Re: Spoke to Ponseti over the phone!

[Guest guest]

Hi Mia, I am glad that Angel's site helped. She did a great job with

it. I know there are lots of people in the group who have done the

Iowa trip. We would definatly have done it but were fortunate enough

to follow Kia who taught Dr. Mosca about atypical clubfoot. He (Mosca)

worked closly with Dr Ponseti. The finance part... Angel flight will

sometimes fly you there and I've read about the ronald macdonald

house, fifteen per day if you can afford that.

best wishes,

> > > Well I called Dr Ponseti's office myself thinking I would have

> to

> > > leave a message and wait for a call back. Not at all, I told

> the

> > > receptionist my situation and wanted to speak w/ him myself to

> get

> > > more info on Addisyn. She had me hold, and low and behold he

> came

> > > on the line a few minutes later!! Amazing!!

> > > Anyway, he said to can the AFO's immediately, not a surprise.

> > After

> > > giving him Addisyns background he told me that it sounds like

> she

> > > has the most severe case of clubfeet called A-Typical or

Complex

> > > Syndrome. He stated it only happens in 1 in 100 cases of

> clubfeet

> > > and it is called that due to the severity of the creases on the

> > base

> > > of the feet. He himself has just in the last year perfected

the

> > > treatment with these kinds of feet and says it isn't out yet to

> > > other physicians who are using his method. He said to have my

> > > doctor call him and he would explain the extended treatment to

> him,

> > > but he (our doc) may not be comfortable doing it. It involves

> more

> > > casting and a 2nd tenotomy to be performed as well. The

casting

> is

> > > a little more in depth I guess. Anyway, my feeling is I should

> > just

> > > take my daughter out there to see him and have him treat her.

> He

> > > said it would take about 2 wks to do what he needs to do. They

> > have

> > > a Mc house set up there for his patients and their

> > > families to stay at for $15 per day. If I want it done right I

> > > think I better bite the bullet and hop on a plane. Has anyone

> else

> > > had their child diagnosed with this syndrome that we are aware

> of

> > on

> > > the support group. If so please let me know who so I am able

to

> > get

> > > some info from them.

> > >

> > > Thanks

> > > Mia