). I have treated

children as old as 4.

7) The beauty about trialing this orthosis is that we have

ongoing inspection of the foot and at any time the treatment can

revert to other modalities if so desired.

We commend you all on taking such an active role in your

children's care, too often people are afraid to challenge the status

quo, particularly in medicine. Please know that we are on the same

page as regards that: we have suffered through " traditional "

treatments with too many wonderful kids and worked with to many

crippled adults not to want to do every thing possible to advance

the treatment of this problem. That is the motivation for this

research. I hope that if any one is interested in being considered

for this clinical trial that they will contact us so that we can

arrange an appointment to discuss specifics in greater depth. Thank

you again for your time and interest.

[Guest guest]

We wanted to say thank you for all the responses from you and your

group. It was wonderful hearing from so many obviously concerned

and proactive people. It is apparent from the tone of many of the

responses that there is both a certain amount of disbelief about

our " claims " and that Dr. Ponseti has a very strong following in

your group. While the Ponseti method is certainly an outstanding

advancement over earlier treatments, our orthosis represents a new

direction in the treatment of clubfoot and ITT that builds on his

work and we have dozens and dozens of parents who will tell you that

the results have exceeded all expectations.

The orthosis that we have developed is the direct result of our

frustration with the inadequacies of traditional bracing and

surgical options. It sounds like we all agree that neither approach

offers ideal outcomes. Once the original concept was conceived we

worked for two years with a wide range of infants and young children

to develop and refine an orthosis that would combine the best

features of the stretching and casting techniques currently in use

while avoiding the pitfalls and discomfort of traditional bracing

(or the pain and deformities associated with surgery). Our goal was

to develop an orthosis that would ultimately replace surgery for

many children and provide a low cost alternative to serial casting

and subsequent orthotic management. We are running clinical trials

on the product of this research. Success, parent satisfaction and

patient compliance have been phenomenal and we have high hopes that

we may ultimately be able to offer an alternative to parents and

orthopedists that is actually an improvement over current

protocols.

Although the specific design of the orthosis must remain proprietary

at this time (while awaiting patent protection) I wanted to provide

responses to some of the concerns raised by your group:

1) This is not the Poinsettia method. Although I am very

familiar with this technique and applaud his pioneering work, my

intent is to incorporate what is correct about that method and

utilize those principles in a different way.

2) The orthosis incorporates ongoing, full time, stretching of

the foot and lower extremity that allows for gentle, gradual change

as though someone were actively manipulating the foot all of the

time.

3) The orthosis is removable to allow for ongoing inspection of

the skin and to avoid infection and tissue breakdown as occurs

occasionally with casting.

4) Depending on growth we find that typically the initial

positioning orthosis continues to fit appropriately during the first

several weeks and that there is then a transition to a dynamic

correctional orthosis that is outgrown every 3-4 months during the

first year and every 4-6 months during later years. (The design of

the orthosis allows for volume changes in the limb as well as long

bone growth.)

5) Donning, positioning and patient compliance have been

exceptional: one of the strongest attributes of this brace is that

is allows for movement of the lower extremity in all three planes,

which is critical to acceptance. We find that even donning the

orthosis for first time infants can comfortably tolerate 3-4 n-m of

rotational force without discomfort, often they appear to not

even " notice " the orthosis. There is also a built in sensory

feedback that encourages relaxing into the corrected position that

appears to assist in the children's acceptance.

6) Long term follow up data is not yet available as we have only

been working with children for 2 years but we have several children

who have relapsed following casting or surgery and who have

therefore required renewed treatment at age 2 to 2 1/2 . These

children have done very well with nighttime wear of the orthosis

(limited ambulation is possible in the brace). I have treated

children as old as 4.

7) The beauty about trialing this orthosis is that we have

ongoing inspection of the foot and at any time the treatment can

revert to other modalities if so desired.

We commend you all on taking such an active role in your

children's care, too often people are afraid to challenge the status

quo, particularly in medicine. Please know that we are on the same

page as regards that: we have suffered through " traditional "

treatments with too many wonderful kids and worked with to many

crippled adults not to want to do every thing possible to advance

the treatment of this problem. That is the motivation for this

research. I hope that if any one is interested in being considered

for this clinical trial that they will contact us so that we can

arrange an appointment to discuss specifics in greater depth. Thank

you again for your time and interest.

