My son isaiah was born on April 14th. He was 5 weeks early but he is doing great. He was born with unilateral pffd. He is completely absent his left femur, nor does he have a knee. I don't believe that lengthing in going to be an option. He is going for his evaluation at Shrinners in Chicago on July 13th. My hope is for Van Ness rotation and hip reconstruction. Then amputate the toes making the ankle a knee. Then Isaiah will be able to wear a prothsetic from knee down. I am open to any suggestions, ideas, feedback, ect. Thank you for anything you might have to say.
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Doctor for PFFD
I just posted this comment for another user and thought it might help....I copied it from that post as I am late for a meeting, but hope this helps!!!
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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
Options
We have a 3 year old son who is unilateral PFFD (no femur as well). We looked at both of the options facing you. I would love to share our story with you. Please feel free to e-mail me at bluegrasstrout@insightbb.com. I don't check this sight that regularly and wouldn't want to miss any questions you might have for me.
Blessings,
Ceci Hume