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

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.

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.

Tibia Hememelia

Does anyone have a child with Tibia Hememelia? Where you given options or only ampuation?

MY SON

MY SON IS THREE AND A HALF AND HAS PFFD IN HIS RIGHT LEG. HE HAS A SPLINT THAT HELPS HIM WALK AND APART FROM HAVING A SLIGHT LIMP YOU WOULDN'T THINK THERE WAS ANYTHIN WRONG WITH HIS LEG. THE HOSPITAL HAS ADVISED US TO AMPUTATE HIS FOOT FOR COSMETIC REASONS CAUSE HIS FOOT WILL GET TO BIG FOR HIS SPLINT BUT I CANT GET MY HEAD ROUND BEING THE ONE TO TAKE AWAY HIS FOOT. HIS RIGHT LEG IS FIVE INCHES SHORTER.I WOULD REALLY APPRECIATE ANY ADVISE ON WETHER YOU DECIDED TO AMPUTATE OR LENGHTEN YOUR CHILDRENS LEG. AND IF YOU DECIDED TO GO WITH LENGHTENING HOW MUCH PAIN WAS YOUR CHILD IN. THANKS. MY EMAIL

Free/Discounted Flights for medical need

A while back I mentioned that I would post information that I found on free and/or discounted flights for children with medical need and their family to utilize for doctor visits, etc.

I originally found this information about free flights online after my Aunt (a physical therapist) tipped me off that such organizations existed.

The information listed below are major airlines that offer these programs that I think would work for children with PFFD and their families. As I have not worked with each of these airlines I can NOT vouch that each of them will work, but I think that they might and it can never hurt to try! One disclaimer is that the airline will probably charge a small processing fee (around $5 per ticket) even though the actual airfare is free.

newborn

Our son is just 7 weeks old and has been diagnosed with both tibia hememlia and pffd. We will need to amputate at a year of age. This is our first child. How did everyone come to except this outcome of their situations. even though we knew of this inutero it is so hard to hear.

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