Fiona's labs

Fiona's latest labs are mostly normal. Her IGA and IGM are normal. Her IGG is high, which could mean that she's making her own, or that she's not metabolizing it as fast. All of her t-cells are in normal ranges. Her t-cells are responding well to stimulation, except for tetanus, which is about 1/4 of low normal. There are some other labs that are off, but I'm not sure about what they mean.

So you may be thinking this is great news. I should be excited, but I'm not really feeling it. I'm actually a little more uneasy and worried. Kids don't really outgrow this kind of immune deficiency, and some of the cells she's making aren't working well. If everything looked normal I think I would be more hopeful. It feels like her version of normal has changed.

In July her IGG was 2000, August was 1900, and we skipped a few infusions between then and September, when it was 1500. High normal IGG is 1200. I don't know if her IGG went down because she was getting too much, or if she was making more of it, and now she's not making enough. We've skipped a few weeks of infusions, and will be rechecking in two weeks when she has her antibiotic infusion.

She's been healthy for a few months. She's growing well. She's been going to primary, and she loves it! Last week was the primary program at church. She got up to the microphone and started telling a story about a storm with thunder and electricity. She ended with everyone is not doomed. She's been pretending to be a snake, or a mama pteranodon. Her babies, Tiny, Shiny, and Don are always hungry for meat, usually ostrich or pig meat.

confusing kid

I just realized how long it's been since my last post. We've had some labs drawn in the past few months that have been unusual for Fi. Everything that is usually low was high, lymphocytes, iga, igm, all normal, igg, high. In the two years that we've been watching her that's never happened. We are going to Cincinnati this month to have labs drawn to make sure there wasn't a lab error, and they'll do a bunch of labs that we haven't checked in a few months.

As much as I want to think that her immune deficiency is gone, I don't think it is. She has thrush. I found it this morning at church. She had patchy transparent white spots on her bottom lip. I just checked her again at bedtime. The spots on her lip are bigger, and less transparent. Now there are spots on her cheeks and in the back of her throat. In the past her response to thrush wasn't great, then it was, then it wasn't. Thrush in a three year old is unusual, and mostly seen in kids with t-cell deficiencies.