Hi Nicole,
My daughter was diagnosed at age eight,she is now 10.She has neutropenia,thrombocytopenia and is Coombs positive for antibodies against her red blood cells,but they stay in normal range....except when she was first diagnosed.
We use steroids(prednisone)to treat her.It was a constant at first(the first year),but now she only needs them when her neutrophils or platelets drop low.Then she is on them for a week and weaned off of them for a week.We have also found that whenever she has a cold/virus,her body gets over-excited...the antibodies act up and start killing her cell lines.We know to start getting CBC's or we watch for abnormal brusiing.
I understand what you are going through right now.At first we were at the hematologist/oncologist often.We had CBC's done every other day and were on the phone w/ the doctors most days of the week.We were in the hospital twice.It does settle down and you will find a routine,a sense of normalcy.Now we only have to see the doctor every 6 mths.I can call or email her if I notice bruising or other small signs,that I have learned to watch for.So please stay calm,hang in there...it will get better!The support group really helps too!
Jennifer
On Sun, Dec 7, 2008 at 10:09 PM, nicolegofman
<nicolegofman@...> wrote:
Hi all!
I am a Mom of a little boy (Zachary age 5) whom was recently diagnosed
with Evans...4 months ago to be exact. Since then our lives have been
literally turned upside down!
We are at the hemotology office two to three times a week; Zack has
issues with all three of his blood lines. It first manifested itself
as neutropenia, then went on to thrombopenia, and most recently
anemia. He is currently on Rappamune, and the doctors are flirting
with the idea of putting him on cyclosporine. As parents we are
completely overwhelmed, and feel totally helpless!
We are currently being treated at the Childrens Hospital of
Philadlephia and couldn't be happier with the doctors there. We are
just curious if this constant battle gets any easier..the docs say it
will but its hard to see the light at the end of the tunnel!
Anyone out there go through the "exploratory" stage? Does it get any
easier to manage? Is it a matter of finding what works for the
individual?
Thanks for letting me vent!
Nicole
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