4 weeks seizure free

We've still seen no sign at all of any seizure activity since June 21. He hasn't had to wear his helmet for 2 weeks now. It's amazing.

We went to see John's VNS surgeon and his neurologist yesterday. The visit with the surgeon (actually just his nurse) was just to make sure that everything was OK. The cuts are healing fine so it was a quick appointment. They were really happy to see John doing so well. I don't think they get much of a chance to see the kids after they put the VNS in, so I think they were really happy to have the chance to see how they changed his life.

We made the appt. with the neurologist because I was a bit concerned about the duty cycle of John's VNS, and we had some questions about the Lamictal, etc. When we told the doctor that John was only on 75mg of Lamictal, and hasn't had a seizure in 4 weeks, he shook his head in disbelief. He really looked over the charts that I had brought in, as I don't think he fully believed himself that the VNS would have such a dramatic effect. Before John got his VNS, we had asked if he had any patients that had a very successful outcome. He said there was one kid who went from 300 to 30 seizures per day. I think John might now be his best example of the possiblities.
I brought in the physicians manual for the VNS, and had the parts highlighted that showed that a duty cycle of over 50% was not advised (John's is 56%). He said that he's never heard of a single case of nerve damage, and that Cyberonics knows what he is doing, and that many kids are on an even greater duty cycle, etc. But, you couldn't argue with what that manual said, so he is going to call Cyberonics and we'll find out later this week what they say. I really hope that they can tell us that his current settings are safe. We don't want to touch anything if we don't have to.
So, he didn't change the settings on the VNS, but if Cyberonics says his current settings are risky, we can get them changed at any time. He did a lead test of the unit, and it was a very good 2. The battery was at 3. It runs out at 7. At first I thought that sounded terrible, but he assured me that they usually start at 2, so his is fine. We expect it to last about 2 years at the current setting.
We asked at what point we could consider weaning the Lamictal. We were expecting him to say that we should never wean it, or wait at least 6 months. But, I think he believes (like we do) that the VNS is solely responsible for John's improvement. So, he said we could start weaning in 1 month and take out 1/2 pill per week. Geez, even I'm not comfortable with an aggressive schedule like that. So, now we know we can wean that with the doctors blessings whenever we are comfortable doing so. I think we'll wait a few months, then go much more slowly then he mentioned.
He said we didn't need to see him again in 6 months. Woohoo!

John also started his preschool today. Yoshie will stay with him for the first couple of classes, but since John has a 1 on 1 aide hopefully Yoshie will be able to let him stay by himself after awhile.

We are also going to get John some speech therapy now that I think he is capable of learning again. I sent the list of approved therapists to our doctor so that he could give us a recommendation. Hopefully we can get that started pretty soon.