PFFD VSG2

My son is almost 3 and is due to have super hip/knee surgery in June. I am really struggling with what to tell him about his surgery. I don't want to scare him with too much information, but I also don't want to risk him waking up from surgery in the spica cast wondering what happened to him ( I know that he is going to freak out about the cast ). I know that a lot of you have been through this, or will be at some point, and I am hoping that you can share with me ANYTHING that might help make it easier.

Hi. We live in Fairbanks, and my beautiful 6 month old Emmaly has unilateral PFFD affecting her right femur. We are planning to move to the Olympic Peninsula of Washington this summer (we have family there), and I was wondering if anyone here lives in that area and/or knows of any good doctors, facilities, support groups, anything in the Seattle area.
Thanks!
-Rachael

When I was 5 months pregnant, we went in for the standard ultrasound to check for facial deformities, presence of organs, and measuring of the femur to check the actual age of our baby. At that appointment, we found out we were having a girl, and the technicians said everything looked fine. At my next appointment with my OB doctor, he told me that it looked as if her right femur was a little shorter than the left one or maybe bent. He ordered another ultrasound, and after that, he told us we could go down to Anchorage to have the closest specialists take a look with better equipment.

Dear Parents,

I remember visiting the site 2 1/2 years ago with so many questions in my mind as to what life our daughter would have considering that she has pffd in her right leg........ The personal stories of so many parents gave me hope that her life would indeed be beautiful if we give her love and let her live freely.

I was wondering if anyone has ever purchased any kind of adaptive toys for their children. I am looking to get my son, 2 yrs old, a tricycle that he can actually ride. I have done some research on "hand pedal" bikes and found that they are REALLY expensive. I was hoping that maybe someone knows someone that might be looking to sell one that their child has grown out of. Currently my son does ok with his bike, using his "long leg" to scoot the bike forward...but he wants the bike to go like his sisters does. If anyone has any info. or advise it would be appreciated. Thanks, Jen W.

Hi,

I am Dr. Veklich. Ukraine, Kiev.
I want to say some words about PFFD treatment. From many information sources in Internet I found out that usual practice of PFFD treatment is amputation. Because of Ilizarov technique I want to say no to amputation. It gives to patients assured success of the treatment.
For adults it is normally to lengthen short leg 6-7 cm more and for children the technique help to lengthen short leg up to 20-30 cm with a few stages.
It is better to make legs the same than to use artificial limb. Also the is no need to use compensating footwear any more.

Hi My daughter is 21 has PFFD (Left leg) She delivered a beautiful boy on Feb 27. Just to let everyone know, everything went perfect. She went thru 38 hrs of labor, but she handled everything so well. Other than the loooooong labor, the delivery was natural and my grandson was perfect. He is growing and growing. I forgot how fast they grow. Thanks to the people that wrote to me with encouragement.

MOMMALOU

My daughter, Olivia (she turns 4 in June), has her first lengthening surgery scheduled for May 9th. Her surgery will be performed by Dr. Davidson at Children’s Hospital of Philadelphia (CHOP).

I am in really desperate need of finding someone who has a daughter with unilateral PFFD that has already been through potty training. If anyone can give me any advice I would really appreciate it. Hope everyone is doing well.

HEY EVERYONE.... I'M AN ARTIST & MY WEBSITE HAS SOME DRAWINGS HAVING TO DO WITH LIMB DEFICIENCY AND PFFD... THE DRAWINGS ON THE SITE RIGHT NOW ARE KIND OF DARK, BUT I HAVE SOME 'HAPPIER' STUFF THAT I'LL BE POSTING ON THERE SOON. WOULD LOVE FEEDBACK.

JENNIFER