so glad to have found this page!

[Guest guest]

Hi there. My name is Amy, and I am due Feb. 28th. I have had two

level II ultrasounds (wks 19 and 23), and both detected that my baby

has bilateral clubfeet.

I am located in the Phoenix area, and am wondering if anyone knows

of any doctors in this area that use the Ponseti method.

I have heard of a Dr. in Tucson, however that's about it, so

far.

Anyway, I want to do as much research as possible before my baby

arrives, so that I'll be prepared to make some decisions.

I am thrilled to have found this page, and am so much more confident

that all will be ok, after taking the time to read alot of the posts.

Thanks in advance for everyone's support.

[Guest guest]

Hi Amy, welcome to our board! i'm sure you will find MORE than

enough help/support here! First off, congrats on your pregnancy ~

you have to be so excited. we're due with our 3rd child in 4 weeks

and are counting down the days! we didn't know our son (our 2nd

child) had CF until birth so there was a lot of scrambling to try to

figure out what to do - i'd never even seen a CF before! My MIL

found out about Dr. Ponseti and we flew from SW Florida to Iowa when

our son was 12 days old - this is definitely the best method of

treatment! our son is now 15 months old and is running everywhere!

you mentioned that you are in AZ, i don't know for sure if there are

any docs that practice Dr. P's method there, but here's the link...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

again, welcome and keep us updated on your pregnancy ~ please post

any questions you have ~ there are a lot of VERY knowledgeable

people on this board that have gone thru what you're going thru

now. best wishes - belly rubs from a fellow preggo

Tia & Kelby

8-3-01 bilateral CF

[Guest guest]

Thanks so much for your response! I wrote to Dr. P's office, and they don't

have anyone in Az on their list of certified Ponseti method doctors, so I do

have a bit of research to do. I do have a name of a pediatric orthopedic

surgeon in the area that " incorporates " the Ponseti method, and I have a

consultation scheduled with him in Dec., so I'll see what he has to say. He

comes very highly recommended, which makes me feel a little better.

I guess I'm glad to know ahead of time, but this is my first, and I have

been awfully worried too. I had an amnio done, so I do know that there

isn't anything else chromosome -related wrong, but I am still a little

stressed out, to say the least!

So you flew out to Iowa? How long did you stay? Im not opposed to flying

to Iowa, but I can't afford to do it on a weekly basis, so I'm wondering how

you worked it out?

Was it shocking for you to see the feet, esp. not expecting it? Sorry for

all of the questions....!!

Re: so glad to have found this page!

Hi Amy, welcome to our board! i'm sure you will find MORE than

enough help/support here! First off, congrats on your pregnancy ~

you have to be so excited. we're due with our 3rd child in 4 weeks

and are counting down the days! we didn't know our son (our 2nd

child) had CF until birth so there was a lot of scrambling to try to

figure out what to do - i'd never even seen a CF before! My MIL

found out about Dr. Ponseti and we flew from SW Florida to Iowa when

our son was 12 days old - this is definitely the best method of

treatment! our son is now 15 months old and is running everywhere!

you mentioned that you are in AZ, i don't know for sure if there are

any docs that practice Dr. P's method there, but here's the link...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

<http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html>

again, welcome and keep us updated on your pregnancy ~ please post

any questions you have ~ there are a lot of VERY knowledgeable

people on this board that have gone thru what you're going thru

now. best wishes - belly rubs from a fellow preggo

Tia & Kelby

8-3-01 bilateral CF

[Guest guest]

Thanks so much for your response! I wrote to Dr. P's office, and they don't

have anyone in Az on their list of certified Ponseti method doctors, so I do

have a bit of research to do. I do have a name of a pediatric orthopedic

surgeon in the area that " incorporates " the Ponseti method, and I have a

consultation scheduled with him in Dec., so I'll see what he has to say. He

comes very highly recommended, which makes me feel a little better.

I guess I'm glad to know ahead of time, but this is my first, and I have

been awfully worried too. I had an amnio done, so I do know that there

isn't anything else chromosome -related wrong, but I am still a little

stressed out, to say the least!

So you flew out to Iowa? How long did you stay? Im not opposed to flying

to Iowa, but I can't afford to do it on a weekly basis, so I'm wondering how

you worked it out?

Was it shocking for you to see the feet, esp. not expecting it? Sorry for

all of the questions....!!

Re: so glad to have found this page!

