Sept 2011

So, Caleb brought Josiah to the EEG a couple weeks ago, and we have since seen his neurologist. Unfortunatly, the EEG showed that Josiah has a disturbing amount of unusual activity on the left side of his brain the entire time he sleeps. His epilepsy is so severe that he is having hundreds upon hundreds of seizures while he sleeps, however, they don't present symptoms until they spread to the right side of his brain. We see the progression to the right side of the brain quite frequently through the night, his eyes will suddenly fly open, and flick back and forth quickly, and constantly for about a minute, then they close, and he continues sleeping. We always assumed this was a seizure, it was just finally diagnosed through this EEG. While the reults are not the best news, it's progress. Before, we felt like we were seeing all kinds of unusual things while he sleeps, but previous EEGs never captured the activty. This one showed very intense activity. At this point, the options we face in the future are the Ketogenic Diet (We're really hoping to be able to try this, as it seems the least invasive of all our options), we will continue trying new drugs in the meantime (he started Clonazepam last week, but we are not seeing any change in him....only WAY more drooling!!). The other two possibilities presented to us were a corpus collsatomy (splitting the brain down the center to stop the seizures that are occuring on the left from crossing to the right), and the second (although considered a last resort, thank goodness) is a Modified Hemispherectomy, which would be removing the left side of the brain.
Because of the extremety of Josiah's Epilepsy, our neurologist will be presenting his case at a conference of neurologist and epilepsy specialists being held at the end of September. From that, he will present us with their recommendations for how we should treat our beautiful little boy!! Thank you EVERYONE for all your prayers. They truly are felt. God Bless

    Spent the whole day hooked up to this!