Re: questions regarding Poseti method

[Guest guest]

Wanhai Liu

Welcome to the group, we're happy you're here and you're so right to be asking

questions!!!

Regarding Ponseti, your doctor's opinion of the Ponseti Method sounds WAY off

base. Others here can give you better details and the web site outlining Dr.

Ponseti specifically is very informative. Please look at the " Files " section

of this group for details, photos, etc. You can email photos of your child's

feet to Dr. Ponseti for evaluation.

As for traveling to Iowa - can your wife pump breast milk to feed the baby while

you travel? I really understand not wanting to feed your baby formula, but by

the same token, it might be worth that minor change of diet (temporary change)

to get your child the best possible treatment for his feet before it's too late

to fix them with out surgery.

Your question regarding re-casting. There is always that very slim chance a

child's feet will relapse even with the best Ponseti-based care, but that is

hardly a drop in the bucket compared to the relapse/complications that come

later with a surgical approach.

Please continue your research regarding the Ponseti Method. I have had two

children born with club feet. One was treated by a non-Ponseti doctor and I

totally regret it.

Best of Luck!

s.

questions regarding Poseti method

Hi, All,

I am glad that I found this group. My son has clubfeet. He has

been treated by an orthopedic surgeon in Houston using fiberglass cast

for two month and we see little improvement. The surgeon told us that

mostly will need surgeory. My wife does not like the idea. I

searched the internet and found this group. After reading information

regarding Ponseti method, I talked to the surgeon. He said that my son

does not qualify for Ponseti because Ponseti only treats heel cord

deformity and my son has defomity in his forefeet also. He is also

kind of suspicious about tenotomy. Has anybody heard any negative

testimonies regarding Ponseti method? Does anybody know any othorpedic

uses Ponseti method in Texas? My wife has used all her vacations this

year. I am hesitating to go to Iowa, because I do not like the idea of

feeding my son with formula.

Carole, I am surprised to know your son need to be re-casted. I

thought Ponseti method only casts 5 to 7 times. Then the rest of time

will be on FAB or DBB. Can you share some of your son's treatment

experience?

Thanks,

Wanhai Liu

[Guest guest]

Hi there,

I am glad you found this board! I don't think there are any doctors

in Texas practicing the method. I have not read of any parents who

regretted making the trip to Iowa City. Maybe you could take photos

of s feet and send them to Dr. Ponseti before making the

trip. I cannot see it being a waste at all. Dr. P's e-mail address

is ignacio-ponseti@...

I can't recall what photos he requires. Let us know if you want to

do this and we will give you the poses.

As far as feeding your little guy, once you know how long you would

be gone you can work with it. You could take frozen milk with you

and your wife can continue to pump while you are away in order to

keep her supply up. I have even heard of a Mom who traveled with

work and would send her milk home for her baby. Can't recall how she

did it, but it is possible. And as my La Leche League leader said, if

you have to give them formula it's not the end of the world " it's not

rat poison " as she said. Even if you have to supplement with formula

while you are away and then go back to bm when you get back you can

do that.

Keep us posted on your decision making and if you have questions ask

away!

Louisa

6-27-99

Zoe 2-22-04 Right Unilateral Clubfoot

> Hi, All,

>

> I am glad that I found this group. My son has clubfeet. He

has

> been treated by an orthopedic surgeon in Houston using fiberglass

cast

> for two month and we see little improvement. The surgeon told us

that

> mostly will need surgeory. My wife does not like the idea. I

> searched the internet and found this group. After reading

information

> regarding Ponseti method, I talked to the surgeon. He said that my

son

> does not qualify for Ponseti because Ponseti only treats heel cord

> deformity and my son has defomity in his forefeet also. He is also

> kind of suspicious about tenotomy. Has anybody heard any negative

> testimonies regarding Ponseti method? Does anybody know any

othorpedic

> uses Ponseti method in Texas? My wife has used all her vacations

this

> year. I am hesitating to go to Iowa, because I do not like the idea

of

> feeding my son with formula.

>

> Carole, I am surprised to know your son need to be re-casted. I

> thought Ponseti method only casts 5 to 7 times. Then the rest of

time

> will be on FAB or DBB. Can you share some of your son's treatment

> experience?

>

> Thanks,

> Wanhai Liu

[Guest guest]

Hi there,

I am glad you found this board! I don't think there are any doctors

in Texas practicing the method. I have not read of any parents who

regretted making the trip to Iowa City. Maybe you could take photos

of s feet and send them to Dr. Ponseti before making the

trip. I cannot see it being a waste at all. Dr. P's e-mail address

is ignacio-ponseti@...

I can't recall what photos he requires. Let us know if you want to

do this and we will give you the poses.

As far as feeding your little guy, once you know how long you would

be gone you can work with it. You could take frozen milk with you

and your wife can continue to pump while you are away in order to

keep her supply up. I have even heard of a Mom who traveled with

work and would send her milk home for her baby. Can't recall how she

did it, but it is possible. And as my La Leche League leader said, if

you have to give them formula it's not the end of the world " it's not

rat poison " as she said. Even if you have to supplement with formula

while you are away and then go back to bm when you get back you can

do that.

Keep us posted on your decision making and if you have questions ask

away!