[Guest guest]

Chad-

I could discuss quite a bit with you about your entire response, but

I would like to highlight this point in particular as I think it's

most important in relationship to this particular board:

1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.

My definition of what is " correct " about the Ponseti method is the

way that the components of the foot are moved in a certain order that

allows the correction to take place. Is this also your thinking?

Can one molded thermoplastic brace accomplish this? I would think

that you would need a new brace every week in the first weeks of

treatment just as the casts are changed weekly. If following the

Ponseti principals, the direction of the pressure points placed on

the foot would need to change at each session, correct? If you can

tell us that your brace is facilitating this step-by-step process

(outlined in that Global-HELP booklet), then it might be agreed that

you are using the " foundation " of the Ponseti method in your

approach, or what is " correct " about the Ponseti method. Otherwise,

it just might be advisable to remove the reference to the Ponseti

method from your website, because at this point, I don't see the

correlation between what you've stated about your method of

correction and what is " correct " about the P method.

Please don't take any of the posts here the wrong way. You've

approached a group who believes that the Ponseti method is the best

way to treat clubfoot, and we've found very little in the way

of " flaws " that need to be fixed. The method when applied properly,

including the post-correction bracing is pain-free and not at all

traumatic on the child. He has over 50 years of data (and patients

with fully functional and pain free feet) to back up his entire

approach to correcting the deformity and preventing regression. One

of the biggest frustrations that our group faces is the fact

that " Ponseti " has become a buzzword, and doctors will tell parents

that this is what their child is getting....when, in fact, they are

not. This is where you will potentially come " under fire " . The

method, when applied as developed by Dr. P and colleagues, is nearly

100% successful in correcting the foot.

I am not doubting your results or your work, and I think it's

commendable that you are working to help the children. I just don't

think it's fair that you imply on your site that the Ponseti method

is being utilized if you're really not following the fundamentals of

the method- it's not just " stretching the foot to neutral " like the

Kite method. From what I've gleaned thus far, perhaps your brace

design would be a good alternative to the current FAB for post-

correction bracing, though I'm not sure that it would be as cost-

effective since children grow so much up until age 5 and the FAB is

relatively inexpensive.

Thanks for the interesting conversation- I hope you'll take the time

to answer again.....

Regards,

('s mom)

[Guest guest]

Chad-

I could discuss quite a bit with you about your entire response, but

I would like to highlight this point in particular as I think it's

most important in relationship to this particular board:

1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.

My definition of what is " correct " about the Ponseti method is the

way that the components of the foot are moved in a certain order that

allows the correction to take place. Is this also your thinking?

Can one molded thermoplastic brace accomplish this? I would think

that you would need a new brace every week in the first weeks of

treatment just as the casts are changed weekly. If following the

Ponseti principals, the direction of the pressure points placed on

the foot would need to change at each session, correct? If you can

tell us that your brace is facilitating this step-by-step process

(outlined in that Global-HELP booklet), then it might be agreed that

you are using the " foundation " of the Ponseti method in your

approach, or what is " correct " about the Ponseti method. Otherwise,

it just might be advisable to remove the reference to the Ponseti

method from your website, because at this point, I don't see the

correlation between what you've stated about your method of

correction and what is " correct " about the P method.

Please don't take any of the posts here the wrong way. You've

approached a group who believes that the Ponseti method is the best

way to treat clubfoot, and we've found very little in the way

of " flaws " that need to be fixed. The method when applied properly,

including the post-correction bracing is pain-free and not at all

traumatic on the child. He has over 50 years of data (and patients

with fully functional and pain free feet) to back up his entire

approach to correcting the deformity and preventing regression. One

of the biggest frustrations that our group faces is the fact

that " Ponseti " has become a buzzword, and doctors will tell parents

that this is what their child is getting....when, in fact, they are

not. This is where you will potentially come " under fire " . The

method, when applied as developed by Dr. P and colleagues, is nearly

100% successful in correcting the foot.

I am not doubting your results or your work, and I think it's

commendable that you are working to help the children. I just don't

think it's fair that you imply on your site that the Ponseti method

is being utilized if you're really not following the fundamentals of

the method- it's not just " stretching the foot to neutral " like the

Kite method. From what I've gleaned thus far, perhaps your brace

design would be a good alternative to the current FAB for post-

correction bracing, though I'm not sure that it would be as cost-

effective since children grow so much up until age 5 and the FAB is

relatively inexpensive.

Thanks for the interesting conversation- I hope you'll take the time

to answer again.....

