Nour, my daughter is now 4 years and two months old. she is walking fine but a very visible limb. the doctors say since she is walking to leave her alone right now and wait for another six months and then get an x-ray and see how things go from there. I wish I knew some one here in Ga that could share their story with me. some times i feel alone because I do not personally know anyone that has a kid like me or has gone through this.
Hi - We went to see Dr. Paley in October for our son. He is almost 6 months old now and has class D pffd affecting his right leg. Dr. Paley said that lengthening is not an option for him. He said that our best option would be a brown rotationplasty. I was just wondering if anyone has heard of this or has had the surgery. I am trying to get some information on what when well with the surgery as well as what could go wrong. He said that the earliest he would do the surgery would be at age 2, so luckily we have time to do a lot of research.
Hi
I just join and read about Dr Paley leaving Sanai Hospital.My daughter is PFFD patient and has been treated by Paley for the past 8 years.He will be still in the Northeast area.You can ignore the letter you receive from the hospital.If you or a relative is being seen by Paley.you can contact him at dpaley@lengthning .us for more information.I already gave him personally my private contact info and I will follow him wherever he will be.
Fritz.
I just received a letter from Sinai Hospital in Baltimore, MD. The letter states that as of June 30, 2009, Dr. Dror Paley will be leaving that hospital. All other surgeons are staying at the hospital. The letter does not state where Dr. Paley will practice after June 30, 2009. But it says that if anyone has questions or concerns, they should contact one of the physicians who will remain at Sinai or Justina Starobin, Director of the Rubin Institute. You can also email them at ICLL@lifebridgehealth.org.
Hi! I'm wondering if any adults with PFFD/BPFFD have tried accupuncture to help with chronic pain. I'm actually home from work today because of some pretty severe pain issues, and I'm trying to research alternatives to meds. Has anyone tried it? If so, would you recommend it?
Ian Gabriel , our little angel and special child was born in September 19, 1999 , in a Clinic in the Philippines. Third child of a mother with late forty's, so how it turned his delivery to be in Cessarian Section. Never thought that were given a Special Child with Proximal Focal Femoral Dysplasia, Unilateral and without Stable Hip. We don't have any idea about this sickness. We didn't even know that this can have a solution someday. Ian can walk as a normal individual. Only at age seven years old he wore a prosthetic.
Noah, our son, is just over 2 months old and has been diagnosed with PFFD and fibular hemimelia. My husband and I were terrified to find out something was wrong with him the day he was born. After the appointment with the orthopedic, David and I are optimistic that Noah will be able to live a "normal" life. We have joined the site in hopes to connect with other families dealing with PFFD.
Encouragement, support, and love are what a child need when he feels different with other children.
1. WHAT MAKES ME DIFFERENT?
You are physically different because, one part of your body did not developed. Even you are born abnormal, God knows you can be strong and special that you will be a good example to people with different life too.
Can't believe I found this site. It's been so long now. My daughter was born w/ PFFD 23 years ago. She's had several lengthenings as well hip reconstruction twice to the right hip and also knee reconstruction, she's had an ACL added, yada, yada, yada.
She was one of Dupont's, Dr. Bowen, (whom we totally adore!) most difficult lengthening patients b/c her discrepancy was considered very big at that time. I believe it probably still is. She was lengthened 24 cm, if I remember correctly.
