Re: parents with older kids

[Guest guest]

Tonya,

Evan is 4 and has been out of the FAB since age 2 (too early, on

doctor's advice but that's another story!) and we have been lucky

enough not to have had a relapse. He still has good dorsiflexion,

but our dr. advised us to do heel cord stretches as it is " slightly "

tight. He took great care, though, to show us how to do it so as not

to cause further problems such as rocker bottom or breaking the

arch. We are definitely not to push up on his toes. We are to put

the palm of our hand on his heel and tilt the whole foot up that

way. We start with the knee bent and then slowly straighten it out

to get a better stretch. I know Dr. Ponseti doesn't include

stretching in any post-FAB instructions because of the rocker bottom

etc. so we proceed VERY carefully indeed. We've been doing this

since early June and I can tell you his dorsiflexion is definitely

better than it was. He can pull his foot up almost as far as I can

pull mine now. And he is very proud of that!!

and Evan (8-17-00)

> > 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]

Tonya,

Evan is 4 and has been out of the FAB since age 2 (too early, on

doctor's advice but that's another story!) and we have been lucky

enough not to have had a relapse. He still has good dorsiflexion,

but our dr. advised us to do heel cord stretches as it is " slightly "

tight. He took great care, though, to show us how to do it so as not

to cause further problems such as rocker bottom or breaking the

arch. We are definitely not to push up on his toes. We are to put

the palm of our hand on his heel and tilt the whole foot up that

way. We start with the knee bent and then slowly straighten it out

to get a better stretch. I know Dr. Ponseti doesn't include

stretching in any post-FAB instructions because of the rocker bottom

etc. so we proceed VERY carefully indeed. We've been doing this

since early June and I can tell you his dorsiflexion is definitely

better than it was. He can pull his foot up almost as far as I can

pull mine now. And he is very proud of that!!

and Evan (8-17-00)

> > 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]

Tonya,

Evan is 4 and has been out of the FAB since age 2 (too early, on

doctor's advice but that's another story!) and we have been lucky

enough not to have had a relapse. He still has good dorsiflexion,

but our dr. advised us to do heel cord stretches as it is " slightly "

tight. He took great care, though, to show us how to do it so as not

to cause further problems such as rocker bottom or breaking the

arch. We are definitely not to push up on his toes. We are to put

the palm of our hand on his heel and tilt the whole foot up that

way. We start with the knee bent and then slowly straighten it out

to get a better stretch. I know Dr. Ponseti doesn't include

stretching in any post-FAB instructions because of the rocker bottom

etc. so we proceed VERY carefully indeed. We've been doing this

since early June and I can tell you his dorsiflexion is definitely

better than it was. He can pull his foot up almost as far as I can

pull mine now. And he is very proud of that!!

and Evan (8-17-00)

> > 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]

This is a bit off the subject, but.. my daughter Claire is taking

ballet right now.. and I've been interested to see the moves she's

making... they seem a good thing for her heel cord and calves.

They sit on the floor pointing and flexing their feet, run around the

room on tiptoes, do knee bends (plie's?) with the heels flat.. She

LOVES it, and I do feel like it will be very good for her..

and oh how it warms my heart to see her doing it!

> > > 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]

This is a bit off the subject, but.. my daughter Claire is taking

ballet right now.. and I've been interested to see the moves she's

making... they seem a good thing for her heel cord and calves.

They sit on the floor pointing and flexing their feet, run around the

room on tiptoes, do knee bends (plie's?) with the heels flat.. She

LOVES it, and I do feel like it will be very good for her..

and oh how it warms my heart to see her doing it!

> > > 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]

This is a bit off the subject, but.. my daughter Claire is taking

ballet right now.. and I've been interested to see the moves she's

making... they seem a good thing for her heel cord and calves.

They sit on the floor pointing and flexing their feet, run around the

room on tiptoes, do knee bends (plie's?) with the heels flat.. She

LOVES it, and I do feel like it will be very good for her..

and oh how it warms my heart to see her doing it!

> > > 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]

Tonya,

I was told by 's doctor to check to make sure her heel cord

was not tightening (now that she's out of her shoes at three) but that

exercises were not important. I check her heel cord by dorsiflexing her

foot about once a month.

Amy

> Hi All

>

>   I have a question for the parents who have older kids.  A local

> doctor is

> interested in doing the Ponseti method and heard that our son had it

> done

> and requested to see him this week.  He was supper impressed.  He had

> lots

> of questions for me but one I couldn’t answer…..

>

>

>

> is now 3½ and has been out of his DBB’s for about four months. 

> Has

> anyone been told that once they stop wearing the shoes that the parent

> should actively participate in stretching their child’s feet.  The

> idea I

> got was that I should be concerned about the calf muscle shortening so

> I

> should stretch his feet by pushing on my sons toes.

>

>

>

> This was something that our regular doctor has not mentioned to us,

> but I

> wondered if anyone else had any feedback regarding this idea.

>

>

>

> Thanks

>

>

>

> Tonya and (bcf)

>

> San Diego, CA

>

> Dr. Colburn

>

>

>

>   _____ 

>

> From: Egbert

> Sent: Tuesday, September 21, 2004 9:51 PM

> To: nosurgery4clubfoot

> Subject: Re: Alternative Conservative Treatment

>

>

>

> 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.

>

>

>

>