My 4 yr old niece was diagnosed with AIHA in Jan. 08. Since has been on prednisone and her blood levels are remaining up. The doctors said that this was caused by a virus. She had both the warm and cold antibodies in her blood. Has anyone heard of this before ? I am trying to find some parents that have went through this to compare so we can figure out what/where this “virus” is? Or was this just the doctors way of saying we have no idea what caused this?
Where do I start. My daughter was dx in Nov. She only has Warm reactive. I finally took her to John Hopkins which was my saving grace. They care, they looked at extra things, they gave her a great check over and if nothing else gave me a sense that someone really cared! No one knows how trifling and hateful the medication used to help this disease can be. Prednisone has made my 70lb 8yr old in to a 128lb 8yr old in a matter of 9mths. most gained in the first few mths. She was and is still very sick. We can maintain day to day routines, but they are now filled with medication, dr appts, bld draws weekly and now we are moving on FINALLY to IVIG treatments. We had our first yesterday. Depending on her response, we will have more or move on to Rutixmab. Be there for your family it is a stressing disease and something that no one quite understands untill you have to deal with it and the medication side effects. I stress finding the right dr. and one that makes you feel that you are not losing it and that it is serious.I an anxious to hear how your neice is doing now and what she has been through! landjfamily5@yahoo.com is my email.
How else did she react to pred? What dose was she on?