Re: Please help to figure this out!!!

[Guest guest]

Hi !

First of congratulations on your new little boy!!

I can tell you my personal feelings on why we chose the Ponseti method of

treatment. We also did much research and were not wholly convinced at first

that the Ponseti method was the way to go. It seemed like just having a quick

fix surgery would be so much easier. I kept asking the same question at the

time, what makes the Ponseti method so much better?

After reading, and reading, and reading some more I realized that the quick fix

surgery has several problems. First it is usually NOT a quick fix. There would

still be six weeks of casting after the procedure along with the accompanying

pain of surgery. Second, all clubfeet will relapse after correction if not

braced in some way for a number of years. It is the nature of clubfeet. So we

were looking at some sort of brace, whether it be DBB or AFO for a number of

years. The next thing that we looked at was the fact that although a doctor may

tell you that one surgery will fix it all, it seems that eventually the child

ends up needing several more surgeries before they are done growing just to

tweak the correction.

The final thing that convinced me was just reading over and over the many, many

stories of kids who have pain and stiffness in their feet as a result of having

had PMR types of clubfoot correction surgeries. I was reading studies about

kids with early onset arthritis as young as their teen years and actual posts

from parents of kids as young as 4-5 having painful feet as a result of the

surgery. Also posts from adults who had the surgery and could barely walk in

their twenties.

Granted these cases may not be the vast majority of results of surgery, but for

me it came down to this...If I could give my child any opportunity at all to

live life with pain free feet, then I needed to take that step.

My daughter is three years 2 months old and has beautiful pain-free, scar-free

feet. She will never know the pain of early onset arthritis due to clubfoot

repair surgery, and she is as active as any other three year old. She reached

all her milestones on time and some even early in spite of being in casts and

then braces. She still wears her DBB and will continue to do so until Dr.

Ponseti tells us that she is past the risk of relapse.

Hope that helps you and good luck to you!!

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

Please help to figure this out!!!

Hi,

I'm new to this group and to this whole clubfoot problem. My son was

born with clubfeet 2 weeks ago. Of course I immediately went on the

internet to research on what can be done. It seems that this problem

is fixable in most of the cases. The only thing I can't figure out

which method is better: Ponseti or traditional. Yes, it seems that

the Ponseti is much faster but is it as effective? I want this

problem tobe fixed once and for all. Will Ponseti do that? If anyone

could explain to me why they chose one method instead of the other I

would really appreciate it.

Thanks in advance,

[Guest guest]

Hi !

First of congratulations on your new little boy!!

I can tell you my personal feelings on why we chose the Ponseti method of

treatment. We also did much research and were not wholly convinced at first

that the Ponseti method was the way to go. It seemed like just having a quick

fix surgery would be so much easier. I kept asking the same question at the

time, what makes the Ponseti method so much better?

After reading, and reading, and reading some more I realized that the quick fix

surgery has several problems. First it is usually NOT a quick fix. There would

still be six weeks of casting after the procedure along with the accompanying

pain of surgery. Second, all clubfeet will relapse after correction if not

braced in some way for a number of years. It is the nature of clubfeet. So we

were looking at some sort of brace, whether it be DBB or AFO for a number of

years. The next thing that we looked at was the fact that although a doctor may

tell you that one surgery will fix it all, it seems that eventually the child

ends up needing several more surgeries before they are done growing just to

tweak the correction.

The final thing that convinced me was just reading over and over the many, many

stories of kids who have pain and stiffness in their feet as a result of having

had PMR types of clubfoot correction surgeries. I was reading studies about

kids with early onset arthritis as young as their teen years and actual posts

from parents of kids as young as 4-5 having painful feet as a result of the

surgery. Also posts from adults who had the surgery and could barely walk in

their twenties.

Granted these cases may not be the vast majority of results of surgery, but for

me it came down to this...If I could give my child any opportunity at all to

live life with pain free feet, then I needed to take that step.

