We had a very scary moment with Mira on Tuesday afternoon. After a fantastic weekend (2 seizures in three days with none on Sunday) she had 5 seizures within a couple of hours on Tuesday afternoon. After her sixth seizure around 3:30pm, she started twitching and jerking repeatedly for a while afterwards (not uncommon), but then began having what seemed like a status seizure. We are not sure exactly what it was, but it could have been what is referred to as complex partial status epilepticus. She began squeezing and tightening her hands, arms and legs repetitively and consistently every 30-45 seconds.
We didn't want to be too concerned at first, as her breathing wasn't labored and she didn't seem to be in any pain. Although she had been quite distressed after each tonic-clonic ("big") seizure she was really zoned out from the start of this "episode." It became apparent to Sarah after a few minutes that she was having clusters of activity and was staring off repeatedly, tensing her arms and legs over and over.
We called neurology to get a hold of Mira's nurse to try and understand if this was a prolonged seizure or if she was going into status or what. I had left work early and was headed to CMH at that point to pick up Mira's Keotcal and was able to discuss her situation directly with our neurology nurse, Lynn. She told me that it sounded like a status seizure of some sort and recommended administering Diastat regardless, which we have as a rescue/emergency medication. Sarah gave it to her as I was leaving the hospital and her clusters and squeezing stopped almost instantly. This episode went on for about an hour and 15 minutes total.
Needless to say, we have never seen this sort of seizure activity with her before. If there is one thing that is consistent with Mira is that her seizures are inconsistent. Different types, different times, ever changing patterns. We were watching her like a hawk today and ironically, she didn't have a single seizure or episode all day.