Re: sonograhm of new granddaughter

[Guest guest]

Hi, Joan!

Welcome to the board and congrats on your new granddaughter's pending

arrival!

Here's Dr. Ponseti's website:

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

Here's the most experienced Ponseti doctor in the state of Washington:

Mosca, M.D.

4800 Sand Point Way NE

Seattle, WA 98105

Tel:

Fax:

There are a number of families here who see Dr. Mosca (including some

from Alaska), and I'm sure they'd be more than happy to correspond

with your daughter.

Here's a website that you can use to research the Ponseti method on

the internet (also get more info about Dr. Mosca):

http://pages.ivillage.com/ponseti_links

Please ask us any questions! I know the initial diagnosis is a big

shock, but correcting it non-surgically (and painlessly) with the

Ponseti method is pretty straight forward and we're all here to help

you and your family if you have any questions/concerns! Check out

the links, photos and files section here on our board for even more

information!

Regards,

& (3-16-00)

left clubfoot, switched to Ponseti method at 4 mo. old

http://ponseticlubfoot.freeservers.com/

[Guest guest]

Joan:

Bless you for starting the search! Bear with us all, we may end up long winded

here but we are very devout and devoted to our beloved Doctor Ponseti. (With

good reason!)

My advice is two things: One, if at all possible get your daughter connected

on-line to join this group, it's a wealth of information - and 2, no matter how

far she has to travel, find a Ponseti Approved doctor who is actually practicing

the PONSTI METHOD AND PROTOCOL TO THE LETTER! No cheap imitation will do!

This isn't the end of the world an I do hope she is not beating herself up with

guilt. To date we are not sure what causes CF, but she can be sure it shows no

race, social, economic, etc., bounderies. Something that was passed on here

recently is important for your daughter to remember...how did it go? " The most

important thing that happens when a baby is born with a birth defect is that a

baby is born. The most important thing that happens to parents when they give

birth to a baby with a birth defect is that they become parents. "

Club feet are very curable with excellent long term (life long) results IF

treated right . The treatment can be acheived in as few as three weeks, up to

nine weeks or so in really tough cases but that is rare - then the child wears

the Dennis Brown Bar/shoes (DBB) to maintain the correction.

Some who are not fans of the Ponseti Method (through ignorance in my opinion)

will argue spending three to four years in the DBB is stupid when a simple

surgery can correct the feet in one swoop and avoid the DBB. Beware of that

mentality!!!!!!

For one thing, the DBB is a very minor issue. The child wears it for 24 hours a

day 7 days a week only for a few months. Then down to 18 hours, then 16, then

14..... Usually, with in the first year to 18 months after correction, the time

he/she wears the DBB is reduced to a mere 12 - 14 hours a day. We're talking

bed time. Babies/toddlers....all children up to the 3 or 4 years of age

they'll wear it require a solid 11 to 12 hours of sleep per night anyway, so you

can see the DBB becomes a part of their pajamas and nothihg more. The DBB does

NOT hinder any mile stones or development! The child will crawl, roll over,

cruise, etc. with it on, no problem!

The advantage to this method is there is NO surgery. The bones in the feet are

not cut, broken, etc.... there is no scar tissue to build up that will cause

pain and more surgery later in life. Dr. Ponseti has about 50 years of case

study backing up his method although the medical community at large has been

very slow to adopt his method. It seems too good to be true, it's " too simple "

therefore it must not be effective. Also, there are many doctors who claim to

use the POnseti Method and will fool the new parent by saying they practice

it..... " We use serial casting " . Well Ponseti's method uses serial casting,

they all do. The difference is what Ponseti's Method is doing UNDER the cast.

He (his method) is gently guiding the bones to their natural position. The

bones are not deformed, they are just in the wrong place so his method puts them

where they belong thus they are able to grow to adulthood normally and fully

functionable.

The DBB does not give correction - it holds the correction that was gained

through these serial castings. The DBB is vital to success!

Beware not all casts are equal! Very few doctors can accomplish the Ponseti

results. Some doctors who trained under Ponseti have decided to re-invent the

wheel with disasterous results. Beware of them too! Some will tell the

parents the Ponseti method won't work on their particular child for whatever

reason. I think one parent here was told her child needed surgery for

" mis-aligned " bones. Well, in cf all the bones are mis-alligned, that is what

cf is (in a nut shell). She found POnseti and he fixed her child with a few

casts and NO surgery.

Your daughter is on a treck through a field of land mines, more or less, to

decipher the medical community and bogus doctors who we often find here want to

treaat us parents like idiots. Education is the key here and you're so good to

have come looking for answers for her but it's also important she do her own

research so she can work intellegently with her doctor and spot trouble before

it hits. If she is not convinced the Ponseti method will work, she won't have

the courage to stick it out and will fall prey easily to doctor's telling her it

doesn't work.

IT DOES WORK.

I am sorry this is so long but believe me - I have 2 cf children. One went

through hell with bad treatment before I found Dr. Ponseti; my 2nd son I took

directly to Dr. POnseti. The difference in results is amazing. #1 will always

be somewhat crippled. #2 has perfect feet.

There are ways to travel if necessary - I think Shriners help some; there is a

program called Angel Flights and there are other programs like Angel Flights who

provide transportation for children/parents who need help far away. There are

Mc Houses to stay in that are very cheap and often free to the

financially challenged family. We travel about 12 hours one way to see Dr.

Ponseti. Others here travel two days across America; others (many others!)

have traveled half way around the world. I remember there being another Alaska

parent on this group who may be able to offer advice/assistance.

One other note and I'll let you go - your daughter need not be in a rush to

apply those first casts to her baby's feet. She has a little bit of time to

find the right doc and travel to him. The hospital she delivers at will urge

her, even try to insist, she have casts applied before she takes the baby home.

If it's not a Ponsti Doctor, tell them no way! Even a month or two with out

treatment will be better than starting off immediately with poor treatment.

