Hi, My daughter Ayanna has unilateral PFFD. She is now 1yr 3 months, I was wondering how early lenghtening procedures can start? The doctors I have met have told me that they will advice me in due course!! I need to know to plan!! Please help
I'm really pleased to announce that my wife Alex and I are expecting our first baby this coming Christmas.
We went for Alex's 12 week scan yesterday and thankfully everything looked normal, which of course is what every parent wants to hear. It was such a great experience, looking at little baby Bailey moving around, amazing.
Just a quick reminder that Dr. Standard is again hosting our monthly chat on congenital limb differences (CFD, fibular hemimelia etc) this Thursday at 9:15 PM EDT.
This is a great way to be able to ask questions without having to make an appointment.
For details on registering, please email icll (at) lifebridgehealth.org, and give the child's age and diagnosis, and mention you heard about the chat here. (Just being safe... we've had a few "questionable" people who have asked for info and like to make sure everyone is "legit").
I know others have discovered this in the past on this site but I just have to say how much we love our Plasma car. This has been the best toy our son has ever recieved. We just put in wood floors in our whole house and our (almost 4 year old) cruises all over the place. It makes trips to the bathroom and trips to get more toys from his room fun and easy when his prosthetic is off. He hops on his "bike" and off he goes. We found it for $36.00 at Costco!
Does anybody have an email address for Dr Charles I. Scott Jr. MD of the Division of Genetics, Department of Pediatrics at the Dupont Childrens Hospital, Wilmington?
I have found the website with information for him, but only phone and fax numbers. I'm in the UK and wanted to send an email, rather than a lengthy, expensive phone call.
This is all regarding the fact i've been told recently that he has done some genetic study with findings that on the maternal side on the X chromisone the condition seemed to have been passed on.
Just a quick reminder that Dr. Standard (and usually Dr. Herzenberg as well) is having his next online chat this week on Thursday 5/20 at 9:15 PM EDT. This is a great opportunity to get to talk to one, and often two(!), of the most experienced limb lengthening surgeons around. This chat will focus mostly on CFD (pffd) and fibular hemimelia, although there usually a few other diagnoses represented. Besides the doctors, another benefit is that you can chat with other parents as well for their input.
I have a pair of little girls shoes, infant/toddler size 3w that have a 4cm lift on the left leg. My daughter used them for 3 months before they became too small. I would love for these shoes to go to another little one that needs them rather than sit in her closet. Please message/comment me if you have any use for them.
This is a weird question, but I don't really know where else to ask.
I have bilateral PFFD and walk with forearm crutches. I am getting married next June, and I'd really like a bouquet. Obviously, walking with crutches (one of my gifts from my parents is a special set of wedding crutches) poses some challenges to carrying a bouquet.
Does anyone have any brilliant ideas on what I could do?
Please let me know if you know of any books that are available for children with regards to going for surgery and also for receiving a prostetic foot and leg. I'd like to know if there's something that explains it to children in their own language.
