The Seizure Monster

I know now why people call it the "seizure monster". After I became more familiar with IS and Epilepsy I joined some email groups and started reading blogs of other parents whose kids are similarly affected. They all referred to the "seizure monster". The idea of something taking over our children for periods of time and not allowing them to be themselves is terrifying. To look at Oliver's face while he is having seizures lately I know he is absolutely being attacked by a monster. His whole face distorts. These past few seizures this weekend are so much more intense that he's biting his own tongue each time, leaving bloody spots all over. His legs shake, his arms stiffen, he screeches and his eyes get wide. He looks like a monster. I know it's not him but the seizure that's causing the change but it is the scariest thing I've had to witness in my life. I think this means his seizures are changing and I'm not quite sure what that means for us....are the new seizure types going to be easier to control or more difficult?

We missed our neuro appt last Wednesday due to the blizzard (we were ready to shovel out and go but the hospital cancelled all appts for the day). So now we are waiting to hear a new date/time to go. The plan was to take videos in for the doctor to look at so he could see some of the new seizures we are witnessing. We are just hoping we can get in soon so we can form a new plan and get some guidance.

Oliver finished his clonazepam on Thursday night, and I'm hoping these seizures are withdrawal seizures and will settle down once the drug is out of his system...but of course we use the same drug as our rescue med for prolonged seizures and I've had to give him a full pill twice in the past 3 days. Also, if the seizures are changing then there may not be any reason to keep him on the Sabril since that's an IS drug.

I am getting closer to being at peace with having a child with such severe needs that he'll never feed himself, dress himself, hold his head up or crawl or communicate. As sad as that is, it's something I've been getting better at handling recently. But these seizures....I can't handle them. I just can't. They are so hard to watch. They are violent and painful and I cannot even begin to imagine how Oliver feels when they attack him. When Tobin gets scared at night and starts talking about monsters, I always reassure him that monster aren't real. They are only pretend and something people made up for movies and tv shows. But lately...I'm not so sure. There is a monster living inside of my baby and I want him to go away.