Friday, February 03, 2017
So Mo has had seizures since an early age. She was around four years old when we realized this, she had a grand mal in front of her mother as I was on the way home from taking Em to a piano lesson. I came home to find the paramedics parked with lights going in front of my driveway. Fifteen or sixteen years later, it's still an issue.
So after many neurologists over many years we finally had one who had something new to say. Do a video EEG, maybe upwards of a week, three to seven days, hooked up to an EEG the whole time. Monitored on video the whole time. Shit glued to her head the whole time. In a hospital room the whole time. Off her meds to make sure she seizes, so they can figure out what parts of the brain are involved, how much she seizes and in what ways (grand mal, partial, absence, etc.)
Thanks to autism, this is a person with tactile issues. And stubborn, too, I really wondered if she'd tolerate the wires glued to her for so long. But she did. She did a lot of YouTube, a lot of adult coloring books, and so on. And she seized. Boy, oh boy, did she seize.
We haven't had the follow up visit with the doc, but what we know so far is she's not a candidate for the surgeries and implants the doc was hopeful about, it's really the whole brain. I'm not sure how convinced I am of some of the implant and surgery efficacy and safety so I guess that lets me off the hook for hard decisions. She's a somewhat better candidate for a nerve stimulator but from what we hear on that front the efficacy is iffy and slow and the risks are pretty frightening so we're not likely to pursue any of that at this point. I wasn't there at the time but the seizure that convinced them they had enough data to start putting her meds back in place, I guess it was a dramatic one. Oxygen, suction, after four days without her meds her brain went full on riot.
So I'm off the hook for hard decisions up to a point but then again, it's disappointing to find out there's still no silver bullet for this.
Posted by Chixulub at 8:41 PM