Re: Questions filled

March 3, 2006

>

> Lastly,is it really possible for this clubfeet child to live a normal

> life? It is one of those things that I want to keep hearing days and

> nights.

>

> Thanks for reading long email.

>

> Jane

Jane,

Welcome! I know you will get many helpful responses. It sounds like you

are on the right track already in your research on treatment. I don't

have much time right now but want to address your last question..

Please, be reassured! To paraphrase Dr. Ponseti, clubfoot is no

handicap, and, treated well, is compatible with all normal activity.

I had the same worries and fears that you did when my child was born

with clubfoot 5 years ago. I was beside myself with despair. I wondered

if she'd be able to do what other children do, whether she'd

look " normal " , be able to run, jump, walk without limping. The answer

is a resounding YES! If you met my child, you would have NO idea

anything had ever been wrong with her foot. It looks completely fine,

and she can do anything any kid her age can do, without pain or

limitation. She wears regular store bought shoes, runs barefoot, takes

ballet, plays soccer, swims, jumps rope.. etc. Her club foot is

slightly smaller than her other (non club) foot, and her calf is

thinner, but it's not anything anyone would immediately notice. Her

infancy and toddlerhood were just like any other child's, with all the

milestones met when they usually are.

I know you are upset and overwhelmed right now.. we know just how you

feel. It's no small thing for you or your baby. But please be

reassured.. as birth defects go, it's one that can be treated very

well, with an excellent outcome, if you get to someone skilled in

treatment.. and with your knowledge of Drs. Lehman or Herzenberg you

are already well on your way with that.

Take care, and keep posting!

and Claire

March 3, 2006

Hi,

Congratulations on your pregnancy! My son Christian was born with left

clubfoot. We currently take him to see Dr. Herzenberg in Baltimore and he

has been wonderful. I did send pictures to Dr. Ponseti (via email) who sent

us to Dr. Herzenberg. There is a DVD you can order on his website and he

explains the process completely for you. I wanted Christian to be casted

right after birth but Dr. Herzenberg and many others say that you can take

your baby home and bond for a week or two before starting the casting

process.

As far as living a normal life...ABSOLUTELY! You would never know there was

anything or there is anything wrong with my son. He is now 2 and climbs,

runs, crawls and jumps just like any other kid. There can be slight

differences in the size of the feet and calves but I believe that most of

the time it is so insignificant that it is almost impossible to tell.

You will get lots of great and priceless advice from this group.

Good Luck!

Mommy to (12/17/98) and

Christian (1/30/04) LCF

_____

From: nosurgery4clubfoot

[mailto:nosurgery4clubfoot ] On Behalf Of jieun_kang

Sent: Thursday, March 02, 2006 4:24 PM

To: nosurgery4clubfoot

Subject: Questions filled

Hello. I am 22weeks pregnant now and during the routine ultrasound last

week, we discovered that our infant has clubfeet. As you can all

imagine, this was so shocking and I still cannot recover from my

anxieties and rollercoaster emotion. Yet, it's so comforting to know of

this site and I am sure it will be great resources and guiding light

for our long journey.

During the weekend, my husband and I researched internet and heard of

Ponseti method and we are willing to try this method first than

anything else.

My questions;

1. Did many of you contact Dr. Ponseti himself and get a referral to a

qualified doctor in your area? What exactly does it mean to be

certified Ponseti method doctors (like the list of doctors you see on

Dr. Ponseti's website)?

2. According to many researches, it seems that Dr. Herzenberg in

Baltimore and Dr. Feldman in NY (we live in Philly) are the ones

that we can go from our place. Can you share any firsthand experiences

with these docs?

3.Did you all arrange your baby's first casting EVEN BEFORE the baby

was born? If so, how many days should we wait for a baby to travel? 3

days after the birth? or within a week? My mom is worried that if such

infant can travel for 2 hours.

