I've probably mentioned this before in a previous posts, but our days are often reminiscent of the movie 'Groundhog Day'. This is the third day in a row where Mira has woken up, been very irritable, being cranky just long enough to drink a bottle for breakfast, then went straight back to bed. Like clockwork, was very irritable for most of the morning, then took a really long nap again.
Only today, right before lunch, she woke up, was happy as can be, for about 20 minutes. She was vocalizing and laughing in her bed for a solid 15 minutes, then quieted down and became fussy right afterward. I got her out of bed, had something to eat with her, then she proceeded to have a ton of myoclonic seizures, probably 20-30 within about 15 minutes. Fussy again, then back to bed. Then a quick cat nap. Then up again, because she is irritable an hour later. Repeat again.
She continued to have multiple myoclonic episodes for another 10 minutes, then went into a full-blown tonic-clonic seizure, which lasted about 30 seconds. It was just a matter of time. When she shifts the mood gears, peaking from ecstatic happiness to wailing despair and back again, she usually caps it all off with a big seizure. Then she another tonic-clonic 90 minutes later.
She is now postictal and lethargic, which is typical for her after a draining seizure. She averages anywhere from 4-8 of these tonic-clonics a week, most of them occurring while transitioning out of a myoclonic seizure. It's difficult to explain unless you witness these brief myoclonics. They will scare the daylights out of you, if you aren't used to seeing or hearing them. Mira's entire body will very unexpectedly and rapidly go completely rigid, her arms project outward, while her body slumps forward, and her head always, without fail, turns to the left side.
For those parents who have seen Infantile Spasms (IS) you will know exactly what I am describing. It looks almost identical to a jackknife seizure, but lasts slightly longer. All of this happens in the first half-second, with the total seizure only lasting 4-5 seconds, and all without any warning. Most of the time when she has them, she is in her chair, with her tray in front of her. Because it happens so unexpectedly and with her arms or toy slamming against the tray when it starts, it will undoubtedly get your attention. She is able to slowly transition back to what she was doing within a few seconds after it is over. She rarely goes a day without have one and on a bad day will have 100+ myoclonics a day.
Every day Mira deals with this relentless pattern of myoclonics, tonic-clonics, and bouts of dystonia. Every, single, day she lives with this. Catastrophic epilepsy sucks. Nothing more. Nothing less.