Re: 7 MONTHS AND ....--Please seek Dr. Ponseti's advice first!

[Guest guest]

I actually found Dr. Ponseti's website tonight and emailed him my

concerns. I am hoping to get a reply tomorrow? If I don't hear

from him, I am planning to get a second opinion from Dr. Armstrong

in Cleveland or Dr. VonStein in Cincinnati, Ohio. I found their

names on Dr. Ponseti's website also. Does anyone have any

experience with either of these docs?

> >

> > My son is 7 months old. He was born with a severe case of club

> > foot. We did the serial casting starting when he was 2 days

old.

> > We did that for approximately 12 weeks. At that time he had

his

> > first tendon lengthening surgery. After surgery, he was casted

> for

> > the 3 week period and then we were told he needed the

orthopedic

> > shoes. We tried the shoes for 12 more weeks. They kept

falling

> off

> > and they weren't doing what they were supposed to do, they

weren't

> > correcting his foot. So the doctor said we needed to do

another

> > tendon lengthening surgery (this one they lengthened the tendon

> that

> > elongated the big toe). After surgery he was casted for 2

weeks.

> > After those casts came off, the foot still wasn't coming up (to

a

> > right angle), so we are back to casting weekly. Our most

recent

> > appointment was the Monday before the 4th of July and the

doctor

> > said that the casting isn't giving the results that he had

hoped

> > for, so we may have to do a third tendon lengthening

> surgery....this

> > time on the peroneus longus tendon. I'm starting to wonder how

> many

> > more of these surgeries we are going to have to go through.

I've

> > tried to find other information on the web, but there is so

much

> > that is not known about this deformity.

> > Anyone have any reassuring input/advice?

> >

>

>

>

>

>

>

> ---------------------------------

> Want to be your own boss? Learn how on Yahoo! Small Business.

>

>

[Guest guest]

That's great! Just take the pictures like Kori noted in her earlier

email to you. It might also help to note where the incisions are

from his last surgery if you don't know the details on exactly what

was done. Dr. Ponseti might be able to guess if he knows where they

are.

In the meantime, you might want to call and talk to a nurse at Dr.

VonStein's office to determine what the earliest date would be that

they can see you. You can always cancel the appointment if you

decide to go to Iowa of course. (I say talk to a nurse because the

regular receptionists might not try to work you in early...maybe

some of Dr. VonStein's families could chime in with ideas here).

Good luck and keep us posted!

>

> I just wanted to update everyone that I did hear back from Dr.

Ponseti this

> morning. He has requested that I send him photos of Dino's feet

and then he

> can tell us what course of action to take next.

> Thank you so much again!

[Guest guest]

This Spring, my daughter was turning a year and her feet were in

pretty bad shape after a year of a semi-Ponseti doctor. This board

pushed me to Dr. Ponseti and my daughter's feet are beautiful. I

feel exactly the same way--so grateful for this resource. Ok, now I

feel a little tearful...

So glad you are getting into the right doctor. There is great hope

for your son.

> > > > >

> > > > > My son is 7 months old. He was born with a severe case of

club

> > > > > foot. We did the serial casting starting when he was 2 days

> > > old.

> > > > > We did that for approximately 12 weeks. At that time he had

> > > his

> > > > > first tendon lengthening surgery. After surgery, he was

casted

> > > > for

> > > > > the 3 week period and then we were told he needed the

> > > orthopedic

> > > > > shoes. We tried the shoes for 12 more weeks. They kept

> > > falling

> > > > off

> > > > > and they weren't doing what they were supposed to do, they

> > > weren't

> > > > > correcting his foot. So the doctor said we needed to do

> > > another

> > > > > tendon lengthening surgery (this one they lengthened the

tendon

> > > > that

> > > > > elongated the big toe). After surgery he was casted for 2

> > > weeks.

> > > > > After those casts came off, the foot still wasn't coming up

(to

> > > a

> > > > > right angle), so we are back to casting weekly. Our most

> > > recent

> > > > > appointment was the Monday before the 4th of July and the

> > > doctor

> > > > > said that the casting isn't giving the results that he had

> > > hoped

> > > > > for, so we may have to do a third tendon lengthening

> > > > surgery....this

> > > > > time on the peroneus longus tendon. I'm starting to wonder

how

> > > > many

> > > > > more of these surgeries we are going to have to go through.

> > > I've

> > > > > tried to find other information on the web, but there is so

> > > much

> > > > > that is not known about this deformity.

> > > > > Anyone have any reassuring input/advice?

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ---------------------------------

> > > > Want to be your own boss? Learn how on Yahoo! Small Business.

> > > >

> > > >

[Guest guest]

Please go see Dr. Ponseti. He is amazing. I have an appt. with him

Friday and would never hesitate to travel to him. He isn't

incredible CONSIDERING his age. He is just incredible.

