Well, it's not really good news. The EEG shows brain activity all over the place when seizures occur, so surgery is definitely out. It also showed "sub-clinical" seizures that we do not know are occurring.
The doctors at UCSF tell us that it is not the seizures that are causing James to waste away, but rather something that has not yet been discovered causing the wasting AND the seizures. We were encouraged to work with our internist to do a "complete workup", in an attempt to uncover whatever the problem is. As we look back, we realize that the decline has been going on since early last summer. We could have a very long road ahead in finding the problem. I am not sure I want to know the problem, if it is something that should have been easily caught and fixed long ago, but that's just me.
The only problem now is that James does not have an internist that he has ever seen. He had one he had seen a few times, but she is gone, and he was reassigned to someone else. We are using our various contacts to try and find a really capable doctor to spearhead this effort. We've been very cooperative with the assignment of PCPs over the years, but now is not the time to accept the most recently hired doctor from the third world.
Mary tells me James was more awake and a little stronger today. He also had "a major #2" according to Mary, which I know is as exciting for you as it is for me. Perhaps the new formula is helping. James went off all his old meds and on to two that are known to be good for his kind of seizures. No seizures today, but the old drugs aren't out of his system yet.
James may be in UCSF several days next week, so I am probably taking over hospital sitting duty. I'm not really very good at that, but I will do my best. Pray for us all, as always. B
