My daughter, Casey, is two months old and has unilateral PFFD, class D. She has a foot, tibia and fibula. We are just beginning her treatment odyssey and would love to hear physician recommendations. So far our "home" orthopedic surgeon is Dr. Fitch at Duke. He has a wonderful pediatric reputation and is VERY well respected at Duke. In addition, we will be going to Shriners Hospital in Greenville, SC next week. We would like to see two other doctors before we begin her treatment path. I don't believe that lengthening is an option for Casey. In addition, I would like to hear comments about the timing of her surgeries. We have been told that if we do a Symes amputation that it should be done at 6 -9 months - before she begins to pull up. That seems early to me, but what do I know?
Thanks for your input!
Comments
Doctor for PFFD
I was struck by how accurate the word "odyssey" is when referring to PFFD. There are so many directions to go, and other than this site there are few resources available to us, but we are so glad you did find the PFFD VSG2!! As you can see there are several families that have had success with just about every option there is for PFFD, and hopefully the users here can help you to find a place to go. We have been taking our daugter McKenna to doctors in Baltimore, Maryland and have had good luck there. They do specialize in lengthening, but they also understand that if that isn't an option they look at what can be done to help the most with mobility. We have seen cases where lengthening wasn't an option, but to help the child have better mobility they have corrected the hip area, knee area, and also straightened the femur so walking was easier and there was a better base for the artificial leg to work with. It never hurts to get another opinion, and we applaud your efforts to learn all you can. The phone number for these doctors is 1-800-221-8425 and you can ask for Dr. Paley or Dr. Hertzenburg and possibly just send them a set of your x-rays for evaluation. They have treated cases up to class D with limb lengthening also, but you really want to decide what is best for your child. There are so many variables involved with PFFD that you really want to get all the info. you can. We were also told in the beginning that some of the bones in an affected PFFD leg have delayed ossification (spelling?) and they don't consolidate fully into bone until around 1 year of age, so we waited to make any decision until after we had xrays done close to that time to make sure we knew what we were dealing with. Until then McKenna still was able to move around and laugh and play, so double check the info. about the Symes amputation at 6 to 9 months. Perhaps you can find others on this site who have done the Symes and chat with them to confirm this. If you would like to chat with us you can give us a call at 763-494-8823 and we will do our best to help. Good luck, and God bless!!
Sincerely,
Chuck, Karla, Dylan & McKenna
More info. about Symes...
I did just type Symes into the search window on this site and several links popped up. This info. should help with your search.
Chuck
Similar PFFD
Hi!
My daughter, Sami, will be 3 this July. She also has Type D PFFD, left leg. She has a foot and tibia & Fibula. Basically, from the knee down she's perfect. Her foot is a little smaller, but we couldn't tell that until recently. We haven't had any sugerys done. She's amazing and keeps up with her two older brothers just fine! She's a normal 3 year old. If you ever want to talk, email me at Libbi123@cox. net.
Good luck...naw, you don't need any. Casey's going to be just fine!!
Libbi
Our daughter is similar - now 4 years old
Our daughter turned 4 recently and is between a class D and C. Llike "Samismom" we also opted for just prothoses - no amputations. If you want to talk you can send me a message and I'll send back our phone # & email address.
Casey's Journey
Our daughter has unilateral PFFD also. She just turned one. We doctor at Shriner's Hospital in Chicago. The Shriner's hospitals are the best. Our daughter is missing one toe, her tibia, and has only a few inches of femur above her knee, no hip joint. We chose not to amputate at this time. She wears a full leg prosthesis, bearing her weight on the prosthesis, her butt bone, and heel. We are hoping to have a rotationplasty procedure done for her when she is 4. Enjoy your sweet little one they grow so fast.
Penaflor