Mira's seizures are back with a vengeance. Over the past few weeks, they have been slowly escalating back to where they were, where she was averaging around 40-50 myoclonics a day, along with 3-4 tonic-clonics a week. We had seen some improvements back in July, but she has slowly slipped back into her familiar patterns. Her seizure activity has been pretty steady over the past several years, with slight variations - she always has her occasional positive stretches, with an equal amount of bad ones.
Yesterday however, she had an extremely rough day. She seemed fine when we were getting her ready for school, but by mid-morning at school, she had already had 2-3 tonic-clonics, which her teacher thought was a little out of the ordinary. By the fourth one, she summoned the nurse to get involved and promptly called us. Over the next 45 minutes, she had another 7 tonic-clonics, all ranging from 30 seconds to a minute long, repeating every 5-10 minutes. Her breathing was fine in between all of the seizures, but the fact that she has so many in such a short time frame, was disconcerting and frightening. This was again, a very similar episode, if not worse, than the one she had on her birthday, which marks a significant increase in these episodes this year.
Sarah talked to her teacher and she decided to pick her up at that moment and get her home, then we would consider Diastat to potentially break the clustering. Keep in mind that Mira has never gone into status epilepticus, which is very serious, requiring an immediate response, usually involving a dosage of Diastat (which the school has on hand for Mira) and a prompt call to 911. Not that having clusters of tonic-clonics within such a short period of time isn't concerning, it's the fact that Mira was steadily breathing in between all of them. Sarah had her back at home quickly and back in her own environment, keeping a close eye on her in her chair. She continued to have a constant flow of subtle myoclonics, twitching, and dystonic movements for the next hour or so. After all of the activity subsided, she was sweaty, clammy, and only mildly responsive. We were again on fence for this episode about giving her Diastat, waiting on the sidelines to see if the tonic-clonics resurfaced. Fortunately, they stopped. It was a stressful day and we have been watching her like a hawk since. She has been doing a ton of sleeping so far.
Ironically, I have been re-evaluating this B6 trial, thinking that she should taper down, since she has not had a positive reaction to it, at least the past few weeks. I don't want to completely abandon it, but we are going to definitely taper down. As I stated before, I was very optimistic around 6 weeks in, when Mira seemed to making some great strides, being very vocal and keeping the seizures at bay and/or minimized. It has since fallen apart, thus we are going to begin to slowly taper her down to 100-200mg a day, which is a mild clinical therapeutic dosage, that is less likely to cause potential issues. I am not sure at this point whether the dosage we had her at is making her seizures worse, but it certainly hasn't been helping over the past month. We will wean her own to this lower dosage and keep monitoring. Yesterday was so exhausting for her, but this morning she at least seems to have more energy. She is still a bit clammy and her temperature is off, but at least the major seizure activity has been sidelined for now.