Hi Amy, welcome to our board! i'm sure you will find MORE than

enough help/support here! First off, congrats on your pregnancy ~

you have to be so excited. we're due with our 3rd child in 4 weeks

and are counting down the days! we didn't know our son (our 2nd

child) had CF until birth so there was a lot of scrambling to try to

figure out what to do - i'd never even seen a CF before! My MIL

found out about Dr. Ponseti and we flew from SW Florida to Iowa when

our son was 12 days old - this is definitely the best method of

treatment! our son is now 15 months old and is running everywhere!

you mentioned that you are in AZ, i don't know for sure if there are

any docs that practice Dr. P's method there, but here's the link...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

<http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html>

again, welcome and keep us updated on your pregnancy ~ please post

any questions you have ~ there are a lot of VERY knowledgeable

people on this board that have gone thru what you're going thru

now. best wishes - belly rubs from a fellow preggo

Tia & Kelby

8-3-01 bilateral CF

[Guest guest]

Thanks so much for your response! I wrote to Dr. P's office, and they don't

have anyone in Az on their list of certified Ponseti method doctors, so I do

have a bit of research to do. I do have a name of a pediatric orthopedic

surgeon in the area that " incorporates " the Ponseti method, and I have a

consultation scheduled with him in Dec., so I'll see what he has to say. He

comes very highly recommended, which makes me feel a little better.

I guess I'm glad to know ahead of time, but this is my first, and I have

been awfully worried too. I had an amnio done, so I do know that there

isn't anything else chromosome -related wrong, but I am still a little

stressed out, to say the least!

So you flew out to Iowa? How long did you stay? Im not opposed to flying

to Iowa, but I can't afford to do it on a weekly basis, so I'm wondering how

you worked it out?

Was it shocking for you to see the feet, esp. not expecting it? Sorry for

all of the questions....!!

Re: so glad to have found this page!

Hi Amy, welcome to our board! i'm sure you will find MORE than

enough help/support here! First off, congrats on your pregnancy ~

you have to be so excited. we're due with our 3rd child in 4 weeks

and are counting down the days! we didn't know our son (our 2nd

child) had CF until birth so there was a lot of scrambling to try to

figure out what to do - i'd never even seen a CF before! My MIL

found out about Dr. Ponseti and we flew from SW Florida to Iowa when

our son was 12 days old - this is definitely the best method of

treatment! our son is now 15 months old and is running everywhere!

you mentioned that you are in AZ, i don't know for sure if there are

any docs that practice Dr. P's method there, but here's the link...

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

<http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html>

again, welcome and keep us updated on your pregnancy ~ please post

any questions you have ~ there are a lot of VERY knowledgeable

people on this board that have gone thru what you're going thru

now. best wishes - belly rubs from a fellow preggo

Tia & Kelby

8-3-01 bilateral CF

[Guest guest]

Amy,

Congratulations on your pregnancy! About your post- I would be very

leary of a doctor who " incorporates " the Ponseti method. For the

best results, I would recommend finding a doctor who follows the

method as it was developed and taught in Iowa to a " T " . When

doctors " tweak " the method, they tend to have a lower success rate

(more than 95% of their cases need surgery to obtain correction).

I thought that the Salt Lake City Shriners Hospital held clubfoot

clinics in Phoenix regularly. Perhaps you could look into that

option? I believe the doctor there is Dr. Santora. I'm sure

will have the details on doctors in your area and will post to you as

soon as he's able. If you did choose to go to Iowa for treatment (or

any other location where you might have friends/relatives nearby) you

can expect 5-7 cast changes (up to 9 with the most severe feet) and

the casts are changed every 5-7 days. You could stay at the

Mc House, so housing is very inexpensive. You can also arrange

to fly for treatment for free through one of the volunteer pilot

organizations such as " Angel Flights " . They fly children all over

the U.S. for medical treatment. If you wanted to stay for the

duration of treatment, I'd expect to be there for roughly a month to

a month and a half. You could always break it up and go for a few

weeks at a time too. There are lots of parents here who have gone

and stayed the entire time at the RMD House, I'm sure they'd be

willing to share their experiences with you.

I, too, didn't know about my daughter's clubfoot until she was born

(despite numerous ultrasounds), so the sight of her foot did shock

me. Being a first time mom, though, I thought it might be " normal "

from being cramped in the womb, and it would just straighten itself

out. I've learned a lot about clubfoot since March of 2000! Don't

worry about the sight of your baby's feet, you won't be able to take

your eyes off that sweet face!

We're happy to have you here- feel free to post any questions or

concerns! I'll post my websites below if you're interested.

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

http://ponseticlubfoot.freeservers.com/

http://ponsetikids.freeservers.com/

> Thanks so much for your response! I wrote to Dr. P's office, and

they don't

> have anyone in Az on their list of certified Ponseti method

doctors, so I do

> have a bit of research to do. I do have a name of a pediatric

orthopedic

> surgeon in the area that " incorporates " the Ponseti method, and I

have a

> consultation scheduled with him in Dec., so I'll see what he has to

say. He

> comes very highly recommended, which makes me feel a little better.

