So Kellsey's neurologist called today with the results of her blood work that she had done last week. Beyond being very anemic, which we already knew, she also had extremely high thyroid levels. She's had her thyroid tested twice since she's been home with us because kids with Down syndrome are prone to hypothyroidism (low thyroid levels) but it looks like she may have hyperthyroidism or possibly even Grave's Disease. That's pretty rare for a kid with Down syndrome. Just call us the rare family. They're sending her to an endocrinologist for a further workup and treatment plan. I called the one they referred us to today, but hit a machine and they haven't called back yet.
Beyond that, Kellsey's white blood cell count is really low and her MCV level is high. That bought us a one way ticket to the hematology/oncology clinic. *sigh* Sadly, we already have one of those doctors, so there was no recommendation needed. Kennedy's oncologist is out of town and can't get us in until the end of January, but neurology is going to fax over a copy of her blood work so they can look at it before we get there.
Over and above THAT, Kellsey's 24 hour EEG went fairly well. Kellsey did well not taking all the probes off her head. We won't get those results for a few weeks yet. She's been having some strange episodes though, more than usual, that have us really concerned. We caught some on video, as requested by her doctor, and sent them to her neurologist and to her spine surgeon so they are aware.
Lots of stuff... And I'm trying not to worry. We've never dealt with thyroid issues before... we've dealt with oncology stuff of course, but we're praying HARD we never have to go down that road again. I am holding tight to the fact that we don't know what her platelets are, and that was the key with Kennedy when she was diagnosed. For some reason they couldn't find those results, so I'm hoping that's because they were normal!
I am also holding onto the fact that Kellsey had screwy blood work back in October with high sodium and her GI doctor freaked out. There was threat of hospitalization and rare kidney disease and panic ensued and they sent her repeat labs off to Mayo Clinic and in the end everything came back fine. SO she's already proven that her blood does some CRAZY things. In between sending up prayers, taking deep breaths, and trying NOT to think about walking into oncology with another child, I'm reminding myself of that. Crazy, inexplicable blood. That's what it is. Right? Right. If you all could pray for the same thing, I'd really, really appreciate it!