10 year old with Evans Syndrome/ITP

Hi. My daughter has ITP. We did 3 IVIg treatments, and a month of steroids. No results. Come to find out, my daughter's red blood cells are being attacked by the antibodies, as well as her platelets (if I'm saying this correctly...I'm kind of tired right now....). Because of this, her Hematologist has given her the diagnosis of Evans syndrome. Once the steriods are out of her system, we will have to do a full anitbody panel (in two weeks) to test for other autoimmune disorders. Is anyone else in the same boat? I would love to connect with someone who is in the same situation.
Thanks! Stacy

Welcome to PDSA Stacy,

A few years ago we went through the same thing with our Granddaughter, we finaly convinced her Dr to contact the regional Children's Hospital, The advise was given on a better way of treatment for her and after several days in the hospital already, with little results.

After the advised treatment, our Ganddaughter's platelets and red cells went to exceptible levels, she went home in 24 hrs, and had three days of Dr office treatments to follow up.

So Keep the faith, and if you have any questions your Daughter Dr can't answer, don't hesitate to call your local Children's Hospital, Your daughter is a child not a small adult, we experienced this first hand and they had the answers that worked for her.


Good Luck to you and your Daughter, Chin up.

I'm an adult with Evans Syndrome. We have a rather large support group going on Facebook . Our blog is located here . We are also in the process of bringing our main website back up (we were down because we got hacked), and when it's out there, you'll be able to hit us here . We are the Evans Syndrome Community Network. We consist of people all ages, from all over the world. If you need help, want to ask questions, or just want to lurk, feel free to join us.

~Peace~