Regards,

('s mom)

[Guest guest]

Chad,

Please don't take me wrong here. I am going to be very blunt, but

this is not meant to be unkind. You have to understand that I feel you are

attempting to instill false hope into us by discreetly marketing your product

here.

I am for supporting medical research, but I don't feel like that is your

main motive.

In a message dated 9/21/2004 3:34:51 PM Eastern Daylight Time,

csb@... writes:

> " we have dozens and dozens of parents who will tell you that

> the results have exceeded all expectations. "

I would like to hear from these parents.

Although 's brace is also patent pending, he is not

afraid to share. He wants to help as many people as possible. Your consistent

protection of your design leads me to believe that money is your main motive

here. Is it? Are you hunting potential customers? That is not what we are

here

for. If you really thought you could help us wouldn't you want to convince us?

Isn't the best way to do that to let us see what you have come up with? To

give us actual medical facts in medical terms? Are you afraid we will " steal "

your million dollar idea or something? Or are you afraid that if we see the

brace we will know that it doesn't do all you say it will?

All I am hearing are some VERY VAGUE answers that seem to skirt the

real questions. You say its better, it allows visual inspection of the

extremity, movement on all 3 planes, utilizes sensory feedback, works as though

there

was continuous manipulation and is more cost effective than the FAB while

following the principles of the Ponseti Method.

It sounds like a marketing pitch to me and yet you still have not explained

how your brace manages to do all of these things. I don't believe anyone asked

what it did. I think the main question was HOW it did it. You never even

answered the most basic of questions which was how many people are in the trial

to make up your percentages of success? Come on, do you take us for gullible

idiots? You won't win anyone here on just your word unless you can present

concrete facts. No one cares what you say it does unless you can tell us how,

that's not just not objective enough for this group.

You also wrote:

" The orthosis that we have developed is the direct result of our

frustration with the inadequacies of traditional bracing and

surgical options.  It sounds like we all agree that neither approach

offers ideal outcomes.  "

I don't know who " we all " refers to, but personally, I disagree with that

statement wholeheartedly. Ponseti's method does offer a completely ideal

outcome. Children are able to run, walk, skip, play baseball and ballet without

deformity, without difficulty, without surgery and most importantly without

pain.

There is no outcome that could be more ideal than that one.

I look forward to your answer.

Freeman

[Guest guest]

Chad,

You need to realize that many of us had been with prior methods of

treatment before finding out about the Ponseti method. For us, the

use of the Ponseti method was simple in that our sons feet were then

correctly positioned in 2 weeks, then with a 3 week tenotomy cast.

I believe that the initial correction with the Ponseti method is

much quicker than the 4 months you indicate your orthosis takes.

As indicated, we may be a bit more willing to consider an

orthosis that we have not seen and that has no real documented long

term trackrecord if you would submit it to Dr. Ponseti for his

consideration as a retention devise first. I think that Dr. Ponseti

would be glad to review your orthosis and listen to your explanation

as to why it would work.

We are willing to consider that new possibilities may exist for

methods of retention and new methods of treatment, but we are not

willing to encourage new parents to be part of what at this point

could be considered to be somewhat part of an " experiment " . When

you are willing to provide us with photo's of your orthosis and send

one to Dr. Ponseti for him to examine and give his opinion, we will

be more open to discuss it without the wariness that we now have.

Also, in an earlier message, I had asked you some questions that you

had not answered. I would like to ask them again.

Since your group is located in Portland, Maine; do you have a group

of doctors there or elsewhere who are utilizing your method. Or is

your treatment done completely by orthotists without utilizing a

doctor? Can you give us the names and contact information for those

doctors?

From the POSNA website which lists most but not all of the Ped

Orthos in the U.S., there are 3 ped orthos in Bangor, Maine which is

125 miles North of you, 3 in Concord N.H. (100 miles southwest) and

25 ped orthos in Boston which is also 100 miles south. You had

mentioned that you had 3 doctors who are utilizing this modification

of the Ponseti method. Are they in one of these groups?

http://www.posna.org/index

Can you provide us with information on the studies that have been

done with your method, the rates of short and long term relapses and

longer term outcomes? Is there anything published yet by doctors

that we can read on the internet or get elsewhere?

You mentioned that the DKAFO is low cost. Can you tell us what the

costs of the treatment and DKAFO's would be in your system?