They will tell her horror stories to convince her to do something that day -

tell her to plug her ears, smile politely, then refuse. I went through this

myself both times. The 2nd time I was armed with enough information to tell

them no even though they treated me like a child-abuser for refusing their

service. They kept telling me all the surgeries he will require through his

life and were not open to hear me speak about an alternative approach to

treatment. Just smile and thank them and then refuse.

Please check all the files here, archives, Dr. Ponseti's site, parent's sites

with photos.... If she doesn't/cant have intenet, go buy a boat load of ink and

start printing off materials to send her to research.

Best of wishes,

shawnee

-----

Hi everyone,

My name is Joan and I live in Alaska, my daugther called tonight from Washington

and said on her 5 month sonagram

that they have found a clubfoot. We are reserching for all the info we can find,

Does any one have any advice for us?

thanks

Joan

[Guest guest]

Hi Joan,

You have been given some great advice, and I can't encourage you more to

help your daughter find a good Ponseti Dr. and to know that this is just

NOT going to be a big deal and her child will have perfect feet in short

order. Without surgery. If I may ask though, where in Washington is she

located? If she's near Seattle Dr. Mosca is fantastic and very dedicated

to this method. If she's nearer to Portland (SW or SE Washington), please

let me know because I want to make sure she knows some of the things I know

about Dr's here before she chooses one.

It's a scary thought to think your child has a deformity, we didn't know

till after she was born and in some ways, I am grateful for that

ignorance. However, doing your research now can really be advantageous and

you're absolutely in the right place to find the best information about

treating CF. My daughter has right CF and out of all three of my children

she hit her gross motor milestones months earlier than either of my two non

CF children. She walked at 10 months and her foot is just perfect now at

19 months old. She wears her brace every night and doesn't know there's

anything wrong with her foot at all.

Welcome to the list and congrats on your new grandchild!

Kori & Darbi

3/03 - DBB 12hr/day

Size 4 Markells Already, What A Big Foot Girl!

[Guest guest]

Joan,

ee and others have done a good job of sharing the medical issues with cf

and how the ponseti method is so wonderful so I won't belabor that point. I

thought I'd cover some other issues that she will face as she prepares to

welcome your wonderful new granddaughter!

First of all, footie outfits will only work - and then only some of them that

are cut a bit bigger - while the casts are on. After the DBB phase starts,

footie outfits will be a thing of the past. So prepare now by buying things

that have no feet. This is especially important as you plan for the extended

nighttime wear. All of those wonderfully warm fleece pj's can't be used easily.

Not only because you can't put the footies in the shoes, but also remember that

you have to remove the entire top in order to change a diaper. That makes for a

cold baby!

You might also think about purchasing only either two piece outfits where the

pants can be pulled down to the knees easily for diaper changes with the bar or

outfits with snaps all the way around the interior of the legs so they can be

removed for diaper changing. Those with cuffs that can't be removed without

taking off the shoes are pretty useless for awhile. And by the time your gd

will be out of her shoes for awhile, these outfits may no longer fit. So buy

right to begin with.

Know that eventually your granddaughter will be able to wear shoes during the

day. So don't dispair and plan for that down the road. There are some real

cuties out there for them and she will enjoy them eventually.

Purchase equipment that can be used even when the bar is on. For instance, not

many carriers can be used easily. An exception I've found is the baby b'jorn as

well as the 'wraps or slings'. Things like strollers, high chairs and the like

need to have openings that the bar can fit around/through in order to be user

friendly. This takes some planning but is not at all impossible. Just think as

you purchase. It will become second nature after awhile.

Buy LOTS of cute socks. Colorful, fancy, or whatever her style. But be sure

they are tight fitting so the wrinkles don't aggravate your granddaughter.

These are some things just to get you started. I'm sure other things will come

to mind as you start planning for this new adventure. Also, If there is a sewer

in her life, they can alter many of the normal baby items to meet this need. My

mother has altered numerous things including sleep sacks and pj's to fit with

her bar size and the need for shoes and it's been a lifesaver.

Finally, don't be ashamed or afraid to tell folks about her club feet. It is

nothing to hide or be worried about. It is very common and I'd be willing to

bet that 9 out of 10 folks you tell will say " I know so and so who wore the bar

as a child " or " my sister had club feet " and so on. And if you tell folks up

front, they can also purchase approrpiate items for the baby eliminating the

need to return a lot of things.

We are here for support and suggestions. You are to be commended on getting the

leg up so to speak on the issues and will be better prepared because of it. We

look forward to hearing about her progress.

Chris

Re: sonograhm of new granddaughter

Joan:

Bless you for starting the search! Bear with us all, we may end up long

winded here but we are very devout and devoted to our beloved Doctor Ponseti.

(With good reason!)

My advice is two things: One, if at all possible get your daughter connected

on-line to join this group, it's a wealth of information - and 2, no matter how

far she has to travel, find a Ponseti Approved doctor who is actually practicing

the PONSTI METHOD AND PROTOCOL TO THE LETTER! No cheap imitation will do!

This isn't the end of the world an I do hope she is not beating herself up

with guilt. To date we are not sure what causes CF, but she can be sure it shows

no race, social, economic, etc., bounderies. Something that was passed on here

recently is important for your daughter to remember...how did it go? " The most

important thing that happens when a baby is born with a birth defect is that a

baby is born. The most important thing that happens to parents when they give

birth to a baby with a birth defect is that they become parents. "

Club feet are very curable with excellent long term (life long) results IF

treated right . The treatment can be acheived in as few as three weeks, up to

nine weeks or so in really tough cases but that is rare - then the child wears

the Dennis Brown Bar/shoes (DBB) to maintain the correction.

Some who are not fans of the Ponseti Method (through ignorance in my opinion)

will argue spending three to four years in the DBB is stupid when a simple

surgery can correct the feet in one swoop and avoid the DBB. Beware of that

mentality!!!!!!

