I am so sorry to hear that your son was diagnosed. I know how devistating the news is. My daughter was diagnosed right before her 5th birthday. She is now 8. She has been on steroids, WinRO(should not have had this since she is coombs+), Rituxan, IVIG and 6mp. Our biggest success has been the 6mp. She was on it for about 8 months 2 years ago adn then went into a short term remission of about 7-8 months. She relapsed this past January and went back on the 6mp. She just got off of it again last week. We also had luck with IVIG over the summer when she had problems.
Since there is no real cure and every Evan's patient is diffferent, you just have to try different meds and see what will work for your child.
Best of luck to you. Lisa(madison's mom)
--- On Sun, 12/7/08, nicolegofman <nicolegofman@...> wrote:
From: nicolegofman <nicolegofman@...> Subject: [EvansSyndrome] New To Evans To: EvansSyndrome@yahoogroups.com Date: Sunday, December 7, 2008, 9:09 PM
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?
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...
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...
Hi Nicole,  I am so sorry that Zachary is ill. It is heartbreaking as a mom to see your child subjected to endless blood draws and treatments. Over the...
Hi Nicole, I'm glad you found this group - we all know what you are going through. My 16 year old son has autoimmune neutropenia and ITP. He is also Coombs...
Hey Susan, My son has much of the same ailments...when he was 3 they removed a swollen lymph node from his neck and in the years following his other glands...
Nicole, I am so sorry to hear that your son was diagnosed. I know how devistating the news is. My daughter was diagnosed right before her 5th birthday. She is...
Nicole, We here truly understand what you are going thru some days and years are really tough and then others can be better, it is important to find a doctor...
Wow, Thank you everyone for your reply's...it is comforting to know there are people out there that understand, and have been through it all. We will...
Hi Nicole, My son was diagnosed with evans when he was just one-year-old. He has had issues with all three cell lines. We also questioned whether it could...
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...
I've been reading all of the stories of people with evans syndrome. I'm also very scared. My daughter has a platelet count of 97,000 now. Life seems sooo ...
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