Thanks for the information.

and (3-17-99)

> We wanted to say thank you for all the responses from you and your

> group. It was wonderful hearing from so many obviously concerned

> and proactive people. It is apparent from the tone of many of the

> responses that there is both a certain amount of disbelief about

> our " claims " and that Dr. Ponseti has a very strong following in

> your group. While the Ponseti method is certainly an outstanding

> advancement over earlier treatments, our orthosis represents a new

> direction in the treatment of clubfoot and ITT that builds on his

> work and we have dozens and dozens of parents who will tell you

that

> the results have exceeded all expectations.

>

> The orthosis that we have developed is the direct result of our

> frustration with the inadequacies of traditional bracing and

> surgical options. It sounds like we all agree that neither

approach

> offers ideal outcomes. Once the original concept was conceived we

> worked for two years with a wide range of infants and young

children

> to develop and refine an orthosis that would combine the best

> features of the stretching and casting techniques currently in use

> while avoiding the pitfalls and discomfort of traditional bracing

> (or the pain and deformities associated with surgery). Our goal

was

> to develop an orthosis that would ultimately replace surgery for

> many children and provide a low cost alternative to serial casting

> and subsequent orthotic management. We are running clinical

trials

> on the product of this research. Success, parent satisfaction and

> patient compliance have been phenomenal and we have high hopes

that

> we may ultimately be able to offer an alternative to parents and

> orthopedists that is actually an improvement over current

> protocols.

>

> Although the specific design of the orthosis must remain

proprietary

> at this time (while awaiting patent protection) I wanted to

provide

> responses to some of the concerns raised by your group:

>

> 1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.

>

> 2) The orthosis incorporates ongoing, full time, stretching of

> the foot and lower extremity that allows for gentle, gradual

change

> as though someone were actively manipulating the foot all of the

> time.

>

> 3) The orthosis is removable to allow for ongoing inspection

of

> the skin and to avoid infection and tissue breakdown as occurs

> occasionally with casting.

>

> 4) Depending on growth we find that typically the initial

> positioning orthosis continues to fit appropriately during the

first

> several weeks and that there is then a transition to a dynamic

> correctional orthosis that is outgrown every 3-4 months during the

> first year and every 4-6 months during later years. (The design

of

> the orthosis allows for volume changes in the limb as well as long

> bone growth.)

>

> 5) Donning, positioning and patient compliance have been

> exceptional: one of the strongest attributes of this brace is

that

> is allows for movement of the lower extremity in all three planes,

> which is critical to acceptance. We find that even donning the

> orthosis for first time infants can comfortably tolerate 3-4 n-m

of

> rotational force without discomfort, often they appear to not

> even " notice " the orthosis. There is also a built in sensory

> feedback that encourages relaxing into the corrected position that

> appears to assist in the children's acceptance.

>

> 6) Long term follow up data is not yet available as we have

only

> been working with children for 2 years but we have several

children

> who have relapsed following casting or surgery and who have

> therefore required renewed treatment at age 2 to 2 1/2 . These

> children have done very well with nighttime wear of the orthosis

> (limited ambulation is possible in the brace). I have treated

> children as old as 4.

>

> 7) The beauty about trialing this orthosis is that we have

> ongoing inspection of the foot and at any time the treatment can

> revert to other modalities if so desired.

>

> We commend you all on taking such an active role in your

> children's care, too often people are afraid to challenge the

status

> quo, particularly in medicine. Please know that we are on the

same

> page as regards that: we have suffered through " traditional "

> treatments with too many wonderful kids and worked with to many

> crippled adults not to want to do every thing possible to advance

> the treatment of this problem. That is the motivation for this

> research. I hope that if any one is interested in being

considered

> for this clinical trial that they will contact us so that we can

> arrange an appointment to discuss specifics in greater depth.

Thank

> you again for your time and interest.

[Guest guest]

Chad,

You need to realize that many of us had been with prior methods of

treatment before finding out about the Ponseti method. For us, the

use of the Ponseti method was simple in that our sons feet were then

correctly positioned in 2 weeks, then with a 3 week tenotomy cast.

I believe that the initial correction with the Ponseti method is

much quicker than the 4 months you indicate your orthosis takes.

As indicated, we may be a bit more willing to consider an

orthosis that we have not seen and that has no real documented long

term trackrecord if you would submit it to Dr. Ponseti for his

consideration as a retention devise first. I think that Dr. Ponseti

would be glad to review your orthosis and listen to your explanation

as to why it would work.

