femoral torsion

[Guest guest]

We have great news--I think! Many of you will remember a few weeks

back when I was looking for help and info on relapses because we

thought my son Evan (8-17-00, bcf) was relapsing. After sending pics

to Dr. Ponseti and consulting with our own doctor, we had really

decided that re-casting was the way to go. However, I could tell

that our doc. really did not think this was the thing to do as Evan's

feet are still so flexible. His diagnosis was " overactive tibial

tendons " . His hesitancy was driving us nuts, so I emailed Dr. Mosca

(also at Children's in Seattle and Ponseti trained) and he

immediately agreed to pop in to our next appointment and give his

opinion. And thank goodness he did!

Dr. Mosca took one look at Evan running up and down the hallway and

told us to quit looking at the feet and to watch his knees instead.

The new diagnosis: femoral torsion. Dr. Mosca is currently doing a

study on femoral torsion in cf patients. He said there are never

100%'s in medicine but he is finding that ALL cf kids have some

degree of femoral torsion. This is based on 20 years of treating cf

kids, first traditionally and then Ponseti method. This shows up

between 3 and 6 years of age and will resolve itself by age 8-10.

Only 1/10th of 1% of them don't. Time is the best and only treatment

at this stage. Unresolved femoral torsion means bone surgery but Dr.

Mosca says he has never seen one in 20 years.

We are SO relieved with this as you can imagine. But I am also

extremely frustrated that this is not more well known. We were going

to proceed with casting and it would not have worked. Then the next

option would have been ATTT. And it wouldn't have helped either. So

I hope that by sharing this info., if anyone ever runs into an odd

relapse between age 3 and 6, make sure your doctor looks for femoral

torsion. I will be waiting eagerly for Dr. Mosca's finished study on

the cf-femoral torsion link.

and Evan