Lastly,is it really possible for this clubfeet child to live a normal

life? It is one of those things that I want to keep hearing days and

nights.

Thanks for reading long email.

Jane

March 3, 2006

Dear Jane,

Ah, we're so happy to have you here!

I'll answer your last question first: YES YES YES YES YES!!!! Your child CAN

have a totally normal foot/feet, with a totally normal pain free life on those

feet. I wish we could send you video or something of our kids who have

perfectly normal feet after having been born clubfooted and treated via

Ponseti's method.

And you'll be amazed how fast it happens, too. You've already done some

research so you know your baby will wear a brace (FAB) - but rest assured that

will not interfer with otherwise normal development. My youngest at the moment

is 29 months old; he began treatment at 2 weeks old. He has rolled, sat up,

crawled, walked, squatted, jumped and turned in to a regular dare devil - the

FAB has not slowed him down in the least and that is the case with 99.9% of

these kids. The FAB will become your baby's " Normal " , so it will be normal in

his mind to do things with it on, and he/she? will!

As far as how soon to travel - give yourself a couple weeks to recoup from

delivery, bond with the baby, take pictures of those feet (seriously, later

you'll regret not doing it!), love them, and love your baby....a couple weeks is

perfectly fine, you won't compromise treatment by waiting at all. When it

comes time to travel, just factor in a little extra time to stop for nursings

and diaper changes.

Another thing - don't buy in to the whole guilt trip, either. You didn't

" Give " your kid club feet. It just happens, often with no family history

whatsoever. It's a genetic fluke, not something you did or didn't do right, OK?

And along with that, let me tell you your hospital where you deliver is liable

to try to pressure you in to letting THEM cast the child before you go home.

Don't do it!!!! Be firm and tell them no thank you, OK? Bad castings do more

harm than good. Just wait for the right doctor to do it right.

I have gone to see Dr. Ponseti personally in the past with my two clubfooted

sons. You just call his clinic and they fit you in. I was talking to his

secretary just this week regarding cost of treatment, and was told the " AVERAGE "

bill for bilateral clubfoot baby treatment is around the $4,500.00 mark (in Iowa

City). I throw that in because if there is an insurance problem, this

treatment is well with in the affordable limit for almost anyone to pay off -

and well cheaper than a lot of your non-ponseti alternative treatments.

General speaking, you can wait until the baby is born before setting up the

first appointment, since babies don't always come when you expect them to. Go

ahead and speak with the doctor now ya know - but you can probably wait till

he's born to make the actual appt.

As far as Ponseti Certified - thre is a process that Dr. Ponseti requires a

doctor go through to become certified. This is generally a safe bet that any

doc on his list is good. Other parents here can give you specific info on the

doctors you mentioned, I cannot.

Otherwise, just don't sweat the small stuff. Clubfoot is rarely associated with

any other complication, and by the time your child enters school, it'll all be a

distant memory.

Most car seats are OK; most types of beds are OK; most high chairs are OK; most

cloths are OK. As far as picking out what to use in those areas, just keep in

mind the babe will be wearing a pair of shoes with a bar between them for a

while, but all in all, it's not an issue. Never has been for me, anyway.

Sometimes when they are bigger they tend to kick the slats on a crib and wake

themselves up, or get their brace stuck between the slats, but that is also

something you can work out, cross that bridge when you get to it. Some parents

swear by snap-pants, that's a personal choice, I just use regular baby cloths as

they come, snap, no-snap...you'll find what works for you as you get in to it.

Anyway, sorry this is long. Any questions you have though, now, in the future,

come on back and we'll help all we can!

shawnee

Questions filled

Hello. I am 22weeks pregnant now and during the routine ultrasound last

week, we discovered that our infant has clubfeet. As you can all

imagine, this was so shocking and I still cannot recover from my

anxieties and rollercoaster emotion. Yet, it's so comforting to know of

this site and I am sure it will be great resources and guiding light

for our long journey.

