First Tonic/clonic

Thursday night, I was all ready to finally post a positive report. He had 4 days of improving seizure numbers. Thursday, he had the fewest number of seizures in a day since last September. Friday morning started pretty good. He was in good spirits and only had a couple of small seizures in the morning. At about 7:45 he fell over sideways and I caught him. He started to convulse, and seemed to try to come out of it a couple of times in the first 5-10 seconds but couldn't quite stop it. He continued to shake violently as I carried him into the living room and eventually outside. He wasn't stopping. At this point, his lips were blue, he was foaming at the mouth, and his face looked completely lifeless. We always knew that a Grand Mal seizure was likely to happen at some point, and I was prepared for the prolonged convulsions. However, I was not prepared for the look on his face. I really thought he was going to die right there. Yoshie had already dialed 911 and I took over the phone while Yoshie took John. At this point, he wasn't shaking anymore, but was completely limp and lifeless. Thankfully, his color started to come back pretty quickly. The ambulance and fire engine arrived in just a few minutes and by the time they got here he was sound asleep on our living room floor. There were 8-10 paramedics in our living room, and they gave John some oxygen and checked his glucose levels, etc. Everything was fine, but since this was his first generalized tonic/clonic (GTC) they wanted to take him to the hospital for observation. Yoshie rode with John in the ambulance. Many of our neighbors had gathered in our driveway and they all volunteered to help out with Maya. So, Maya actually got to school as normal while I drove to the hospital.
John was still asleep when I got to the hospital, but he woke up a short time later. Once he woke up, he seemed completely back to himself. So, we were soon able to leave. I think we were home by 9:30am.
At first, I thought John's convulsions lasted about 2 minutes, and that is what I told the paramedics. Yoshie has since convinced me that the actual convulsions probably lasted more like 75 seconds, and he was limp for another minute after that. It seemed like an eternity, though. And, I never even thought to use the VNS magnet. Doh!
I talked to our neurologist on Friday, and he didn't want to change anything with the meds right now. The reason being that the NUMBER of seizures that John is having is greatly improved. However, I still think the total energy released from the seizures is the same. He thinks that the tonic/clonics are just a progression of John's epilepsy. I feel like the coincidence is just too great that this happened 5 days after increasing his Lamictal to 125mg.
Since Friday, John has had a number of seizures that seemed like they were going to turn into full blown GTCs again, but he either came out of them after a few seconds, or we were able to stop them with the VNS magnet. Still, they are super scary, and we decided tonight that we'd rather have more smaller seizures, if given the choice. So, against the doctors suggestion, we took out 25mg of his Lamictal today. There is a decent chance that the decrease in seizure numbers is due to the VNS, and not to Lamictal at all. We want to know this for sure before we risk another seizure like that. So, we may end up going back up on the Lamictal in the future, but for now I want to see what he is like at 50mg/day. It will take some time to get down to 50mg/day, and we expect more withdrawal seizures along the way. But, we're crossing our fingers that the number of seizures remains low, while the severity improves. It could happen, but we've also learned not to get too optimistic.