Re: Cast Lady needs your inpt

[Guest guest]

Oh my gosh! I was just thinking about talking to my doc to get something going

on the exact same thing!

I think one thing you need to let the parents know is that it isn't their fault.

I don't know how you'd go about saying that but I think it should probably be

the first thing on the page. I think that's my big one. I know when Judd was

born it was such a shock all I kept thinking is, what did I do wrong??

Other than that I am clueles...lol. I got most of my info from

Clarissa

Cast Lady needs your inpt

Hello friends,

I am in the begining stages of producing a brochure to leave in OB

offices and hospital units. What I need from you is some idea as to

what would have been important/informative points that would have

drawn you to call a number on a brochure regarding Ponseti clubfoot

treatment.

This is not going to include " Too much information " just enough to

initiate the call to begin some more helpfull conversation.

Thanx so much~~The Cast Lady

[Guest guest]

Dear Cast Lady,

I think it very important that parents find the nearest qualified Ponseti

doctor from Dr. Ponseti's website. They accept no substitute!

Thanks for the brochure and your dedication to the P Method!

Eddie and Jordan (4-9-00, bilateral)

Cast Lady needs your inpt

Hello friends,

I am in the begining stages of producing a brochure to leave in OB

offices and hospital units. What I need from you is some idea as to

what would have been important/informative points that would have

drawn you to call a number on a brochure regarding Ponseti clubfoot

treatment.

This is not going to include " Too much information " just enough to

initiate the call to begin some more helpfull conversation.

Thanx so much~~The Cast Lady

[Guest guest]

Clarrissa,

Maybe we are thinking alike since we live sorta close, or because of

all the crappy (can I say that?) weather all we do is think.

I was thinking of starting with these 2 statements

1) Clubfoot is one of the most common pediatric congenital

abnormalities. { I am using abnormality rather than defformity, can

you think of anything more gentle? }

2) Clubfoot does have a genetic factor although it can occur without

any family history, There is no known cause for Clubfoot. It is not

caused by anything anyone did or did'nt do!

Beth

-- In nosurgery4clubfoot@y..., " Clarissa kson "

<nopeekiepeekie@p...> wrote:

> Oh my gosh! I was just thinking about talking to my doc to get

something going on the exact same thing!

>

> I think one thing you need to let the parents know is that it isn't

their fault. I don't know how you'd go about saying that but I think

it should probably be the first thing on the page. I think that's my

big one. I know when Judd was born it was such a shock all I kept

thinking is, what did I do wrong??

>

> Other than that I am clueles...lol. I got most of my info from

>

> Clarissa

> Cast Lady needs your inpt

>

>

> Hello friends,

> I am in the begining stages of producing a brochure to leave in OB

> offices and hospital units. What I need from you is some idea as

to

> what would have been important/informative points that would have

> drawn you to call a number on a brochure regarding Ponseti

clubfoot

> treatment.

> This is not going to include " Too much information " just enough

to

> initiate the call to begin some more helpfull conversation.

>

> Thanx so much~~The Cast Lady

>

>

>

[Guest guest]

Beth,

No offense meant in this, but I wouldn't want to see " abnormality "

pertaining to something about my baby. Maybe I'm wrong, but birth

defect still sounds better to me.

emeyers@... wrote:

> Clarrissa,

> Maybe we are thinking alike since we live sorta close, or because of

> all the crappy (can I say that?) weather all we do is think.

> I was thinking of starting with these 2 statements

>

> 1) Clubfoot is one of the most common pediatric congenital

> abnormalities. { I am using abnormality rather than defformity, can

> you think of anything more gentle? }

>

> 2) Clubfoot does have a genetic factor although it can occur without

> any family history, There is no known cause for Clubfoot. It is not

> caused by anything anyone did or did'nt do!

