My 21 month old granddaughter was recently diagnosed with PFFD. The orthopedic indicated that she will have to have leg lengthening or shortening by the age of 8-12 for a 7 cm discrepency . Everything that I've read indicates that surgery is being performed much earlier than this if lengthening is the chosen procedure. Being totally unfamiliar with this disorder we are not sure where to start to seek the best medical treatment. Can anyone tell me who/where is considered to be the best in this field? Thanks for your help.
Emily had her surgery back in September of last year. It took about three hours and everything went great. She was in a cast until October. She was fitted for her first leg at the beginning of November and recieved it on November 31st. She goes to physical therapy every week and are awaiting the arrival of her send prosthesis. I will try to keep everyone updated and if anyone needs to talk just contact me.
My name is Emily Guerra. I live in the Atlanta, GA area with my husband, Reinaldo and son Julian. Julian is now 13 months and is growing faster than a weed and finally walking around some. He will be walking on his own soon. He is our only child for the moment and we are thrilled that he is here with us.
My son Julian is 13 months and was diagnosed to have Bilateral PFFD and Fibula Hemomila in both legs. He also had a club foot which was corrected by surgery in this past October.
This month we were told that Julian can have regular shoes and that a brace will be made for his feet to fit both sneakers and sandals. We are excited as can be since he is moving from these awful AFO's that went to his knees to braces that fit inside actual shoes. Our Physical Therapist and Orthotic will be adding a lift to his right shoe since it is about 2.5 inches shorter than the left.
ME AND MY WIFE ARE LOOKING FOR A NEW PLACE TO HAVE LIFTS ADDED ONTO MY DAUGHTERS SHOE IN LANCASTER PA OR NEAR LANCASTER SHE HAS ABOUT A 4 1/2 DIFFERANCE AND WE NEED TO FIND A GOOD RELYABLE PERSON TO ASSIT US IN OUR SEARCH. PLEASE CONTACT US
Havent updated in a while on my son Romie, he is doing great, He's three and a half now and is the sunshine of my life. His right femur is about 3 and a half inches shorter than his left which is a larger difference than before, but with his condition this is to be expected. Romie is in pre school now and has been learning so much, his teachers tell me that he is a joy to have in the class, he loves to dance and sing and finger paint with his friends and his favorite teacher Ms Emily.
My son who is 4 and 1/2 months old was born with missing fibula bone.we are still in the boat of deciding what is good for him...all the doc's we have seen so far has said amputation is better because the difference is too huge between two legs and his ankle bones are absent.
I am also visiting Dr hezenberg next month to discuss about his opinion on limb lengthning.
meanwhile on my research regarding amputation,I came to know about the Phantom pain,but do the kids who get the legs amputated at age of 12 = 16 months also have that pain...
Hi, My son has an important appointment at Shrieners next month. The prosthetisis said at our last appointment 4 months ago that this next appointment would be used to decide on treatment and schedule surgery. Needless to say I am so nervous, my stomach turns every time I think about April 18th!
My daughter has a 4 cm length discreptency in her right leg. I have some child's dress shoes size 9 USA to give to a child with the same leg length difference. These shoes have a added lift of a little over 1.5 inches. My daughter has bilateral PFFD, but the right leg is shorter then the left. These shoes were barely worn, look new. They are great for church and dressing her up. I will ship for free. I just want them to go where they are needed. She wore these when she was 4 and since then has had multiple shoes made.
Hi my name is anna mccallum-reid i'm from auckland, new zealand and i was born with pffd in the right leg i don't auctually know what catogory i fall in to though. i was also born with conjoined fingers on my left hand which only has 3 fingers including the thumb, and had open heart surgury at 10 months old i don't auctually know if its related to the pffd or not.
