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

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.

Help our Ginny

Hi our daughter is three and we live in mississippi. Like so many others that I have read about she was diagonosed at first with osteogenisis imperfecta after a visit to our nearest genetisis in memphis we were happy to know that she has pffd. We have been kept in the dark for quiet some time. Because I am an LPN second and a mother first once the initial shock of having our fourth child at forty wore off I begin to question the choices that our doctors are making and have come to the reality that they know no more than I about this. I had to recommend for her to have daily range of motion exercises at birth. I had to request physical therapy( and God blessed us with an angel named Regina)

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.

New Lengthening technique...???

Hi, I was just reading and article and it seems as though there is a new procedure for lengthening that is still in the developmental stages that is a plate that goes on the bone and the distraction is done using a small rench through an incision in the skin. Anyone heard of this? Apparently it was talked about at the American Association of Orthopaedic Surgenons this past March. Here is the article:

http://www.baptistregional.com/news/healthscout/?id=531658

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

Diaphysis (diaphyseal)

The Diaphysis is the middle part of a long bone (wikipedia link )

PFFD book: 

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?)

I can't see the pictures I've uploaded? I get file not found!

This is probably because the file names had a special character in them like &$'"; etc. Please only use A to Z, periods, underscores and dashes in image filenames. Special characters are not allowed and are stripped away. You will need to rename your files before uploading them to remove such characters.

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.

Tibia hememlia

Does anyone have a bowed legged like the photos i have attached of my son? Did anyone NOT choose amputation? I am feeeling so torn on what is the "right" descion to make. We plan to fly to Dr.Plaey to get a second opinion, but my heart feels like ampuation would give him the best chance for an active childhood, with out many surgeries. Thanks all

Jenna

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