If you are new to PFFD - I recommend starting with the PFFD book

PFFD online chat on Thursday January 12

Quick reminder since most of the details are in previous posts. The next chat on PFFD / CFD and Fibular Hemimelia is this coming Thursday. Dr. Standard from the International Center for Limb Lengthening will be hosting this week. This is a great opportunity to ask a very experienced limb lengthening surgeon questions, and even have him review x-rays if you would like.

For more info please contact icll (at) lifebridgehealth.org and give us enough background info that we know this is a 'legitimate' congenital limb differences request (vs the "I just want to be taller" requests we also get).

Daughter born 10/10/11 with Unilateral PFFD

My daughter was born with unilateral PFFD. It wasn't caught on any ultrasounds, so we were quite surprised when she was born. She is such a delightful little girl and perfect for our family. We're excited to find a community of others with PFFD to learn from and share with. I've started a blog to chronical our journey. Please feel free to visit: www.Elsiesleftleg.blogspot.com

We'd love to hear any comments or advice as we are just at the beginning of the journey. Thanks!

PFFD chat on Thursday Dec 1

Quick reminder - the next CFD/PFFD, FH chat is on Dec 1 at 8 PM ET.
Contact icll (at) lifebridgehealth.org for more info; please include description of your child so that we can tell the legitimate requests from the drive-bys.

Surprise

My son Damian was born July 3rd, 2011. Throughout my entire pregnancy I was examined carefully because I have a cardiac pacemaker which I received about 3 months before his conception. I had a lot of ultrasounds and all the tech's and doctors showed a normal healthy pregnancy. My water broke at 3:30am July 2 and daddy and I took off to the hospital anxious, tired, and scared, excited...every emotion. 23 hours later on July 3rd Damian was born only 2 weeks early and a surprising 5lbs 3 ounces. The doctor asked "why is he so small?" I had gained over 50 lbs so we were all shocked.

Insurance/payment options for medical treatment

So my daughter will have her first surgery in September of 2010 and I am anxious on what to do with insurance! Is there any benefits, programs or good insurance companies anyone can reccommend? Im pretty clueless when it comes to insurance because I have never needed anything more than a perscription or two! Thanks!

Online chat about PFFD on Thursday October 27

Quick reminder that Dr. Standard and Dr. Herzenberg will be available on line to answer questions about PFFD (CFD) this Thursday at 8 PM Eastern (US) time.

This is a good way to get some preliminary information from the doctors and equally important, meet other families. If you have digital x-rays, the doctors can also take a look at them.

For more info, contact icll (at) lifebridgehealth.org . Please be sure to include a little background info so that we know you are "real". (Unfortunately, we get from people with less than stellar intentions).

New diagnosis

My 11 month old was just diagnosed with bilateral PFFD today. I was doing some research and was wondering how do I find out what type she has? Also do people with PFFD have a big delay when it comes to walking? My little girl doesnt use her legs at all at the moment. Any info or advice would be awesome. Thanks!

Amputation of the food or Paley-Brown Rotionplasty??

I decided to write down a question message because of my dilemma a treatment of PFFD.
I live in United Kingdom and have little girl. She was born in October 2010 with PFFD Paley type 3b.
English doctors told us about amputation of the food when she'll be one and hip joint surgery in the 4-5 of age.
We've seen Dr Dror Paley in Germany and he said it is not good idea to lengthening the leg and is not good idea to amputate of the food. He said, that the best option will be Paley-Brown Rotationplasty.

Clothes, Right Shoe Lifts, and Braces for a PFFD Toddler to Give Away

Hello! Before my son wore his prosthetic leg, he had a shoe lift on the right and wore an ankle brace on the left for support. I also hemmed his pants and pajamas.

Now that he is older, I'd love for these items to go to someone who needs it. If you can't afford to get a shoe lift or ankle brace, here's what I have:

Toddler size 3W Champion shoes with 2 inch lift on right shoe
Toddler size 4.5M Answer 2 orthotic shoes with 4 inch lift on right shoe
Toddler size 7M Answer 2 orthotic shoes (for use with an ankle brace)
Toddler size left knee brace

Online chat with doctors and other families about PFFD on 9/29/11

Quick reminder - the next online chat with Drs Standard and (usually) Herzenberg is Thursday 9/29. This is a great way to ask questions either of the doctors or other families.

It's at 8 PM Eastern (US) time. Email icll (at) lifebridgehealth.org for more information. (Please be sure to include some basic info such as age, previous treatments etc, so that we can tell which password requests are legitimate).

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