Louisa

6-27-99

Zoe 2-22-04 Right Unilateral Clubfoot

> Hi, All,

>

> I am glad that I found this group. My son has clubfeet. He

has

> been treated by an orthopedic surgeon in Houston using fiberglass

cast

> for two month and we see little improvement. The surgeon told us

that

> mostly will need surgeory. My wife does not like the idea. I

> searched the internet and found this group. After reading

information

> regarding Ponseti method, I talked to the surgeon. He said that my

son

> does not qualify for Ponseti because Ponseti only treats heel cord

> deformity and my son has defomity in his forefeet also. He is also

> kind of suspicious about tenotomy. Has anybody heard any negative

> testimonies regarding Ponseti method? Does anybody know any

othorpedic

> uses Ponseti method in Texas? My wife has used all her vacations

this

> year. I am hesitating to go to Iowa, because I do not like the idea

of

> feeding my son with formula.

>

> Carole, I am surprised to know your son need to be re-casted. I

> thought Ponseti method only casts 5 to 7 times. Then the rest of

time

> will be on FAB or DBB. Can you share some of your son's treatment

> experience?

>

> Thanks,

> Wanhai Liu

[Guest guest]

Hi there,

I am glad you found this board! I don't think there are any doctors

in Texas practicing the method. I have not read of any parents who

regretted making the trip to Iowa City. Maybe you could take photos

of s feet and send them to Dr. Ponseti before making the

trip. I cannot see it being a waste at all. Dr. P's e-mail address

is ignacio-ponseti@...

I can't recall what photos he requires. Let us know if you want to

do this and we will give you the poses.

As far as feeding your little guy, once you know how long you would

be gone you can work with it. You could take frozen milk with you

and your wife can continue to pump while you are away in order to

keep her supply up. I have even heard of a Mom who traveled with

work and would send her milk home for her baby. Can't recall how she

did it, but it is possible. And as my La Leche League leader said, if

you have to give them formula it's not the end of the world " it's not

rat poison " as she said. Even if you have to supplement with formula

while you are away and then go back to bm when you get back you can

do that.

Keep us posted on your decision making and if you have questions ask

away!

Louisa

6-27-99

Zoe 2-22-04 Right Unilateral Clubfoot

> Hi, All,

>

> I am glad that I found this group. My son has clubfeet. He

has

> been treated by an orthopedic surgeon in Houston using fiberglass

cast

> for two month and we see little improvement. The surgeon told us

that

> mostly will need surgeory. My wife does not like the idea. I

> searched the internet and found this group. After reading

information

> regarding Ponseti method, I talked to the surgeon. He said that my

son

> does not qualify for Ponseti because Ponseti only treats heel cord

> deformity and my son has defomity in his forefeet also. He is also

> kind of suspicious about tenotomy. Has anybody heard any negative

> testimonies regarding Ponseti method? Does anybody know any

othorpedic

> uses Ponseti method in Texas? My wife has used all her vacations

this

> year. I am hesitating to go to Iowa, because I do not like the idea

of

> feeding my son with formula.

>

> Carole, I am surprised to know your son need to be re-casted. I

> thought Ponseti method only casts 5 to 7 times. Then the rest of

time

> will be on FAB or DBB. Can you share some of your son's treatment

> experience?

>

> Thanks,

> Wanhai Liu

[Guest guest]

I can't say enough good things about the Ponseti method. My

daughter's clubfeet were very severe and I was working with a doctor

who said he was using the Ponseti method but wasn't following it

totally and her feet were not getting corrected. I would e-mail Dr

Ponseti with pictures and see if he can recommend a doctor in your

area, or at least closer then Iowa.

Clubfeet effects many parts of the feet including the heal which is

why they perform the tenotomy. It was done with out putting my

daughter to sleep and was over in 15 minutes and we never needed any

pain medication for her except some Tylenol and she was comfortable.

It is used to help the heal to drop down.

Casting is done on an individual basis and as we have all learned not

all casting is equal. I don't know all of the proper terminology but

I know that when Dr Ponseti moves the foot down for a new cast he

does it in an exact way around a bone in the top of the foot. If you

try to just push it over it gets hung up on the bone and the foot

will not correct. Dr Ponseti's web site has more details on it.

Sometimes there is a relapse and more cast are needed.

Here is a web site with a lot of info on all types of clubfoot

treatment. The information on Ponseti can be reached by clicking on

the top left link.

http://www.internet-health-

directory.com/Conditions_and_Diseases_Musculoskeletal_Disorders_Congen

ital_Anomalies_Clubfoot.html

Tori 1/30/04 bilateral atypical cf in brace 23/7

[Guest guest]

I can't say enough good things about the Ponseti method. My

daughter's clubfeet were very severe and I was working with a doctor

who said he was using the Ponseti method but wasn't following it

totally and her feet were not getting corrected. I would e-mail Dr

Ponseti with pictures and see if he can recommend a doctor in your

area, or at least closer then Iowa.

Clubfeet effects many parts of the feet including the heal which is

why they perform the tenotomy. It was done with out putting my

daughter to sleep and was over in 15 minutes and we never needed any

pain medication for her except some Tylenol and she was comfortable.

It is used to help the heal to drop down.

