[Candace P]

I'm writing to tell about my 11 year old son, Jacob. He was diagnosed with sever AA this past June and had ATG in early July. He's homebound from school as his ANC is low. Luckily, he's a homebody and hasn't been too bummed about being on "house arrest". His last counts were hemoglobin- 7.8 (we're planning to transfuse this week), platelets 41,000 and WBC- 3.6 with an ANC of 700. Of course, last week the ANC was 250 so it goes up and down A LOT. He takes 100 mg of cyclosporine 2x per day. No siblings so no match and the doctor hasn't even hinted at a BMT and when I asked about another round of ATG he said " the body will determine that". My son goes to the largest children's hospital in Indiana and I know the doctors are good but I feel like his main doctor thinks I'm an idiot. I thought this site might be a safer place for me to ask questions. My son has daily migrating joint pain. Has anyone experienced joint pain from ANC? He could just be having a growth spurt. His appetite has begun to go down. Is this normal? the doctor suggested giving him a vitamin with iron but everything I've read discourages giving iron. I'd love to know of any other success stories regarding AA. Honestly, I'm needing positive reinforcements and to know that this disease can be beaten. It's nice to know we aren't alone!!