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I am really trying not to google or search or learn anything about this one until he gets back to me. There is nothing I can do to change anything until we know yes or no so please don't tell me anything about it if you do know. I know it won't be good if that is what he has but here is the email from the hematologist in Cincinnati.
"We did these additional labs to rule out a disorder known as HLH (hemophagocytic lymphohistiocytosis) which can cause splenomegaly (he has a slightly enlarged spleen) and low blood counts. In HLH, usually the triglycerides are high, fibrinogen is low. His fit that pattern, but in HLH they are usually much more abnl than Danny's are. I am going to ask one of our immunologists to look over the results and see what they suggest."
I will insert that at least one other thing is low NK function...Danny's was at the " less than x" level of low. That is one of the reasons he has tested for this.
So I am really hoping the consult says no but I know they sent of genetic tests too so we will likely have to wait to get a 100% answer until after that comes back if this is the disorder the genetic test is for.
That's why I am not googling... too many horror stories on there. I am waiting to talk to the docs. Dr. H is consulting the doc that treats that regularly. I am trying not to really think about it at all until then.