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 positive but hasn't had any problems with his red cells yet. He has been on an extremely low dose of neupogen for the past 9 years to keep his ANC at a safe level. When he was neutropenic his main problems were skin and sinus infections. We've done various treatments over the years for the low platelets - IVIG, WinRho, high dose steroids.
My son has had extensive immune evaluations to rule out ALPS and other similar disorders because he has mild spleen and lymph node enlargement. His IgA is low (it was fine when he was first diagnosed) and he does not respond as he should to vaccinations - another clue that something is not right with his immune system. They consider him CVID-like, but he really doesn't fit any current immune deficiency diagnoses. HE is currently in a study at the NIH and they are looking for more patients like him. Here is a link to the doctor leading the study if you want to pass it along to your doctors - http://www3.niaid.nih.gov/labs/aboutlabs/lhd/humanImmunologicalDiseasesUnit/.
It was extremely hard (and scary) in the beginning, but you learn to deal with the rough times as they come, and really enjoy the periods of good counts when you have them. My son is now a high schooler and actively involved in scouts. He knows that he needs to limit certain activities when his platelets are low, but overall he doesn't miss out on much - mainly because his interests have drifted towards things that aren't affected by his counts (music, computers, etc).
Like you, we have wonderful doctors involved in his care (we are in NJ). I think that has been key for me, as well as my son. Sometimes all the information available can be quite scary - it is good to have doctors who can put it all in the proper perspective - even when they don't have all the answers (I don't think any doctors do when it comes to Evans type patients!). I am extremely encouraged by all the research and interest in this area now - I truly believe we are moving much closer to understanding and finding treatments for disorders like this. We just need to keep our kids as healthy and happy as possible in the mean time!
Susan
In a message dated 12/7/2008 10:10:10 P.M. Eastern Standard Time, nicolegofman@... writes:
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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