Re: back from Infectious Disease Specialist
I felt like she had good ideas. I agreed it was time to draw blood (aww ) and try to get to the root of things. I wanted her to say something like "we think its XYZ but it might be ABC so we'll run this test and let you know" but instead there were several possibilities. She was pretty hung up on it being CF (which is genetic, and recessive so it takes 2 carries) but yes she did say there are uncommon variants they can'r readily test for. Of course there are also over 1200 primary immune deficiencies so some of those are also really hard to identify.
We'll see the immunologist on Monday, they blocked off 3 hours for us and said we could have more time if we needed it! And in the afternoon the ortho will see us about the short leg and maybe short arm and we'll bring up the wide-open soft spot
Kim, mom of 5