Casting is done on an individual basis and as we have all learned not

all casting is equal. I don't know all of the proper terminology but

I know that when Dr Ponseti moves the foot down for a new cast he

does it in an exact way around a bone in the top of the foot. If you

try to just push it over it gets hung up on the bone and the foot

will not correct. Dr Ponseti's web site has more details on it.

Sometimes there is a relapse and more cast are needed.

Here is a web site with a lot of info on all types of clubfoot

treatment. The information on Ponseti can be reached by clicking on

the top left link.

http://www.internet-health-

directory.com/Conditions_and_Diseases_Musculoskeletal_Disorders_Congen

ital_Anomalies_Clubfoot.html

Tori 1/30/04 bilateral atypical cf in brace 23/7

[Guest guest]

I can't say enough good things about the Ponseti method. My

daughter's clubfeet were very severe and I was working with a doctor

who said he was using the Ponseti method but wasn't following it

totally and her feet were not getting corrected. I would e-mail Dr

Ponseti with pictures and see if he can recommend a doctor in your

area, or at least closer then Iowa.

Clubfeet effects many parts of the feet including the heal which is

why they perform the tenotomy. It was done with out putting my

daughter to sleep and was over in 15 minutes and we never needed any

pain medication for her except some Tylenol and she was comfortable.

It is used to help the heal to drop down.

Casting is done on an individual basis and as we have all learned not

all casting is equal. I don't know all of the proper terminology but

I know that when Dr Ponseti moves the foot down for a new cast he

does it in an exact way around a bone in the top of the foot. If you

try to just push it over it gets hung up on the bone and the foot

will not correct. Dr Ponseti's web site has more details on it.

Sometimes there is a relapse and more cast are needed.

Here is a web site with a lot of info on all types of clubfoot

treatment. The information on Ponseti can be reached by clicking on

the top left link.

http://www.internet-health-

directory.com/Conditions_and_Diseases_Musculoskeletal_Disorders_Congen

ital_Anomalies_Clubfoot.html

Tori 1/30/04 bilateral atypical cf in brace 23/7

[Guest guest]

http://www.internet-health-

directory.com/Conditions_and_Diseases_Musculoskeletal_Disorders_Congen

ital_Anomalies_Clubfoot.html

That is the link I use but if it won't work for you try going to

http://www.internet-health-directory.com/ then click on the

conditions and diseases, then musculoskeleton disorders, then

congenital abnormalities, then clubfeet. It might not be

highlighting the whole thing as a link so you might need to copy and

past it in to the address bar. HTH

[Guest guest]

Wanhai,

You are better off than we were! We didn't find this board until my

son was 9 months old. I too am from Texas. I emailed Ponseti looking

for certified doctors in Texas; there are none. I am seeing an ortho

here in Austin. She is dedicated to the method and working on

certifying (she just lacks a few pictures). If you can make the trip

to Iowa, do it. We planned for it, but my insurance wouldn't pay for

the doctor bills. Perhaps your wife could look into Family and

Medical Leave Act (FMLA) and go to Iowa too.

As for recasting… my son is still in casts at 10.5 months. He has

severe bilateral club foot. I talked with my son's doctor when I had

just about given up stating that so many people on this board are

relapsing and having to be back in casts. I just couldn't see how any

method could really work. The reply was eye opening. He said " Well,

you are getting just one side of the story. Most people who only took

6 cats and the dbb no longer visit the board or at least not as

frequently. " Notice the word most, there are some on here. Despite

that, this board has the best information around whether you have a

set of tough feet or you get corrected in 6 casts and the shoes. I am

glad you found this board, everyone on here is very helpful and has

more information than most the doctors in the continental U.S

[Guest guest]

Wanhai,

You are better off than we were! We didn't find this board until my

son was 9 months old. I too am from Texas. I emailed Ponseti looking

for certified doctors in Texas; there are none. I am seeing an ortho

here in Austin. She is dedicated to the method and working on

certifying (she just lacks a few pictures). If you can make the trip

to Iowa, do it. We planned for it, but my insurance wouldn't pay for

the doctor bills. Perhaps your wife could look into Family and

Medical Leave Act (FMLA) and go to Iowa too.

As for recasting… my son is still in casts at 10.5 months. He has

severe bilateral club foot. I talked with my son's doctor when I had

just about given up stating that so many people on this board are

relapsing and having to be back in casts. I just couldn't see how any

method could really work. The reply was eye opening. He said " Well,

you are getting just one side of the story. Most people who only took

6 cats and the dbb no longer visit the board or at least not as

frequently. " Notice the word most, there are some on here. Despite

that, this board has the best information around whether you have a

set of tough feet or you get corrected in 6 casts and the shoes. I am

glad you found this board, everyone on here is very helpful and has

more information than most the doctors in the continental U.S

[Guest guest]

Wanhai,

You are better off than we were! We didn't find this board until my

son was 9 months old. I too am from Texas. I emailed Ponseti looking

for certified doctors in Texas; there are none. I am seeing an ortho

here in Austin. She is dedicated to the method and working on

certifying (she just lacks a few pictures). If you can make the trip

to Iowa, do it. We planned for it, but my insurance wouldn't pay for

the doctor bills. Perhaps your wife could look into Family and

Medical Leave Act (FMLA) and go to Iowa too.

