Hi, my name is Natalie and my daughter Raegyn is 4 months old and has PFFD of her right femor. We're just getting started on our journey and she already had one fracture of the femor. I really don't know what to expect and our doctor is kinda of a fast talker and is telling us that theres nothing to do right now, but as a mother I'm sure that most understand that when there's something wrong with your child your natural reaction is to worry. I would like to get in touch with someone to talk about the what-if's, the what next, and the how comes. If there's someone that can help me understand and maybe suguest a doctor please get in contact with me either by email allyours_04@hotmail.com or by face book Natalie McCall of Mobile Alabama.Thank you.
Comments
I have PFFD and have been
I have PFFD and have been lengthening for awhile now. They usually won't do anything on a child that young. What dr are yall using and where are you from?
Raegyn
The doctor has stated that they would usually start when the child is about 3 years, I would just like to be able to ask more questions. It's almost as though he doesn't want me to ask anything until then. I'm from Mobile, AL and our doctor is Dr. Nimit.
I posted back to you last
I posted back to you last week but it never went through!! I am from Birmingham, so not far at all!!! I am not familiar with that doctor... But I see Paley in West Palm, and there are a few doctor's here who do lengthening, if your doctor won't talk to you, I would atleast just see someone else. It doesn't mean you have to use that doctor, but just a 2nd opinion. I would love to talk to you more, I can try and answer some questions for you... Just send me a message and I will give you my cell. I know my doctor starts lengthening as early as 2 now and I can tell you from experience, the earilier the better!!! If its just the femur, Paley has been doing some new proceedures that I think are for that. Anyways, sorry the message didn't go through before!! Yall have a great week and I really would love to talk.
Raegyns case
Hi, Thanks Natalie for your post, My name is Simon from Nairobi Kenya and my 1yr 4 months daughter has PFFD, I had lots of difficulty trying to get information as well but finally I got to know and accept that the earliest lenghtening can start is from about 2yrs. I do think that Dr Paley is very experienced in this field and I am in the process of securing an appointment for mid 2011.
I would advice you not to worry and wait for your daughter to grow maybe upto about one year then you can follow up on the issue, unless it's affecting her in other areas of development.
regards
simon
We got a lot of the
We got a lot of the nonconclusive answers too. I wish i could say its gotten better but it hasn't. We live in st louis and go to the shriners hospital here. My daughter is 13months old. We have seen several people in addition to our shiners doctors and with my daughters PFFD(which is pretty severe) we haave been told that she will no be a candidate for lenghtening. She also has a underformed hip and they are wanting to wait to see how it develops before we can have that corrected. The main progress we have made has been with her brace. Its function is like a stilt for her and she's slowly but surely learnign how to walk with it. I know when my daughter was 1st born i had no idea what to expect...and i can tell you that other than walking she is just like any other child. She has adapted so well and has her own unique way of doing thing. She truely amazes me. Of course I still have my worries but I've had to just push past them. I spent almost the 1st year of her life dwelling on the things she wasn't gonna be able to do...now i realize that if she wants to do them, she can and will. I hope this can give you some help. If you have any questions. email me at Chezzasmom@yahoo.com
Hello
Hello,
I'm a 30 year old male with PFFD on the Left side and like other here my parents were told i would never walk or even do much of anything. I do walk with a prostetic device and have had chances to go through with surgery. However, I didn't want that option. I have played sports all of my life, and enjoyed every part of it. I never really listened to the doctors though, but I can suggest the Shriners they helped out alot with the cost of my device when i was growing and their doctors are pretty good as well. I do not know anything about your daughters case but i would suggest to wait and see what happens and not jump directly to the surgery. The doctors at Shriners always pushed for it but it was only a cosmetic issue. They could not give me a medical reason to do it. I have had problems growing up and pain is hard at times. However, I was raised like anyother child and I could do anything that anyother child could do, I just had to modify how I did it. Please feel free to contact me here if you have any other questions. I wish your daughter and your family the best of luck in the future