Re: Re: I'm new and an update

[Guest guest]

I'm so glad to hear that you are going to give the Ponseti method a try. I'm

sure that Dr. Ponseti will tell you that it most certainly is not too late to

try with your 9 month old child. We took our daughter to see Dr. Ponseti at 5

months old. She had been casted with traditional casts from 7 days old right up

to the day that we went to Iowa, but none of those casts had done anything to

improve her severe clubfoot. In fact, many had made the situation worse. Dr.

Ponseti was able to completely correct her clubfoot with just 4 more casts. In

4 short weeks we were completely done with casts and had moved onto the FAB

portion of the protocol. Looking back, my only regret was not having gone

sooner. We were aware of the Ponseti method shortly after Olivia's birth, but

don't live near a Ponseti qualified physician. In our endevour to save some

money we tried several doctors who claimed to be using the Ponseti method, but

were in fact not. We finally bit the bullet and made the trip to Iowa City and

like I said before, the results have been worth every penny that we spent!

Luckily you found this group in time! Please feel free to ask any questions

that you have even if they seem silly to you! We've all been in the place

you're at and it's sometimes not a fun place to be! I can remember crying

because once we finally made the decision to go to Iowa, I was scared to death

that we had waited to long. Fortunately, with the help of this group and Dr.

Ponseti, Livie has a perfect little foot with no scarring from needless

surgeries.

Please keep us updated on what is happening with your son and our prayers are

with you!

Jen & Livie

Re: I'm new and an update

Thank you so much for all of your input into our surgery decision. I

had my husband look at Dr. Ponseti's website and we both feel we want

to research this method some more before we agree to such an invasive

surgery. My husband actually cried and couldn't believe we never took

the time before to do a little research on clubfoot.

I've e-mailed Dr. Ponseti explaining our situation and asking him if

it's too late to try his method since my son is already nine months

old. That is my husband's concern is that it's too late.

If anyone knows of a doctor in Maine who is trained in this method

please let me know. Otherwise we will probably go to Massachusetts

for a second opinion. I can't tell you enough how much I appreciate

all of your advice because I've been dreading the idea of surgery and

now I feel like we have another alternative. Thanks again.

[Guest guest]

Being listed on Dr. Ponseti's website is a very good start to discovering if the

doctor is actually using the protocol correctly. Unfortunately, it is not the

whole story. In order to be listed on the site, a doctor must answer a number

of questions for Dr. Ponseti as to casting techniques and results. They must

also send photos of corrected feet to Dr. Ponseti. Based on this information he

makes the determination whether or not they are successfully using his method.

Once they are listed as a qualified physician, there is nothing to stop them

from trying to " tweak " Dr. Ponseti's protocol.

On the flip side, there are a number of doctors who are successfully using the

protocol as it is described by Dr. Ponseti, but have not gone through the

process of getting certified by Dr. Ponseti.

The best thing you can do is educate yourself as much as possible about the

protocol and ask a lot of questions. Above all, go with your gut feelings. If

it doesn't seem right, then it probably isn't right. As someone else mentioned,

because your son is 9 months old, you are going to want to be have him seen by a

qualified and experienced physician. Ask Dr. Ponseti, he may know of a

physician in your area who is qualified, but not listed on his website.

The Ponseti method should take an average of 5-7 casts for full correction with

a probably tenotomy performed before the last cast. Some babies have less

casts, some have more, but it should never take more than 9 casts. The tenotomy

is not always done, but in most cases it is. Following casting, the baby wears

the FAB (or DBB) for three months 23 hours a day, followed by reduced brace time

as they learn to crawl and then walk.

I'm sure others will be able to give you links that will help you! I am on my

way to work and it has been well over two years since we were at this point, so

I am not familiar with where the information is still at on the internet. I

know someone has put together a list of questions to ask the doctor that would

be helpful for you, but again, I'm not sure of the link. Anybody know where

that is??

Good luck and remember to keep asking questions!!

Jen & Livie (10-18-01 severe left clubfoot)

Re: I'm new and an update

> I'm so glad to hear that you are going to give the Ponseti method a

try. I'm sure that Dr. Ponseti will tell you that it most certainly

is not too late to try with your 9 month old child. We took our

daughter to see Dr. Ponseti at 5 months old. She had been casted

with traditional casts from 7 days old right up to the day that we

went to Iowa, but none of those casts had done anything to improve

her severe clubfoot. In fact, many had made the situation worse.

Dr. Ponseti was able to completely correct her clubfoot with just 4

more casts. In 4 short weeks we were completely done with casts and

had moved onto the FAB portion of the protocol. Looking back, my

only regret was not having gone sooner. We were aware of the Ponseti

method shortly after Olivia's birth, but don't live near a Ponseti

qualified physician. In our endevour to save some money we tried

several doctors who claimed to be using the Ponseti method, but were

in fact not.

How will I know if the doctor we see is really using the Ponseti

method? If they're listed on his website can I assume they're

qualified?

[Guest guest]

Being listed on Dr. Ponseti's website is a very good start to discovering if the

doctor is actually using the protocol correctly. Unfortunately, it is not the

whole story. In order to be listed on the site, a doctor must answer a number

of questions for Dr. Ponseti as to casting techniques and results. They must

also send photos of corrected feet to Dr. Ponseti. Based on this information he

makes the determination whether or not they are successfully using his method.

Once they are listed as a qualified physician, there is nothing to stop them

from trying to " tweak " Dr. Ponseti's protocol.

