Hello Everyone. Some of you may know that I have been dealing with multiple
fractures (6
to date) in my feet and now in my spine. These have all occurred in a 15 month
period. We
assume this is mostly due to the prolonged prednisone use, but I am now
wondering if I
did not have some predisposition to this in the first place. This question was
triggered
when we found out that Hallie also has some low scores and she has only been on
very
limited prednisone in her 10 years. I know some of you have said that your kids
also
expereinced some problems with bone density early on ( I think Zach,
Seth...maybe more).
If any of your kids have experienced problems in this area would you mind
sharing that
with me. I am going to discuss this with Dr. Goldbach-Mansky on my next visit.
She is
totally aware of all my problems and I am sure of each of yours individually.
What I am
wanting to discuss with her is whether she sees a trend here. We are trying to
be more
aggressive with Hallie's calcium intake. One doctor has told me that these next
few years
are crucial in her development with her bones. I think you can all understand
this is a
problem very close to my heart right now. I just want to make sure we are doing
all we can
for our kids. If you all dont' mind sharing if your kids have experienced any
trouble with
the bone density I would appreciate it. I guess you could say I am just
gathering data here.
I think through this group is where we gather much of our information like this
and then
when we present it to the doctors it is just one more piece to this large puzzle
they are
trying to put together.

I am so happy for all of you that will be able to see each other in January at
the NIH. We
had the great pleasure of meeting Zach and Jan at our last visit. We also meet
sweet Tilly
and her family. What a wonderful opportunity that was. Tilly continues to be
such an
inspiration to me as I think of her often. I think our next visit will most
likely be the end of
March.

Happy New Year!

Jennifer Earnhart