Hello Everyone, I just joined.My 8 year old daughter came down with Evans last May 2006.She does test positve for the antibodies against her red blood...
Dear Jen, My son's case is very similar to your daughter's (in fact, I think we may have corresponded on the ITP board at some point over the last year). He...
Hi everyone. I'm Steve from Snowy England and I Found this forum after a recent platelet crash Background After 4 years of stable counts I had a routine yearly...
Jen, A lot of children have success with Rituxan. It is an IV infusion usually given once a week for four consecutive weeks, some children in this group have...
Hi, all I'd like to second Susan's comments about neupogen. Check it out if low white counts, infections, and recurrent hospitalizations are a problem. My son...
Thank Susan,Dw and Amy you were all helpful! I will also try to answer everyones questions!We are in upstate NY.We currently see a team of pediatric...
... Hi, I am new to the group... Sprry, I don't know the answer to your question, but I have a question for you... My son was diagnosed last year with...
Jen, Your daughter's hematologists are correct in saying this is first a blood disease (autoantibodies are destroying your daughter's blood) *BUT* antibodies...
My 16 year old son was diagnosed with Evan's 6 years old. Three years ago, he developed several very enlarged lymph nodes. The surgeon told us before and...
i have been reading the posts as my 16 yr old has been battling evans for the last 6 years. this group has been amazing and full of info and experience and a...
Dear Jen, Glad we can all be of help to each other. I know I still have lots of questions and we have been dealing with these perplexing disorders for 9...
Hey Everybody, If I may, let me throw something out and get some feedback from everyone. At one time it was thought that there was no genetic basis for type 1...
I am 21 years old and I've had a few enlarged lymph nodes for almost 10 years. I underwent a biopsy when I was 14 and they found nothing wrong with them (they...
well the way i found out was i was tried all the time i had anemia but i was driving a truck with bad exhausted system my eyes got yellow so i went to the...
Hi group, I don't mean to keep bringing up the same topic over and over again...but, enlarged lymph nodes (and spleen) is one of the symptoms of ALPS. Those...
I just realized one of the links in my previous message about ALPS was already posted by Susan...sorry about the repeat. =) Amy ... Check out the all-new...
Dear Susan, Thank you for all of that information.I am going to do a lot of research with it.I have an appointment this Wednesday, at the hematologist's...
Okay susan! Rebekah is not refractory to treatment.She has not experienced remission,but prednisone does bring her numbers up if she stays on them.however all...
Hi, My son has Evans. He has his first crisis in February 2006, when he had zero platelets, treated with IVIG and Prednisone. Over the Christmas holidays, he...
I'm 21 years old and had my spleen removed almost 2 months ago. while I did have an extremely enlarged spleen (1010g as compared to the normal 150g), I didn't...
Hi I am 53 and I too had my spleen removed, in 2003. My surgeon said my spleenS were really diseased. I said "SPEENS?" He said yes you had 3! When the...
thank you Orginally he was to have a laproscopic proceedure, but the bag of spleens broke while removing them... so they had to make a much larger incision... ...
Just wanted to let any paretns out there with an Evan's Child between the ages or 2 1/2 and 18 that Make A Wish is great!! My daughter was refered adn her wish...
My 6 year old daughter got disability. It took about 4-6 months to get approved but she got it. I never thought it would get approved but it did. I would for...
You can get disability as long as you an prove that you can no longer maintain a productive work day. The social security says that you must be able to perform...
My son, Paul who is now 19 also was granted a Wish. He got a great Sony computer several years ago and is still using it. On the SSI front Paul applied ...
