HI Linda,

It does seem like there is always something to worry
about, and it gets more difficult to accept I think.

Dr. Winer, at the NIH, changed Ryan's calcium dosage
while we were there, so hopefully he is now getting
the correct dosage. Before, he was taking four 5oomg
calcium morning and night but was only absorbing 5oomg
each time. He is now taking one 500mg calcium, four
times a day. His endo, here in Houston told him to
exercise, take his calcium as prescribed, and she
would do another bone density test in a year. If it
has not improved she would put him on medication. She
told us she believes he wasn't getting enough calcium
growing up and that contributed to his osteoporosis.
He was also taking more cortisone than needed
prescribed by his current endo. That dosage was
reduced by Dr. Winer too.
The abnormal blood test I was referring to is called
flow cytometry and it was done in the research lab at
the NIH. The doctor there said it is not normally done
by doctors when ordering blood test. They ordered it
for Ryan to check his immune cells, along with many
other test, to find the cause of his eye problem. He
said a population of Ryan's immune cells were slightly
elevated, and he wanted a Hematologist to repeat the
test here. He said it could be an error, or something
minor, but it would be best to check it out.
Ryan's liver enzymes have been normal for a while, but
he is having his liver biopsy the end of March. We do
them every two years. The last one show improvement in
the liver, but he had been on Imuran for about two
years. I think the Imuran really improved the
condition of his liver. Now that he has been off for a
while, I am hoping it has not regressed.
Does Tara have IVIG only for the diarrhea? I have not
mentioned that to his endo, but will ask her.
Take care,
Vicki

--- lsquittman <lsquittman@...> wrote:

> Hi Vicki,
> Doesn't it seem like there is always something to
> worry about? Can
> Ryan take something like Fosomax to strengthen his
> bones? Is it from
> the HPTH or the steroids? I know when Tara had her
> bunionectomies over
> 10 years ago the doctor told me she had a lot of
> calcifications even
> then.
> You were not specific about which blood values were
> abnormal. Tara's
> liver function tests are abnormal and she is on
> Imuran. That's what I
> mean- always something.
> I hope the re-test shows improvement.
> Did you ever ask Ryan's doctor about using IVIG?
> Best wishes,
> Linda
>
>




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