As for recasting… my son is still in casts at 10.5 months. He has

severe bilateral club foot. I talked with my son's doctor when I had

just about given up stating that so many people on this board are

relapsing and having to be back in casts. I just couldn't see how any

method could really work. The reply was eye opening. He said " Well,

you are getting just one side of the story. Most people who only took

6 cats and the dbb no longer visit the board or at least not as

frequently. " Notice the word most, there are some on here. Despite

that, this board has the best information around whether you have a

set of tough feet or you get corrected in 6 casts and the shoes. I am

glad you found this board, everyone on here is very helpful and has

more information than most the doctors in the continental U.S

[Guest guest]

Hello and welcome,

First of all lots and lots of children with all types and severety of clubfoot

have been/are being treated by the Ponseti method. I am not sure about Dr's in

Texas, but there are others who post here who may know.

Second, if there is an option for you to go to Iowa, DO IT. You will never be

sorry. There are a handful of Dr.'s nationwide that are experts in the Ponseti

method, but the " heart " appears to be in Iowa. Lots of babies, including mine,

have done very well on formula. If the choice is stay in Texas and let them

perform one or possibly many surgeries on your child, or switch to formula so

your child can have a pain-free foot throughout life, is there even a need to

discuss it?

My daughter Rose is 17 months old and walking and doing great. She has had no

surgery except the tenotony. She wears the Denis Browne Bar 10-12 hours per

night. Her foot looks wonderful and we couldn't be happier. When I think of

how close she came to surgery, it makes me shudder.

Everyone here is very nice and there is lots of good information to be had.

Best of luck in finding a Dr that will be able to treat your son without

surgery.

Robin & Rose

3/12/03

Right club foot.

wanhai_liu wliu@...> wrote:

Hi, All,

I am glad that I found this group. My son has clubfeet. He has

been treated by an orthopedic surgeon in Houston using fiberglass cast

for two month and we see little improvement. The surgeon told us that

mostly will need surgeory. My wife does not like the idea. I

searched the internet and found this group. After reading information

regarding Ponseti method, I talked to the surgeon. He said that my son

does not qualify for Ponseti because Ponseti only treats heel cord

deformity and my son has defomity in his forefeet also. He is also

kind of suspicious about tenotomy. Has anybody heard any negative

testimonies regarding Ponseti method? Does anybody know any othorpedic

uses Ponseti method in Texas? My wife has used all her vacations this

year. I am hesitating to go to Iowa, because I do not like the idea of

feeding my son with formula.

Carole, I am surprised to know your son need to be re-casted. I

thought Ponseti method only casts 5 to 7 times. Then the rest of time

will be on FAB or DBB. Can you share some of your son's treatment

experience?

Thanks,

Wanhai Liu

[Guest guest]

Hello and welcome,

First of all lots and lots of children with all types and severety of clubfoot

have been/are being treated by the Ponseti method. I am not sure about Dr's in

Texas, but there are others who post here who may know.

Second, if there is an option for you to go to Iowa, DO IT. You will never be

sorry. There are a handful of Dr.'s nationwide that are experts in the Ponseti

method, but the " heart " appears to be in Iowa. Lots of babies, including mine,

have done very well on formula. If the choice is stay in Texas and let them

perform one or possibly many surgeries on your child, or switch to formula so

your child can have a pain-free foot throughout life, is there even a need to

discuss it?

My daughter Rose is 17 months old and walking and doing great. She has had no

surgery except the tenotony. She wears the Denis Browne Bar 10-12 hours per

night. Her foot looks wonderful and we couldn't be happier. When I think of

how close she came to surgery, it makes me shudder.

Everyone here is very nice and there is lots of good information to be had.

Best of luck in finding a Dr that will be able to treat your son without

surgery.

Robin & Rose

3/12/03

Right club foot.

wanhai_liu wliu@...> wrote:

Hi, All,

I am glad that I found this group. My son has clubfeet. He has

been treated by an orthopedic surgeon in Houston using fiberglass cast

for two month and we see little improvement. The surgeon told us that

mostly will need surgeory. My wife does not like the idea. I

searched the internet and found this group. After reading information

regarding Ponseti method, I talked to the surgeon. He said that my son

does not qualify for Ponseti because Ponseti only treats heel cord

deformity and my son has defomity in his forefeet also. He is also

kind of suspicious about tenotomy. Has anybody heard any negative

testimonies regarding Ponseti method? Does anybody know any othorpedic

uses Ponseti method in Texas? My wife has used all her vacations this

year. I am hesitating to go to Iowa, because I do not like the idea of

feeding my son with formula.

Carole, I am surprised to know your son need to be re-casted. I

thought Ponseti method only casts 5 to 7 times. Then the rest of time

will be on FAB or DBB. Can you share some of your son's treatment

experience?

Thanks,

Wanhai Liu

[Guest guest]

Hello and welcome,

First of all lots and lots of children with all types and severety of clubfoot

have been/are being treated by the Ponseti method. I am not sure about Dr's in

Texas, but there are others who post here who may know.

Second, if there is an option for you to go to Iowa, DO IT. You will never be

sorry. There are a handful of Dr.'s nationwide that are experts in the Ponseti

method, but the " heart " appears to be in Iowa. Lots of babies, including mine,

have done very well on formula. If the choice is stay in Texas and let them

perform one or possibly many surgeries on your child, or switch to formula so

your child can have a pain-free foot throughout life, is there even a need to

discuss it?