My daughter is three years 2 months old and has beautiful pain-free, scar-free

feet. She will never know the pain of early onset arthritis due to clubfoot

repair surgery, and she is as active as any other three year old. She reached

all her milestones on time and some even early in spite of being in casts and

then braces. She still wears her DBB and will continue to do so until Dr.

Ponseti tells us that she is past the risk of relapse.

Hope that helps you and good luck to you!!

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

Please help to figure this out!!!

Hi,

I'm new to this group and to this whole clubfoot problem. My son was

born with clubfeet 2 weeks ago. Of course I immediately went on the

internet to research on what can be done. It seems that this problem

is fixable in most of the cases. The only thing I can't figure out

which method is better: Ponseti or traditional. Yes, it seems that

the Ponseti is much faster but is it as effective? I want this

problem tobe fixed once and for all. Will Ponseti do that? If anyone

could explain to me why they chose one method instead of the other I

would really appreciate it.

Thanks in advance,

[Guest guest]

,

My daughter Kelsey is 1 year old and has a left clubfoot. We began

treatment with a non-Ponseti Doctor who casted her a few times, not

consecutively and after several months, put her in an AFO brace. This

never really worked because her foot was never really corrected. His

solution was to wait until she was 3 or 4 and do a tendon surgery but

to keep her in this AFO brace until then. Well, because the foot was

not corrected properly, the AFO was a nightmare for us. So, when Kelsey

was 9 months old and her foot was no better, we decided to try a Ponseti

Doctor. AT 10 months, she saw Dr. Von Stein who confirmed that her

foot was not corrected and we began the casting process. She went

through 3 weekly casts and then had the tenotomy procedure followed by

another cast for 3 weeks. When that cast came off, I saw, for the first

time, a perfect little foot. She is now in the DBB full time for 3

months which has had its challenges but is going pretty smoothly for the

most part.

I chose this method for Kelsey because the traditional approach was

getting us nowhere. I also decided against seeking out surgery because

although the idea of a quick fix was appealing to me, no one could tell

me that they could just fix it and get rid of all of the braces and

everything which is the part I hate about it all to begin with. Plus, I

really wanted to avoid major surgery if I can at all. I also know with

the Ponseti method, Kelsey has experienced much less pain even in the

castings. Having gone two different directions, I would definitely

recommend the Ponseti method. For us, it was the only route that was

effective.

Jenni

vperelshteyn wrote:

>

>Hi,

>

>I'm new to this group and to this whole clubfoot problem. My son was

>born with clubfeet 2 weeks ago. Of course I immediately went on the

>internet to research on what can be done. It seems that this problem

>is fixable in most of the cases. The only thing I can't figure out

>which method is better: Ponseti or traditional. Yes, it seems that

>the Ponseti is much faster but is it as effective? I want this

>problem tobe fixed once and for all. Will Ponseti do that? If anyone

>could explain to me why they chose one method instead of the other I

>would really appreciate it.

>

>Thanks in advance,

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hello ,

You have asked one of our favorite questions! Why is Ponseti better than

traditional methods? I'll try not to be too long winded.

You want the problem fixed " once and for all " . Of course. What happens in

the traditional methods of correction is the foot gets operated on to some

degree (some worse than others). The surgery leads to scar tissue later in

life, which builds up, causes pain, dysfunction, crippling.....and usually more

operations to fix the mess the previous operation caused. It's a domino effect.

Often the doctor will attempt serial casting prior to surgery - often months

worth of casting before he gives up. Be advised however that not all serial

casting is the same. Done properly, it should take a few weeks, not months.

While the traditional methods of correction seem like a faster fix because BAM,

one little operation and it's done! - it's not faster because they end up

causing a life time of ill results beginning in some cases immediately, in other

cases not until the teen growth spurts or adulthood. It does not fix the foot

" once and for all " .....quite the contrary.

