Hi Jennifer,

Thanks for your reply, no, he has managed to avoid significant
lengths on steroids. That is one thing I have felt so lucky for
since I have seen the result of steroid use in children with heavy or
long term use, I was naieve to believe that maybe Michael had avoided
some serious issues with a diagnopsis before 2 years and limited
exposure to the meds most of you have all been on. I think I am
comming out of the blissful comfort zone with Anakinra and realizing
that this disease will progress. While anakinra is a merciful drug
to control symptoms, Michael has had 2 good years and it was because
of the Anakinra, the bottom line is it is not a cure and I do not
believe anymore that it will stop the progression of the disease as
once was implied. Have either of you been told annything about brain
MRI's? I am really confused and was hoping that I'd learn it is a
NOMID phenonmenon, not at the expense of another persons suffering,
but, I am scared to think there is another thing ontop of NOMID.
Anyways, I'd be curious to see how many already have negative z
scores and their ages, if anyone is comfortable to share.

Take care,
Karen A



--- In nomidsyndrome@yahoogroups.com, Jennifer Earnhart
<earnhart@...> wrote:
>
> Karen,
>
> I had a question about Michael if you don't mind. You mentioned he
had a
> DEXA scan at his last visit. Has he been on prednisone for his
disease? I
> was just curious if he had or if this is just a new finding. You
may or may
> not know that I have severe osteoporosis ( 6 fractures in last 12
months).
> We assume this is due to long term prednisone use. BUT....my
daughter Hallie
> also with disease had a DEXA scan at last NIH visit. She came back
with some
> negative z scores which was concerning to me. She is almost 10. She
was on
> some prednisone treatment off and on at a much younger age, but not
> recently. It was not enough that I would consider it to be our
culprit. She
> has had osteopenic comments on general x-ray reports since she was
4. I am
> just curious if these findings are all steroid related for Michael
or if
> there is possibly some common thread here. Thanks for sharing if
you don't
> mind.
>
> Jennifer Earnhart
>