My daughter Rose is 17 months old and walking and doing great. She has had no

surgery except the tenotony. She wears the Denis Browne Bar 10-12 hours per

night. Her foot looks wonderful and we couldn't be happier. When I think of

how close she came to surgery, it makes me shudder.

Everyone here is very nice and there is lots of good information to be had.

Best of luck in finding a Dr that will be able to treat your son without

surgery.

Robin & Rose

3/12/03

Right club foot.

wanhai_liu wliu@...> wrote:

Hi, All,

I am glad that I found this group. My son has clubfeet. He has

been treated by an orthopedic surgeon in Houston using fiberglass cast

for two month and we see little improvement. The surgeon told us that

mostly will need surgeory. My wife does not like the idea. I

searched the internet and found this group. After reading information

regarding Ponseti method, I talked to the surgeon. He said that my son

does not qualify for Ponseti because Ponseti only treats heel cord

deformity and my son has defomity in his forefeet also. He is also

kind of suspicious about tenotomy. Has anybody heard any negative

testimonies regarding Ponseti method? Does anybody know any othorpedic

uses Ponseti method in Texas? My wife has used all her vacations this

year. I am hesitating to go to Iowa, because I do not like the idea of

feeding my son with formula.

Carole, I am surprised to know your son need to be re-casted. I

thought Ponseti method only casts 5 to 7 times. Then the rest of time

will be on FAB or DBB. Can you share some of your son's treatment

experience?

Thanks,

Wanhai Liu

[Guest guest]

Wanhai,

For those of us who have watched parents on the interent for the past

5 years, although we have tried to find a fully committed Ponseti

method doctor in Houston and/or Dallas, we have not yet found one.

Dallas ish Rite has been offering French Physiotherapy and/or a

somewhat modified Ponseti method for a number of years, but their

reported success with either method was I believe only about 60-70%

not needing some form of a posterior release.

Doctors in Houston have been aware of the Ponseti method for quite a

while, but we here on this site have not yet seen parents say that

their Houston doctor was using " real " Ponseti.

You can see from the Houston Shriners Hospitals discussion

on Clubfoot on the national web site that they have at least 2

different casting methods that they are aware of. At their web site

they say " Talipes equinovarus, or clubfoot, is a relatively common

foot deformity, affecting one in 1,000 children each year. Clubfoot

is readily identifiable at birth, making it easy to diagnose. Yet

how to best treat clubfoot generates more controversy among

physicians than almost any other orthopaedic condition... "

" Doctors differ widely in their opinions regarding the success rate

of serial casting. Some say the procedure works only five percent of

the time [95% surgery], while some believe almost all cases of

clubfoot [i.e. Ponseti method], when treated early and correctly,

can be corrected with conservative therapy. Dr. [in his

experience] says serial casting works in 20 to 25 percent of cases,

but this percentage could increase, he said, if more physicians were

trained in proper manipulation and casting techniques. "

http://www.shrinershq.org/patientedu/clubfoot2.html

That information from the Houston Shriners has been on the internet

for 2-3 years. From his quote, Dr. (who was the assistant

chief of Staff at the Houston Shriners) knew that the Ponseti method

of serial casting claimed 95% non-surgical success, yet he chose to

use a method of serial casting that only worked 20-25% of the time.

But he admitted that " this percentage could increase, if more

physicians were trained in proper manipulation and casting

techniques. "

Here is a link to a prior message from parents from near Austin who

had gone to Dallas and Houston before changing to Dr. Dobbs in St.

Louis. Read all of the underlying messages in that link to

understand their conversation.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/18373

Here is a message from some other parents in Houston from September

of 2003 who were asking the same question.

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/16963

I hope that this information is of help. If you find someone around

Houston who is using the Ponseti method, please let us know so that

we can inform others when they come.

and (3-17-99)

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html

> Hi, All,

>

> I am glad that I found this group. My son has clubfeet. He

has

> been treated by an orthopedic surgeon in Houston using fiberglass

cast

> for two month and we see little improvement. The surgeon told us

that

> mostly will need surgeory. My wife does not like the idea. I

> searched the internet and found this group. After reading

information

> regarding Ponseti method, I talked to the surgeon. He said that my

son

> does not qualify for Ponseti because Ponseti only treats heel cord

> deformity and my son has defomity in his forefeet also. He is also

> kind of suspicious about tenotomy. Has anybody heard any negative

> testimonies regarding Ponseti method? Does anybody know any

othorpedic

> uses Ponseti method in Texas? My wife has used all her vacations

this

> year. I am hesitating to go to Iowa, because I do not like the idea

of

> feeding my son with formula.

>

> Carole, I am surprised to know your son need to be re-casted. I

> thought Ponseti method only casts 5 to 7 times. Then the rest of

time

> will be on FAB or DBB. Can you share some of your son's treatment

> experience?

