Quick reminder that Dr. Standard and Dr. Herzenberg will be available on line to answer questions about PFFD (CFD) this Thursday at 8 PM Eastern (US) time.
This is a good way to get some preliminary information from the doctors and equally important, meet other families. If you have digital x-rays, the doctors can also take a look at them.
For more info, contact icll (at) lifebridgehealth.org . Please be sure to include a little background info so that we know you are "real". (Unfortunately, we get from people with less than stellar intentions).
My 11 month old was just diagnosed with bilateral PFFD today. I was doing some research and was wondering how do I find out what type she has? Also do people with PFFD have a big delay when it comes to walking? My little girl doesnt use her legs at all at the moment. Any info or advice would be awesome. Thanks!
I decided to write down a question message because of my dilemma a treatment of PFFD.
I live in United Kingdom and have little girl. She was born in October 2010 with PFFD Paley type 3b.
English doctors told us about amputation of the food when she'll be one and hip joint surgery in the 4-5 of age.
We've seen Dr Dror Paley in Germany and he said it is not good idea to lengthening the leg and is not good idea to amputate of the food. He said, that the best option will be Paley-Brown Rotationplasty.
Hello! Before my son wore his prosthetic leg, he had a shoe lift on the right and wore an ankle brace on the left for support. I also hemmed his pants and pajamas.
Now that he is older, I'd love for these items to go to someone who needs it. If you can't afford to get a shoe lift or ankle brace, here's what I have:
Toddler size 3W Champion shoes with 2 inch lift on right shoe
Toddler size 4.5M Answer 2 orthotic shoes with 4 inch lift on right shoe
Toddler size 7M Answer 2 orthotic shoes (for use with an ankle brace)
Toddler size left knee brace
Quick reminder - the next online chat with Drs Standard and (usually) Herzenberg is Thursday 9/29. This is a great way to ask questions either of the doctors or other families.
It's at 8 PM Eastern (US) time. Email icll (at) lifebridgehealth.org for more information. (Please be sure to include some basic info such as age, previous treatments etc, so that we can tell which password requests are legitimate).
My daughter fractured what she has of her femur bone in her right leg, although to me it looks broke in half. We are going to shriner's on Tuesday to let them look at it. Has anyone ever had this type of problem
I knew i had the Van Ness procedure done when i was about two years of age. Although i never knew what my condition was called all i knew was i did not have my left thigh . Still don't know exactly what type i have though(my femur is about an inch or two long now and i am 6ft 3 with just under 45 degree range of motion in my knee/hip).
i am glad i had the rotationplasty because it has improved my quality of life i have learned to ride a bike skateboard and have more recently taken up thai boxing and jujitsu.
The other day I met someone with a similar PFFD and I just wanted to share with everyone on here how great it was. Although I'm only 20 and the lady I met with is early 60's it was great to be able to share stories of growing up with the condition and how different and similar it was 60 years ago and now. We had a lot of laughs swapping stories and comparing growing up (which wasn't very different at all). I never knew that speaking to someone with the same condition would be so helpful.
I'm having issues with getting a new prosthesis and I keep getting told the same thing- amputation. I just wanted to know if there are any adults who had their " LITTLE LEG" amputated in order to get a better fitting prosthesis and if it was worth it. I'm worried that I would have less mobility and that I wouldn;t walk very well as the hip would need to be stabilized.
Just a quick not to say that the next regularly scheduled PFFD / CFD / Congenital Limb Differences chat is Thursday August 11 at 8 PM EDT. A great opportunity to chat in real time with several very experienced pediatric limb lengthening surgeons. (We do all sorts of treatments, so no one is going to "push" lengthening, but it's a good way to get some basic information).
