What's next???

Well, today Nathan had his most significant seizure to date. He woke up this morning and before even getting out of bed had a sz that knocked him out. After sleeping it off, he went to school where he had a sz that lasted for close to 2 minutes (they're usually 5-10 seconds). Swiping him didn't do anything. He passed out again for about 2 hours. After waking, he had another and passed out again.

I paged the dr when I found this all out. We're increasing the felbatol (felbamate) but also Dr. B said that she presented him in conference today as a surgical candidate. Some of the dr's are still convinced they're primary generalized sz's but others still think they're complex partials that secondary generalize almost immediately. We will go back in the hospital for another 3 days (or so they always say) to do another VEEG as well as an ictal spect -- they inject some dye into him during a sz to track it in his brain. Who knows how long that will take. Hopefully not 3 days though.

So, then based on those results, we may be heading back in. If/when we do, it will be to place a grid actually on and in his brain. This will further show where sz's are originating. If they can pinpoint the origin, they will go in during that stay and do the resection surgery. This could possibly happen a month after the ictal spect hospital stay.

If he is not a candidate for a resection surgery, we either go to the Cleveland Clinic for a second opinion (and another week's worth of testing) or we go to a corpus collosotomy -- where they severe the connection between the two hemisphere's in an attempt to stop the generalization and salvage at least 1/2 of his brain.

I can't fucking believe I'm typing the words out that I am. I can't believe this is happening to my baby. Why isn't anything working?