New neurologist

We finally got in to see John's new neurologist. This was at a OHSU, so we first were seen by a couple of the residents. Since this was the first time for John to be seen here, we had to give the whole history again. Once the actual neurologist came in, it was obvious that he was very busy. I think they are way overbooked and trying to fit in too many patients. We had lots of questions, and wanted the VNS checked, etc. so we probably took more than our alotted time. He seemed like a good doctor, and was open to everything we talked about. His main point after looking over all of our records was that John has had excellent care and he had agreed with everything that we had tried.
We asked how he would classify John's condition and he said probably Lennox-Gastaut or maybe MAE, but that there was so much variance in those syndromes that classifying wasn't important. I told him it was sort of important for us since MAE kids usually grow out of the condition and LGS kids generally deteriorate. But, his point was that John didn't fit nicely into any syndrome and it wouldn't change his treatment so we really shouldn't worry about it. I will pursue this further, as I think there ARE differences in the way those syndromes are treated.
His recommendation was to try felbatol again, but in liquid form this time. John tried it for a few weeks last year and vomited after most doses and it never seemed to do anything for the seizures. He also suggested another benzo, which we are not interested in. So, we agreed to the felbatol. We got the dosing schedule which is starting him on a very small dose and increasing very gradually. John will also remain on his 100mg/day of Lamictal.
We also had the VNS interrogated and it checked out fine. We're all a little surprised that it is still going strong, but definately not complaining. We were expecting to have to have the generator replaced this year because the battery should be wearing out.
We also scheduled an EEG for July 13, and will schedule another MRI soon after that.
Yoshie asked if it was OK for John to fly on an airplane and he said it was. I'm not sure the other passengers would like that answer, as I think John would cause quite a commotion on an airplane. :)
We also mentioned the high aluminum that had been found with a hair analysis. He said he had never heard of high aluminum causing seizures so that was basically brushed off.
Finally, we asked about John's absence of IgA when he was tested for celiac last year during his terrible constipation issues. He suggested that we follow up on that and have John re-tested now that he isn't on keto anymore. He was going to give us some references for GI doctors but failed to do so.