Hi. I am fairly new here. I joined because of a recommendation of a friend
from another list I am on- the I-CAN list.
My son, Branden, was born with bilateral PFFD- he’s missing 3 toes on each
foot, missing fibulas on both legs, and has no knee joints. The knees were
just viewed last week via arthroscope. He is also LAE and on the right side
there is a dislocation of the radial head. He also has medical issues , but
appears to be at age level congnitively.
What I need is to know if any of you have had a patient that had such a
complex situation and if so what course of treatment did the family, doctors,
clinitians chose for this child? Is there an age where it might be too late
to do treatment? My son is still quite young- 16 months. I have heard of a
procedure where they fuse the tibia and femur together to make one longer
femur and then he would be fitted as a bilateral above knee amputee ( I think
). I am not fearful of amputation if it means that he can ambulate on his
own. His hips are not too bad. One hip is actual in the socket and the other
side the femur is bent and the ball is obviously not in the socket, but all of
the necessary components are there. Is there a way of knowing if the hips are
going to be stable enough to support him? I don’t want to do anything unless
I know without a doubt that he will benefit from it- even if it means he is in
a wheelchair fulltime. I just want to do what is best for my son.
Our prosthetist recently told me that another thing I should be concerned
about is Scoliosis due to his complex bone problems. Is this something that
is a commonly seen in children with complex bone issues such as my son’s? I
am in the process of making appt’s with other orthopedic surgeons around the
USA at this time and plan on getting several opinions before I take any course
of treatment.
Thank you for any advice or help you can give to me on this issue. It is
greatly appreciated.
Cindy and Branden