For one thing, the DBB is a very minor issue. The child wears it for 24 hours

a day 7 days a week only for a few months. Then down to 18 hours, then 16, then

14..... Usually, with in the first year to 18 months after correction, the time

he/she wears the DBB is reduced to a mere 12 - 14 hours a day. We're talking

bed time. Babies/toddlers....all children up to the 3 or 4 years of age

they'll wear it require a solid 11 to 12 hours of sleep per night anyway, so you

can see the DBB becomes a part of their pajamas and nothihg more. The DBB does

NOT hinder any mile stones or development! The child will crawl, roll over,

cruise, etc. with it on, no problem!

The advantage to this method is there is NO surgery. The bones in the feet

are not cut, broken, etc.... there is no scar tissue to build up that will cause

pain and more surgery later in life. Dr. Ponseti has about 50 years of case

study backing up his method although the medical community at large has been

very slow to adopt his method. It seems too good to be true, it's " too simple "

therefore it must not be effective. Also, there are many doctors who claim to

use the POnseti Method and will fool the new parent by saying they practice

it..... " We use serial casting " . Well Ponseti's method uses serial casting,

they all do. The difference is what Ponseti's Method is doing UNDER the cast.

He (his method) is gently guiding the bones to their natural position. The

bones are not deformed, they are just in the wrong place so his method puts them

where they belong thus they are able to grow to adulthood normally and fully

functionable.

The DBB does not give correction - it holds the correction that was gained

through these serial castings. The DBB is vital to success!

Beware not all casts are equal! Very few doctors can accomplish the Ponseti

results. Some doctors who trained under Ponseti have decided to re-invent the

wheel with disasterous results. Beware of them too! Some will tell the

parents the Ponseti method won't work on their particular child for whatever

reason. I think one parent here was told her child needed surgery for

" mis-aligned " bones. Well, in cf all the bones are mis-alligned, that is what

cf is (in a nut shell). She found POnseti and he fixed her child with a few

casts and NO surgery.

Your daughter is on a treck through a field of land mines, more or less, to

decipher the medical community and bogus doctors who we often find here want to

treaat us parents like idiots. Education is the key here and you're so good to

have come looking for answers for her but it's also important she do her own

research so she can work intellegently with her doctor and spot trouble before

it hits. If she is not convinced the Ponseti method will work, she won't have

the courage to stick it out and will fall prey easily to doctor's telling her it

doesn't work.

IT DOES WORK.

I am sorry this is so long but believe me - I have 2 cf children. One went

through hell with bad treatment before I found Dr. Ponseti; my 2nd son I took

directly to Dr. POnseti. The difference in results is amazing. #1 will always

be somewhat crippled. #2 has perfect feet.

There are ways to travel if necessary - I think Shriners help some; there is a

program called Angel Flights and there are other programs like Angel Flights who

provide transportation for children/parents who need help far away. There are

Mc Houses to stay in that are very cheap and often free to the

financially challenged family. We travel about 12 hours one way to see Dr.

Ponseti. Others here travel two days across America; others (many others!)

have traveled half way around the world. I remember there being another Alaska

parent on this group who may be able to offer advice/assistance.

One other note and I'll let you go - your daughter need not be in a rush to

apply those first casts to her baby's feet. She has a little bit of time to

find the right doc and travel to him. The hospital she delivers at will urge

her, even try to insist, she have casts applied before she takes the baby home.

If it's not a Ponsti Doctor, tell them no way! Even a month or two with out

treatment will be better than starting off immediately with poor treatment.

They will tell her horror stories to convince her to do something that day -

tell her to plug her ears, smile politely, then refuse. I went through this

myself both times. The 2nd time I was armed with enough information to tell

them no even though they treated me like a child-abuser for refusing their

service. They kept telling me all the surgeries he will require through his

life and were not open to hear me speak about an alternative approach to

treatment. Just smile and thank them and then refuse.

Please check all the files here, archives, Dr. Ponseti's site, parent's sites

with photos.... If she doesn't/cant have intenet, go buy a boat load of ink and

start printing off materials to send her to research.

Best of wishes,

shawnee

-----

Hi everyone,

My name is Joan and I live in Alaska, my daugther called tonight from

Washington and said on her 5 month sonagram

that they have found a clubfoot. We are reserching for all the info we can

find, Does any one have any advice for us?

thanks

Joan

[Guest guest]

Chriss those were excellent, practical suggestions we often over look when we

bog down in the mechanics of treatment!

s.

Re: sonograhm of new granddaughter

Joan:

Bless you for starting the search! Bear with us all, we may end up long

winded here but we are very devout and devoted to our beloved Doctor Ponseti.

(With good reason!)

My advice is two things: One, if at all possible get your daughter connected

on-line to join this group, it's a wealth of information - and 2, no matter how

far she has to travel, find a Ponseti Approved doctor who is actually practicing

the PONSTI METHOD AND PROTOCOL TO THE LETTER! No cheap imitation will do!

This isn't the end of the world an I do hope she is not beating herself up

with guilt. To date we are not sure what causes CF, but she can be sure it shows

no race, social, economic, etc., bounderies. Something that was passed on here

recently is important for your daughter to remember...how did it go? " The most

important thing that happens when a baby is born with a birth defect is that a

baby is born. The most important thing that happens to parents when they give

birth to a baby with a birth defect is that they become parents. "

Club feet are very curable with excellent long term (life long) results IF

treated right . The treatment can be acheived in as few as three weeks, up to

nine weeks or so in really tough cases but that is rare - then the child wears

the Dennis Brown Bar/shoes (DBB) to maintain the correction.

Some who are not fans of the Ponseti Method (through ignorance in my opinion)

will argue spending three to four years in the DBB is stupid when a simple

surgery can correct the feet in one swoop and avoid the DBB. Beware of that

mentality!!!!!!

For one thing, the DBB is a very minor issue. The child wears it for 24 hours

a day 7 days a week only for a few months. Then down to 18 hours, then 16, then

14..... Usually, with in the first year to 18 months after correction, the time

he/she wears the DBB is reduced to a mere 12 - 14 hours a day. We're talking

bed time. Babies/toddlers....all children up to the 3 or 4 years of age

they'll wear it require a solid 11 to 12 hours of sleep per night anyway, so you

can see the DBB becomes a part of their pajamas and nothihg more. The DBB does

NOT hinder any mile stones or development! The child will crawl, roll over,

cruise, etc. with it on, no problem!