>

> Thanks,

> Wanhai Liu

[Guest guest]

Cari,

Although there are some children here on this site who are

experiencing relapsing, I don't think that it is very many and most

but not all have been where the FAB/DBB had been discontinued. I

would encourage you to look at the published results of those who are

committed to using the Ponseti method exactly as designed with the U

of Iowa being the " gold standard " .

has put togther lots of great information from studies and

reports at her web site at

http://pages.ivillage.com/ponseti_links/id1.html

and (3-17-99)

> Wanhai,

>

> You are better off than we were! We didn't find this board until my

> son was 9 months old. I too am from Texas. I emailed Ponseti

looking

> for certified doctors in Texas; there are none. I am seeing an

ortho

> here in Austin. She is dedicated to the method and working on

> certifying (she just lacks a few pictures). If you can make the

trip

> to Iowa, do it. We planned for it, but my insurance wouldn't pay

for

> the doctor bills. Perhaps your wife could look into Family and

> Medical Leave Act (FMLA) and go to Iowa too.

>

> As for recasting… my son is still in casts at 10.5 months. He has

> severe bilateral club foot. I talked with my son's doctor when I

had

> just about given up stating that so many people on this board are

> relapsing and having to be back in casts. I just couldn't see how

any

> method could really work. The reply was eye opening. He said " Well,

> you are getting just one side of the story. Most people who only

took

> 6 cats and the dbb no longer visit the board or at least not as

> frequently. " Notice the word most, there are some on here. Despite

> that, this board has the best information around whether you have a

> set of tough feet or you get corrected in 6 casts and the shoes. I

am

> glad you found this board, everyone on here is very helpful and has

> more information than most the doctors in the continental U.S

[Guest guest]

.

I do understand that the Ponseti method has high results. As a parent

of a cf child, I am sure you understand that sometimes we just break

down when the typical treatment is not working the way we

hoped/prayed for. This happened to me a few weeks back when day after

day there were posts from concerned parents of children who were

possibly relapsing all while my son at 9 months was still in casts. I

think it is important for parents to know that casting after 2 - 3

months of age is not the norm despite how many times it may come up

on this or any other board. Most parents of 2 and 3 year old children

are not posting frequently when all is well with their cf child. It's

kind of like AA, some people go though it get better and leave, some

people go though it have a hard time and stick around for a while,

others go though it, have success and stick around to help others. It

is the nature of an information/support group. I apologize if my last

post did not read as I wanted it to, I hope this works better.

Cari and 9-24-04 BLCF

> > Wanhai,

> >

> > You are better off than we were! We didn't find this board until

my

> > son was 9 months old. I too am from Texas. I emailed Ponseti

> looking

> > for certified doctors in Texas; there are none. I am seeing an

> ortho

> > here in Austin. She is dedicated to the method and working on

> > certifying (she just lacks a few pictures). If you can make the

> trip

> > to Iowa, do it. We planned for it, but my insurance wouldn't pay

> for

> > the doctor bills. Perhaps your wife could look into Family and

> > Medical Leave Act (FMLA) and go to Iowa too.

> >

> > As for recasting… my son is still in casts at 10.5 months. He has

> > severe bilateral club foot. I talked with my son's doctor when I

> had

> > just about given up stating that so many people on this board are

> > relapsing and having to be back in casts. I just couldn't see how

> any

> > method could really work. The reply was eye opening. He

said " Well,

> > you are getting just one side of the story. Most people who only

> took

> > 6 cats and the dbb no longer visit the board or at least not as

> > frequently. " Notice the word most, there are some on here.

Despite

> > that, this board has the best information around whether you have

a

> > set of tough feet or you get corrected in 6 casts and the shoes.

I

> am

> > glad you found this board, everyone on here is very helpful and

has

> > more information than most the doctors in the continental U.S

[Guest guest]

Cari,

Many of us who have older children and have watched a number of

years worth of parents experiences on the internet feel like we need

to try to help share information with others. As more and more

doctors are beginning to offer the Ponseti method, for whatever

reason, some new doctors have not yet committed to do the method

exactly as designed or else are not experienced enough to make it

work as well as they can at the U of Iowa and other places. Other

groups that have published good results include at least Dr.s Lehman

et. al. at NYU, Dr. Herzenberg in Baltimore, Dr. Dobbs at Shriners

St. Louis, Dr. Colburn in the Bay Area, Dr. Noonan at Wisconsin, Dr.

Frisk in N. Carolina and others.

In the recent reports by the U of Iowa, they have stated that over

the past 10 years that the average child they treated was casted for

about 20 days until corrected with usually 5 or fewer casts (90% of

the time, probably plus the 3 week tenotomy cast). They have also

indicated that age is not a factor (up to at least 18 months),

initial severity is not a factor.

The U of Iowa's 2002 article at the AAOS Convention at

http://www.aaos.org/wordhtml/anmt2002/sciprog/052.htm

The U of Iowa's Feb 2004 article in the Journal of Pediatrics

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

You had mentioned that you recently switched to a Ponseti method

doctor. If your new doctor has used over 7-9 casts or so and the

feet still are not getting corrected, I would encourage you to call

or e-mail Dr. Ponseti or Dr. Dobbs.

and (3-17-99)

> > > Wanhai,

> > >

> > > You are better off than we were! We didn't find this board

until

> my

> > > son was 9 months old. I too am from Texas. I emailed Ponseti

> > looking

> > > for certified doctors in Texas; there are none. I am seeing an

> > ortho

> > > here in Austin. She is dedicated to the method and working on

> > > certifying (she just lacks a few pictures). If you can make

the

> > trip

> > > to Iowa, do it. We planned for it, but my insurance wouldn't

pay

> > for

> > > the doctor bills. Perhaps your wife could look into Family and

> > > Medical Leave Act (FMLA) and go to Iowa too.

