So come travel back with me to the morning of Thursday, June 16th. I wake up in bed with my arm around Lily. I notice next o her it's wet. Well that's odd, I think. She has only had maybe one or two accidents in the past year. So I glace at her and see that she is holding the headboard (we have a metal sleigh bed frame), so I think ok she's awake. I pop up to say hi to her and what do I find? Her other hand is frozen halfway to the headboard and her eyes are wide open and unblinking. Yeah, she was having a seizure! I called her name twice to be sure (yeah I know, but you gotta understand she has only ever had seizures at night, within an hour of falling asleep. NEVER EVER any other time, so I was in a bit of shock and disbelief.) So of course I don't have a phone upstairs with me because that would just make waaaaaaay to much sense. So I dash downstairs, grab the phone and dash back up. I guess. I can't remember seeing the kitchen (where the phone lives) or the steps, etc. I just remember being gone from the room for a moment and then being back with the phone. Funny what your brain does in an emergency situation. So I call 911 while peeling her tightly gripped fingers off the headboard. I carried her downstairs (no easy task, her body was stiff as a board! Something else that was new!). I put her on the floor and yelled to CJ to hold her on her side. He couldn't understand why. lol Poor kid had been asleep and had no idea what was going on. So I said she is having a seizures and dashed into the kitchen to get her Diastat. I gave her the Diastat and just a pair of minute later our wonderful guys (the Green Emt's) walked in. 20 seconds after that Lily's seizure ended. About 5 minutes if I did indeed wake up when it first started. Unfortunately we will never know. I can only hope that I did.
So what's this all mean? Well, first Lily has never ever had a seizure in the morning. 2. What's up with this stiffness? That has never ever happened. Not constant. I mean she has had one or two seizures that she has gone stiff for a few secs and then back to limp but never for the whole thing. So ok we got new stuff. So the good points, no vomiting, no hyperventilating, she breathed fine through the whole thing (I bet a whole bunch better than I did!!).
So what's the same? Still was a partial complex seizure and was still related to sleeping, in one form or another.
So here's the deal.....I want her to have another EEG. I understand that they are the same type of seizures and still related to sleep but but but the presentation was different as was the timing. So something is changing. Why am I telling you this?? Because her Neuro doesn't feel it is necessary at this time. It has been over a year since her one and only EEG. Things do seem to be changing and guess what?? I want another one.
So here's how its going to roll. On July 11th, Lily has an appointment with her Neuro. If she will not give Lily an EEG then I am sure the Cleveland Clinic will be more than happy to. End of story. And if the EEG comes back and nothing has changed, then her Neuro is more than welcome to dance around and sing I was right, I was right. lol
And Lily? Well she is good now. She actually had been doing really good in the ER after a few hours of sleep. She was finally up, talking, we all had her laughing, then her hands started to tremble. They were just getting ready to send us home too. But at that point they said let's keep her overnight. So we stayed and she did fine. We are home today and she is back to her normal self.
Tracy and I? Yeah, we are jumpy as all get out. With this new timing twist, well it's gonna be ugly for awhile. September cannot get her soon enough to get her seizure alert dog!! If she continues to follow her breakthrough pattern, the dog should be here with us at least a month before the next one. But epilepsy is a fickle disease and it is very rarely predictable. So we will just have to keep our fingers crossed and live without a lot of sleep!
Thank you for reading!!
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