This blog is devoted to telling my mom's journey with AutoImmune Encephalitis. My sister and I scoured the internet looking for information about her condition. We found very little. What we did find did not document well the day to day experiences -- and what to expect -- especially as our mom was suffering in the acute phase of the illness. I hope you find this information useful. I also hope it fills you with some hope, in what I know, can be a very trying time.
Monday, November 23, 2015
Day 1, November 23, Monday
My dad said my mom woke up with a headache, but seemed her typical self in the morning. They went for their usual morning walk. Then my mom did some work on her computer and around the house, and made lunch. After lunch, about 1pm, they went to the store. On the way to the store my mom was acting somewhat confused, according to my dad. He said she got out her earphones as if they were going to the gym, but they were going to the store. My dad asker her if she was OK, and she said yes, but he said, her behavior was off and it worried him.
At the store my dad said that my mom seemed confused at the checkout counter. He paid for the item they purchased, and instead of walking out of the store with him, she stood at the counter waiting to pay for the item they had just purchased. He thought she might be having a stroke so he drove her straight to the ER. She walked fine to the car, but once they got the ER, she had some trouble getting out of the car, although she walked into the ER with my dad’s assistance.
At 3:30pm my dad called me to say that the hospital thought my mom was having a major stroke, and they were sending her by ambulance to a different hospital where they top-rated stroke facilities. A CT scan at the hospital, however, caused the medical staff to question the original stroke diagnosis. The scan showed some sort of fairly large lesion on both the temporal and frontal lobes, which could be a blot clot/hemorrhaging, but could also be something else. So they sent her for a dye contrast MRI. Then she had her first (of several) grand mal seizures.
By the time I arrived the hospital at 11:30pm (I had to travel half across the country), my mom was in the ICU and hooked up to saline, oxygen, heart monitor, anti-seizure, BP, and oxygen monitor, plus other things. Her temp was slightly elevated (99F). She was fighting to get out of the bed, but incoherent. Her left side was flaccid, and she kept having mini seizures. My dad and I spent most of the night trying to keep her from fighting herself off of the bed. Throughout the night her blood pressure varied sporadically from very high to very low, and her pulse remained high.
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