>

> Beth

[Guest guest]

Hi Eddie,

I think there are alot of Doc's that are taught and practicing

Ponseti's treatment as prescribed but not on his web site. I was able

to get Dr. Ponseti's blessing on Dr. Aadalen here at Shriners and put

him on the qualified Dr. list. Dr. Aadalen and I went to Iowa and

learned his method.Also it took forever for his name to finally appear

on the list due to their web master, and we have disscussed here

before that Dr. Ponseti can't possibly get out to check everyones

practice.. this becomes the families responsability to research

themselves.

I agree that the parents need to find the closest ponseti doc also.

There are also Doc's out there who say they practice ponseti and

really don't, your web e-group is very helpfull to families searching

for honest info, teaching them how to determine a true ponseti

physician is the best help you give.

This si also a good way to promote Shriners Hospitals an the

woderfull free care they give to childre with orthopedic needs.

Thanx for the input

> Dear Cast Lady,

>

> I think it very important that parents find the nearest qualified

Ponseti

> doctor from Dr. Ponseti's website. They accept no substitute!

> Thanks for the brochure and your dedication to the P Method!

> Eddie and Jordan (4-9-00, bilateral)

> Cast Lady needs your inpt

>

>

> Hello friends,

> I am in the begining stages of producing a brochure to leave in OB

> offices and hospital units. What I need from you is some idea as

to

> what would have been important/informative points that would have

> drawn you to call a number on a brochure regarding Ponseti

clubfoot

> treatment.

> This is not going to include " Too much information " just enough

to

> initiate the call to begin some more helpfull conversation.

>

> Thanx so much~~The Cast Lady

>

>

>

[Guest guest]

Beth (Cast Lady),

One suggestion is to refer to Dr. Ponseti's page " To Parents of

Children Born with Clubfoot " . This passage, which begins it, was very

comforting to me, because I was so scared and didn't know if it meant

that my child would be normal in other ways or not, and how it would

affect her life:

" Parents of infants born with clubfeet may be reassured that their

baby, if otherwise normal, when treated by expert hands will have

normal looking feet with normal function for all practical purposes.

The well-treated clubfoot is no handicap and is fully compatible with

a normal, active life. " -- Dr. Ponseti

The big caveat, however, is that the treatment has to be with someone

who knows what they're doing and follows the method to the T.

The phrase " WHEN TREATED BY EXPERT HANDS " should be in neon lights.

Everyone led us to believe in the hospital that this was no big

deal.. probably trying to help us feel better.. when we really needed

to hear that we should check into options and choose the treatment

path very carefully.

I could write a book.. but I better restrain myself!

and

[Guest guest]

Please don't worry I am not offended I want this to be a kind gentle

offering to parents at a difficult but joyfull time. We want to offer

hope and possitive options.

Maybe others will help be offering their opinion and majoriy will

rule. You guys have been there I have'nt.

Beth

>

> > Clarrissa,

> > Maybe we are thinking alike since we live sorta close, or because

of

> > all the crappy (can I say that?) weather all we do is think.

> > I was thinking of starting with these 2 statements

> >

> > 1) Clubfoot is one of the most common pediatric congenital

> > abnormalities. { I am using abnormality rather than defformity,

can

> > you think of anything more gentle? }

> >

> > 2) Clubfoot does have a genetic factor although it can occur

without

> > any family history, There is no known cause for Clubfoot. It is

not

> > caused by anything anyone did or did'nt do!

> >

> > Beth

>

>

>

[Guest guest]

I have actually seen this quote in three different wordings now 4 by

Dr. Ponseti so I am going to pick one for the statement before a

simple outline of treatment.

I also intend to add that we have physicians who have a long

background in treating Clubfoot and that we also offer surgical

options. People have many different reasons they may need to choose

what they choose. After it's done and too full I will have to

down-size :0) I do intend to add the e-group address and the virtual

hospital and of course our website.

-- In nosurgery4clubfoot@y..., " Audilet " <audilet@b...> wrote:

> Beth (Cast Lady),

>

> One suggestion is to refer to Dr. Ponseti's page " To Parents of

> Children Born with Clubfoot " . This passage, which begins it, was

very

> comforting to me, because I was so scared and didn't know if it

meant

> that my child would be normal in other ways or not, and how it would

> affect her life:

>

> " Parents of infants born with clubfeet may be reassured that their

> baby, if otherwise normal, when treated by expert hands will have

> normal looking feet with normal function for all practical purposes.

