RE: Re: 18 months and starting

[Guest guest]

Thanks for the welcome.

is a twin and we were told at birth that her feet were just turned in

a bit due to position but they would straighten. They didn't and we've never

had a clear dx. her left straightened on its own but the right has been

stubborn. we've tried tx, a botox and casting with a fiberglass cast and

were scheduled for a heel cord release when her surgeon went into premature

labor. that sent us out of town looking for someone to do the release and

we ended up being told that her foot is not straight enough for the release.

frustrating!!!!

we are in louisville and are not getting treatment in Cincinatti with a

ponsetti trained person - dr. von stein. i am less worried about the casts,

as we have done it before and is a real trooper. today somebody told

me that a physician in St. Louis has developed a shoe that is not attached.

that has been my main concern - as started walking only 2 days before

the casting and will surely want to walk when she is out. i can't imagine

putting her shoes connected by a bar. i need to find out more about this

potential option.

Liz

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: 18 months and starting

>Date: Fri, 22 Jul 2005 13:32:48 -0000

>

>Hi Liz, welcome to the group!

>

>You will be surprised at how well children adapt to casts and braces.

>Before long will be zooming around as if nothing.

>

>How old was when she was diagnosed? Did you notice anything

>different about her feet(foot) at birth? Does it involve the whole

>foot or just part of the foot?

>

>Where are you located and who is 's doctor (orthopaedic)?

>

>Good to have you here! Fire away with any questions that you have.

>

>Daiga and Owen, 02/04/03

>Unilateral LCF, FAB 14/7

>

>

>

> > Anybody out there start late? was not diagnosed at birth but we

> > started treatments at one year. It took us a while to come to

> > Ponsetti

> > and she apparently has a mild case (mild enough that none of the

> > pediatricians in the practice we go to picked up on it). I'm

> > concerned about how she will do with the casts and more specifically

> > the bar. It nearly broke my heart to cast her two days after she

> > started walking independently.

> >

> > Liz

>

>

[Guest guest]

Liz, If the shoe is not attached, they are probably talking about AFOs... I

don't really know anything about them other than the fact that so many parents

write posts to these groups complaining about them... The general consensus is

that they don't work, so be wary of anything that sounds to good to be true.

Treating cf is an ordeal to be sure for both parents and child, but be assured

it's worth the hassle in the end.

Liz Bernhard wrote: Thanks for the welcome.

is a twin and we were told at birth that her feet were just turned in

a bit due to position but they would straighten. They didn't and we've never

had a clear dx. her left straightened on its own but the right has been

stubborn. we've tried tx, a botox and casting with a fiberglass cast and

were scheduled for a heel cord release when her surgeon went into premature

labor. that sent us out of town looking for someone to do the release and

we ended up being told that her foot is not straight enough for the release.

frustrating!!!!

we are in louisville and are not getting treatment in Cincinatti with a

ponsetti trained person - dr. von stein. i am less worried about the casts,

as we have done it before and is a real trooper. today somebody told

me that a physician in St. Louis has developed a shoe that is not attached.

that has been my main concern - as started walking only 2 days before

the casting and will surely want to walk when she is out. i can't imagine

putting her shoes connected by a bar. i need to find out more about this

potential option.

Liz

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: 18 months and starting

>Date: Fri, 22 Jul 2005 13:32:48 -0000

>

>Hi Liz, welcome to the group!

>

>You will be surprised at how well children adapt to casts and braces.

>Before long will be zooming around as if nothing.

>

>How old was when she was diagnosed? Did you notice anything

>different about her feet(foot) at birth? Does it involve the whole

>foot or just part of the foot?

>

>Where are you located and who is 's doctor (orthopaedic)?

>

>Good to have you here! Fire away with any questions that you have.

>

>Daiga and Owen, 02/04/03

>Unilateral LCF, FAB 14/7

>

>

>

> > Anybody out there start late? was not diagnosed at birth but we

> > started treatments at one year. It took us a while to come to

> > Ponsetti

> > and she apparently has a mild case (mild enough that none of the

> > pediatricians in the practice we go to picked up on it). I'm

> > concerned about how she will do with the casts and more specifically

> > the bar. It nearly broke my heart to cast her two days after she

> > started walking independently.

> >

> > Liz

>

>

[Guest guest]

Liz,

We hear good things about Dr Von Stein, it sounds like you are (finally) in good

hands.

The brace you are referring to is likely the new FAB designed by Dr Dobbs. It's

not that feet are not attached, rather that the bar between them is jointed so

that the feet can move independantly. I don't know if this would set very

far ahead as far as the walking goes. A few of the older kids here are in the

Dobbs brace, hopefully they'll chime in.

The FAB has been shown, however, to be the only retention device that really

works with this method. Some doctors have tried ankle foot orthotics (AFOs,

which are molded plastic boots that cannot hold the foot turned out in external

rotation) or knee ankle foot orthotics (KAFOs, Wheaton brace, which are the same

general idea, but they go above the knee. These can provide the required

external rotation, but can lead to serious muscle atrophy). Results with these

are less than satisfactory. Children can get around fairly well in the FAB. My

son walks around in his pushing a toy. And thinks it's hilarious to try to take

unaided steps in it. Since is older and has a mild case, it's likely that

she will not have to do the whole 3 months of full-time wear. Talk to Dr Von

Stein about it, and send Dr Ponseti a note as well.

Another thing for you to consider, since you are talking about insurance woes,

is going to see Dr Dobbs in St Louis. He practices out of the Shriner's

hospital there (as well as out of the Children's Hospital) where all care,

braces, everything is provided free of charge. The Shriner's application

process is very straightforward. They accept everyone, regardless of income.

You can apply over the phone, you just need to be sure to insist on seeing Dr

Dobbs. He is one of the top Ponseti practitioners and has quiet a bit of

experience with these older babies. Here is contact information:

Dobbs, M.D.

Shriners Hospitals for Children

St. Louis Unit

2001 S. Lindbergh Blvd.

St. Louis, MO 63131-3597

Tel:

Please let us know if there is anything else we can help you with. We wish you

andyour family much success!

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, corrected bilateral clubfoot, FAB

14/7)

Liz Bernhard wrote:

Thanks for the welcome.

is a twin and we were told at birth that her feet were just turned in

a bit due to position but they would straighten. They didn't and we've never

had a clear dx. her left straightened on its own but the right has been

stubborn. we've tried tx, a botox and casting with a fiberglass cast and

were scheduled for a heel cord release when her surgeon went into premature

labor. that sent us out of town looking for someone to do the release and

we ended up being told that her foot is not straight enough for the release.

frustrating!!!!

we are in louisville and are not getting treatment in Cincinatti with a

ponsetti trained person - dr. von stein. i am less worried about the casts,

as we have done it before and is a real trooper. today somebody told

me that a physician in St. Louis has developed a shoe that is not attached.

that has been my main concern - as started walking only 2 days before

the casting and will surely want to walk when she is out. i can't imagine

putting her shoes connected by a bar. i need to find out more about this

potential option.

Liz

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