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Personal Stories

Emily's PFFD

Here is a couple of pictures of our baby girl and her leg. One of them is when she was born and the other is her 1 year old picture.

Emily's PFFD

My daughter has unilateral pffd in her right leg. We go for surgery in september where they will remove half of her foot and put a pin in her ankle to fuse her bones together. There are no families in my area that I know of who have a child with this condition and I am just looking for someone who can tell me more or who has been throgh what I have to go through.

PFFD in OHIO

My son Peter has unilateral PFFD left leg and we are scheduling the lengthening surgery. We are looking for other children near Columbus OH who have had surgery.

Non-surgical bone lengthening?

Wow, amazing stuff!! http://www.breitbart.com/news/2006/06/28/060628204537.2422eofv.html. Could it be just around the corner? Could we drastically limit the number of sugeries our daughter needs to have by implanting this device in her femur? Wow, here's for hoping.

It seems some engineers/scientists in Alberta have developed a pea-sized device that emits ultrasound waves and stimulates bone growth. It was actually developed as a means to "re-grow" teeth, but they suspect there may be some applicability to bone lengthening.

Kiara's lengthening...

Just a quick update on Kiaras Surgery...
She had the surgery in March and due to her toes bending she had surgery again in June to have a little cast to hold her toes with a cast... she is walking and her leg is growing really well...
she has physical therapy 2 times a week and she has been walking for 2 weeks.

to all good luck

with care

sonia
kiaras mom.

Looking for a doctor for lengthing in Chicago or Detroit

Has anyone gone through surgeries or doctor in these area's? I live in Mid Michigan and am looking for another opinion somewhat close to home. I have a 2 month old with pffd in right leg. Thanks, Rachell

SuperHip (or similar hip stabilization surgery) and SuperKnee surgery questions

Our daughter Riley is almost 2 years old and we plan that she will have SuperHip and SuperKnee surgery with Dr. Paley at the end of the year. She is very mobile (walk, kind of run, kick, climb, etc.) with a ~3 inch shoe lift on her left leg - more adventurous and mobile sometimes than her twin brother (who does not have PFFD).

Would anyone be willing to share their experience with either or both of these surgeries? We will be staying with family while we are in Baltimore so at least that part is covered.

A few questions to get started:

1. Did you experience any loss of mobility or comfort after the surgery? How long until your child was fully mobile again? (4 months? 6 months? longer?)

What we're doing

We recently started the surgery process with our daughter. We are using Dr. Stevens at Shriner's/Primary Children's hospital in Salt Lake City (we live close by).

It was pretty scary to do the first surgery (hip osteotomy 2 weeks ago), but it went very well, and we were very pleased. We have a long road ahead of us, but we are hopeful/confident everything will work out well in the lengthening process. It was almost as scary and nerve racking as when she was born, and we couldn't figure out what the deal was (you all have gone through that, it appears).

Incidentally, our daughter has a class B difference that sort of went to a class C over the first 3 years since the hip was not properly aligned (and thus she is not able to take advantage of all her growth plates). We are opting for the lengthening. To lengthen, they have to first realign the hip. Thereafter, they will perform a leg lengthening each year.

Thank You for all of your support

I really wanted to take a moment to thank everyone that has emailed my and posted comments for my husband and I to read. I have been so over emotional this last week that I have not even been able to write anyone back and post anything. My little baby is getting bigger and bigger each day and I just cant even think of how my life would be without her. Here I am being so unhappy about her condition I sometimes....well most of the time forget how lucky we are to have her. She is God's gift to our family and instead of being so sad about what she has facing her and her life I need to remember how happy I am that her is here with us.

Results

Thanks for the prayers everyone, Tom has been in and screamed going under and screamed coming out!, but we have finally got a proper diagnosis and treatment plan.
Toms right hip isnt formed at all!, and his femur hasnt grown so he shall continue to wear his prostesis, i have had my tears that the miracle hasnt happened, but also im so pleased he wont have to go through the hospital visits that he is so desparatly terrified of.
As i have said to my family, please dont be sad as Tom copes fantastically well, and enjoys life the way he is, and as long as he is happy , so are we!
Tom is an amazing child that teaches us something everyday, We all love him so much and i think if truth is known, its only us that sometimes has upset thoughts and bad days

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