> The well-treated clubfoot is no handicap and is fully compatible

with

> a normal, active life. " -- Dr. Ponseti

>

> The big caveat, however, is that the treatment has to be with

someone

> who knows what they're doing and follows the method to the T.

> The phrase " WHEN TREATED BY EXPERT HANDS " should be in neon lights.

> Everyone led us to believe in the hospital that this was no big

> deal.. probably trying to help us feel better.. when we really

needed

> to hear that we should check into options and choose the treatment

> path very carefully.

>

> I could write a book.. but I better restrain myself!

>

> and

[Guest guest]

I think it would be helpful to most parents to let them know about this

support group on the web. I also think that highlightong specifically the

term " non surgical " method is available.

[Guest guest]

Beth,

Like Theresa, I like Dr. Ponseti's quote on his site to

parents. " Parents of infants born with clubfeet may be reassured that

their baby, if otherwise normal, when treated by expert hands will

have normal looking feet with normal function for all practical

purposes. The well-treated clubfoot is no handicap and is fully

compatible with a normal, active life. " -- Dr. Ponseti Back in

April 1999, when Allyson found Dr. Ponseti's site, there was only the

message to Parents and the one to Doctors at his site. There were

not yet any of the testimonials, doctors lists, answers to

questions. That one sentence statement and the page it was attached

to by Dr. Ponseti was the hope that we grasped on to that perhaps

there was something else other than what we had been told by our

original pediatric orthopedist.

For many parents it is and will be a difficult choice to leave their

local doctor to pursue the Ponseti method. For many of us, this has

also been after our local doctors had advised us not to use the

Ponseti method. We didn't realize at that time that they really

didn't understand the Ponseti method themselves at all. Hopefully

within a few years the Ponseti method will become the mainstream

method of manipulation and casting, but until then most parents are

going to have to realize that there is a reason to travel to where it

is offered.

I think that many parents go from shock, to sorrow, to hope that

there is some kind of treatment, to hope that the casting their

doctor is using will work without the surgery, although they may be

told that hope is slim. I don't think that the idea that there may

be controversies on treatment methods would have ever entered our

head without having seen Dr. Ponseti's web site. Prior to that we

were resolved to follow whatever our local doctor told us. I don't

think that many of us would have thought that a proven " non-surgical "

method would exist and not have already been picked up by the

mainstream medical community by at least the 1960's or 70's.

As to how to communicate those ideas and a sense of the Ponseti

method being different than the mainstream casting methods may not be

easy to convey in a brochure. Thank you for making the effort and

hopefully you will also be able to get it to spread throughout the

Shriner's 19 hospital system.

By the way, I noticed your new Minneapolis Shriners story on the

Ponseti method (April 27, 01). Very nice. Is that your arm holding

young Garrett up? http://www.shrinershq.org/WhatsNew/clubfoot4-

01.html

Thanks for helping to get this information to parents.

and (3-17-99)

> > Beth (Cast Lady),

> >

> > One suggestion is to refer to Dr. Ponseti's page " To Parents of

> > Children Born with Clubfoot " . This passage, which begins it, was

> very

> > comforting to me, because I was so scared and didn't know if it

> meant

> > that my child would be normal in other ways or not, and how it

would

> > affect her life:

> >

> >

> >

> > The big caveat, however, is that the treatment has to be with

> someone

> > who knows what they're doing and follows the method to the T.

> > The phrase " WHEN TREATED BY EXPERT HANDS " should be in neon

lights.

> > Everyone led us to believe in the hospital that this was no big

> > deal.. probably trying to help us feel better.. when we really

> needed

> > to hear that we should check into options and choose the

treatment

> > path very carefully.

> >

> > I could write a book.. but I better restrain myself!

> >

> > and