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 years, I've cried more tears than my daughter, Katie, has.
Katie is 16 and was first diagnosed at age 8. She first mainifested the disease with low platelets and then 6 weeks later was critically ill with very low red blood cells. She has been in and out of remission several times since then. The great news is that she has been in remission now for 2 1/2 years (her longest stretch). She has been treated with prednisone and IVIG. If her platelets drop, IVIG is very effective usually keeping her counts from getting dangerously low. If her red blood cells ever drop again, we will try Rituxan.
Have the doctor's considered Rituxan? It can be very effective (hit and miss) and does not have the side effects of cyclosporine. You may want to try Rituxan first. It is usually administered one IV dose once a week for four weeks. I am not familiar with Rappamune.
There is hope....We all just hold on during the bad spells and enjoy good health during the remissions.
Please feel free to ask any questions at all. We are all here for you.
All my best,
Grace
--- 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, 7:09 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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