Wednesday, July 20, 2016

Very Rough Day

Mira had a really rough day today. I went to wake her up this morning and it was obvious that she had just had an intense seizure. She was laying in bed in a sort of post-ictal position, one that is reminiscent of the aftermath of one of her involved tonic-clonic seizures. Her arms were stretched outward and she was still having some small spasms with her arms. Her back was completely soaked and she was staring at the ceiling. I can tell it had just happened, at least within the past 10 minutes. Unfortunately, it is not uncommon for her to have a seizure when waking up, but it is always disconcerting nonetheless. I got her changed, dressed, and in her chair, but based on her expression, you could tell this was potentially going to be an off day for her. It's sometimes difficult to tell immediately after a seizure, so we decided to send her off to school, keeping in mind that with limited summer hours, she was only going to be gone for a portion of the morning.

Sending her off to school was probably not the best decision and I should have read the signs better, as she had another big seizure on the bus. The driver and para told her teacher, who in turn told us. Her day didn't improve much after that, as she was off the entire morning and was having a ton of twitches and jerks at school, throughout most of the morning. We could barely get 1/3 of a bottle in her before her bus arrived, which was red flag that things were not going to go well - Sarah couldn't get her to drink anything the rest of the day. She was either completely rigid or very lethargic, or both, the entire day. We finally managed to get her to drink a full bottle at about 7:00 this evening, which took her about 20 minutes to actually finish. You can tell from the pics above, that her arms were tense, her feet extended and crossed, and she was very clammy - her temperature was completely off. She was extremely quiet and altered, not responding to much of anything visually or any motion. Most of the time she will react to her chair moving, but today she was motionless and void of any recognition with every turn of her chair.

She has had numerous episodes like this in the past and you never know when they are going to happen. Fortunately, she only happened to have 2 tonic-clonics, as she has had as many as 10-12 in a single day in the past when these dystonic episodes surface. We have been keeping a close eye on her, as she has gone through the neurological ringer today. Epilepsy sucks, that's all there is to it.

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