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 normal now that I'm afraid of whats around the corner.

Hannah was admitted to miami childrens on october 30th after her platelet count was found to be 18,000 and the rbc was also not good. We spent a week there doing a bone marrow biopsy, 2 bone marrow aspirations, blood transfusion, platelet transfusion, 2 treatments of IVIG. We saw the hem-onc doctors, rheumotology, infectious disease and adolecent medicine doctor. We have started with a doctor closer to us that seems very good. She is a hem-onc doctor. We go back to the rheumotologist next week and do the hemotologist weekly. Hannahs platelet count was up to 77,000 from 45,000 the week earlier. Her prednisone was lowered to 40 from 70 and her iron was increased. She is out and about all the time, sleepovers and a madonna concert last week. I have also started with an oriental medicine, accupuncture, M.D. We will start to change her diet as well as add some supplements and vitamins. She will get accupuncture twice a week and I have asked a nutritionist to help with a healthier diet for a 16 year old. Anything I ask her to do is usually rejected. I guess we as parents will try all avenues. So, I will keep you all posted and share any new information I get.

 

Debbie (mother of hannah 16)