During the weekend, my husband and I researched internet and heard of

Ponseti method and we are willing to try this method first than

anything else.

My questions;

1. Did many of you contact Dr. Ponseti himself and get a referral to a

qualified doctor in your area? What exactly does it mean to be

certified Ponseti method doctors (like the list of doctors you see on

Dr. Ponseti's website)?

2. According to many researches, it seems that Dr. Herzenberg in

Baltimore and Dr. Feldman in NY (we live in Philly) are the ones

that we can go from our place. Can you share any firsthand experiences

with these docs?

3.Did you all arrange your baby's first casting EVEN BEFORE the baby

was born? If so, how many days should we wait for a baby to travel? 3

days after the birth? or within a week? My mom is worried that if such

infant can travel for 2 hours.

Lastly,is it really possible for this clubfeet child to live a normal

life? It is one of those things that I want to keep hearing days and

nights.

Thanks for reading long email.

Jane

March 3, 2006

Jane,

Since you've already gotten a couple of fact filled replies I'll try

not to be too repetitious.

The list of doctors on Dr. Ponseti's website is the " qualified "

physicians list, there's really no official " certification " process.

In order for a doctor to get on this list he or she must present

multiple case studies to Dr. Ponseti showing that they are doing the

method correctly. They normally do this after attending one of Dr.

P's training sessions or having one of the doctors from University of

Iowa give a training at their location. The best source of finding a

good Ponseti trained doctor is right here on this group. Anytime a

doctor is mentioned there is usually someone here who can say from

first hand experience whether or not they are good.

I can't remember if anyone pointed you to this website yet or not:

http://members.tripod.com/ponseti_links-ivil/index.html

This is a site full of helpful documents and links to more and more

information about clubfoot and the Ponseti Method. There is also a

Parents Checklist there that gives a list of questions to ask

prospective doctors.

I would also like to second what the others said about giving

yourself a week or two to recover from the delivery and bond with and

enjoy your baby. A week or two will definitely not make a difference

in the success of treatment. Usually, you can wait until after the

baby is born and then schedule an appointment for the following week

or so. Most of these doctors have very busy schedules but they

always make room for the newborns because they understand the

importance of beginning treatment fairly soon after birth.

And finally, as everyone else has mentioned, it is a resounding YES,

your child will be able to run and play and lead a totally normal

life!

Hope this is helpful,

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 14hrs/day)

>

> Hello. I am 22weeks pregnant now and during the routine ultrasound

last

> week, we discovered that our infant has clubfeet. As you can all

> imagine, this was so shocking and I still cannot recover from my

> anxieties and rollercoaster emotion. Yet, it's so comforting to

know of

> this site and I am sure it will be great resources and guiding

light

> for our long journey.

>

> During the weekend, my husband and I researched internet and heard

of

> Ponseti method and we are willing to try this method first than

> anything else.

>

> My questions;

>

> 1. Did many of you contact Dr. Ponseti himself and get a referral

to a

> qualified doctor in your area? What exactly does it mean to be

> certified Ponseti method doctors (like the list of doctors you see

on

> Dr. Ponseti's website)?

>

> 2. According to many researches, it seems that Dr. Herzenberg in

> Baltimore and Dr. Feldman in NY (we live in Philly) are the

ones

> that we can go from our place. Can you share any firsthand

experiences

> with these docs?

>

> 3.Did you all arrange your baby's first casting EVEN BEFORE the

baby

> was born? If so, how many days should we wait for a baby to travel?

3

> days after the birth? or within a week? My mom is worried that if

such

> infant can travel for 2 hours.

>

> Lastly,is it really possible for this clubfeet child to live a

normal

> life? It is one of those things that I want to keep hearing days

and

> nights.

>

> Thanks for reading long email.

>

> Jane

>

March 3, 2006

Hi Jane,

> Lastly,is it really possible for this clubfeet child

> to live a normal life? It is one of those things

> that I want to keep hearing days and nights.

