What I know about epilepsy, I know mostly from experience. I love a child who has symptomatic occipital epilepsy secondary to neonatal hypoglycemia. Nobody told me its name, I had to look it up. The most my doctor told me was that he has epilepsy. A neurologist once showed me an MRI scan, and pointed out a bright spider-web-y thing on his occipital lobes, which was pretty scary looking. That doctor asked if my son could see. As it turns out, he can.
I don't know much, but I know how to read. I read bulletins, support sites, studies and scholarly articles. I hope, in this blog, to share my experiences and my reading with...well...with anyone who will listen.
I know what my doctors would like me to know. They would like for me to know that my son has epilepsy. They would like me to know that he might outgrow it and he might not, that he should have his medications on time, and that his caregivers should know how to give him the diastat. They would like for me to know that a seizure that lasts longer than 5 minutes is dangerous, and that his anti-convulsant medication has a favorable side effects profile.
I know a few things they may not be comfortable with. For instance, when I asked my doctor "Is it true that nocturnal seizures with vomiting are characteristic of occipital epilepsy?", I think I heard a little hitch in her breathing. When I said "I also read that this type of epilepsy is sometimes hard to control with medication", she said "Where are you reading this stuff?"
When I told her I was reading academic journal articles, she told me I should read Epilepsy.com. I do, and I recommend it, but it is not the whole story. Not by a long shot.