The Ponseti method on the other hand does seem like a lengthy process and to

some degree it is. However, the end result is a totally corrected foot that is

normal. There is no scar tissue to build up and cause trouble down the road.

The treatment itself is nearly pain free (if done correctly). The child wears

a series of casts that are changed every 5 days or so; about five castings is

typical but it varies a few either way. Some children require a

tenotomy.....and this is where some get confused because while this is

considered a " surgical procedure " , it's not surgery. A small nick is put in to

the achilies tendon to allow it to stretch out to normal length. In most cases

it's done on an out-patient basis while the parent is in the room. The last

phase of treatment is the Dennis Brown Bar, known here as the DBB. This is a

pair of boots connected by a shoulder-width bar between them. The child wears

this 24 hours a day 7 days a week for the first three months. After that the

hours gradually decrease until the child is walking, then it's worn about 12 to

14 hours per day - basically at bed time.

The child will wear the DBB for approximately 3 to 4 years. This is daunting to

many parents to think of the correction lasting three or four years when surgery

is done in a day plus recovery time. But the DBB is critical to maintain the

correction the casting achieved as the child's bones grow and harden. Done

right, there is a 95% or better success rate that this non surgical procedure

will work.

While it's little known, Dr. Ponseti and his method have been around fixing

babies for nearly 50 years.

I know this is getting long so I'll finish up by quickly saying I have two boys,

both with bilateral club feet (both feet on both boys). I have gone both

routes, too, and can see first hand the difference between the treatments.

Please know you are welcome to ask anything you want to ask here, no questions

are stupid.

Congratulations on your new bundle of joy!

s.

Please help to figure this out!!!

Hi,

I'm new to this group and to this whole clubfoot problem. My son was

born with clubfeet 2 weeks ago. Of course I immediately went on the

internet to research on what can be done. It seems that this problem

is fixable in most of the cases. The only thing I can't figure out

which method is better: Ponseti or traditional. Yes, it seems that

the Ponseti is much faster but is it as effective? I want this

problem tobe fixed once and for all. Will Ponseti do that? If anyone

could explain to me why they chose one method instead of the other I

would really appreciate it.

Thanks in advance,

[Guest guest]

,

Congrats on your new baby! You're certainly a motivated mommy if you

just found out about his clubfoot at birth and have already been

researching on the Internet! Good for you!

Here was the bottom line for us- when I asked the pediatric surgeon

who wanted to do the PMR procedure on my daughter if she would have

pain in her foot as a teen or adult, he looked at me and said that he

couldn't guarantee that- and then proceeded to ask us to be a

participant in his study to follow his patients into their teens and

publish the results.

When Dr. P was asked the same question, he told me her foot would be

completely normal and completely functional. Dr. Ponseti has

published long-term results showing that what he says is in fact true.

You can read my daughter's story at our website if you want:

http://ponseticlubfoot.freeservers.com/

Yes, the Ponseti method is effective and yes, the feet are functional.

It's not " too good to be true " and we have hundreds of families here

on this board who will testify to that fact. I hope there's a good

doctor near you- if you need help finding one, or want referrals,

just ask!

Welcome and feel free to ask any questions!

Oh, and one caveat- once correction is achieved it will be critical

that you follow the bracing protocol in order to reduce the chance of

relapse. Relapse is always a concern regardless of what method of

correction you choose, but by following the bracing protocol, the

odds of relapse w/ the Ponseti method are greatly reduced.

& (3-16-00)

left clubfoot

switched to Ponseti method at 4 mo. old

>

>

> Hi,

>

> I'm new to this group and to this whole clubfoot problem. My son

was

> born with clubfeet 2 weeks ago. Of course I immediately went on

the

> internet to research on what can be done. It seems that this

problem

> is fixable in most of the cases. The only thing I can't figure out

> which method is better: Ponseti or traditional. Yes, it seems

that

> the Ponseti is much faster but is it as effective? I want this

> problem tobe fixed once and for all. Will Ponseti do that? If

anyone

> could explain to me why they chose one method instead of the other

I

> would really appreciate it.