The advantage to this method is there is NO surgery. The bones in the feet

are not cut, broken, etc.... there is no scar tissue to build up that will cause

pain and more surgery later in life. Dr. Ponseti has about 50 years of case

study backing up his method although the medical community at large has been

very slow to adopt his method. It seems too good to be true, it's " too simple "

therefore it must not be effective. Also, there are many doctors who claim to

use the POnseti Method and will fool the new parent by saying they practice

it..... " We use serial casting " . Well Ponseti's method uses serial casting,

they all do. The difference is what Ponseti's Method is doing UNDER the cast.

He (his method) is gently guiding the bones to their natural position. The

bones are not deformed, they are just in the wrong place so his method puts them

where they belong thus they are able to grow to adulthood normally and fully

functionable.

The DBB does not give correction - it holds the correction that was gained

through these serial castings. The DBB is vital to success!

Beware not all casts are equal! Very few doctors can accomplish the Ponseti

results. Some doctors who trained under Ponseti have decided to re-invent the

wheel with disasterous results. Beware of them too! Some will tell the

parents the Ponseti method won't work on their particular child for whatever

reason. I think one parent here was told her child needed surgery for

" mis-aligned " bones. Well, in cf all the bones are mis-alligned, that is what

cf is (in a nut shell). She found POnseti and he fixed her child with a few

casts and NO surgery.

Your daughter is on a treck through a field of land mines, more or less, to

decipher the medical community and bogus doctors who we often find here want to

treaat us parents like idiots. Education is the key here and you're so good to

have come looking for answers for her but it's also important she do her own

research so she can work intellegently with her doctor and spot trouble before

it hits. If she is not convinced the Ponseti method will work, she won't have

the courage to stick it out and will fall prey easily to doctor's telling her it

doesn't work.

IT DOES WORK.

I am sorry this is so long but believe me - I have 2 cf children. One went

through hell with bad treatment before I found Dr. Ponseti; my 2nd son I took

directly to Dr. POnseti. The difference in results is amazing. #1 will always

be somewhat crippled. #2 has perfect feet.

There are ways to travel if necessary - I think Shriners help some; there is a

program called Angel Flights and there are other programs like Angel Flights who

provide transportation for children/parents who need help far away. There are

Mc Houses to stay in that are very cheap and often free to the

financially challenged family. We travel about 12 hours one way to see Dr.

Ponseti. Others here travel two days across America; others (many others!)

have traveled half way around the world. I remember there being another Alaska

parent on this group who may be able to offer advice/assistance.

One other note and I'll let you go - your daughter need not be in a rush to

apply those first casts to her baby's feet. She has a little bit of time to

find the right doc and travel to him. The hospital she delivers at will urge

her, even try to insist, she have casts applied before she takes the baby home.

If it's not a Ponsti Doctor, tell them no way! Even a month or two with out

treatment will be better than starting off immediately with poor treatment.

They will tell her horror stories to convince her to do something that day -

tell her to plug her ears, smile politely, then refuse. I went through this

myself both times. The 2nd time I was armed with enough information to tell

them no even though they treated me like a child-abuser for refusing their

service. They kept telling me all the surgeries he will require through his

life and were not open to hear me speak about an alternative approach to

treatment. Just smile and thank them and then refuse.

Please check all the files here, archives, Dr. Ponseti's site, parent's sites

with photos.... If she doesn't/cant have intenet, go buy a boat load of ink and

start printing off materials to send her to research.

Best of wishes,

shawnee

-----

Hi everyone,

My name is Joan and I live in Alaska, my daugther called tonight from

Washington and said on her 5 month sonagram

that they have found a clubfoot. We are reserching for all the info we can

find, Does any one have any advice for us?

thanks

Joan

[Guest guest]

Thanks - these are some of the things I learned the hard way. LOL

Re: sonograhm of new granddaughter

Joan:

Bless you for starting the search! Bear with us all, we may end up long

winded here but we are very devout and devoted to our beloved Doctor Ponseti.

(With good reason!)

My advice is two things: One, if at all possible get your daughter

connected on-line to join this group, it's a wealth of information - and 2, no

matter how far she has to travel, find a Ponseti Approved doctor who is actually

practicing the PONSTI METHOD AND PROTOCOL TO THE LETTER! No cheap imitation

will do!

This isn't the end of the world an I do hope she is not beating herself up

with guilt. To date we are not sure what causes CF, but she can be sure it shows

no race, social, economic, etc., bounderies. Something that was passed on here

recently is important for your daughter to remember...how did it go? " The most

important thing that happens when a baby is born with a birth defect is that a

baby is born. The most important thing that happens to parents when they give

birth to a baby with a birth defect is that they become parents. "

Club feet are very curable with excellent long term (life long) results IF

treated right . The treatment can be acheived in as few as three weeks, up to

nine weeks or so in really tough cases but that is rare - then the child wears

the Dennis Brown Bar/shoes (DBB) to maintain the correction.

Some who are not fans of the Ponseti Method (through ignorance in my

opinion) will argue spending three to four years in the DBB is stupid when a

simple surgery can correct the feet in one swoop and avoid the DBB. Beware of

that mentality!!!!!!

For one thing, the DBB is a very minor issue. The child wears it for 24

hours a day 7 days a week only for a few months. Then down to 18 hours, then

16, then 14..... Usually, with in the first year to 18 months after correction,

the time he/she wears the DBB is reduced to a mere 12 - 14 hours a day. We're

talking bed time. Babies/toddlers....all children up to the 3 or 4 years of

age they'll wear it require a solid 11 to 12 hours of sleep per night anyway, so

you can see the DBB becomes a part of their pajamas and nothihg more. The DBB

does NOT hinder any mile stones or development! The child will crawl, roll

over, cruise, etc. with it on, no problem!

