Photos Uploaded

October 16, 2005

, what you describe happens more often than you might realize - how you

are ushered in to a treatment and not encouraged to seek information /

alternatives. That's hwo it was when my oldest was born. The midwife pushed

me to see a doctor asap, the baby-doctor pushed me to see this certain orthodic

(?) specialist....it just snow balled, everyone was in this big @$$ hurry to get

their hands on his feet and when a momma is still freshly post-partum and faced

with a surprise birth defect, you just find yourself rolling with that snow ball

that you eventually get burried in.

You are very fortunate to have information now. Seven years ago there was

surprisingly little information about cf on the internet, and even less about

Dr. Ponseti. But that aside, I didn't look in to alternatives. That was my

mistake, and my ignorance, and now, my cross to bear. I've had sons treated

by both traditional and Ponseti methods, the difference is black and white and I

promise you won't regret making the change. Your life will become suddenly

simplified! That's one of the main differences I found was how " Simple " the

ponseti method was compared to the traditional method, and yet the results were

so amazing.

When my 2nd son was born two years ago the hospital pediatritian came in twice

pushing me to start casting before we even went home, telling me it'll be months

of casting and probably surgery, etc. I kept trying to tell him about the

Ponseti method but he was not open to hearing it. I finally had to just stand

firm (rude?) and refuse to let him touch Everett's feet. We went home for 2

weeks, then drove to Iowa City.

Hang in there!

s.

Re: Re: Photos Uploaded

Geisha feet...heehee! I took ink prints of Hayden's

feet the other day and they are as wide as they are

long! I had a good chuckle over how cute they were!

Basically what I have been doing is taking the shoes

off as soon as Hayden begins to fuss (and I notice

they are slipping). Then I just massage his feet and

stretch them a little and put the shoes back on when I

feel like it. My husband and I are going to take him

to the ortho place on Monday to ask what more can be

done. Well, HE is - this is my concession to him

agreeing to let Hayden see Dr. Pirani. We kind of

" had it out " last night and I think what a lot of his

resistance boils down to is that he might be

embarrassed and feel he is losing face in the eyes of

Dr. A if we change. Ridiculous. As if she will even

care - she has plenty of clients.

The description of the tendon is interesting - when I

am doing the stretches on Hayden's feet, his left

tendon in particular feels very taut and almost

rope-like or as hard as a bone when I do the

dorsi-flexion.

It would see to me that since Dr. A has been using the

Botox for five years and probably treating clubfoot

for longer than that, that she would know about the

detriments of slipping casts and also about atypical

clubfoot. This is why I want to see Dr. Pirani so

much. I'm going to go and get the referral this week

and then see him on the 25th. Kind of did it

backwards (thanks to )), but there you go.

I think what angers me the most about this situation

is that we were not offered options in the beginning.

We were referred immediately to the Children's

Hospital because it is joined to the Women's Hospital

where Hayden was born. No one said " go home and get

used to the idea and do some research and make a

decision because there is Option A and Option B, etc. "

We were given the choice of casting him at two days

or waiting a week, but the assumption was there that

we were returning to Children's for the treatment at

any rate. I am so mad that I didn't take a moment to

think about it and explore the options, but it was all

such a blur and so overwhelming. When I was told I

had to have another c-section after my other birth, I

researched for two years and guess what? No

c-section.

Thank goodness that it isn't too late and he is still

very little and his feet will get fixed. Ijust want

to start enjoying his infancy and relax a little bit.

--- angelmommy23 wrote:

---------------------------------

,

I am Kai's mother. I can tell you that all my

children have small

feet for their ages as well, but they are kind of

small children LOL

Kai's clubfoot has always been exceptionally shorter

than the other -

by 3/4 " or more - except for two times in his life.

The first was

after Dr Ponseti casted him, and the second is right

now. He just

came out of another set of two casts and his foot is

within 1/2 inch

of his normal foot. So, you see there are small feet,

and then there

are giesha feet ...

Anyway, something that is pretty consistent in

atypical clubfoot is

an extremely short achilles. I know that Dr Alvarez

has had some

great success with Botox, but it seems she has

forgotten to screen

children for suitability. If Hayden's achilles is

anything like

Kai's was, no amount of stretching - even while

paralyzed - is going

to make it normal length. Dr Mosca told us once that

some achilles

tendons kind of gently drop when cut, and some snap.

Kai's was one

that snapped ... and his heel dropped from roughly the

position of

Hayden's to normal in moments. See, the difference in

the photos you

posted and those of Kai's foot is that Kai was

actually standing with

his heel on the floor. But right before the tenotomy

his foot looked

just like Hayden's.

Dr Pirani has all the necessary experience and skill

to help Hayden.

We have even approached him about seeing Kai even tho

we are

American, and he has eagerly agreed if this last

casting doesnt stay.

Slipping in casts in extremely detrimental to the foot

and can do

alot of damage. If the casts are not staying on,

there is a reason,

and it needs to be addressed.

Good luck, Angel

Hi there, I have

> made a folder for Hayden and uploaded some photos.

> As you can see from the 12th casts, his left foot is

> still quite

> sloped at the heel, much more than the right, even

> though the rotation

> appears to be 70 degrees. But when you see his feet

> after just a few

> weeks out of the casts, and supposedly in the shoes,

> you can see the

> left one already wanting to turn back in. Arrgh!

>

> I'm going to collect my thoughts and see if I can

> compose something

> coherent to Dr. Ponseti. I am not sure if the

photos

> I have taken are

> good enough for him to see what's happening, though.

>

October 17, 2005

,

Whatever you do, don't beat yourself up over how Hayden's treatment

was handled in the past. It is unfortunate that while there are

getting to be more and more Ponseti doctors out there, it seems that

the hospitals where these babies are being born are still in the dark

about clubfoot treatment.

I think massaging his feet is a wonderful idea, and I would pay

particular attention to that plantar tendon (the one that runs up the

bottom of the foot, right in the arch area. If you can work that area

with your thumbs I think that would be really helpful. One thing I

would really quiz Dr. Pirani about is if he is really up on the latest

from Dr. Ponseti and his group on atypical. I am almost certain he

will say yes, but I would definitely make it a point to ask him and if

you have feedback from Dr. Ponseti be sure to share it with him.

As Angel said, Dr. Alvarez should have been able to make a better

decision about Hayden's treatment. Although she may not be up on the

latest in treatment of atypical feet, Dr. Ponseti himself is just now

really paving the way (there he goes again) in the treatment of the

atypical foot. And the slipping casts were known to be a problem, but

it is just kind of a developing theory about that possibly being a

" cause " of atypical feet.

Hopefully you will be able to relax a bit now, and give his feet lots

of kisses!

Hi there, I have

> > made a folder for Hayden and uploaded some photos.

> > As you can see from the 12th casts, his left foot is

> > still quite

> > sloped at the heel, much more than the right, even

> > though the rotation

> > appears to be 70 degrees. But when you see his feet

> > after just a few

> > weeks out of the casts, and supposedly in the shoes,

> > you can see the

> > left one already wanting to turn back in. Arrgh!

> >

> > I'm going to collect my thoughts and see if I can

> > compose something

> > coherent to Dr. Ponseti. I am not sure if the

> photos

> > I have taken are

> > good enough for him to see what's happening, though.

> >

October 17, 2005