Ever since I posted a status update about Liya's seizure activity on Facebook, I have had a ton of emails and phone calls from startled friends and family.
So I figured I should tell the story from the beginning to put things in perspective.
When we were matched with Liya back in the summer of 2009, we knew only that she had lost all of her toes to frostbite...and that she had some right-sided weakness. The doctor who reviewed her file mentioned that she might have had a stroke that caused the weakness. So we were prepared for that issue as well. We researched hemiparesis and hemiplegic cerebral palsy, and learned that a large percentage of CP kids also develop seizures due to damage to certain areas of the brain. We hoped that Liya wouldn't be one of them.
Shortly after meeting Liya, and while still in China, we noticed she would do this "shiver" thing. She would immediately realize she did it, and we soon nicknamed these episodes "Jerks". We didn't want to have her say they were seizures until we knew in fact they were.
So for months once home, Liya would let us know whenever she "Jerked". It happened occasionally, maybe once a week or so. I took her to the neurologist, and he didn't seem very concerned. I pushed the issue, and he finally wrote a prescription for an EEG.
Of course, Murphy's Law had to happen, and we found ourselves without medical insurance for several months. During that time, Liya started having different episodes. She would freeze wherever she was, put her hands over her mouth and then run for whoever was closest to her, screaming as if she had seen a ghost! We weren't sure if it was seizure activity or maybe she thought she was going to throw up. These episodes soon took over as the more common ones, happening weekly.
About a month ago, Liya had several episodes in just a few hours at school. It so happened that she had JUST been accepted into Children's Medical Services, a government funded insurance...like Medicaid, but for kids with chronic medical conditions.
So I got that EEG scheduled, and that is where we are now. A few weeks ago Liya started a new type of episode, where she tenses up her right arm, is unresponsive, and her eyes cross. She does not know that those ones occur and always just picks up what she was doing before it happened.
Tonight, she had an episode where both of her hands shook uncontrollably for about 15 seconds. This is the first one we've noticed where BOTH sides of her body were involved.
Liya's Neurologist has been out of town until today, and he will be looking at her EEG tomorrow. I am pretty sure that the results will be abnormal, and that I will be getting a call tomorrow. If this EEG is normal, I will be getting a second opinion.
I will update here as soon as I know something!!