>

> I guess I'm glad to know ahead of time, but this is my first, and I

have

> been awfully worried too. I had an amnio done, so I do know that

there

> isn't anything else chromosome -related wrong, but I am still a

little

> stressed out, to say the least!

>

> So you flew out to Iowa? How long did you stay? Im not opposed to

flying

> to Iowa, but I can't afford to do it on a weekly basis, so I'm

wondering how

> you worked it out?

>

> Was it shocking for you to see the feet, esp. not expecting it?

Sorry for

> all of the questions....!!

>

>

> Re: so glad to have found this page!

>

>

> Hi Amy, welcome to our board! i'm sure you will find MORE than

> enough help/support here! First off, congrats on your pregnancy ~

> you have to be so excited. we're due with our 3rd child in 4 weeks

> and are counting down the days! we didn't know our son (our 2nd

> child) had CF until birth so there was a lot of scrambling to try

to

> figure out what to do - i'd never even seen a CF before! My MIL

> found out about Dr. Ponseti and we flew from SW Florida to Iowa

when

> our son was 12 days old - this is definitely the best method of

> treatment! our son is now 15 months old and is running everywhere!

>

> you mentioned that you are in AZ, i don't know for sure if there

are

> any docs that practice Dr. P's method there, but here's the link...

> http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

>

<http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html>

>

> again, welcome and keep us updated on your pregnancy ~ please post

> any questions you have ~ there are a lot of VERY knowledgeable

> people on this board that have gone thru what you're going thru

> now. best wishes - belly rubs from a fellow preggo

> Tia & Kelby

> 8-3-01 bilateral CF

>

>

>

[Guest guest]

Amy,

Congratulations on your pregnancy! About your post- I would be very

leary of a doctor who " incorporates " the Ponseti method. For the

best results, I would recommend finding a doctor who follows the

method as it was developed and taught in Iowa to a " T " . When

doctors " tweak " the method, they tend to have a lower success rate

(more than 95% of their cases need surgery to obtain correction).

I thought that the Salt Lake City Shriners Hospital held clubfoot

clinics in Phoenix regularly. Perhaps you could look into that

option? I believe the doctor there is Dr. Santora. I'm sure

will have the details on doctors in your area and will post to you as

soon as he's able. If you did choose to go to Iowa for treatment (or

any other location where you might have friends/relatives nearby) you

can expect 5-7 cast changes (up to 9 with the most severe feet) and

the casts are changed every 5-7 days. You could stay at the

Mc House, so housing is very inexpensive. You can also arrange

to fly for treatment for free through one of the volunteer pilot

organizations such as " Angel Flights " . They fly children all over

the U.S. for medical treatment. If you wanted to stay for the

duration of treatment, I'd expect to be there for roughly a month to

a month and a half. You could always break it up and go for a few

weeks at a time too. There are lots of parents here who have gone

and stayed the entire time at the RMD House, I'm sure they'd be

willing to share their experiences with you.

I, too, didn't know about my daughter's clubfoot until she was born

(despite numerous ultrasounds), so the sight of her foot did shock

me. Being a first time mom, though, I thought it might be " normal "

from being cramped in the womb, and it would just straighten itself

out. I've learned a lot about clubfoot since March of 2000! Don't

worry about the sight of your baby's feet, you won't be able to take

your eyes off that sweet face!

We're happy to have you here- feel free to post any questions or

concerns! I'll post my websites below if you're interested.

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 months old

http://ponseticlubfoot.freeservers.com/

http://ponsetikids.freeservers.com/

> Thanks so much for your response! I wrote to Dr. P's office, and

they don't

> have anyone in Az on their list of certified Ponseti method

doctors, so I do

> have a bit of research to do. I do have a name of a pediatric

orthopedic

> surgeon in the area that " incorporates " the Ponseti method, and I

have a

> consultation scheduled with him in Dec., so I'll see what he has to

say. He

> comes very highly recommended, which makes me feel a little better.

>

> I guess I'm glad to know ahead of time, but this is my first, and I

have

> been awfully worried too. I had an amnio done, so I do know that

there

> isn't anything else chromosome -related wrong, but I am still a

little

> stressed out, to say the least!

>

> So you flew out to Iowa? How long did you stay? Im not opposed to

flying

> to Iowa, but I can't afford to do it on a weekly basis, so I'm

wondering how

> you worked it out?

>

> Was it shocking for you to see the feet, esp. not expecting it?

Sorry for

> all of the questions....!!

