The ER is about the last place I want my little immunosuppressed boy to be. Unfortunately, that's where he ended up both Friday night and again Saturday morning. It would seem the seizure monster has returned. We have been seeing odd things for a month, but no one could really pin it down to seizures. The neuro took a look at the video, and said it just looked behavioral to him. Friday night the staff at Alex's home took him to the ER after it looked like he was being "zapped" every 5 seconds for about 30 minutes. I arrived shortly after they were finally put into a room to wait for the doctor. At this time he had been seizing for over an hour. I got some video of him, so I could show his neuro, then went out and demanded that he been seen by a doctor as he'd been having a cluster of tonic seizures for over an hour. He was clammy, sweating, and terrified.
Of course, the doctor said he'd never seen a seizure look like that, and it looked behavioral to him (just like the paramedics and ER doc down in Medford when he was seen for this same thing almost a year ago). I'm so sorry, but he's beet red and exhausted because his whole body has been majorly tensing up every 5 seconds for an hour and a half now. It's not something he's choosing to do, so give him something to stop it! I don't care what you call it. It just needs to stop! They got an IV in, and finally gave him 1mg of Ativan (an adult dose). It didn't touch him or the seizure, and I let them know he'd likely need 3-4mg of Ativan to get it to stop. After 15 more minutes, they came in and gave another 1mg dose, which eased the intensity of the seizure, but didn't completely stop it. Finally, once they gave him the 3rd mg, it was over.
Saturday, he woke up and started again. The staff followed the doctor's orders from the night before: gave him 1mg Ativan and waited 30 minutes, then gave him another 1mg. He was still seizing, so they packed him up and sent him off to the ER. By the time Jeremy got to the ER, Alex was pretty sedated and no longer seizing. They just needed to have waited a bit longer after the second dose for it to kick in.
Today, he seemed pretty tired and sore...but no trips to the ER. No weird tonic clusters. Got a few smiles out of him, but for the most part he seemed wiped out.
So, went to Google and did a little research. Wondering if he has SSMA seizures. Apparently it's commonly misdiagnosed, due to the abnormal presentation (no loss of consciousness and lack of postictal confusion). Sounds just like what Alex is doing, and why they all think it's behavioral.
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