The advantage to this method is there is NO surgery. The bones in the feet

are not cut, broken, etc.... there is no scar tissue to build up that will cause

pain and more surgery later in life. Dr. Ponseti has about 50 years of case

study backing up his method although the medical community at large has been

very slow to adopt his method. It seems too good to be true, it's " too simple "

therefore it must not be effective. Also, there are many doctors who claim to

use the POnseti Method and will fool the new parent by saying they practice

it..... " We use serial casting " . Well Ponseti's method uses serial casting,

they all do. The difference is what Ponseti's Method is doing UNDER the cast.

He (his method) is gently guiding the bones to their natural position. The

bones are not deformed, they are just in the wrong place so his method puts them

where they belong thus they are able to grow to adulthood normally and fully

functionable.

The DBB does not give correction - it holds the correction that was gained

through these serial castings. The DBB is vital to success!

Beware not all casts are equal! Very few doctors can accomplish the Ponseti

results. Some doctors who trained under Ponseti have decided to re-invent the

wheel with disasterous results. Beware of them too! Some will tell the

parents the Ponseti method won't work on their particular child for whatever

reason. I think one parent here was told her child needed surgery for

" mis-aligned " bones. Well, in cf all the bones are mis-alligned, that is what

cf is (in a nut shell). She found POnseti and he fixed her child with a few

casts and NO surgery.

Your daughter is on a treck through a field of land mines, more or less, to

decipher the medical community and bogus doctors who we often find here want to

treaat us parents like idiots. Education is the key here and you're so good to

have come looking for answers for her but it's also important she do her own

research so she can work intellegently with her doctor and spot trouble before

it hits. If she is not convinced the Ponseti method will work, she won't have

the courage to stick it out and will fall prey easily to doctor's telling her it

doesn't work.

IT DOES WORK.

I am sorry this is so long but believe me - I have 2 cf children. One went

through hell with bad treatment before I found Dr. Ponseti; my 2nd son I took

directly to Dr. POnseti. The difference in results is amazing. #1 will always

be somewhat crippled. #2 has perfect feet.

There are ways to travel if necessary - I think Shriners help some; there is

a program called Angel Flights and there are other programs like Angel Flights

who provide transportation for children/parents who need help far away. There

are Mc Houses to stay in that are very cheap and often free to the

financially challenged family. We travel about 12 hours one way to see Dr.

Ponseti. Others here travel two days across America; others (many others!)

have traveled half way around the world. I remember there being another Alaska

parent on this group who may be able to offer advice/assistance.

One other note and I'll let you go - your daughter need not be in a rush to

apply those first casts to her baby's feet. She has a little bit of time to

find the right doc and travel to him. The hospital she delivers at will urge

her, even try to insist, she have casts applied before she takes the baby home.

If it's not a Ponsti Doctor, tell them no way! Even a month or two with out

treatment will be better than starting off immediately with poor treatment.

They will tell her horror stories to convince her to do something that day -

tell her to plug her ears, smile politely, then refuse. I went through this

myself both times. The 2nd time I was armed with enough information to tell

them no even though they treated me like a child-abuser for refusing their

service. They kept telling me all the surgeries he will require through his

life and were not open to hear me speak about an alternative approach to

treatment. Just smile and thank them and then refuse.

Please check all the files here, archives, Dr. Ponseti's site, parent's

sites with photos.... If she doesn't/cant have intenet, go buy a boat load of

ink and start printing off materials to send her to research.

Best of wishes,

shawnee

-----

Hi everyone,

My name is Joan and I live in Alaska, my daugther called tonight from

Washington and said on her 5 month sonagram

that they have found a clubfoot. We are reserching for all the info we can

find, Does any one have any advice for us?

thanks

Joan

[Guest guest]

I remember stressing too about what I'd dress him in but really, it's not nearly

as complicated as I had anticipated.

s.

Re: sonograhm of new granddaughter

Joan:

Bless you for starting the search! Bear with us all, we may end up long

winded here but we are very devout and devoted to our beloved Doctor Ponseti.

(With good reason!)

My advice is two things: One, if at all possible get your daughter

connected on-line to join this group, it's a wealth of information - and 2, no

matter how far she has to travel, find a Ponseti Approved doctor who is actually

practicing the PONSTI METHOD AND PROTOCOL TO THE LETTER! No cheap imitation

will do!

This isn't the end of the world an I do hope she is not beating herself up

with guilt. To date we are not sure what causes CF, but she can be sure it shows

no race, social, economic, etc., bounderies. Something that was passed on here

recently is important for your daughter to remember...how did it go? " The most

important thing that happens when a baby is born with a birth defect is that a

baby is born. The most important thing that happens to parents when they give

birth to a baby with a birth defect is that they become parents. "

Club feet are very curable with excellent long term (life long) results IF

treated right . The treatment can be acheived in as few as three weeks, up to

nine weeks or so in really tough cases but that is rare - then the child wears

the Dennis Brown Bar/shoes (DBB) to maintain the correction.

Some who are not fans of the Ponseti Method (through ignorance in my

opinion) will argue spending three to four years in the DBB is stupid when a

simple surgery can correct the feet in one swoop and avoid the DBB. Beware of

that mentality!!!!!!

For one thing, the DBB is a very minor issue. The child wears it for 24

hours a day 7 days a week only for a few months. Then down to 18 hours, then

16, then 14..... Usually, with in the first year to 18 months after correction,

the time he/she wears the DBB is reduced to a mere 12 - 14 hours a day. We're

talking bed time. Babies/toddlers....all children up to the 3 or 4 years of

age they'll wear it require a solid 11 to 12 hours of sleep per night anyway, so

you can see the DBB becomes a part of their pajamas and nothihg more. The DBB

does NOT hinder any mile stones or development! The child will crawl, roll

over, cruise, etc. with it on, no problem!