We are willing to consider that new possibilities may exist for

methods of retention and new methods of treatment, but we are not

willing to encourage new parents to be part of what at this point

could be considered to be somewhat part of an " experiment " . When

you are willing to provide us with photo's of your orthosis and send

one to Dr. Ponseti for him to examine and give his opinion, we will

be more open to discuss it without the wariness that we now have.

Also, in an earlier message, I had asked you some questions that you

had not answered. I would like to ask them again.

Since your group is located in Portland, Maine; do you have a group

of doctors there or elsewhere who are utilizing your method. Or is

your treatment done completely by orthotists without utilizing a

doctor? Can you give us the names and contact information for those

doctors?

From the POSNA website which lists most but not all of the Ped

Orthos in the U.S., there are 3 ped orthos in Bangor, Maine which is

125 miles North of you, 3 in Concord N.H. (100 miles southwest) and

25 ped orthos in Boston which is also 100 miles south. You had

mentioned that you had 3 doctors who are utilizing this modification

of the Ponseti method. Are they in one of these groups?

http://www.posna.org/index

Can you provide us with information on the studies that have been

done with your method, the rates of short and long term relapses and

longer term outcomes? Is there anything published yet by doctors

that we can read on the internet or get elsewhere?

You mentioned that the DKAFO is low cost. Can you tell us what the

costs of the treatment and DKAFO's would be in your system?

Thanks for the information.

and (3-17-99)

> We wanted to say thank you for all the responses from you and your

> group. It was wonderful hearing from so many obviously concerned

> and proactive people. It is apparent from the tone of many of the

> responses that there is both a certain amount of disbelief about

> our " claims " and that Dr. Ponseti has a very strong following in

> your group. While the Ponseti method is certainly an outstanding

> advancement over earlier treatments, our orthosis represents a new

> direction in the treatment of clubfoot and ITT that builds on his

> work and we have dozens and dozens of parents who will tell you

that

> the results have exceeded all expectations.

>

> The orthosis that we have developed is the direct result of our

> frustration with the inadequacies of traditional bracing and

> surgical options. It sounds like we all agree that neither

approach

> offers ideal outcomes. Once the original concept was conceived we

> worked for two years with a wide range of infants and young

children

> to develop and refine an orthosis that would combine the best

> features of the stretching and casting techniques currently in use

> while avoiding the pitfalls and discomfort of traditional bracing

> (or the pain and deformities associated with surgery). Our goal

was

> to develop an orthosis that would ultimately replace surgery for

> many children and provide a low cost alternative to serial casting

> and subsequent orthotic management. We are running clinical

trials

> on the product of this research. Success, parent satisfaction and

> patient compliance have been phenomenal and we have high hopes

that

> we may ultimately be able to offer an alternative to parents and

> orthopedists that is actually an improvement over current

> protocols.

>

> Although the specific design of the orthosis must remain

proprietary

> at this time (while awaiting patent protection) I wanted to

provide

> responses to some of the concerns raised by your group:

>

> 1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.

>

> 2) The orthosis incorporates ongoing, full time, stretching of

> the foot and lower extremity that allows for gentle, gradual

change

> as though someone were actively manipulating the foot all of the

> time.

>

> 3) The orthosis is removable to allow for ongoing inspection

of

> the skin and to avoid infection and tissue breakdown as occurs

> occasionally with casting.

>

> 4) Depending on growth we find that typically the initial

> positioning orthosis continues to fit appropriately during the

first

> several weeks and that there is then a transition to a dynamic

> correctional orthosis that is outgrown every 3-4 months during the

> first year and every 4-6 months during later years. (The design

of

> the orthosis allows for volume changes in the limb as well as long

> bone growth.)

>

> 5) Donning, positioning and patient compliance have been

> exceptional: one of the strongest attributes of this brace is

that

> is allows for movement of the lower extremity in all three planes,

> which is critical to acceptance. We find that even donning the

> orthosis for first time infants can comfortably tolerate 3-4 n-m

of

> rotational force without discomfort, often they appear to not

> even " notice " the orthosis. There is also a built in sensory

> feedback that encourages relaxing into the corrected position that

> appears to assist in the children's acceptance.

>

> 6) Long term follow up data is not yet available as we have

only

> been working with children for 2 years but we have several

children

> who have relapsed following casting or surgery and who have

> therefore required renewed treatment at age 2 to 2 1/2 . These

> children have done very well with nighttime wear of the orthosis

> (limited ambulation is possible in the brace). I have treated

> children as old as 4.