This is the best possible treatment for your little one. There were

probably people who thought " Dr. Ponseti is 88--is it worth the trip "

and they have had four years of treatment. We can't predict the

future regarding Dr. Ponseti but can just cross that road when we

come to it. I hear he has other excellent doctors on staff. In the

meantime, see him as soon as you can. , his nurse, called me on

a Thursday for Lily's first appt. telling me we could get in to him

the next morning. I had been due to leave in a hour for a long

weekend celebrating my parents' 40th anniv. I went to see Dr.P. My

parents understood. It is worth any self-sacrifice to have this

kind, wise humble doctor lay his hands on Dino's feet. I am awed by

the difference in Lily's feet from getting her into the " right "

treatment. After 5 weeks of casting, Lily went from a size 0-3 sock

at age 11.5 months to an almost too small 6-12 month sock, not to

mention how beautiful they were! Go, you won't regret it!

Do I sound enthusiastic enough?!

I understand it can be difficult to travel but there are others here

who can offer you advice on travel and staying in IA City at the

RMH. I had a friend staying at the RMH who met a woman who came from

JAPAN just to see Dr. Ponseti.

Best of luck to you,

> >

> > I just wanted to update everyone that I did hear back from Dr.

> Ponseti this

> > morning. He has requested that I send him photos of Dino's feet

> and then he

> > can tell us what course of action to take next.

> > Thank you so much again!

>

>

[Guest guest]

,

I wouldn't let worry about Dr. Ponseti's age disuade you from going to

Iowa. He is probably doing more than he should these days but he is

just so dedicated to these babies, you would never regret the trip -

he is really amazing. I had the pleasure of meeting him last year and

it was just inspiring to watch him work. Did you ask him specifically

about Dr. VonStein to see what he thought about her working with

Dino's feet? If he knew that you were looking at going to her and he

said she wasn't experienced enough, then I would listen to him. If

finances are going to be a big factor, although you certainly can find

ways to make going Iowa inexpensive (we can help with that too), I

think he would agree that Dr. Dobbs would be a viable alternative.

All you have to do is tell Dr. Ponseti whatever your concerns are, ask

him whatever questions you need to ask, he will not steer you wrong.

HTH,

> >

> > I just wanted to update everyone that I did hear back from Dr.

> Ponseti this

> > morning. He has requested that I send him photos of Dino's feet

> and then he

> > can tell us what course of action to take next.

> > Thank you so much again!

>

>

[Guest guest]

,

I don't think the free flights are based on income. There's a

comprehensive list of the organizations that do free flights and

discounted flights in the files section on the group's website.

If he said there was no one in Ohio, then I would have to go with that

assessment. Personally, knowing that, I think that leaves you with

either Dr. P directly or Dr. Dobbs. It is really easy to stay long

term in Iowa, they are readily equipped for that because so many

people do it. I think for St. Louis it might be easier to travel back

and forth weekly.

allison

> > >

> > > I just wanted to update everyone that I did hear back from Dr.

> > Ponseti this

> > > morning. He has requested that I send him photos of Dino's feet

> > and then he

> > > can tell us what course of action to take next.

> > > Thank you so much again!

> >

> >

[Guest guest]

,

Just so you know- there are other doctors in Iowa too, colleagues of

Dr. Ponseti, with years of experience. Jakob, 's son, who

lives in Iowa City is actually a patient of Dr. Weinstein. My

daughter, , while she is a patient of Dr. Ponseti, she has also

had examinations by Dr. Dietz and Dr. Morcuende.

You should really consider going to Iowa for the initial

consultation and correction and then do your follow up appointments

with Von Stein.

I drove 10 hours one way to Iowa City when was 4 months old-

did it four weeks in a row (for Monday morning appointments- drove

back Monday and returned to work Tuesday) and would do it all over

again in a heartbeat- even with my current gang of 3 screaming

kids.

You won't regret it!

Keep us posted!

> > >

> > > I just wanted to update everyone that I did hear back from

Dr.

> > Ponseti this

> > > morning. He has requested that I send him photos of Dino's

feet

> > and then he

> > > can tell us what course of action to take next.

> > > Thank you so much again!

> >

> >

[Guest guest]

I volunteered for a couple years at one of the Mc Houses

in St. Louis (I grew up in St. Louis and moved away 6 years ago).

They are really wonderful! When I was moving out of town, the West

Pine location (near -Jewish Hospital) was in the process of

acquiring a building I believe they were going to use entirely for

long-term apartments.

I know many people here have staying in IA City too. The only

downside with the St. Louis ones are you would have to drive to

Shriners from both but that isn't much of a downside.

> > > >

> > > > I just wanted to update everyone that I did hear back from

Dr.

> > > Ponseti this

> > > > morning. He has requested that I send him photos of Dino's

feet

> > > and then he

> > > > can tell us what course of action to take next.

