Tuesday, October 8, 2019

Roller coaster

Rory took a selfie with her EEG hookups:

It was interesting to me that the whole EEG setup includes video monitoring:

She had several more "events" during the night, which was exactly what they were hoping for.

The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.

So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.

We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.

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