There is a great series of articles about epilepsy in Newsweek this week. The first article explains how common epilepsy is and that research for a cure is underfunded. You should read it... you can get it on-line at www.newsweek.com. It's worth reading.
It was interesting because I understood everything they were talking about. All the different drugs, the Keto diet, the VNS, brain surgery and of course, the seizures. This paragraph from Jon Meacham's article
A Storm in the Brain resonates with me, with us so much:
Though the most overt examples of discrimination and demonization have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large. Why? One reason is that advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition. (Which, for two thirds of patients, it is. But that still leaves a third for whom it is not.) It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.
I think about it everyday. I worry everyday because I know that epilepsy could take Damonito's life any day.
That said, he's doing well. We're seeing a few more drop seizures but he's still having far fewer seizures than a year ago. Clozabam is helping him tremendously. Changing the battery in the VNS has proven effective, it seems to be managing the seizures he was having in his sleep. He's having about one grand mal per week. He's doing ok.
And he lost his other front tooth. He's pretty cute.