On the flip side, there are a number of doctors who are successfully using the

protocol as it is described by Dr. Ponseti, but have not gone through the

process of getting certified by Dr. Ponseti.

The best thing you can do is educate yourself as much as possible about the

protocol and ask a lot of questions. Above all, go with your gut feelings. If

it doesn't seem right, then it probably isn't right. As someone else mentioned,

because your son is 9 months old, you are going to want to be have him seen by a

qualified and experienced physician. Ask Dr. Ponseti, he may know of a

physician in your area who is qualified, but not listed on his website.

The Ponseti method should take an average of 5-7 casts for full correction with

a probably tenotomy performed before the last cast. Some babies have less

casts, some have more, but it should never take more than 9 casts. The tenotomy

is not always done, but in most cases it is. Following casting, the baby wears

the FAB (or DBB) for three months 23 hours a day, followed by reduced brace time

as they learn to crawl and then walk.

I'm sure others will be able to give you links that will help you! I am on my

way to work and it has been well over two years since we were at this point, so

I am not familiar with where the information is still at on the internet. I

know someone has put together a list of questions to ask the doctor that would

be helpful for you, but again, I'm not sure of the link. Anybody know where

that is??

Good luck and remember to keep asking questions!!

Jen & Livie (10-18-01 severe left clubfoot)

Re: I'm new and an update

> I'm so glad to hear that you are going to give the Ponseti method a

try. I'm sure that Dr. Ponseti will tell you that it most certainly

is not too late to try with your 9 month old child. We took our

daughter to see Dr. Ponseti at 5 months old. She had been casted

with traditional casts from 7 days old right up to the day that we

went to Iowa, but none of those casts had done anything to improve

her severe clubfoot. In fact, many had made the situation worse.

Dr. Ponseti was able to completely correct her clubfoot with just 4

more casts. In 4 short weeks we were completely done with casts and

had moved onto the FAB portion of the protocol. Looking back, my

only regret was not having gone sooner. We were aware of the Ponseti

method shortly after Olivia's birth, but don't live near a Ponseti

qualified physician. In our endevour to save some money we tried

several doctors who claimed to be using the Ponseti method, but were

in fact not.

How will I know if the doctor we see is really using the Ponseti

method? If they're listed on his website can I assume they're

qualified?

[Guest guest]

Aw I'm sitting here with tears in my eyes for you and your husband. I

know how it feels to suddenly wake up and find out all that misery was for

nothing - and your poor child who suffered when he didn't have to. If we can do

ANY thing, please write me.

s.

Re: I'm new and an update

Thank you so much for all of your input into our surgery decision. I

had my husband look at Dr. Ponseti's website and we both feel we want

to research this method some more before we agree to such an invasive

surgery. My husband actually cried and couldn't believe we never took

the time before to do a little research on clubfoot.

I've e-mailed Dr. Ponseti explaining our situation and asking him if

it's too late to try his method since my son is already nine months

old. That is my husband's concern is that it's too late.

If anyone knows of a doctor in Maine who is trained in this method

please let me know. Otherwise we will probably go to Massachusetts

for a second opinion. I can't tell you enough how much I appreciate

all of your advice because I've been dreading the idea of surgery and

now I feel like we have another alternative. Thanks again.

[Guest guest]

I met a family that flew in from India to see Dr. Ponseti when I was there once.

s.

Re: I'm new and an update

,

I'm very glad that you wrote to Dr. Ponseti.

9 months isn't too late.. Once when I was in Iowa, I met a couple who

had come all the way from Spain, with their 9 month old boy, for

treatment from Dr. Ponseti. He had responded wonderfully to the

casting, and was doing great.

The older the child is, though, it is all the more important to go to

a doctor who is very skilled in the method. In your part of the

country, the doctors on the list in New York City (Lehman, Feldman,

etc.) have had quite a bit of experience. Also Dr. Herzenberg in

Baltimore. I can't tell you much about the ones in Massachusetts. If

you are considering going to one of them, I'd recommend that you ask

Dr. Ponseti about them by name.

You can also, of course, consider making a trip 'to the source', in

Iowa. If you come from far away, the casting process is sped up, with

casts changed every 5 days. Families come and stay in the

Mc House near the hospital, and the feet can be corrected

within a couple of weeks perhaps.

Hang in there.. please let us know what you hear, and know how we can

help.. We've been where you are!

and Claire

> Thank you so much for all of your input into our surgery decision.

I

> had my husband look at Dr. Ponseti's website and we both feel we

want

> to research this method some more before we agree to such an

invasive

> surgery. My husband actually cried and couldn't believe we never

took

> the time before to do a little research on clubfoot.

>

> I've e-mailed Dr. Ponseti explaining our situation and asking him

if

> it's too late to try his method since my son is already nine months

> old. That is my husband's concern is that it's too late.

>

> If anyone knows of a doctor in Maine who is trained in this method

> please let me know. Otherwise we will probably go to Massachusetts

> for a second opinion. I can't tell you enough how much I appreciate

> all of your advice because I've been dreading the idea of surgery

and

> now I feel like we have another alternative. Thanks again.

>

>

[Guest guest]

Try to get references from other patients and from this board because the sad

fact is that some of these doctors have started trying to re-invent the

wheel......modifying the method with poor results. Ponseti's protocol must be

followed to the letter!

s.

How will I know if the doctor we see is really using the Ponseti

method? If they're listed on his website can I assume they're

qualified?