>

> Thanks in advance,

>

>

[Guest guest]

,

I'm sure many will respond to this with lots of good information. I just

wanted to simply answer that the traditional method of correction is

surgery, a very major surgery where they move tendons and bones and often

use pins. If you want this to be fixed once and for all, you can't rely on

surgery to do that. Most surgical CF feet need numerous surgeries, not

just one and while the foot functions... it is often painful, stiff and

relapses multiple times. Adult surgical feet are often not happy feet as

many adults have come here to tell us.

The Ponseti Method does take time and dedication. However if you've been

told that surgery is fast... or an easy fix you've been misled. No surgery

is easy, it's painful. There are moms here who will tell you that their

child has had 5 or 6 surgeries all by the time they were 6yo. That, is not

fast either. So many of us felt overwhelmed when faced with 3+ years of

bracing our child. But I am now nearly 2 years into it and I wouldn't give

back these past two years for any quick fix surgery if I was paid to do

it. It really has gone so well that I am having a hard time imagining it's

been that long. My daughter will very likely grow up and NEVER know there

was any problem with her foot unless we tell her. Her foot is just perfect.

I really hope that you will choose the Ponseti Method. We parents wouldn't

be here urging other parents to do this if it didn't work so well. You

won't be disappointed with the results. At the very, very least... should

for some reason the foot still relapse and your son would eventually need

surgery (we all face this possibility but it's less than 5% chance if the

method is applied correctly) the surgery to fix THIS foot is nowhere near

the major surgery that has been the gold standard for correcting clubfoot

in the past. In a nutshell, you have 5-7 weekly casts, a tenotomy (if

needed) and then a 3w cast and then your child goes into the brace. It is

worn till at least 3yo, perhaps 4 or so depending on severity and then in

95% of the cases the foot is fixed forever! That's it! Sounds worse than

it actually is, I promise.

If you're asking us... and it seems that you are... IMO the Ponseti

Method is clearly the only choice. No matter what you have to do to get it

done properly, it is the best option for these feet out there. Remember

though, as so many of us have found that many doc's will butcher the proper

method and that will only cause problems or make the feet worse. Make sure

you're seeing a good doc, hopefully someone that a parent here can

recommend who is not going to modify the method and cause harm.

We're here for you too with any questions or problems you may come up

against so don't be afraid to post. Good luck with whatever method you

choose and I hope to see you here with happy feet baby soon!

Kori

Darbi Rt. CF - FAB 12+hr/day

At 04:44 PM 12/12/2004, you wrote:

>Hi,

>

>I'm new to this group and to this whole clubfoot problem. My son was

>born with clubfeet 2 weeks ago. Of course I immediately went on the

>internet to research on what can be done. It seems that this problem

>is fixable in most of the cases. The only thing I can't figure out

>which method is better: Ponseti or traditional. Yes, it seems that

>the Ponseti is much faster but is it as effective? I want this

>problem tobe fixed once and for all. Will Ponseti do that? If anyone

>could explain to me why they chose one method instead of the other I

>would really appreciate it.

>

>Thanks in advance,

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I also did alot of research before I decided to go with the Ponseti Method. My

child was in the NICU for 2mo. before I could bring him home and they purport

the French method. I was so sure we wanted our child to use the Ponseti method

that I waited until he was out of the hospital before we began treatment.

Why the Ponseti method? The reason we chose this treatment is it's longevity of

results. Dr. Ponseti has the longest tracked results of successful treatment

than any other method. Second, it was non-surgical. I actually worked with two

men who were born with clubfeet. One was bilateral and was corrected by the

Ponseti method. Today he is 40, walks & runs perfectly normal with no pain at

all. He doesn't remember any of it and has never had a problem with his feet.

Another man I work with was born w/just right clubfoot. He had several surgies.

