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

Arthrogram

Hi hope i find everyone well,
The date for Toms hospital appoinment is approaching the 8th June, i was just wondering if anyone had gone through an Arthrogram at all, and if anyone could let me know what to expect, and outcomes?

My best gift arrive on Christmas day...

Hi my name is sonia and i am the mother of a beautiful little girl named kiara. Kiara was born at full gestation and we found out that she was missing a toe the day she was born christmas day December 25 of 2000, to our surprise Kiara wasn't just missing a toe she was also missing her fibula in her right leg and she had a small bowing and also a shorter femur. Since then I did all the research i could, we visited Children's hospital in Boston and we drove up to shriners hospital in Springfield. We opted to have physical therapy at home and kiara started to walk with a shoe lift at age of 16 months old, She had a small surgery at 11months old to release her tendon and again at age 3. She is now 5yrs old and after meeting with several doctors we decided to do her first leg lenghtening of 8cm. Its a road that its hard to walk on but so far kiaras leg has grown almost 2cm, she has pain and pin care is far from fun...

Our little angel has clacc c Pffd

Hi everybody,
I am the mother of a 1 1/2 year old girl with pffd. She is our first born and the apple of our eye and at times it really pains me to see her the way she is. She has pffd class C in her right leg but this does'nt stop her from being a naughty little girl. She is a really cute girl and people are attracted to her whereever she goes and they cuddle her. Iknow that the road ahead will not be easy for her and at times i really don't know what to do. My husband and immediate family are all very supportive.
Recently we have got made an extension prosthesis for her, and it has been a month but she still cannot stand without support. She just sits with it and gets cranky if we try and make her stand for too long............i am getting pretty worried and restless. Plz if any of you can let me know of your personal experiences it would be really helpful. i will keep u all updated.

Adult with PFFD

Hello! I was born with PFFD affecting my left leg. I was also born with my left arm ending at the elbow and my right arm ending below the elbow with two fingers. I welcome comments/questions from experienced persons with PFFD as well as youngsters and parents. I do not easily offend and no question is too personal.

Tricycle

Does anyone have any experience or recommendations with selecting a tricycle for a child with PFFD (unlateral)?

I am trying to find a tricycle that will work for my son who currently wears a non-bendable prosthetic to lengthen his right leg to the same length as his left.

I have seen a few items such as the amtryke, some hand powered tricycles, etc., but was curious if anyone had used on/seen one used to give further recommendations as to which may be the best to pursue.

As they are really pricey I am nervous about buying something without knowing if it will work, etc.

Beth

Update to new server and software complete

The migration to the new hardware/software is complete - let me know if there are problems.

What changes would you like with this site, pffd.org? For example - someone posted recently about how all the medical pictures show unhappy kids are while many have written that the opposite is true (Its certainly true that for our 3-year old daughter life is wonderful, filled with giggles, and PFFD is a non-issue) - In response I was thinking about adding a media gallery so people can upload happy images. I can't guarantee everything can be done - but here is a good place to add comments to let me know what pie-in-the sky things you might like.

Dr. Paley or Dr. Herzenberg

For people who have been to the Baltimore surgeons...I was wondering if you saw just one doctor on your visits there or are you exposed to multiple ones. I have heard great things about the group there and wondered if they work as a team or if you just stick with one person. Do people have preferences over Dr. Paley or Dr. Herzenberg?

Plasma Car - Ride on Toy

We just wanted to let people know about the Plasma Car, a ride on toy for kids. It's perfect for kids that have difficulty pedaling other ride on toys. There are no pedals and no batteries. Kids propel the car forward by swiveling the steering wheel back and forth. It drives on a smooth, flat surface. Our 3 year old daughter has bilateral PFFD and wears a prosthesis on one leg. My husband made some adjustments to a tricycle to see if she could pedal it with one foot, resting the other leg on a stationary rod. However, it has been difficult for her to do by herself at this point. She loves to play outside and we had been searching for a ride on toy she could control by herself. I saw the Plasma Car in a toy catalog and got it for her birthday in February. She loves it. She can get on by herself, put her legs out straight in front and start turning the wheel to make it go zooming down the driveway and around in circles. It is a wonderful ride on toy for any child that has a difficult time with pedals since you control it completely with your arms. All kids love it. I just noticed that Target is selling it online now. You can search the web to see pictures and even a demonstration of it in action.

If I could could move anywhere to treat PFFD, I would...

If you could move anywhere to help your child with most sever form of PFFD where would that be and why? Where would you move to get prosthetic services, why? Where would you move to get hip reconstruction why? Were would you move to get Van Ness, why? We have the option of moving just about anywhere. We would like to know your opinion.

Places you would avoid are equally valuable.

Little Romie's journey so far...

I have a two year old son, named Jerome that was diagnosed with PFFD in his right leg when he was still growing inside of me. I was 21 years old at the time and I was just excited to start a family.

When my husband and I first found out about his condition we went to the library and did some research. When I saw some of the pictures of legs of children who have this condition I wanted to cry because most of the children in the pictures were crying or looked sad it seemed so hard to deal with. I found out there werent many options for treatment and definitely no magic miracle that could just make it all better.

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