CF Support Group Reminder

[Guest guest]

This Saturday, January 29th, is the first meeting for the clubfoot

Support Group Joanne Walton and myself are starting. I know many of

you on this site are not close enough to attend, but if any of you

are within driving distance of Northern Virginia, please come!

It is the last Saturday of every month at Borders Books Cafe in

Fairfax, VA. The address is 11054 Lee HWY Fairfax, VA 22030. We

will meet at 1:00PM.

We have sent flyers to Pediatrician offices, Orthotists, gyns, etc.

There are 2 families we know saw the flyers, contacted Joanne, and

plan to attend. It turns out they both use 's original doctor

I dumped because he was altering the Ponseti Method. Both families

have since received second opinions from Dr. Herzenberg and

discovered their babies feet were not fully corrected, etc.

One topic of discussion at this Support Group will be how to handle

this type of situation where the doc continues to 'sway' from the

true protocol of the Ponseti Method. I know Kori just recently went

through this as well with her doctor. However, I think her doc is

more on track than this guy. This guy uses AFO's, etc. Also, we

are dealing with an ego here that is unreachable, KWIM!!!

In our situation, we have several families who use(d) the same

doctor, discovered bad treatment, communicated with each other, and

now all the parents are very angry. As much as we all want to sit

in the waiting room with picket signs (I still dream about doing

this), it is not a realistic solution. At the same time, it saddens

me that naive parents continue to put their 'trust' in this guys

hands and probably end up having surgery later. AHHHHHHHHH!!!

I hope to see some of you on Saturday!

and 3-2-04, bcf, s 14-16 hrs