>

>

> Re: so glad to have found this page!

>

>

> Hi Amy, welcome to our board! i'm sure you will find MORE than

> enough help/support here! First off, congrats on your pregnancy ~

> you have to be so excited. we're due with our 3rd child in 4 weeks

> and are counting down the days! we didn't know our son (our 2nd

> child) had CF until birth so there was a lot of scrambling to try

to

> figure out what to do - i'd never even seen a CF before! My MIL

> found out about Dr. Ponseti and we flew from SW Florida to Iowa

when

> our son was 12 days old - this is definitely the best method of

> treatment! our son is now 15 months old and is running everywhere!

>

> you mentioned that you are in AZ, i don't know for sure if there

are

> any docs that practice Dr. P's method there, but here's the link...

> http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html

>

<http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Physicians.html>

>

> again, welcome and keep us updated on your pregnancy ~ please post

> any questions you have ~ there are a lot of VERY knowledgeable

> people on this board that have gone thru what you're going thru

> now. best wishes - belly rubs from a fellow preggo

> Tia & Kelby

> 8-3-01 bilateral CF

>

>

>

[Guest guest]

Hello Amy,

There is a doctor in Tucson and one in Phoenix who indicate that they

are using the Ponseti method. I believe that they each have only

been there for a year or two after having been at the Portland

Shriners for a number of years. The 2 lead doctors at the Portlands

Shriners have been on Dr. Ponseti's list for a couple of years.

A message about Dr. in Tucson can be seen at

http://groups.yahoo.com/group/nosurgery4clubfoot/message/10855

I had talked to Dr. Hirasky in Phoenix last spring. He is practicing

the Ponseti method in Phoenix. His phone # is . He

received training in Iowa last September (2001?) and was previously

with Dr. at Portland Shriners. Dr. practices the

Ponseti method in Tuscon.

Since they are not yet on Dr. Ponseti's site, you should try to

determine how closely they are following the method. In order to get

on his list, Dr. Ponseti likes to see information from cases that the

doctor has treated and if possible see some of their patients.

Dr. Ponseti has also indicated that we can ask a couple of questions

to get an indication as to how experienced and/or how well a doctor

is using the method. The questions are:

1. How many children have you treated with the Ponseti method and

what percentage have you been able to correct without the posterior

release types of surgery? The answer should be less than 10% have

needed the surgery and hopefully closer to 5%. The number treated

with give you and idea of how much experience.

2. How many casts (on average) does it take you to correctly position

the children's feet? The answer should be 4-7 and never more than 9

casts. My impression is that doctors who are beginning to use the

method may need more casts than those who have had more experience.

Since you have a few months, I would encourage you to go meet with

the doctors you are considering to see what you thing and get to know

them a bit.

and (3-17-99)

http://www.vh.org/Patients/IHB/Ortho/Peds/Clubfeet/Egbert.html

> Hi there. My name is Amy, and I am due Feb. 28th. I have had two

> level II ultrasounds (wks 19 and 23), and both detected that my

baby

> has bilateral clubfeet.

> I am located in the Phoenix area, and am wondering if anyone knows

> of any doctors in this area that use the Ponseti method.

> I have heard of a Dr. in Tucson, however that's about it,

so

> far.

> Anyway, I want to do as much research as possible before my baby

> arrives, so that I'll be prepared to make some decisions.

> I am thrilled to have found this page, and am so much more

confident

> that all will be ok, after taking the time to read alot of the

posts.

> Thanks in advance for everyone's support.

[Guest guest]

yes it was quite shocking when our son was born ~ i think it was a

little more difficult for our son who watched the birth, he was 11

at the time. he was so afraid his brother would never walk, play

sports etc... fortunately CF is the easiest deformity (it took me a

long time to be able to say that word) to fix. i flew with the baby

to iowa and we stayed at the Mc House for 3 weeks.

kelby was casted the day after we got there (13 days old) and had a

new cast done every 5 days. he had his tenotomy and last casting

done the day before we left. i think (?) i answered all the

questions feel free to fire away with more, that's what everyone

is here for!

Tia

[Guest guest]

yes it was quite shocking when our son was born ~ i think it was a

little more difficult for our son who watched the birth, he was 11

at the time. he was so afraid his brother would never walk, play

sports etc... fortunately CF is the easiest deformity (it took me a

long time to be able to say that word) to fix. i flew with the baby

to iowa and we stayed at the Mc House for 3 weeks.

kelby was casted the day after we got there (13 days old) and had a

new cast done every 5 days. he had his tenotomy and last casting

done the day before we left. i think (?) i answered all the

questions feel free to fire away with more, that's what everyone

is here for!

Tia