A few days ago I listed that I was counting seizures in my status update on my facebook page. I got a outpouring of concern and kind words.
I wondered what would happen if I said that I was counting seizures in my status update everyday. Would the same people give me the same comments everyday? Would I get new comments from new friends each day? Would people just assume there was a bug in the system and ignore it?
I remember with glaring clarity Dermot's first seizure, it lasted for over two and a half hours and ended in a trip to a the ER and multiple drugs to stop it. My heart was racing, I was shaking uncontrollably while huddled in the corner holding his onesie in my hands while the doctors and nurses worked on him.
Now, nearly three and a half years later I watch Dermot every day. I watch a seizure rudely interrupt a beautiful smile. I watch a seizure destroy his concentration while he plays with a new toy. I watch a seizure intrude his sleep. I watch a seizure jolt his entire body as if he'd been struck by lightning. I watch a seizure remove his personality and leave a blank stare for thirty seconds while drool drips from his lower lip. Every day I watch seizures. Not once a day, not ten times. Too many times to count. I usually stop counting before dinner time. By then my energy is tapped, it's not worth counting another one. After fifty it doesn't make much difference.
My friends ask "what do the doctors say?", the doctors are grasping at straws. There's not a handbook on seizure control and every one's brain is different and every one's seizures react to medications in a different way. I don't blame the doctors anymore and I also don't expect them to know the all the answers either. When the seizures get too bad, I call the doctor, we decide together the next drug to try. I check the side effects online and make an educated guess. We're trying a new one now and weaning off an old one. I'm afraid to call the doctor because neither one of them is working.
So I'm here watching, feeling quite powerless. I just wanted you to know.