It certainly is! I have twins, one with clubfoot,

one without, and they both developed exactly the same,

they reached all of their milestones (like rolling

over, sitting up, crawling, standing, walking) within

a week of each other. They are 3 1/2 years old now

and you can't tell the difference, they jump and run

just the same. Their nursery doesn't even know about

it, and they never noticed even though they're doing

foot prints and all with the kids. Even Alister's

doctor keeps looking at the wrong twin's feet (she

usually makes me take all their socks off for

comparison).

Anyway, Alister was treated with the Ponseti method

which I can only recommend. He is still wearing the

DBB (shoes on a bar) at night to prevent a relapse and

it really never has been a problem for us.

I hope this helps, and enjoy your pregnancy!

with (3y)

and Alister (3y, RCF, Ponseti method, UK)

___________________________________________________________

Yahoo! Photos – NEW, now offering a quality print service from just 8p a photo

http://uk.photos.yahoo.com

March 3, 2006

Hi Jane,

You have already received some great detailed responses to your

questions...I just wanted to say welcome and congratulations on your

pregnancy !

I think that it is great that your U/S picked up the cf and that you

are doing your research. Our daughter's club foot was corrected in 4

casts and she was one of the about 5% that didn't need a tenotomy.

Treatment for us was sooo easy as was adjustment to the brace so just

know that with the right doctor, your lil baby will have straight

feet in no time - try not to worry, get your Ponseti doctor picked

out, have the consult and just enjoy the rest of your pregnancy!

This board will also be a great source of information and comfort to

you, glad you are here!

Smiles,

& Grace 19mos

unilateral right cf FAB (foot abduction brace - Markell's) 13hrs

>

> Hello. I am 22weeks pregnant now and during the routine ultrasound

last

> week, we discovered that our infant has clubfeet. As you can all

> imagine, this was so shocking and I still cannot recover from my

> anxieties and rollercoaster emotion. Yet, it's so comforting to

know of

> this site and I am sure it will be great resources and guiding

light

> for our long journey.

>

> During the weekend, my husband and I researched internet and heard

of

> Ponseti method and we are willing to try this method first than

> anything else.

>

> My questions;

>

> 1. Did many of you contact Dr. Ponseti himself and get a referral

to a

> qualified doctor in your area? What exactly does it mean to be

> certified Ponseti method doctors (like the list of doctors you see

on

> Dr. Ponseti's website)?

>

> 2. According to many researches, it seems that Dr. Herzenberg in

> Baltimore and Dr. Feldman in NY (we live in Philly) are the

ones

> that we can go from our place. Can you share any firsthand

experiences

> with these docs?

>

> 3.Did you all arrange your baby's first casting EVEN BEFORE the

baby

> was born? If so, how many days should we wait for a baby to travel?

3

> days after the birth? or within a week? My mom is worried that if

such

> infant can travel for 2 hours.

>

> Lastly,is it really possible for this clubfeet child to live a

normal

> life? It is one of those things that I want to keep hearing days

and

> nights.

>

> Thanks for reading long email.

>

> Jane

>

March 3, 2006

Jane,

I think others have answered some of your questions but I can

address number three. My son sees Dr. Herzenberg and we love

him! He is the second doctor we have seen and he has fixed 's

feet beautifully. He has a wonderful staff, too. If you have other

questions, I would be glad to answer them.

and 6-19-05 lcf FAB 23/7

>

> Hello. I am 22weeks pregnant now and during the routine ultrasound

last

> week, we discovered that our infant has clubfeet. As you can all

> imagine, this was so shocking and I still cannot recover from my

> anxieties and rollercoaster emotion. Yet, it's so comforting to

know of

> this site and I am sure it will be great resources and guiding

light

> for our long journey.

>

> During the weekend, my husband and I researched internet and heard

of

> Ponseti method and we are willing to try this method first than

> anything else.

