Post by Griff on Dec 2, 2015 19:21:45 GMT -5
Okay so I mentioned before that my sister has a disease called Rasmussen's encephalitis. What that is simply put is a disease that attacks the brain and causes seizures, loss of motor skills, and paralysis of one side of the body. It usually starts in one hemisphere of the brain but it can spread.
My sister was diagnosed with this when she was ten years old and to prevent the disease from progressing, they removed the diseased hemisphere of her brain. Unfortunately, it had already spread to the other hemisphere before the surgery and diagnosis. The reason it took them so long to decide the hemisphere needed to be removed was because her seizures would not show up on the EEG.
Her disease has been pretty well held off by medicines but recently shes been having very strange symptoms. Her head gets visibly puffy and swollen, her speech becomes slurred, she starts having fairly intense seizures, and she gets VERY confused. She can normally function at about a 7 year olds level; she can carry a conversation that makes sense for the most part. When she has an "episode" she will hallucinate, forget things, and remember things that never happened. So, on Saturday, she had a bad seizure in the middle of the night and we took her to the ER. While there she was confused, she kept insisting that there was a stuffed unicorn on the table and was mad nobody would get it for her.. So they decided to fly her out to a hospital four hours away that could better care for her. We couldn't see her original neurologist because she is over 18 years old now and they only saw children.
Anyway, me and my dad stayed behind and my mom went with her. They had her hooked up to an EEG and monitored her via camera. Meanwhile, my mom had to stay in the tiny room with her, she couldn't really leave for long periods of time and there was only a plastic chair for her to sit on. She wasnt allowed to use the bathroom in the room, she barely ate because the cafeteria was expensive and gross (if youve ever had hospital food you'd understand), and she barely got any sleep because she only had the plastic chair to sit on and nothing else.
Then, finally two days later, they came to a conclusion on what was going on with my sister. They decided the episodes where behavioral and suggested they take her off some of the meds that are literally keeping her alive and that we get family counseling. Naturally, we where all pissed. Yeah, sure, shes upset so she convulses in the middle of the night and hallucinates. Makes perfect sense.
They came to that conclusion because they didnt see seizures on the EEG which is literally why the disease progressed so far! The neurologist wouldnt hear it when we explained that and simply said "thank you for your insight" and proceeded to tell my mom about weaning her off her medications (which we arent doing). WHY ARE THESE PEOPLE SO FREAKING BULL-HEADED.
So, everyones home now and my sister is doing ok, she hasnt had an "episode" in a while so hopefully it doesn't happen again soon.
My sister was diagnosed with this when she was ten years old and to prevent the disease from progressing, they removed the diseased hemisphere of her brain. Unfortunately, it had already spread to the other hemisphere before the surgery and diagnosis. The reason it took them so long to decide the hemisphere needed to be removed was because her seizures would not show up on the EEG.
Her disease has been pretty well held off by medicines but recently shes been having very strange symptoms. Her head gets visibly puffy and swollen, her speech becomes slurred, she starts having fairly intense seizures, and she gets VERY confused. She can normally function at about a 7 year olds level; she can carry a conversation that makes sense for the most part. When she has an "episode" she will hallucinate, forget things, and remember things that never happened. So, on Saturday, she had a bad seizure in the middle of the night and we took her to the ER. While there she was confused, she kept insisting that there was a stuffed unicorn on the table and was mad nobody would get it for her.. So they decided to fly her out to a hospital four hours away that could better care for her. We couldn't see her original neurologist because she is over 18 years old now and they only saw children.
Anyway, me and my dad stayed behind and my mom went with her. They had her hooked up to an EEG and monitored her via camera. Meanwhile, my mom had to stay in the tiny room with her, she couldn't really leave for long periods of time and there was only a plastic chair for her to sit on. She wasnt allowed to use the bathroom in the room, she barely ate because the cafeteria was expensive and gross (if youve ever had hospital food you'd understand), and she barely got any sleep because she only had the plastic chair to sit on and nothing else.
Then, finally two days later, they came to a conclusion on what was going on with my sister. They decided the episodes where behavioral and suggested they take her off some of the meds that are literally keeping her alive and that we get family counseling. Naturally, we where all pissed. Yeah, sure, shes upset so she convulses in the middle of the night and hallucinates. Makes perfect sense.
They came to that conclusion because they didnt see seizures on the EEG which is literally why the disease progressed so far! The neurologist wouldnt hear it when we explained that and simply said "thank you for your insight" and proceeded to tell my mom about weaning her off her medications (which we arent doing). WHY ARE THESE PEOPLE SO FREAKING BULL-HEADED.
So, everyones home now and my sister is doing ok, she hasnt had an "episode" in a while so hopefully it doesn't happen again soon.