The good part of this story was that Rose had an aura. She knew something was coming, so she went inside and lay on the couch. Rose had auras during what we call “Phase One” of her epilepsy. She could point to her mouth to let us know a seizure was coming. We did not know how lucky we were then.
The period we call “Phase Two” had no auras. Rose was thrown to the ground with great force and no warning. Her arms were stiff so that her falls were not broken. Many injuries occurred due to the sudden seizure onset and gravity.
We usually raised a dosage of a drug after each seizure until the levels got high enough to know the drug would not work or, even worse, Rose went toxic on that drug. This happened several times. It was just as scary as seizures. We felt we were poisoning her while trying to save her.
This is why it is so important to write down every change in drugs and every change in your child. At some point, you may be too distressed to recall important information. I spent many days in a panicked fog. I could trust my notes but not my memory.
If you can identify aura symptoms and watch for them, you can prevent injuries from falling. Rose eventually described hers as a “tornado in her mouth.”
I know this is a lot of things to remember but I want to be thorough. I am trying to cover details that I did not include in our book.
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