> > >

> > > As for recasting… my son is still in casts at 10.5 months. He

has

> > > severe bilateral club foot. I talked with my son's doctor when

I

> > had

> > > just about given up stating that so many people on this board

are

> > > relapsing and having to be back in casts. I just couldn't see

how

> > any

> > > method could really work. The reply was eye opening. He

> said " Well,

> > > you are getting just one side of the story. Most people who

only

> > took

> > > 6 cats and the dbb no longer visit the board or at least not

as

> > > frequently. " Notice the word most, there are some on here.

> Despite

> > > that, this board has the best information around whether you

have

> a

> > > set of tough feet or you get corrected in 6 casts and the

shoes.

> I

> > am

> > > glad you found this board, everyone on here is very helpful

and

> has

> > > more information than most the doctors in the continental

U.S

[Guest guest]

,

I guess my posts just aren't communicating what I intend.

Anyway, we had done just that, here is Ponseti reply. It looks like

the casts are what we needed and perhaps a third tenotomy. But for

now just the casts, 's feet are getting better motion.

____________________________________________________________

July 15, 2004

Dear Mr. and Mrs. Carpenter;

From reading your e-mail it appears your child was born with severe

clubfoot deformities. I don't know if the deformities are fully

corrected or not. 's shoes are much better than the

Markell shoes in holding the correction, but if the foot is not fully

corrected, neither type of shoe will improve the deformity. The

purpose of the shoes and bar is not to complete the correction.

Apparently the tendo Achilles is still tight and I understand Dr.

Kahn's hesitancy to do another tenotomy, but if it needs to be

stretched, this should be done with further casting or another

tenotomy rather than attempting to do it with the brace.

Before I add a physician's name to my web site, I require that he

send me photos of the feet of three babies he has treated showing the

feet before treatment was started, one photo of the feet in a cast so

I can evaluate his casting technique, and one photo when treatment is

complete. I also require information on the number of casts used,

type of cast, type of casting material, if a tenotomy was done, was

local or general anesthesia used, was the foot fully corrected or

will surgery such as a posterior or posterior medial release be

necessary, what type of brace was prescribed, and what brace wear

instructions were given to the family. By going over this material I

can at least get some indication of how well the physicial is

following my treatment protocol. Unfortunately no one in Texas has

submitted this information to me.

If you go to the web site global-help.org and click on publications,

you can download a free copy of the booklet Clubfoot: Ponseti

Management which gives a good narrative and photographic description

of our treatment.

I.V.Ponseti, M.D.

> > > > Wanhai,

> > > >

> > > > You are better off than we were! We didn't find this board

> until

> > my

> > > > son was 9 months old. I too am from Texas. I emailed Ponseti

> > > looking

> > > > for certified doctors in Texas; there are none. I am seeing

an

> > > ortho

> > > > here in Austin. She is dedicated to the method and working on

> > > > certifying (she just lacks a few pictures). If you can make

> the

> > > trip

> > > > to Iowa, do it. We planned for it, but my insurance wouldn't

> pay

> > > for

> > > > the doctor bills. Perhaps your wife could look into Family

and

> > > > Medical Leave Act (FMLA) and go to Iowa too.

> > > >

> > > > As for recasting… my son is still in casts at 10.5 months. He

> has

> > > > severe bilateral club foot. I talked with my son's doctor

when

> I

> > > had

> > > > just about given up stating that so many people on this board

> are

> > > > relapsing and having to be back in casts. I just couldn't see

> how

> > > any

> > > > method could really work. The reply was eye opening. He

> > said " Well,

> > > > you are getting just one side of the story. Most people who

> only

> > > took

> > > > 6 cats and the dbb no longer visit the board or at least not

> as

> > > > frequently. " Notice the word most, there are some on here.

> > Despite

> > > > that, this board has the best information around whether you

> have

> > a

> > > > set of tough feet or you get corrected in 6 casts and the

> shoes.

> > I

> > > am

> > > > glad you found this board, everyone on here is very helpful

> and

> > has

> > > > more information than most the doctors in the continental

> U.S

[Guest guest]

You mention Dr. Dietz who is the dr. who helped Ponseti work on my first son. I

wonder where Dr. Dietz is today? I did not see him in Iowa nor hear about him

on this board anywhere.

s.

Re: questions regarding Poseti method

Cari,

Thanks for the clarification. I was not aware that you had already

communicated with Dr. Ponseti. I hope that you will soon be out of

the casting phase.

We live in Las Vegas, and when our child was born 5 years ago, we

began treatment with a local doctor that told us that 90% of the 40

children he treated per year over the prior 10 years had needed to

have the posterior release types of surgery. We were with that local

doctor for 6 short leg casts until we decided to go to Iowa. When we

went to Iowa, Dr.s Deitz and Ponseti corrected his feet in 2 casts

plus the tenotomy casts. We know a little of what it is like to be

getting casted where it wasn't really working, (but just 6 weeks

worth). I am sorry that you have had to deal with 10 months of on

and off casting.

