Last visit with neurologist

We had our last visit with the neurologist on Tuesday. All went well.

• John's lamictal level hasn't made it to their office yet, so we are leaving the dose as-is for the time being. He'd like to see the lamictal level in the 7-10 mcg/ml range, and possibly as high as 12 mcg/ml if he can tolerate it. The therapeutic range is 5-13 mcg/ml, but really it is just a matter of pushing it up until he can't tolerate it. We've never had his level checked, so we really have no idea what it is at. We'll re-evaluate as soon as we get the level.
  
• We didn't make any changes to the VNS settings either. He did get it interrogated (see the picture) to make sure the settings were what we wanted and to verify that it was still going strong. He estimated that the VNS still has 2 years of life left which would be amazing as we originally were expecting only about 12-18 months due to his settings. Even though there is no pain involved, John hates having to stay still that long and eventually we had to hold him down on the table (while he screamed) just to keep him still.

• We're holding off on the referral to go to UCLA. I told him that our fear is that our new neurologist will not be so willing to make a referral, and he said that our fears were unfounded and it shouldn't be a problem if we want to pursue this later.
• He gave us a referral to the OHSU ped neurology team, with strong wording so it wouldn't be a problem for us to actually get in. He recommended that John be evaluated by the OHSU Epilepsy Surgery Program.
• He admitted to us that he has suspected that John may indeed have a focal point to these seizures. This came as a big surprise to us, as we've been told all along (by 3 neurologists) that John did not have a focal point, except the one time when he was having those wierd "mouth-opening" seizures. Of course this is huge news, and keeps our hopes alive that we still may be able to beat this thing. He said that John's seizures appear to him to come from the left hemisphere, and his latest EEG in January confirmed this. I'm not sure why he decided not to mention this to us before. He said that OHSU will likely jump on John's case.
• I was able to call and get an appt. with OHSU for June. That wasn't nearly as bad as I had thought. I guess return appointments can take many months, but I suspect we'll get scheduled for another round of tests after our first visit. We'll welcome that, of course.