I don't want to leave anybody hanging that commonly checks this blog for updates on Bennett. You haven't seen anything for a couple of days because I haven't really had the emotional energy to update or anything else. We need a positive turning point, something to cling to and place some hope on, and we aren't getting it yet.
As of yesterday, a second medication is being added to the mix to try and control his seizures. He still has not had a seizure free day since February 12th. We don't know if the new drug, Topamax, in conjunction with the ACTH, will have the desired effect. Nobody knows. It's trial and error with rare seizure disorders. Don't be fooled, Epilepsy is a serious, SERIOUS issue in the world.
There is a meeting scheduled next week with an Epileptologist to evaluate him further and start opening discussions (I think) for surgical options. An Epileptologist is a Neurologist with more training specifically in the field of Epilepsy.
Anyway, that's it. I just don't have anything to offer here right now. We are in a bad place this week, it's hard to feel anything but bad, scared, worried, angry and tired. Getting out of bed takes a Herculean effort sometimes. Some days are better than others, but when you have a few bad days in a row all strung together it kicks you right in the teeth.