He didn’t sleep Wednesday into Thursday. He was unfocused, obviously tired Thursday, but he slept that night. Friday his behavior plummeted, so did his language. He obviously was having seizures or persistent spike and wave discharges during his sleepless Wednesday night.
He didn’t sleep Friday into Saturday, more spike and wave discharges. Waking at 1:30 am, both Zach and I tried on an off, for hours at a time throughout the night. At 6:30 am, he vomited.
I have never wanted Alex to have a fever more in my life.
Absent of the fever, it would tell me that he is having such seizures, such discharges that it is manifesting in the symptoms of vomiting. That’s bad.
He had a fever.
The frustrating part of this is not only his inability to communicate if he is having other secondary symptoms of continues seizures (headaches, etc), but also that we have just fully weaned him from his initial anti-seizure medication, putting him completely on a new one. This has been a long process.
The higher we’ve gone to the max dosage of the second, the more improved we’ve found his language, comprehension, conversation, interactions, behaviors. We were getting gleams of hope shining through. We were getting a glimpse of him.
But as we’ve reached this max dosage, rather, just before, he started being unable to negotiate long, even medium amounts of exposure to the sun, he’s vomited three times with only the last being attributable to illness; he’s increasingly asked for eggs (demanding really), milk and cheese though we don’t know that this has any significance. His behavior began a slide a few days ahead of Wednesday’s sleeplessness.
So the frustration. We have no idea what any of this is from, what any thing means. We don’t know if this medication will be “the one”, the one that will give us back the boy it started to how us, or if we’ll have to do another round of switching, adding, weaning in a continuous chess match.
We’re tired of playing chess.
I don’t like it much either.