Monday, December 26, 2016


Mira has been having a ton of myoclonics and episodes today - she had a cluster of myos this morning (look a lot like classic infantile spasms, minus the eye fluttering) that went on for 30 minutes. We haven't seen that activity for a few weeks, so it caught us off guard a little. She continued to have a lot of startles throughout the day, at all times, with no real pattern to anything. Her exposure to the toy has been minimal today, since we had been seeing so much seizure activity. A few times today, she startled so hard that she knocked the bottle out of her mouth and sent it flying across the floor - it scares the crap out of me when that happens, and makes us walk on egg shells every time she has something to drink. We went for a walk this afternoon, which Mira was super excited about, but she continued to have these episodes while we were out - arm stiffening, going completely rigid, and favoring her left side, by slowly locking her position in that direction - her arms completely extended and completely unresponsive. These episodes happened all day long, with no apparent trigger. The two times she actually had her toy in front of her, we didn't see anything, so we don't think there was anything sparking seizure activity with her as a result of playing with it. If there's one thing that has been consistent about Mira's epilepsy, is that it has always been inconsistent - you never know what to expect, every single day.

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