[evansmom]

Hi there,

This kind of sounds like a slow smouldering aplastic anemia to me. If your daughters bone marrow biopsy only showed a trilineage decrease in cell precursors, and no abnormal cells, chromosomes, etc., I can't see at this point how it could be MDS. The only other thing is that it is abnormal to have a positive ANA, and Lupus is difficult to diagnose and often goes undiagnosed or improperly diagnosed for years. Of all the specialists your daughter has seen, it appears that you haven't gone the Immunologist route.
Perhaps this would be worth pushing for given the positive ANA.

If this is indeed a slowly developing aplastic anemia, and your daughter's hemoglobin and platelets are at an acceptable level and, most importantly at this point, her neutrophil (ANC, granulocytes) count STAYS ABOVE 500 CONSISTENTLY, then routine blood work, a BMB in the not too distant future and the 'wait and watch' approach is appropriate.

If the doctors truly believe this is a virus that will eventually go away, then surely they have done complete viral panels that would have revealed elevated copies of something. What was elevated??

The only other thing I can think of at the top of my head that you could discuss with the hematologist is a medication trial of acyclovir (to address this virual theory) or a trial of Lupus treatment. I'm not sure these approaches would be wise for fear of dropping the other counts, but given this has been going on for 11 months, it's worthy of discussing, even if it is unconventional.

Best of luck and keep your daughter away from damp, dark potentially moldy places, non-domestic animals, birds and any place that would harbour bird droppings such as window air conditioning units in tall buildings where you'd likely see pigeons, etc. perched. Review on a reputable web site the risks for fungal infections in a neutropenic patient. As far as I can see, this is where your daughter's biggest risks lie right now.

Take care and keep us posted.