>

> 7) The beauty about trialing this orthosis is that we have

> ongoing inspection of the foot and at any time the treatment can

> revert to other modalities if so desired.

>

> We commend you all on taking such an active role in your

> children's care, too often people are afraid to challenge the

status

> quo, particularly in medicine. Please know that we are on the

same

> page as regards that: we have suffered through " traditional "

> treatments with too many wonderful kids and worked with to many

> crippled adults not to want to do every thing possible to advance

> the treatment of this problem. That is the motivation for this

> research. I hope that if any one is interested in being

considered

> for this clinical trial that they will contact us so that we can

> arrange an appointment to discuss specifics in greater depth.

Thank

> you again for your time and interest.

[Guest guest]

The Poinsettia Method??? I've seen funny spellings before, but this

beats them all!

I agree that Dr Ponseti's should be dropped from the publicity blurb.

" Ponseti-style " , " modified Ponseti " and other terms like this are

misinformation. There is often little resemblance to Dr Ponseti's

method and it just adds to the misunderstandings that exist.

The Ponseti Method is not a generic term. It's named after a doctor and

his very specific method of treatment. This group is very protective of

the man who has hugely improved our children's lives. It's either the

Ponseti Method or it's not. Don't use his name as a marketing tool!

The statement quoted from Chad's email seems to infer that there

are some things that are 'incorrect' about Dr Ponseti's method - they've

taken only what is correct and 'modified' it. As the Ponseti Method has

been done for over 50 years and its long-term success is

well-documented, this insinuation is irritating to say the least!

and

24 Jan 2003, bilateral, treated by Dr Ponseti

www.clubfoot.co.za

Re: Alternative Conservative Treatment

Chad-

I could discuss quite a bit with you about your entire response, but

I would like to highlight this point in particular as I think it's

most important in relationship to this particular board:

1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.

[Guest guest]

The Poinsettia Method??? I've seen funny spellings before, but this

beats them all!

I agree that Dr Ponseti's should be dropped from the publicity blurb.

" Ponseti-style " , " modified Ponseti " and other terms like this are

misinformation. There is often little resemblance to Dr Ponseti's

method and it just adds to the misunderstandings that exist.

The Ponseti Method is not a generic term. It's named after a doctor and

his very specific method of treatment. This group is very protective of

the man who has hugely improved our children's lives. It's either the

Ponseti Method or it's not. Don't use his name as a marketing tool!

The statement quoted from Chad's email seems to infer that there

are some things that are 'incorrect' about Dr Ponseti's method - they've

taken only what is correct and 'modified' it. As the Ponseti Method has

been done for over 50 years and its long-term success is

well-documented, this insinuation is irritating to say the least!

and

24 Jan 2003, bilateral, treated by Dr Ponseti

www.clubfoot.co.za

Re: Alternative Conservative Treatment

Chad-

I could discuss quite a bit with you about your entire response, but

I would like to highlight this point in particular as I think it's

most important in relationship to this particular board:

1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.

[Guest guest]

The Poinsettia Method??? I've seen funny spellings before, but this

beats them all!

I agree that Dr Ponseti's should be dropped from the publicity blurb.

" Ponseti-style " , " modified Ponseti " and other terms like this are

misinformation. There is often little resemblance to Dr Ponseti's

method and it just adds to the misunderstandings that exist.

The Ponseti Method is not a generic term. It's named after a doctor and

his very specific method of treatment. This group is very protective of

the man who has hugely improved our children's lives. It's either the

Ponseti Method or it's not. Don't use his name as a marketing tool!

The statement quoted from Chad's email seems to infer that there

are some things that are 'incorrect' about Dr Ponseti's method - they've

taken only what is correct and 'modified' it. As the Ponseti Method has

been done for over 50 years and its long-term success is

well-documented, this insinuation is irritating to say the least!

and

24 Jan 2003, bilateral, treated by Dr Ponseti

www.clubfoot.co.za

Re: Alternative Conservative Treatment

Chad-

I could discuss quite a bit with you about your entire response, but

I would like to highlight this point in particular as I think it's

most important in relationship to this particular board:

1) This is not the Poinsettia method. Although I am very

> familiar with this technique and applaud his pioneering work, my

> intent is to incorporate what is correct about that method and

> utilize those principles in a different way.