The advantage to this method is there is NO surgery. The bones in the feet

are not cut, broken, etc.... there is no scar tissue to build up that will cause

pain and more surgery later in life. Dr. Ponseti has about 50 years of case

study backing up his method although the medical community at large has been

very slow to adopt his method. It seems too good to be true, it's " too simple "

therefore it must not be effective. Also, there are many doctors who claim to

use the POnseti Method and will fool the new parent by saying they practice

it..... " We use serial casting " . Well Ponseti's method uses serial casting,

they all do. The difference is what Ponseti's Method is doing UNDER the cast.

He (his method) is gently guiding the bones to their natural position. The

bones are not deformed, they are just in the wrong place so his method puts them

where they belong thus they are able to grow to adulthood normally and fully

functionable.

The DBB does not give correction - it holds the correction that was gained

through these serial castings. The DBB is vital to success!

Beware not all casts are equal! Very few doctors can accomplish the Ponseti

results. Some doctors who trained under Ponseti have decided to re-invent the

wheel with disasterous results. Beware of them too! Some will tell the

parents the Ponseti method won't work on their particular child for whatever

reason. I think one parent here was told her child needed surgery for

" mis-aligned " bones. Well, in cf all the bones are mis-alligned, that is what

cf is (in a nut shell). She found POnseti and he fixed her child with a few

casts and NO surgery.

Your daughter is on a treck through a field of land mines, more or less, to

decipher the medical community and bogus doctors who we often find here want to

treaat us parents like idiots. Education is the key here and you're so good to

have come looking for answers for her but it's also important she do her own

research so she can work intellegently with her doctor and spot trouble before

it hits. If she is not convinced the Ponseti method will work, she won't have

the courage to stick it out and will fall prey easily to doctor's telling her it

doesn't work.

IT DOES WORK.

I am sorry this is so long but believe me - I have 2 cf children. One went

through hell with bad treatment before I found Dr. Ponseti; my 2nd son I took

directly to Dr. POnseti. The difference in results is amazing. #1 will always

be somewhat crippled. #2 has perfect feet.

There are ways to travel if necessary - I think Shriners help some; there is

a program called Angel Flights and there are other programs like Angel Flights

who provide transportation for children/parents who need help far away. There

are Mc Houses to stay in that are very cheap and often free to the

financially challenged family. We travel about 12 hours one way to see Dr.

Ponseti. Others here travel two days across America; others (many others!)

have traveled half way around the world. I remember there being another Alaska

parent on this group who may be able to offer advice/assistance.

One other note and I'll let you go - your daughter need not be in a rush to

apply those first casts to her baby's feet. She has a little bit of time to

find the right doc and travel to him. The hospital she delivers at will urge

her, even try to insist, she have casts applied before she takes the baby home.

If it's not a Ponsti Doctor, tell them no way! Even a month or two with out

treatment will be better than starting off immediately with poor treatment.

They will tell her horror stories to convince her to do something that day -

tell her to plug her ears, smile politely, then refuse. I went through this

myself both times. The 2nd time I was armed with enough information to tell

them no even though they treated me like a child-abuser for refusing their

service. They kept telling me all the surgeries he will require through his

life and were not open to hear me speak about an alternative approach to

treatment. Just smile and thank them and then refuse.

Please check all the files here, archives, Dr. Ponseti's site, parent's

sites with photos.... If she doesn't/cant have intenet, go buy a boat load of

ink and start printing off materials to send her to research.

Best of wishes,

shawnee

-----

Hi everyone,

My name is Joan and I live in Alaska, my daugther called tonight from

Washington and said on her 5 month sonagram

that they have found a clubfoot. We are reserching for all the info we can

find, Does any one have any advice for us?

thanks

Joan

[Guest guest]

Dressing a boy in snap outfits is easier than finding nice girl things in

snap legs. Boys just look good in those type of outfits, and the girl

stuff that has snap legs is just... kinda funny looking IMO. We used

stretch pants and snap shirts (t-shirts and turtlenecks) and diaper changes

were easy in those, she slept in those a lot too because I'd just dress her

for the morning before bed so all I had to do in the am was to change her

diaper and then put her in the car to take brother to school. Dresses also

worked just fine, with tights and no other socks. They even make boys

jeans and pants with snap legs, but the only snap outfits for girls are

those whole body things that... well... I just didn't like dressing her in

them. She's a girl, she should look like one! (I have two older

boys... I'm entitled to dress her like a girl if I want! lol)

Kori & Darbi

3/03 - DBB 12hr/day

Size 4 Markells Already, What A Big Foot Girl!

At 12:44 PM 10/20/2004, you wrote:

>I remember stressing too about what I'd dress him in but really, it's not

>nearly as complicated as I had anticipated.

>s.

>

> Re: sonograhm of new granddaughter

[Guest guest]

We didn't know about the CF till she was born, and everything we already

had except for a few pairs of cute girl shoes worked just fine. I had

things left over from her brothers, we did get a new infant carrier because

our old one was too wide to fit between two other carseats but it worked

fine with her brace anyway. I even think most of the footed outfits she

was given worked because she was nearly too big for them by the time she

got the FAB anyway.

I'm not saying that one shouldn't prepare and think about such things, but

only that even without preparation, it just wasn't a big deal at all for us

with existing products. The only thing we had to really change was to put

a bedrail on both sides of our King bed because this kid, at 3 months old

would scoot herself right across the whole bed and onto the floor. I can't

even count how many times she did that. Can't beat that FAB traction if

you're a 3 month old who wants to *GO*!

Kori & Darbi

3/03 - DBB 12hr/day

Size 4 Markells Already, What A Big Foot Girl!

At 01:17 PM 10/20/2004, you wrote:

>No - you really just have to plan for it and it all works out with no

>problem. With I have the added issue of getting to her g-tube which

>is even more limiting in clothing selection but you make do! Onsies with

>button holes where the tube is was one stroke of genius in the middle of

>the night - works great! LOL

> Re: sonograhm of new granddaughter

>

>

> Joan:

>

> Bless you for starting the search! Bear with us all, we may end

> up long winded here but we are very devout and devoted to our beloved

> Doctor Ponseti. (With good reason!)

