Has anyone ever used Shriners in Chicago for consultation or surgery regaurding pffd. If so how pleased are you with there source of knowlege? Willingness to work with you and for you? I also have been refered to Mary Free Bed. If anyone has anything to say about either of these two hospitals then please comment. Right now i am leaning toward Shriners in Chicago.
Grand Rapids or Chicago
We live in Michigan and our baby just turned one last week. Unilateral pffd right leg. We went to Shriners when she was about 6 months and they simply confirmed it was pffd and said come back when she starts to walk. It was literally about a 20 minute appointment and we expected them to tell us what our future held, so of course we were let down. I am not saying anything negative about Shriners in Chicago, it is just our expectations were to hear something different or something more. We have been to Dr. Engles in Grand Rapids a few times now and he is unbelieveable. He knows pffd inside and out and is a very caring person. Our baby fell off the couch last week and broke her femur and none of the doctors in Lansing would even see her because they knew nothing about pffd. Finally we got a hold of Dr. Engles and he took care of her. I cannot say enough good about that place. They have called twice to see how she is doing and how the cast is working out. He is keeping an open mind for us as to whether to amputate or lengthen. So at this point we are just enjoying life and our beautiful healthy baby and in the next 6 months we will consult with Dr. Paley or Herzenberg in Baltimore. I am guessing you live in or near Michigan? Let me know if you have anymore questions! Rachell
Shriners in Chicago
We moved recently and so we met with Dr. Ackman in Chicago at the Shriners there for consultation. I found the advice to be excellent. Dr. Ackman knew PFFD very well, had treated many children with PFFD and was able to answer all of the questions that we brought with us. I also felt like he wasn't trying to push any one technique or surgery in general.
Shriner's in Chicago
Our daughter went to Shriner's for the first time in Aug. 2006 . She has unitlateral PFFD. We have since been back 2 more times. Dr. Ackman is wonderful. He answers all our questions each time, and even proceeded to tell us information that we had not heard from previous doctors. Never have I had a doctor offer up information as freely as he did without a question to precipitate it. We were also told initially to wait to come back until she was standing/pulling up on furniture and trying to walk along it. In our visits with the doctor several times he's said that there is no rush to perform surgeries, procedures etc. That we can wait and let her grow and show us what she needs. I can't imagine taking her anywhere else. We are also very pleased with the prosthetic shop Scheck and Siress that Shriner's uses.
Mary Free Bed
My husband and I just took Sami to Mary Free Bed. Sami will be 3 soon and has PFFD in her left leg. It was a great visit. They really listened to us, asked what we were looking for. They didn't say what we should do...just gave us some options and supported the decisions we've made (non-typical prosthetic option). Everyone we met was extremely professional and helpful. I would suggest checking it out.
Libbi