> > > > Thank you so much again!

> > >

> > >

[Guest guest]

Shriners provides transportation to and from the Mc

Houses in St. Louis. They also have a Haven House which is right near

the Shrine.

, how come I didn't know you were from StL? What area are you from?

> > > > >

> > > > > I just wanted to update everyone that I did hear back from

> Dr.

> > > > Ponseti this

> > > > > morning. He has requested that I send him photos of Dino's

> feet

> > > > and then he

> > > > > can tell us what course of action to take next.

> > > > > Thank you so much again!

> > > >

> > > >

[Guest guest]

,

Let me join the chorus in saying you will not regret going.

we traveled from the east coast, staying overnight each time, and

went back home after every appt., partly because we had other young

children at home and it was easier, for us, to do it that way. also,

since she was older (4 to 5 months old), she could wear the casts

longer than a newborn; I think we had 10 to 14 days between appts.

i understand how hard it is to 'make the leap' of deciding to go. it

seems crazy at first. you wonder, is this really necessary? The

question will be answered for you once you are there. it truly is 'as

good as advertised'. the experience and results we had in Iowa were

night and day from what we had before. As a mom, I felt the

difference in my child right away. I knew that this finally was the

place for my baby to be, and the dramatic, immediate change in her

foot (after months of stalled progress before) was the proof.

about his age.. the way I see it, this is a skill of the hands that

doesn't diminish with time, but benefits from it .. he doesn't

perform surgeries any more, but the manipulations are a matter of

finesse, touch and experience. No one knows this condition better.

He works closely with Dr. Morcuende, his right hand man, so to speak,

who is excellent, and all the other doctors there, and frequently

hosts visiting physicians.

When we decided to go, I told her doctor at the time (a man in his

40s). He said, " if you take her to him, you'll be taking her to the

best. " And he was right.

best wishes, and hope this helps,

and Claire

6/29/00 left cf

[Guest guest]

Hi ,

The Shriner's in StL is right near a Haven House

http://www.havenhousestl.org/

which is similar to Mc houses, they provide a room and 2

meals per day. They are small and don't always have room to

accomodate long term stays, although it is possible. The

Mc Houses are a little farther away from Shriner's but they do

have transportation. It is certainly possible to stay long term in

St.L but maybe just logistically not quite as easy as it is in Iowa.

And maybe it's not even that it is not as " easy " , but just not as

commonly done so it takes just a wee bit more work on all parties

involved for making the necessary arrangments.

Hope this makes sense, I'm not sure if I'm explaining myself quite

right. Also, just FYI, RMD house in StL is just $5/night and the

Haven House is $25/night, although the rate goes down if you do stay

long term.

HTH,

> > > >

> > > > I just wanted to update everyone that I did hear back from Dr.

> > > Ponseti this

> > > > morning. He has requested that I send him photos of Dino's feet

> > > and then he

> > > > can tell us what course of action to take next.

> > > > Thank you so much again!

> > >

> > >

[Guest guest]

Hi .

I don't think I ever mentioned I am from St. Louis. My family still

lives there and we get back all the time--I LOVE St. Louis. I grew

up in the Central West End but my parents downsized recently and move

to Shrewsbury and my sister lives in Webster so that's the area I

mostly get to these days.

It's funny my Mom sent me an article when Lily was little about Dr.

Dobbs and I grew up a few blocks from -Jewish, one of the

hospitals Dr. Dobbs practices I believe. Aaahhh, what could have

been? If only I had heeded my mom's advice initially...

What area do you live in? Did you grow up in St. Louis?

> > > > > >

> > > > > > I just wanted to update everyone that I did hear back

from

> > Dr.

> > > > > Ponseti this

> > > > > > morning. He has requested that I send him photos of

Dino's

> > feet

> > > > > and then he

> > > > > > can tell us what course of action to take next.

> > > > > > Thank you so much again!

> > > > >

> > > > >

[Guest guest]

,

Just to clarify, and Shelly I don't want to contradict you, but I just

want to make sure no one misunderstands what Shriner's will and won't

pay for - IF the St. Louis Shriner's is the closest Shrine and/or is

the closest Shrine with a Ponseti qualified physician, then they will

take care of, or at least be able to help with transportation (either

via the Shriner's van or reimbursement) and lodging.

, if you would decide to come to St. Louis, or even want to talk

to someone here to consider it a little more indepth, you can start by

contacting Dr. Dobbs' nurse, a, ext. 1273.

HTH,

> > > > > >

> > > > > > I just wanted to update everyone that I did hear back

from Dr.

> > > > > Ponseti this

> > > > > > morning. He has requested that I send him photos of

Dino's feet

> > > > > and then he

> > > > > > can tell us what course of action to take next.

> > > > > > Thank you so much again!

> > > > >

> > > > >