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

Leg pain

Hello my daughter will be 2yrs old this Friday, she has Bilateral PFFD. She used to stand up a lot & would walk assisted but the last few months she seems to have pain in her legs. She won't hardly stand anymore or try to walk assisted. She says her legs hurt! She does however do her bear crawl on her hands & feet. I have asked the Dr about it & he says there isn't any reason she should be hurting & X-rays show nothing. I was just wondering if anyone else has experienced this as well. I don't get on here often but I will try & make a point to check it more!

Cost of super hip operation and each lengthening operation

Hi, as I wait for an estimate from Dr Paley's hospital, I would like to get a feel of the cost of super hip operation and lenghthening, and also duration between the super hip operation and lengthening. Are there extra charges/taxes for patients from outside US? Am from Nairobi - Kenya... Please Help

Simon

For anyone who has any questions about PFFD...I have PFFD and am 20yrs old

Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.

Any one have any questions about PFFD?

Hi, I am new to this site. Did not know it even exsisted. When I first researched about my PFFD there were hardly any information about it. But I am here for anyone to ask any questions. I am 20 years old , so feel free to ask anything.

Raegyn my Rae of Sunshine

Hi, my name is Natalie and my daughter Raegyn is 4 months old and has PFFD of her right femor. We're just getting started on our journey and she already had one fracture of the femor. I really don't know what to expect and our doctor is kinda of a fast talker and is telling us that theres nothing to do right now, but as a mother I'm sure that most understand that when there's something wrong with your child your natural reaction is to worry. I would like to get in touch with someone to talk about the what-if's, the what next, and the how comes.

SSI

My name is Natalie and my 4 month old daughter has PFFD, it's about a 3 inch difference and her feet aren't the same size either. I've been denied SSI benifits once and I am appealing it. I was told that my options were lengthing, amputation, are the lift (to me if her leg only will come mid-way her calf of her good leg, if that). I would think that would be a very high and dangerous lift. I was wondering if anyone else was having or have had this problem with getting SSI.

Does anyone need a size 5-6 left shoe or size 9 right shoe?!

I have been a patient with Paley for years and have done almost 20 inches of lengthening on my right leg. However my feet are different sizes so when I buy shoes, I have to buy both sizes... No where at home lets you mix and match sizes so I was wanting to see if anyone needed right shoes in a size 9 or left shoes in a size 5 to 6??? I don't know what to do with them!!! I was an art major, so I made a dining room table out of some but with that project done - I am stacking up unused shoes again!!!

Dylan's Journey

Hello, my name is Amanda, and I am a parent of a little boy with PFFD. Dylan is 2 years old and was diagnosed last September (2009). He is scheduled for a hip osteotomy next summer (2011). I am not really sure what that means, other than that he will be in a cast from his chest to his legs for 4-6 weeks after that. I am afraid what that will mean for him, because he is a VERY active little boy. The reason I joined this website was to connect with other parents about what to expect in the coming months and years; from surgeries - to his entire future.

PFFD / CFD live online chat on July 29

Just a quick reminder that Drs Standard and Herzenberg will be doing their regular chat this week. This chat is for congenital limb differences, so most of the families will have congenital femoral deficiency or fibular hemimelia or both.

Time: 9:15 PM EDT (Note that this is the time zone for Baltimore, MD or Washington, DC)
Place: http://www.chatzy.com/600868137410
Temporary password: lldtest (so that you can test the room out)
Day of chat password: must be requested by email through
icll (at) lifebridgehealth.org

stacked left shoe...boy

I was at Goodwill today and my son pointed out a pair of shoes. They are in good shape. They are New Balance, black high-tops. Size 12 (Boys). The left shoe is stacked 1.5 inches higher than the other. They were only $6.50! Let me know if anybody needs them.

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