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My 7 month old son has pffd

We found out around 2 months old that one of my twin sons has pffd in his left leg. I have been doing a lot of research on this subject as we left the orthepaedic surgeon in our area with a lot of unanswered questions. We had a lot of questions answered through Dr Paleys website and we plan on seeing him in the future. We are planning on lengthening surgery when he is around 5 years old. We are trying to stay positive about his pffd but of course its a rare surgery and we are still concerned about him having to get the surgery as well. He is going to get a shoe lift soon as he will be learning to walk soon. I would appreciate anyone with advice who has been through this personally or as a parent, thanks


Forget the local orthopedic surgeon and go see Dr. Paley in West Palm Beach as soon as possible. You will leave his clinic with a clear understanding of your son's condition and you will have a long term plan for treatment (which will give you some of the peace of mind that you need right now).

Thanks for the Advice! We definatly plan on going to see Dr Paley, We just are trying to figure out when we should go see him. We know he won't do anything for at least 2 or 3 years . Do you have a child with pffd as well?

Yes, my 11 year old daughter just finished the lengthening phase and is home now for consolidation (fixator is still in place for a few more months). Paley might not lengthen your son's leg for a while, but there may be other procedures that need to be done first. I understand that everyone's situation is unique, but we would have avoided a lot of anxiety and uncertainty if we had visited Dr. Paley sooner than later. Good luck.

Thank you for the advice! Its nice to hear from someone going through the same thing. Isaac is 7 months old and has about an inch and a half difference between legs. How old was your daughter when she had her first surgery? and do you mind telling me if you used shoe lifts to help her learn to walk? Isaac will be walking soon and we are getting him shoe lifts but we dont know whether to encourage him to always walk with them or to learn to walk with out them as well. Thanks

Emma was about 2 years old when she had her first surgery, which was a hip reconstruction procedure. She had a prosthetic extension when she learned to walk. It was basically an artificial leg and foot into which she placed her real foot. I guess it was helpful in terms of stability when she was standing still; however, she learned to walk without it just as quickly. We would put the prosthetic on her in the morning, but we let her remove it whenever she wanted to do so. For example, she would take it off so she could climb on the jungle jim at the playground. Either way, I'm sure Isaac will have no problem learning to walk...especially with a twin to keep up with!