PFFD VSG2

Hi all
I would appreciate any feedback on the following:

My daughter (almost 4 yrs) had her second super - hip op in Feb this year. Her spica has been off for 2 months, but still does not want to walk more than is absolutely necessary, and then only with assistance of her walker. (she wears a 10cm lift) She complains of pain, especially in her shins/calves and where the pin is in her hip?? Our doctors tell us to be patient - but with the previous super hip op she was only able to walk properly after they removed the bent pin in her hip.

Just a quick note to let you know that there will be an online chat this Thursday.
What: Dr. Standard, Head of Pediatric Orthopedics at the International Center for Limb Lengthening is hosting our second chat. For those who missed the last one, this is a real time chat where you can ask Dr. Standard questions about treatment of limb length discrepancies in children.
Date : Thursday June 25
Time: 9 PM EDT (Note that this is the time zone for Baltimore, MD or Washington, DC)
Place: http://www.chatzy.com/600868137410
Temporary password: lldkidstest

Does anyone have any advice, how to choose a doctor, specific considerations, etc. for amputating an affected PFFD leg? I'd also be interested in any recommendations for doctors to perform the surgery.

Thanks
Tim

To all parents or person's dealing with PFFD or bone defect, I suggest contacting Dr. Paley.
We had our visit yesterday and it was wonderful. Justin's 1st surgery is on as scheduled but we learned more from that visit than all the other Dr.s and Hospitals we have gone to.

This is his email address
dpaley@lengthening.us

julian is now 1 years old, we went to see dr.davidson @ chop in philly. what a long visit. i just get so frustrated with everything. now they gave me a script for him to try a shoe lift with a wedge or pipe in foot im not sure what that means. his leg is now about 4 inches shorter than the left. he wants to walk so bad but cant. im getting so frustrated. 1st the drive there is 2 hours, we wait for about 1 hr ,1 1/2 hr for the dr to be in the room maybe 10 minutes and say we'll see u back in 6 months & do xrays. he wants to see if julians hip will form any more.

I was born with PFFD in 1986. My parents discovered the Shriners Hospital in South Carolina when I was 6 years old. Until the age of 18 that had been been my place of treatment. We had been encouraged to go with amputation. My parents felt even at the age of 6 it was my decision. Of course, at age 6, 7, 8 (every time it was brought up by any doctor) I opted out. The decision to keep my leg wasn't even a question and at age 22 I am still happy with my decision not to go with amputation. I think it was the best decision for me personally, although I know that it may not be for others.

Hi everyone,

My son Zach has pffd on his right leg. We met with Dr. Davidson on 5/6 and we now have a timeline for his first surgery. Zach needs an inch orthodic list (which i am attempting to accomplish) and he will have two surgeries. The first surgery is to be when he is between 4 -5 years old. Its definately different. i see my little man walking on one set of tippy toes but boy does he move. i really want to get him sandals for the summer but really dont know if i can being he needs a lift. I'm going to try. can anyone share as to what i can expect now that he is moving?

We have a wonderful, active 17 year old boy with pffd, no prior surgeries. Whom has a consultation with Dr. Paley on June 8, 2009.
And first surgery scheduled for August 6, 2009 for Super hip and knee.
Any advise or information would be greatly appreciated.
This will be done at St. Mary's in West Palm Beach.