His right foot is noticable smaller than the left, he walks with a limp, and

says he is in constant pain or dicomfort. For me that was all I needed to know.

Best of luck to you.

vperelshteyn vperelshteyn@...> wrote:

Hi,

I'm new to this group and to this whole clubfoot problem. My son was

born with clubfeet 2 weeks ago. Of course I immediately went on the

internet to research on what can be done. It seems that this problem

is fixable in most of the cases. The only thing I can't figure out

which method is better: Ponseti or traditional. Yes, it seems that

the Ponseti is much faster but is it as effective? I want this

problem tobe fixed once and for all. Will Ponseti do that? If anyone

could explain to me why they chose one method instead of the other I

would really appreciate it.

Thanks in advance,

[Guest guest]

Hi ,

I also did alot of research before I decided to go with the Ponseti Method. My

child was in the NICU for 2mo. before I could bring him home and they purport

the French method. I was so sure we wanted our child to use the Ponseti method

that I waited until he was out of the hospital before we began treatment.

Why the Ponseti method? The reason we chose this treatment is it's longevity of

results. Dr. Ponseti has the longest tracked results of successful treatment

than any other method. Second, it was non-surgical. I actually worked with two

men who were born with clubfeet. One was bilateral and was corrected by the

Ponseti method. Today he is 40, walks & runs perfectly normal with no pain at

all. He doesn't remember any of it and has never had a problem with his feet.

Another man I work with was born w/just right clubfoot. He had several surgies.

His right foot is noticable smaller than the left, he walks with a limp, and

says he is in constant pain or dicomfort. For me that was all I needed to know.

Best of luck to you.

vperelshteyn vperelshteyn@...> wrote:

Hi,

I'm new to this group and to this whole clubfoot problem. My son was

born with clubfeet 2 weeks ago. Of course I immediately went on the

internet to research on what can be done. It seems that this problem

is fixable in most of the cases. The only thing I can't figure out

which method is better: Ponseti or traditional. Yes, it seems that

the Ponseti is much faster but is it as effective? I want this

problem tobe fixed once and for all. Will Ponseti do that? If anyone

could explain to me why they chose one method instead of the other I

would really appreciate it.

Thanks in advance,

[Guest guest]

,

My FIL (Devlin's grandfather) was born with unilateral CF and was

treated with surgery. He has stiffness and pain when walking (and

he's a roofer---bad job to have when you hobble). So, when we found

out at the 19-week US I started researching (being on bedrest gave me

LOTS of time for research). We decided we wanted to try the Ponseti

method---at least at first because it made so much sense to maneuver

the bones when they're still so soft.

Unfortunately, one thing I did not understand from my research is

that many doctors will go around saying they practice the Ponseti

method when they DO NOT! We discovered this months into Devlin's

treatment. I'm sure there are many good orthopedic surgeons out

there who are happy to have successful CF treatment with only

casting, but remember how much more money they make from surgery!

One of the unfortunate things about health care (in the USA, anyway)

is that it is, first and foremost, a business.

I very, very, stongly suggest that if you decide to give the Ponseti

method a try, make sure you have a TRUE Ponseti doctor working on

your baby! You can find a list of doctors at

http://www.vh.org/pediatric/patient/orthopaedics/clubfeet/physicians.h

tml .

Good luck with your baby's treatment.

>

>

> Hi,

>

> I'm new to this group and to this whole clubfoot problem. My son

was

> born with clubfeet 2 weeks ago. Of course I immediately went on

the

> internet to research on what can be done. It seems that this

problem

> is fixable in most of the cases. The only thing I can't figure out

> which method is better: Ponseti or traditional. Yes, it seems

that

> the Ponseti is much faster but is it as effective? I want this

> problem tobe fixed once and for all. Will Ponseti do that? If

anyone

> could explain to me why they chose one method instead of the other

I

> would really appreciate it.

>

> Thanks in advance,

>

>