Congenital short femur/PFFD

I wish there was a quick answer to this debate, but as you read the articles there are various reasons for choosing each option. Most of the reasons are based upon what condition the hip, thigh bone, and knee are in, and if you are missing any other bones in the affected leg. Could you update us with any information you might have about your daughters discrepency, future discrepency or any other issues that your current doctors have pointed out?? If you could share those details that would be most helpful. In our case we ended up choosing lengthening for our daughter McKenna, but we did consult with many different people, doctors, and did alot of research before we made our choice. We would love to help, so if you would like to chat you can email us at ChuckBerg@msn.com, or call us collect at 763-494-8823 anytime. This is the busier time of year as far as sports, school vacations and the like, so if we aren't home just leave a message and let us know what is the best time to call you back. We look forward to hearing from you soon!!

Sincerely,

Chuck, Karla, Dylan & McKenna

Hi, I have an 11 year old boy with short left leg- cat. A/B. He was misdiagnosed at birth and was in Bryants traction for dislocated hip. It took 2 weeks before proper diagnosis of PFFD. We struggled finding doctors and a good orthotics supplier for shoe lift. At about 3 years, AJ was accepted at Shriners in Philadelphia- we live in Virginia Beach and are glad to travel the 6 hours for all of AJ's appointments. The Drs and staff are all amazing. Plus you don't feel so alone. There are lots of other kids with the freaky looking external fixators sticking out of legs and they are busily playing video games, air hockey, wheel chair racing, etc. AJ was projected to have around 8-10 inches discrepincy. His hip needed to be stabilized when 4 years to prepare for the future lengthenings. Then at 5 years he gained about 2 inches over one years time (start to finish)and another 3 inches at 8 years old. He attended public school the entire time and did quite well during the year ordeal. Major problem was with the pin site infections. he was on Amoxycillan the entire time for both lengthenings. We have our annual appt this summer with Shriners and we will probably discuss his 3rd lengthening for the upcoming year. My son is happy with the results of the lengthenings, even though they make your life stressful for about 1 year. He has always worn a shoe lift of around 1.5 inches to help him compensate but he gets around fine on his tip toes also. I think the Shriners is fantastic! They will give you plenty of good advice for you to make the right decision for your family. Best of Luck!
Vikki