Clubfeet and distal arthrogryposis

[Guest guest]

Hi,

My name is and this is my first visit to this website

support group. My son was born on May 6,2006 with bilateral

clubfeet and both his hands are affected as well. His official

diagnosis is distal arthrogryposis. I found out about the clubfeet at

my 20 week u/s and was able to line up a doctor to do the Ponseti

method. I was born with this condition as well and had surgery to

correct the cf. I have lots of pain and stiffness and so I want to

avoid my son having the same. We met with the doc prenatally and he

was very pro the ponseti method(he is on the list of docs on Dr.

Ponseti's website and I had e-mailed Dr. Ponseti during my pregnancy

and this was the doc he recommended. It usually takes double the

casts to correct than congenital cf. What concerned me was that when

I brought to see him for his first set of casts(day 6 of life)

he seemed to be very pessimistic as to whether or not this would work

because of the arthrogryposis. I was upset by his attitude but my

husband said he was just being honest with us. However I went to see

another doc recently for my sons hands who also does the ponseti

casting and he said he has seen it work even with this condition.

Today was cast #9 and he bsically doesn't feel he is getting the full

correction and that surgery would probably be needed. I was just

wondering if anyone on this site has a child who's cf were from

arthrogryposis and if the ponseti method worked for them. I'm also

planning on calling Dr. Ponseti. Thanks