Just wondering if anyone can offer advice. My almost 8 month old son Isaac has about an inch and a half length difference and we are planning on getting him shoe lifts soon as he will start to walk. Has anyone had to use these on thier babies? And should we also encourage him to try and learn to walk without the lifts as well or should we mostly use the shoe lifts? Any advice is appreciated.
You can find more details in previous messages, so I won't belabor it. Just wanted to mention that there is an online real-time chat this week on the subject of congenital limb differences, including CFD (pffd) and fibular hemimelia. If you are looking for other opinions, this is a good way to start. The doctor(s) can even review x-rays if you send them for the chat. Any questions or for instructions, email icll (at) lifebridgehealth.org (sooner rather than later because our spam filter occasionally gets carried away!).
Hey everyone, hope your all doing well and happy!
Just to let you know Tom is now nearly nine and is doing ever so well on his prosthetic leg!
He does everything all the other children do and describes himself as a normal child!
He is cheeky, a pain in the ass, plays footie , has many many friends, swims play mates, and has even managed to just about ride a bike!
We are all very happy for him aswell as his doctor Mr Monsell who is very pleased with Toms prognosis.
I am new to this site but have known about our son's unilateral PFFD since an ultrasound at 19 weeks. We are from Pittsburgh and have seen a pediatric orthopedic doctor at Children's Hospital since I was pregnant. Our son is almost 2 now and has been walking since 10 months and his PFFD does not appear to limit him in any way. He is a busy little guy and an absolute joy! My concern is that we are not being proactive enough. We are due back to see the doctor in two months.
Just a quick reminder that you can chat online with Drs Standard and Herzenberg this Thursday evening to ask about CFD. You don't need to be their patient to participate.
For additional info, email icll (at) lifebridgehealth.org and mention that you heard about the chat on this forum (we've had a few very strange requests lately and just want to make sure the people we give passwords to are legit).
Hi, I was searching online for answers about PFFD and came across this discussion group. I have had 2 ultrasounds this week both showing that my little girl's right femur is shorter that her left, about 2/3 the length. I have not met with the orthopedic Dr. yet so I'm not sure if this is even the diagnosis yet. Just wondering, because of the grueling waiting game, if this is what was seen on ultrasounds of people using this site and were there any other things that the doctors thought it might be besides PFFD. I'm feeling really horrible right now.
If anyone knows where we can stay when my daughter is having surgery with Dr Paley. We are from out of town and don't know anyone in Florida. Any help will be appreciated.
Thank you
Just a reminder that Dr. Standard (and frequently Dr. Herzenberg as well) will be hosting an online chat on congenital limb differences. This includes conditions such as CFD, fibular hemimelia and a few others. Date Thursday Jan 20; time 8 PM EST.
If all of this is new to you, or if you have questions, please join us. If you have emailable x-rays, the doctors can review them during the chat.
I am a 36 year old BPFFD woman. I have not had any lenghtening or surgery's and have full function of both my legs. However, over the years I have aquired a list of "issues" mainly pain. I have been all over (so it seems) for back and hip problems. The biggest problem is no one seems to know what to do for my "hip" pain. A prosthetic is not an option, as I do not have an actual hip or knee joint. This is just a nutshell of what's been going on. I am wondering if any other adults with BPFFD have suffered or are suffering from any sort of pain issues. I look forward to hearing from people.