>

> My advice is two things: One, if at all possible get your daughter

> connected on-line to join this group, it's a wealth of information - and

> 2, no matter how far she has to travel, find a Ponseti Approved doctor

> who is actually practicing the PONSTI METHOD AND PROTOCOL TO THE

> LETTER! No cheap imitation will do!

>

> This isn't the end of the world an I do hope she is not beating

> herself up with guilt. To date we are not sure what causes CF, but she

> can be sure it shows no race, social, economic, etc.,

> bounderies. Something that was passed on here recently is important for

> your daughter to remember...how did it go? " The most important thing

> that happens when a baby is born with a birth defect is that a baby is

> born. The most important thing that happens to parents when they give

> birth to a baby with a birth defect is that they become parents. "

>

> Club feet are very curable with excellent long term (life long)

> results IF treated right . The treatment can be acheived in as few as

> three weeks, up to nine weeks or so in really tough cases but that is

> rare - then the child wears the Dennis Brown Bar/shoes (DBB) to maintain

> the correction.

>

> Some who are not fans of the Ponseti Method (through ignorance in

> my opinion) will argue spending three to four years in the DBB is stupid

> when a simple surgery can correct the feet in one swoop and avoid the

> DBB. Beware of that mentality!!!!!!

>

> For one thing, the DBB is a very minor issue. The child wears it

> for 24 hours a day 7 days a week only for a few months. Then down to 18

> hours, then 16, then 14..... Usually, with in the first year to 18 months

> after correction, the time he/she wears the DBB is reduced to a mere 12 -

> 14 hours a day. We're talking bed time. Babies/toddlers....all

> children up to the 3 or 4 years of age they'll wear it require a solid 11

> to 12 hours of sleep per night anyway, so you can see the DBB becomes a

> part of their pajamas and nothihg more. The DBB does NOT hinder any mile

> stones or development! The child will crawl, roll over, cruise, etc.

> with it on, no problem!

>

> The advantage to this method is there is NO surgery. The bones in

> the feet are not cut, broken, etc.... there is no scar tissue to build up

> that will cause pain and more surgery later in life. Dr. Ponseti has

> about 50 years of case study backing up his method although the medical

> community at large has been very slow to adopt his method. It seems too

> good to be true, it's " too simple " therefore it must not be

> effective. Also, there are many doctors who claim to use the POnseti

> Method and will fool the new parent by saying they practice it..... " We

> use serial casting " . Well Ponseti's method uses serial casting, they

> all do. The difference is what Ponseti's Method is doing UNDER the

> cast. He (his method) is gently guiding the bones to their natural

> position. The bones are not deformed, they are just in the wrong place

> so his method puts them where they belong thus they are able to grow to

> adulthood normally and fully functionable.

>

> The DBB does not give correction - it holds the correction that was

> gained through these serial castings. The DBB is vital to success!

>

> Beware not all casts are equal! Very few doctors can accomplish

> the Ponseti results. Some doctors who trained under Ponseti have

> decided to re-invent the wheel with disasterous results. Beware of them

> too! Some will tell the parents the Ponseti method won't work on their

> particular child for whatever reason. I think one parent here was told

> her child needed surgery for " mis-aligned " bones. Well, in cf all the

> bones are mis-alligned, that is what cf is (in a nut shell). She found

> POnseti and he fixed her child with a few casts and NO surgery.

>

> Your daughter is on a treck through a field of land mines, more or

> less, to decipher the medical community and bogus doctors who we often

> find here want to treaat us parents like idiots. Education is the key

> here and you're so good to have come looking for answers for her but it's

> also important she do her own research so she can work intellegently with

> her doctor and spot trouble before it hits. If she is not convinced the

> Ponseti method will work, she won't have the courage to stick it out and

> will fall prey easily to doctor's telling her it doesn't work.

>

> IT DOES WORK.

>

> I am sorry this is so long but believe me - I have 2 cf

> children. One went through hell with bad treatment before I found Dr.

> Ponseti; my 2nd son I took directly to Dr. POnseti. The difference in

> results is amazing. #1 will always be somewhat crippled. #2 has perfect

feet.

>

> There are ways to travel if necessary - I think Shriners help some;

> there is a program called Angel Flights and there are other programs like

> Angel Flights who provide transportation for children/parents who need

> help far away. There are Mc Houses to stay in that are very

> cheap and often free to the financially challenged family. We travel

> about 12 hours one way to see Dr. Ponseti. Others here travel two days

> across America; others (many others!) have traveled half way around the

> world. I remember there being another Alaska parent on this group who

> may be able to offer advice/assistance.

>

> One other note and I'll let you go - your daughter need not be in a

> rush to apply those first casts to her baby's feet. She has a little

> bit of time to find the right doc and travel to him. The hospital she

> delivers at will urge her, even try to insist, she have casts applied

> before she takes the baby home. If it's not a Ponsti Doctor, tell them

> no way! Even a month or two with out treatment will be better than

> starting off immediately with poor treatment. They will tell her horror

> stories to convince her to do something that day - tell her to plug her

> ears, smile politely, then refuse. I went through this myself both

> times. The 2nd time I was armed with enough information to tell them no

> even though they treated me like a child-abuser for refusing their

> service. They kept telling me all the surgeries he will require through

> his life and were not open to hear me speak about an alternative approach

> to treatment. Just smile and thank them and then refuse.

>

> Please check all the files here, archives, Dr. Ponseti's site,

> parent's sites with photos.... If she doesn't/cant have intenet, go buy

> a boat load of ink and start printing off materials to send her to research.

>

> Best of wishes,

> shawnee

>

> -----

> Hi everyone,

>

> My name is Joan and I live in Alaska, my daugther called tonight

> from Washington and said on her 5 month sonagram

> that they have found a clubfoot. We are reserching for all the info

> we can find, Does any one have any advice for us?

