jean

i am sad to hear about your child with ITP/Evan's.  just to let you know what worked for my husband, but of course he is 27 years old so the type of treatment may be different than used on a child.  on january 3rd of this year, mike noticed the patekei rash on his ankles and went to the doctor and his platelets were 3,000.  the put him on gamma gloubin and high doses of prednisone.  that didn't help so we went to UAB in birmingham, alabama and they took out his spleen.  needless to say, he almost died from the surgery because of the bleeding internally.  he pulled through and his red blood cells also dropped that week.  for 2 weeks, no progress so they sent him home and started him on Rituxin treatment.  THIS WORKED!!  after 4 treatments, his platelets were up to 200,000.  he is now down to 5 mg of prednisone a day and will be totally off by the end of april.  his counts are now at 244,000 and average around 230,000-330,000 bi-weekly.  i would recommend anyone talking to their doctor about Rituxin treatment.  it is not FDA approved yet for ITP, but the doctor can fight for the insurance to pay for it.  it truly saved my husbands life and i am grateful.  we got married this past march 8th and now we are expecting a baby in october!  we can now move on with our life together.  i think this last episode of his ITP was the hardest thing i ever went through, but with many prayers and concerns from this group and friends and family, he pulled through.  i will continue praying for Aiden, your child, and everyone else who is currently out of remission.  GOD CAN WORK WONDERS!!!  kim

 Amy Walsh <smlybly@...> wrote:

Jean,

Thank you for your return letter on nuetropenia.  I am sorry to hear your daughter has been diagnosed with Evans Syndrome.  If you have any questions or just need support, you have found the right site.  Most of the participants on this site are either parents or patients of Evans Syndrome.  Has your daughter been staying in the hospital since december or does she receive out patient care?  Chemotherapy is one of the many treatments for Evans Syndrome and as you will probably read every patient with Evans responds differently to all kinds of treatment.  I found it helpful to read other's experiences when Aidan was first diagnosed so I am sharing his story. 

My son, Aidan, was first diagnosed with Autoimmune Hemolytic anemia at 10 mo.  He was in intensive care and treated with steroids.  His hemoglobin rose in a few days and we were sent home preparing to slowly lower his dose until he was completley off the medicine.  At 15 mo. he recieved routine immunizations and 2 weeks later his platelets dropped.  This is when he was diagnosed with Evans.  Aidan was also hospitalized last April with platelets at 1,000 and treated with steroids, cyclosporine, and vincristine at that time.  We eventually managed to wean him from the steroids and keep him on low doses of cyclosporine.  His coombs had turned from positive to negative in the fall and except for a few dips in white blood cells his counts remained very high.  I was hoping we were on our way to remission.  Unfortunately, last week at his monthly appointment his platelets were at 15,000 and the coombs is again positive.  So we are back on steroids and hoping this time is remedied quicker than last.  Aidan is now 2 years old and a very happy little boy, right now, he doesn't even mind medicine and doctor visits although I expect that may change with time.=)

Hang in there and God Bless. Amy (Aidan 2 with Evans)

 j <jworrell98@...> wrote:

Hi.
My name is jean and I have a child that has been in the hospital
since dec 02. she is at this time having in/out treatment, Kemo is
the latest treatment , she has ITP and Evans Syndrome and some animia
promblem. I was trying to find out anything on this evans syndrome.
ITP is low blood platelets, she went into the hosp with only
2thousand and you should have any where between 150 to 450 thousand
platelets,. any help on this would be greatfull..  thanks and GOD
BLESs  jean



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Servi

---

Do you Yahoo!?
Yahoo! Tax Center - File online, calculators, forms, and more

Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.