I know we talked about this subject this past summer, but nothing really came of it. I would like to bring the subject up again ad see if we could possibly get somehting planned?
I need help. I have alot of pain in my lower back and and left leg which is amputeed. I feel like I'm not able to walk on it. I feel very weak. I'm not even able to sleep sometimes. I've been seeing doctors in the south florida area and no one can help, they just suggust me seeing doctor after doctor. So far this year I've seen 6 different doctor's and the only thing I got out of it was a prescription for a pad to put on my back. It does not work. If anybody knows any kind of pain killer, please let me know!!! Thanks
Yesenia
Hi my name is Yesenia, I am on here because I want to see what people have accomplied or done to make them walk better. I been learning lightly alot these days about my condition, never really wondered or cared sadly. I just learned not to learn ago that I have PFFD, when I was about 1 1/2 year old I was amputeed on my left foot so that they can make a stump out of it. I wear a Prosthesis. I've been seeing alot of doctors trying to see if there is any chance that either a total hip or artificial hip could be done. I tell you it is tough even in how the economy is right now.
Dr. Paley has also asked me to let everyone know that he will not be going to Disney Children’s Hospital after all. He is now looking at other hospitals and he will know where he is going to be relocating in few weeks.
Hello all we have had no hope with ortho Drs or shriners
first they said it was nothing maybe a shoe lift and thats it then he is going to be feet shorter on left side and amputation only option then shriners said it will be 5/ 6 inchs shorter on left side and amputation was the way to go but then they sent report to Ortho and primary Dr that says it is estamited at 3 inches shorter so fed up with stuff going crazy!!!!!
Further to my post a few days ago, Emma SMS me earlier today and said 'yes I made it'. So how's that to be standing at the top of Mt Kinabalu, age 13 with PFFD and a prosthetic leg with your school mates! Yes I do know that there are a number of disabled mountain climbers with prosthesis ... but when it is your own child born that very special day not so long ago, and you've really wondered (and worried) about their lives, and the opportunities they will get (or you think they will have to fore-go when they were born), it is still pretty darn neat to hear her say 'yes I made it'.
My son Tema was born with PFFD on the left leg. Prosthesis is only one way at present. Our first and second prosthesises were made in Germany by Dr. Nader and Spoerer.
I have a question for everyone. I was talking with another local parent who has a child with limb differences. Her pediatrician told her that she should have her child's kidneys and heart checked since they form at the same time as limbs. The doctor told her that often times someone who has limb deficiencies will also have problems with their kidneys or heart. (When testing was done, she found out that her daughter was missing a kidney and there was a problem with her daughter's heart valve.) Has anyone else found this to be true?
Mt Kinabalu is the highest mountain in South East Asia and is situated in beautiful Borneo a 2.5 hour flight from Singapore.
Emma, her twin brother Zach and a group of 20+ sports leaders from Tanjong Katong Primary School in Singapore are to set off on Monday to climb the mountain. Emma has one extra bag than the other kids - a spare prosthesis in case her main one breaks.
My nine month old daughter Kaiah was born with unilateral pffd of the left leg. I have gotten more information about her condition by doing research over the internet than I've gotten from the doctors. We are so scared and terrified of the word amputation which is the only option Shriners has given us (although we've gotten two other opinions locally here in Richmond Virginia that lengthening is very possible). Right now the difference in her legs is one and a half inches estimated at full maturity to be six inches. We just want what is best for her to have a healthy life!
