Wednesday, November 6, 2013

where we are going...

Our appointment today was good, and long. The doctor explained a lot about the plan for reaching a diagnosis. Our first step is to check her t-cells again. If they've gone down we do some genetic testing for SCID. If she comes back positive for SCID we do a bone marrow transplant. Autoimmune responses, opportunistic infections, and slow growth are all possible reasons for a bone marrow transplant.

She got her flu shot, which she may or may not develop antibodies to. The hizentra we give her contains antibodies from thousands of donors, which give her some protection. Unfortunately it's not a long lasting protection. Her body metabolizes the antibodies in about three weeks.

Sometime before January she will have a series of scans to check her organs. She is at risk for organ damage from autoimmune responses.

The doctor mentioned that she may still outgrow her hypogammaglobulinemia (low igg). It's not likely, especially with a t-cell defect and an extremely low igg count, but is possible.

Sometimes it's overwhelming to try to process everything associated with her condition. I'm sure that I'll remember more tomorrow. We're all exhausted and ready to sleep.

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