So Tired

We are home and at least 3/4 of us are very grumpy. The trip went fairly smoothly--thanks so much for the prayers. It was a reaaalllly long day, but I'll try to summarize and hit the highlights. Caleigh's EEG was very difficult this morning. It took over 2 hours due to some problems with the leads staying in the right place and a screaming baby down the hall. Caleigh usually falls right to sleep but today that was not gonna happen. They were able to see that her seizure activity has not decreased at all and that she had one episode that lasted 35 seconds--which is a long time to be unconscious while the world is still going on around you. When we saw Dr. W. this afternoon, he was really frustrated. Obviously the medication that we have her on now is not going to work. Neither have any of the others. He explained that because her epilepsy situation is rare, for the pharmaceutical companies to develop a drug for this disease would not be profitable...for them... and that in the world of prescription drugs it's ALL about the money. His words. He said that for a new drug to be developed that would help her would be a total accident. No one is going to try to do it, because there's no money in it. There is a drug that is in the pipeline so to speak that he and some other neurologists are optimistic about--but it has been held up for at least two more years due to...yep, money issues and company buy outs. So we are left with only two options. We try the one last drug that we haven't tried and it either works or it doesn't...AND if it works but causes side effects we have to take her off of it anyway. OR he offered to call in the surgeon for VNS. While the surgery isn't brain surgery, it is surgery and has its own list of concerns. We talked for quite a while and decided to give this last med a shot...he told us what to watch for and said that we would know within a month if it is going to work and if she can tolerate it. At that point, if it isn't working, we see the surgeon. He was absolutely AMAZED at her perfect TAKS scores. He cannot believe that she is doing so well, given the number of seizures and the medications. He just kept saying, "Seizures don't make you smart, these meds don't make you smart...imagine what she will be like when we get this under control." Something to look forward to...personally, I hope she becomes a scientist and develops a new medication for intractable epilepsy. And that she doesn't even care about the stupid money.