Buy the way, our local doctor switched over to the Ponseti method

about 2-3 years ago and the last time I talked to him he said that he

had not had to do a posterior release type of surgery in the prior 15-

16 months.

and (3-17-99)

Our son 's Testimonial page (a short version of our story)

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html

A long version of our family's story

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/15815

An article on Parents and the Internet at the U of Iowa

http://www.uihealthcare.com/news/pacemaker/2002/fall/ponsetti.html

Our Parents Research Paper on Clubfoot

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/20757

A study about the effect of the internet on the treatment of clubfoot

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=14575256 & dopt=Abstract

> > > > > Wanhai,

> > > > >

> > > > > You are better off than we were! We didn't find this board

> > until

> > > my

> > > > > son was 9 months old. I too am from Texas. I emailed

Ponseti

> > > > looking

> > > > > for certified doctors in Texas; there are none. I am seeing

> an

> > > > ortho

> > > > > here in Austin. She is dedicated to the method and working

on

> > > > > certifying (she just lacks a few pictures). If you can

make

> > the

> > > > trip

> > > > > to Iowa, do it. We planned for it, but my insurance

wouldn't

> > pay

> > > > for

> > > > > the doctor bills. Perhaps your wife could look into Family

> and

> > > > > Medical Leave Act (FMLA) and go to Iowa too.

> > > > >

> > > > > As for recasting. my son is still in casts at 10.5 months.

He

> > has

> > > > > severe bilateral club foot. I talked with my son's doctor

> when

> > I

> > > > had

> > > > > just about given up stating that so many people on this

board

> > are

> > > > > relapsing and having to be back in casts. I just couldn't

see

> > how

> > > > any

> > > > > method could really work. The reply was eye opening. He

> > > said " Well,

> > > > > you are getting just one side of the story. Most people who

> > only

> > > > took

> > > > > 6 cats and the dbb no longer visit the board or at least

not

> > as

> > > > > frequently. " Notice the word most, there are some on here.

> > > Despite

> > > > > that, this board has the best information around whether

you

> > have

> > > a

> > > > > set of tough feet or you get corrected in 6 casts and the

> > shoes.

> > > I

> > > > am

> > > > > glad you found this board, everyone on here is very helpful

> > and

> > > has

> > > > > more information than most the doctors in the continental

> > U.S

[Guest guest]

Cari,

Thanks for the clarification. I was not aware that you had already

communicated with Dr. Ponseti. I hope that you will soon be out of

the casting phase.

We live in Las Vegas, and when our child was born 5 years ago, we

began treatment with a local doctor that told us that 90% of the 40

children he treated per year over the prior 10 years had needed to

have the posterior release types of surgery. We were with that local

doctor for 6 short leg casts until we decided to go to Iowa. When we

went to Iowa, Dr.s Deitz and Ponseti corrected his feet in 2 casts

plus the tenotomy casts. We know a little of what it is like to be

getting casted where it wasn't really working, (but just 6 weeks

worth). I am sorry that you have had to deal with 10 months of on

and off casting.

Buy the way, our local doctor switched over to the Ponseti method

about 2-3 years ago and the last time I talked to him he said that he

had not had to do a posterior release type of surgery in the prior 15-

16 months.

and (3-17-99)

Our son 's Testimonial page (a short version of our story)

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/egbert.html

A long version of our family's story

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/15815

An article on Parents and the Internet at the U of Iowa

http://www.uihealthcare.com/news/pacemaker/2002/fall/ponsetti.html

Our Parents Research Paper on Clubfoot

http://health.groups.yahoo.com/group/nosurgery4clubfoot/message/20757

A study about the effect of the internet on the treatment of clubfoot

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=14575256 & dopt=Abstract

> > > > > Wanhai,

> > > > >

> > > > > You are better off than we were! We didn't find this board

> > until

> > > my

> > > > > son was 9 months old. I too am from Texas. I emailed

Ponseti

> > > > looking

> > > > > for certified doctors in Texas; there are none. I am seeing

> an

> > > > ortho

> > > > > here in Austin. She is dedicated to the method and working

on

> > > > > certifying (she just lacks a few pictures). If you can

make

> > the

> > > > trip

> > > > > to Iowa, do it. We planned for it, but my insurance

wouldn't

> > pay

> > > > for

> > > > > the doctor bills. Perhaps your wife could look into Family

> and

> > > > > Medical Leave Act (FMLA) and go to Iowa too.

> > > > >

> > > > > As for recasting… my son is still in casts at 10.5 months.

He

> > has

> > > > > severe bilateral club foot. I talked with my son's doctor

> when

> > I

> > > > had

> > > > > just about given up stating that so many people on this

board

> > are

> > > > > relapsing and having to be back in casts. I just couldn't

see

> > how

> > > > any

> > > > > method could really work. The reply was eye opening. He

> > > said " Well,

> > > > > you are getting just one side of the story. Most people who

> > only

> > > > took

> > > > > 6 cats and the dbb no longer visit the board or at least

not

> > as

> > > > > frequently. " Notice the word most, there are some on here.

> > > Despite

> > > > > that, this board has the best information around whether

you

> > have

> > > a

> > > > > set of tough feet or you get corrected in 6 casts and the

> > shoes.

> > > I

> > > > am

> > > > > glad you found this board, everyone on here is very helpful

> > and

> > > has

> > > > > more information than most the doctors in the continental

> > U.S