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Hi Nicole....
Sorry to hear your son has been ill...Drs will do everything they can to get your son feeling better... You will hear from many people on this board who understand what you are going through and each one has their personal experiences with Evans to share with you which will help you get thru this...
I have a son who is almost 16 and we have had lots of Dr visits over the past 2 years since he became ill. Drs originally thought it was Evans but they now think it is hemolytic anemia which is one part of Evans....
My son has not been treated with the drugs that are being administered to your son but some others on this board may be able to share some info with you...
Make sure you read up on this illness and chat with people on this board to have an understanding of what is taking place from day to day....
It is sort of a balancing act and what works for one patient may not work for another...It's important to recognize the symptoms and see Dr if you have any concerns... Zachary is young so he probably will not understand everything and be able to tell you when he is feeling certain symptoms.
Be guided by the staff at Children's Hospital-they deal with these things everyday and are there to help you... they will do everything they can to make Zachary feel better...
You are not too far from us...we are in NY....
Take a deep breath and take things one day at a time...Our children do better than we do as parents with these things...
It's frightening especially when the child is first diagnosed but you will learn on this board that you are not alone....
OK everyone on this board, step in, share
some words and lets help Nicole get thru this....
Erin
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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