We went to Cincinnati yesterday. We had a great conversation with Fiona's doctor. I think Christian understands the way a thymus works, and how that impacts a bone marrow transplant. There are some things a transplant won't fix, things that are structurally wrong with the thymus wouldn't be cured. Fiona is a strange case. Most kids with her symptoms are more easily diagnosed with standard lab testing.
Because of Fiona's recent crankiness post treatment, we are reducing her dose of hizentra (igg) by 1 gram. We raised the dose during flu season to better protect her from illness. Now that flu season is over we are hoping that the lower dose will help turn our beast back into a princess.
This weekend Fiona started complaining of stomach pain. She would stop playing, start crying, and say "ow ow ow". They are testing to see if she has any intestinal infections, markers for inflammation, or parasites. If they don't find anything we will probably do some scopes to take a look at her belly.
We have some labs back from her visit yesterday. There are some changes that I'm going to ask about. On her CBC they noted microcytes, which are smaller than normal red blood cells. Microcytes can signal anemia. Her lymphocytes (combined antibodies and t-cells) are lower than we've ever seen them. I'll be interested to see what her t-cell counts are. Her neutrophil count is going down too, which can be a side effect of Bactrim, the antibiotic she takes on weekends.
Today we go back to our local doctor, an infectious disease specialist. I like that we have two doctors who understand her issues so well. When something goes wrong we have two doctors working to figure it out.