The FH is Not Too Severe

Dr. Paley called! He said, "First of all, to reassure you, it'd be very unlikely that the best treatment is amputation." He said most cases of FH are completely reconstructable. He talked about the studies that have been done comparing his patients to a group of children who had amputations. He said his patients' outcomes were just as good as the children with amputations as far as function. He said because the prosthetics are so good now, this means that the children in both groups essentially have "normal" function. As far as the psychological outcomes, his group had better outcomes. He also said most orthopaedic doctors are not familiar with his "super ankle" procedures and are most familiar with amputation as a treatment, therefore that's what most doctors recommend.

I told him Lauren was being treated with a harness for hip dysplasia. He said this treatment may be a waste of time because in many cases it's not really hip dysplasia, and rather a hip deformity associated with FH. That was disappointing because I thought we were close to having the hip issue resolved. Not to mention, she has been wearing a somewhat annoying harness for more than half her life that was possibly no help to her whatsoever. It will be interesting to see if the hip ultrasound results next Wednesday show any improvement.

So, we set up an appointment for Dr. Paley to see Lauren and for more x-rays. He said he likes to set up what he calls a "life plan" where he tells us what needs to be done and at what age. He is currently in Baltimore but is in the process of starting a new institute at St. Mary's in West Palm Beach, FL, which he sounded excited about. He will be there starting in June and our appointment is July 24th. He said Lauren wouldn't need any procedures until she's around a year and a half old.

I e-mailed Lauren's x-rays to Dr. Paley and this was his response:

The FH is not too severe. I am not convinced re hip dysplasia but no harm in treating.
See you in WPB.
Dror Paley, MD

I feel like we can take a deep breath for the first time since Lauren was born. See you in WPB!