>

> My questions;

>

> 1. Did many of you contact Dr. Ponseti himself and get a referral

to a

> qualified doctor in your area? What exactly does it mean to be

> certified Ponseti method doctors (like the list of doctors you see

on

> Dr. Ponseti's website)?

>

> 2. According to many researches, it seems that Dr. Herzenberg in

> Baltimore and Dr. Feldman in NY (we live in Philly) are the

ones

> that we can go from our place. Can you share any firsthand

experiences

> with these docs?

>

> 3.Did you all arrange your baby's first casting EVEN BEFORE the

baby

> was born? If so, how many days should we wait for a baby to

travel? 3

> days after the birth? or within a week? My mom is worried that if

such

> infant can travel for 2 hours.

>

> Lastly,is it really possible for this clubfeet child to live a

normal

> life? It is one of those things that I want to keep hearing days

and

> nights.

>

> Thanks for reading long email.

>

> Jane

>

March 3, 2006

Hello and Welcome Jane!

I understand how disconcerted you are. On the bright side, you

found out early enough to do your research and start treatment right

as well as to know you have chosen the most effective non-surgical,

non-intrusive treatment for clubfoot.

My daughter is two-months-old, born with bilateral clubfoot (both

feet are affectd). We didn't know beforehand, so you can imagine

how surprised we were. I was distraught and wondered if it was

something that I could preveneted...should I have taken more

vitamins or rested more....etc. Not being informed on the

condition, let alone how and where to get treated, we started with

an ortho specialist who does not practice the Ponseti method. Long

story short, after 3 weeks with the non-Ponseti doctor, we found our

way to a Ponseti doctor who is listed on Dr. Ponseti's site. As of

today we are on our 5th set of casts and are so pleased with the

progress as well as our decision!

Here is what I can advise given my two-month experience:

rest assured that your baby will be just fine, enjoy the rest of

your pregnancy and try not to worry, know that it is not something

you could have foreseen nor prevented, do take time to bond with

your newborn before beginning the casting, do take before and after

photos. I didn't take good pictures of my daughter's feet before

she started casting and I regret it. We started treatment at 4-days-

old and it took us about 2 weeks to get over the initial shock and

discord. Now, I chronicle everything at every visit from the

removal of the casts to the applying of the new set and it's so much

fun!

Congratulations on your new baby, Jane. Please keep in touch with

all of us and let us know when baby arrives.

If any other questions arise, this is THE best place for answers and

support.

mommy to -J'nee, bcf, born 01.07.06

>

> Hello. I am 22weeks pregnant now and during the routine ultrasound

last

> week, we discovered that our infant has clubfeet. As you can all

> imagine, this was so shocking and I still cannot recover from my

> anxieties and rollercoaster emotion. Yet, it's so comforting to

know of

> this site and I am sure it will be great resources and guiding

light

> for our long journey.

>

> During the weekend, my husband and I researched internet and heard

of

> Ponseti method and we are willing to try this method first than

> anything else.

>

> My questions;

>

> 1. Did many of you contact Dr. Ponseti himself and get a referral

to a

> qualified doctor in your area? What exactly does it mean to be

> certified Ponseti method doctors (like the list of doctors you see

on

> Dr. Ponseti's website)?

>

> 2. According to many researches, it seems that Dr. Herzenberg in

> Baltimore and Dr. Feldman in NY (we live in Philly) are the

ones

> that we can go from our place. Can you share any firsthand

experiences

> with these docs?

>

> 3.Did you all arrange your baby's first casting EVEN BEFORE the

baby

> was born? If so, how many days should we wait for a baby to

travel? 3

> days after the birth? or within a week? My mom is worried that if

such

> infant can travel for 2 hours.

>

> Lastly,is it really possible for this clubfeet child to live a

normal

> life? It is one of those things that I want to keep hearing days

and

> nights.

>

> Thanks for reading long email.

>

> Jane

>

March 3, 2006