Hello, everyone. I am new to this group. My son, Denim has of course PFFD, bilateral Class C/D. He is 22 months old. We live in Oklahoma City and go to the Children's Hospital here and also to the Shriner's Hospital in Shreveport. I was reading where a physiatrist might be of help to us and was wondering if anyone could recommend someone. My son has no hip sockets and no femoral heads so it looks like lengthening is out of the question. He is doing really well crawling on all fours(hands and feet no knees). He also will pull himself up pretty well and he can walk with a little walker that the Shriner's gave us for him to use. I have been told that he will be a "little person" and that's cool. But, I want to make sure that we are not missing something that will make things easier for him when he gets older. I have heard talk that because of the way he stands this might cause some difficulties when he gets into his teen years. Thanks for your input.
Shirlene
Denim's mom
Comments
Greetings!
Hi, Shirlene. I am a 30-year-old woman with bilateral PFFD. Feel free to send me a private message here with any questions that you might have about growing up with bilateral PFFD.
I did have a lengthening done back in 1987 for a three inch difference. However, it was disastrous for me. I think that if the docs knew then what they know now, that I would not have been a candidate for lengthening.
As far as being a little person, I guess I am, although I've never really identified myself as such. I'm about 4 feet 5 inches tall. From other folks with bilateral PFFD that I've met online (I've never met anyone else with this condition in person!), I think I'm a few inches taller than most.
By the way, my family has always told me that I "crawled" exactly as your son does!
Again, feel free to contact me privately with any questions you may have.
Linda
Might have information
My daughter is receiving treatment at a hospital that may be of interest to you. We were referred by another family after being told that amputation was the only option for my daughter..........and amputation was not the only option. She was never supposed to crawl, walk, etc. but does all of those things and more. I don't want to "bash" the facilities that gave their opinions before finding this hospital so if you are interested in other options, please send me a message and I would be pleased to pass along the info.
Hello
Sure I would love to have the information you have. I would love to know more about your daughter as well. Sometimes we feel like we are one of a kind. It is nice to know we are not alone.
Thanks,
Shirlene
Would love any information you can share
Hi Tyjanae,
My daughter Ginny is four and has a femur that is in two pieces and has no femoral head as well as we have been told that her right side is also affected. We live in Mississippi and use a doctor in Memphis. We went to see another doctor in June because our doctor has never given us a plan of care he told us to just let her grow and she what she does. Upon our visit in June for another opinon this doctor tells me that the plan of care is to amputate. I can not begin knowing how to tell a four your old that runs ,jumps and walks with never a complaint that we are going to take her legoff.So any information you can share would be truly appreciated.
Gintup3
physiatrist
Physiatrist in my opinion are probably the best kept secret in medicine today. I have only met one bad one who had changed from being a rehab doctor to a physiatrist because there was no physiatrist in our area. His old training really clouded his judgement.
There is a Dr. Terry Winkler in Springfeld, Missouri who is tremendous, but I think you could probably find one closer to you as long as they originally trained in the field of physiatrist.
Hello, I just wanted to let
Hello, I just wanted to let you know about my little girl Maya. She is 5 now and is one of twins. She too is missing both of her hip sockets and has no femur in either of her legs. She crawled, it sounds like, exactly how your son does. She started walking at 17 months and has been non stop ever since. She is currently in gymnastics, dance and even soccer. The Shriner's in Houston told me that there really isn't anything they could or should do. Since she is so bilateral and so functional, anything they did might make things worse. They just tell me to treat her like any 5 year old kid. In Maya's case I think that she is doing wonderfully without any medical intervention.
Feel free to email me any time.
--Natalie