We have a lot of catching up to do in regards to Gavin. Now that the server is up and running, I can finally do that.
Gavin had his immunologist appointment yesterday. He did really well on the trip up and back. Sometimes he struggles in the car but he did great.
We met with Gavin’s immunologist and discussed everything that was going on with him at length. What we were able to confirm was that we have no idea what’s causing the levels across all cell lines to go up and down. We can assume it’s the Clozapine but there’s no way to know for sure unless we remove it, and that’s a huge deal.
His levels have come up out of the more critical levels, but they’re still significantly lower then they were in January. In fact, some are less than half of what they were in January.
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The problem is that we don’t know why this is happening. Also, because it changes from say to day, without daily labs being run, there’s no way to know if it’s a good day or a bad one.
We have to be cautious, at least until we have a better understanding of what’s going on.
Gavin has been referred to Hematology and Oncology at Akron Children’s Hospital. This could turn out to be the Clozapine, even a bone marrow disorder. It’s also possible it’s part of his CVID as well.
The point is, Hematology and Oncology will hopefully be able to better isolate the problem. These guys work very closely with our immunologist on cases like this.
If we can identify the problem and fix it, that would be amazing. I’d be thrilled if we just gain a better understanding of what’s happening, what it means for Gavin, and what precautions we need to take. That’s a start..
For now, we are avoiding large crowds of people, especially if there’s lots of kids. We will keep his IVIG Infusions going on schedule and wait to hear about his appointment at Akron Children’s Hospital.
The really scary part of all this is how deadly this could be. His immunologist explained that if they drop much lower then what they already had, it could be deadly. Fevers would require immediate hospitalization and that’s scary, especially if we don’t know his numbers on a daily basis.
Things are doing better for now and we are all so grateful for any movement in a positive direction.