>

> thanks

>

> Joan

>

>

>

>

>

>

>

>

[Guest guest]

No - you really just have to plan for it and it all works out with no problem.

With I have the added issue of getting to her g-tube which is even more

limiting in clothing selection but you make do! Onsies with button holes where

the tube is was one stroke of genius in the middle of the night - works great!

LOL

Re: sonograhm of new granddaughter

Joan:

Bless you for starting the search! Bear with us all, we may end up long

winded here but we are very devout and devoted to our beloved Doctor Ponseti.

(With good reason!)

My advice is two things: One, if at all possible get your daughter

connected on-line to join this group, it's a wealth of information - and 2, no

matter how far she has to travel, find a Ponseti Approved doctor who is actually

practicing the PONSTI METHOD AND PROTOCOL TO THE LETTER! No cheap imitation

will do!

This isn't the end of the world an I do hope she is not beating herself up

with guilt. To date we are not sure what causes CF, but she can be sure it shows

no race, social, economic, etc., bounderies. Something that was passed on here

recently is important for your daughter to remember...how did it go? " The most

important thing that happens when a baby is born with a birth defect is that a

baby is born. The most important thing that happens to parents when they give

birth to a baby with a birth defect is that they become parents. "

Club feet are very curable with excellent long term (life long) results IF

treated right . The treatment can be acheived in as few as three weeks, up to

nine weeks or so in really tough cases but that is rare - then the child wears

the Dennis Brown Bar/shoes (DBB) to maintain the correction.

Some who are not fans of the Ponseti Method (through ignorance in my

opinion) will argue spending three to four years in the DBB is stupid when a

simple surgery can correct the feet in one swoop and avoid the DBB. Beware of

that mentality!!!!!!

For one thing, the DBB is a very minor issue. The child wears it for 24

hours a day 7 days a week only for a few months. Then down to 18 hours, then

16, then 14..... Usually, with in the first year to 18 months after correction,

the time he/she wears the DBB is reduced to a mere 12 - 14 hours a day. We're

talking bed time. Babies/toddlers....all children up to the 3 or 4 years of

age they'll wear it require a solid 11 to 12 hours of sleep per night anyway, so

you can see the DBB becomes a part of their pajamas and nothihg more. The DBB

does NOT hinder any mile stones or development! The child will crawl, roll

over, cruise, etc. with it on, no problem!

The advantage to this method is there is NO surgery. The bones in the

feet are not cut, broken, etc.... there is no scar tissue to build up that will

cause pain and more surgery later in life. Dr. Ponseti has about 50 years of

case study backing up his method although the medical community at large has

been very slow to adopt his method. It seems too good to be true, it's " too

simple " therefore it must not be effective. Also, there are many doctors who

claim to use the POnseti Method and will fool the new parent by saying they

practice it..... " We use serial casting " . Well Ponseti's method uses serial

casting, they all do. The difference is what Ponseti's Method is doing UNDER

the cast. He (his method) is gently guiding the bones to their natural

position. The bones are not deformed, they are just in the wrong place so his

method puts them where they belong thus they are able to grow to adulthood

normally and fully functionable.

The DBB does not give correction - it holds the correction that was gained

through these serial castings. The DBB is vital to success!

Beware not all casts are equal! Very few doctors can accomplish the

Ponseti results. Some doctors who trained under Ponseti have decided to

re-invent the wheel with disasterous results. Beware of them too! Some will

tell the parents the Ponseti method won't work on their particular child for

whatever reason. I think one parent here was told her child needed surgery for

" mis-aligned " bones. Well, in cf all the bones are mis-alligned, that is what

cf is (in a nut shell). She found POnseti and he fixed her child with a few

casts and NO surgery.

Your daughter is on a treck through a field of land mines, more or less,

to decipher the medical community and bogus doctors who we often find here want

to treaat us parents like idiots. Education is the key here and you're so good

to have come looking for answers for her but it's also important she do her own

research so she can work intellegently with her doctor and spot trouble before

it hits. If she is not convinced the Ponseti method will work, she won't have

the courage to stick it out and will fall prey easily to doctor's telling her it

doesn't work.

IT DOES WORK.

I am sorry this is so long but believe me - I have 2 cf children. One

went through hell with bad treatment before I found Dr. Ponseti; my 2nd son I

took directly to Dr. POnseti. The difference in results is amazing. #1 will

always be somewhat crippled. #2 has perfect feet.

There are ways to travel if necessary - I think Shriners help some; there

is a program called Angel Flights and there are other programs like Angel

Flights who provide transportation for children/parents who need help far away.

There are Mc Houses to stay in that are very cheap and often free

to the financially challenged family. We travel about 12 hours one way to see

Dr. Ponseti. Others here travel two days across America; others (many others!)

have traveled half way around the world. I remember there being another Alaska

parent on this group who may be able to offer advice/assistance.

One other note and I'll let you go - your daughter need not be in a rush

to apply those first casts to her baby's feet. She has a little bit of time to

find the right doc and travel to him. The hospital she delivers at will urge

her, even try to insist, she have casts applied before she takes the baby home.

If it's not a Ponsti Doctor, tell them no way! Even a month or two with out

treatment will be better than starting off immediately with poor treatment.

They will tell her horror stories to convince her to do something that day -

tell her to plug her ears, smile politely, then refuse. I went through this

myself both times. The 2nd time I was armed with enough information to tell

them no even though they treated me like a child-abuser for refusing their

service. They kept telling me all the surgeries he will require through his

life and were not open to hear me speak about an alternative approach to

treatment. Just smile and thank them and then refuse.

Please check all the files here, archives, Dr. Ponseti's site, parent's

sites with photos.... If she doesn't/cant have intenet, go buy a boat load of

ink and start printing off materials to send her to research.

Best of wishes,

shawnee

-----

Hi everyone,

My name is Joan and I live in Alaska, my daugther called tonight from

Washington and said on her 5 month sonagram

that they have found a clubfoot. We are reserching for all the info we can

find, Does any one have any advice for us?

thanks

Joan