My son Zachary was born with PFFD. He has just under an inch difference with his right leg. I am seeing an orthopedic doctor close to where I live but an concerned that he has not seen enough of this to really help him. I have contact Dr. Paley but now he is moving to Florida and well that is quite far for me. Does anyone know of any doctors in the Jersey area that might specialize in this? I will go to Chop. They did a wonderful job on my daughter's capular hymangeoma. Also should I be concerned that he is almost 9 months old and not crawling?
Comments
crawling
Both of my daughters (one with and one without pffd) didn't crawl until they were each about 12 months old. When your son is ready, he will crawl.
Beth
crawling
my son shane did not really crawl till he was after 9 months he hopped around on his but to get around ( we called him tigger )every kid is different also when he did start to crawl he draged his left pffd leg really scared me and he did not start walking till the end of 13 months shane is now 17 months and is walking good!!!! I read somewhere their was a Dr in NY
Contact:
Dr. Robert Rozbruch, MD
Hospital for Special Surgery
New York, NY 10021 USA
Phone: 212-606-1415
Email: srrozbruch@limblengthening.com
I don't know anything about him but ran acrosses him in my googleing
hope this helps
Crawling (developmental info)
I am a 36 year old with PFFD and I never crawled because of the leg length difference being too great. (One knee touches the floor and the other is in the air. Then short knee on the ground and it is hard to pull the other leg through.)...As a child I rolled over and over and scooted on my behind to get to things.
However, at some point I started putting a basketball under my chest and rolling forward on it. Then I would kick it back forward with my short leg and roll again. Essentially the ball "leveled" me by keeping my short leg up at a height my good leg could use. Strange, I know, but I used this after my amputation until I finally got a wheelchair around 5th grade.
As someone who works with children, the only developmental component of crawling is getting kids to use their hands at midline (bring their hands together in front of them for coordinated tasks...cutting with scissors, coloring, playing with play dough). You can work on these skills without crawling by encouraging your child to reach across themselves to pick up objects and work on playing with things centered in front of them. You can also roll them forward and back on a ball so they have to extend their hands to catch themselves as it rolls forward.
Crawling
My son was also born with class D PFFD of the left leg. There is about a seven inch difference between his two legs and his left knee is about up to his waste. He is an amazing child that discovered how to crawl, pull himself up and anything else he can figure out when he was around nine months. Don't worry...the time will come soon enough. He is now 14 months old and has figured out how to walk his push toys around the house with his new prostetic!! He may do it all in a different way...but it is his way...the cute way:)
Zachary
For what ever it is worth, Dr. Richard Davidson at CHOP did my sons fixator surgery. Dr. Davidson was closer to me than Dr. Paley
Dr. Davidson does the Limb Deformity Course that Dr. Paley holds every year. PS they are very good friends as well.
Regards
Sarah
Sarah Ziegler
The MHE Research Foundation Vice President & National Director of Research
Executive Director, The MHE National Research Registry & Coordinator of Clinical Information
Liaison Officer, University of Antwerp, Department of Genetics, Belgium
Liaison Officer, Rizzoli Orthopaedic Institute, Genetics Unit, Bologna Italy
Website: www.MHEResearchFoundation.org
Email: sarahziegler@MHEResearchFoundation.org
Dr. Shawn Standard of RIAO
Hello,
I have a son, Jj, born with PFFD. He is seen at Sinai Hospital in Baltimore where Dr. Paley worked by Dr. Standard. Dr. Standard is phenomenol. My son is doing great and we have had many surgeries with Dr. Standard. You should definitely check him out.
When JJ was born, his leg length difference was 5.5 inches. We have done hip, kneee and one lengthening and in the end we were down to 2.75 inches difference. I know Dr. Standard can help your son. He is at the RIAO. Good luck.
I too have a son born with
I too have a son born with PFFD (he is only 6 weeks old) we have just contacted Dr. Standard and are waiting to see how soon he wants to see my son. We have a 3 inch difference in his legs at the moment. We know he does have a very small femur head and a small socket...so we are hoping this is enough for the leg lengthening process. How soon did you see Dr. Standard and when did your son have his first surgery? What class is your son? I think mine is Class C. I am trying to stay positive and be patient but the not knowing is so hard. Any insight would be helpful.
Thanks!