We saw the neurologist this afternoon, but didn't get too much information really. All of the tests they did last time came back negative. There were two "biggish" things we did get done though. I have mentioned before that Colt had an MRI at Vanderbilt when he was around 5-6 months old. At that time, it was done because of his nystagmus but it came back clear. The MRI that was done in March of this year was the one that showed the damage to his brain. This brings up a couple of questions. Is something that is degenerative because it wasn't on the first MRI but on the second, or is it something that doesn't "show up" until later in life, or is it that the first radiologist didn't notice what the second radiologist did. SO. We asked to have the first MRI sent over so that the same radiologist could view both MRIs and tell us if it was present during the first one and just overlooked. Dr. Miller told us that sometimes things can get missed, especially if they aren't looking for it. So, hopefully we will have an answer to that very soon.
Next, I asked Dr. Miller flat-out "Could this have been a stroke?" He said no. Honestly, I had kind of accepted that was what it was and I was at peace with it, so it is a little disappointing. Maybe I just want an answer and want it to be that it isn't degenerative. We truly don't feel like it is, but know they will find out so we don't have to wonder anymore. Bah.
Dr. Miller continually asks us if Colt has had a seizure. I mean, it never ends. It's like he's waiting on him to have one. Like that will help him decide what's going on. I hope that never happens. He seems concerned still about the size of Colt's head, but isn't "alarmed." It is WAY off the charts in size, but I still think it's just because he's really a genius. ;)
We didn't really get any answers that can help us move forward, but I wasn't really expecting them today either. He is anxious to see what the geneticist says and if her tests can help guide him in a different direction.
We again mutually decided with Dr. Miller that we didn't want Colt to be a "lab experiment." If he really thinks a test will provide an answer, we'll do it. If it seems like a long shot, we're going to pass it up for now. As Colt gets older, it gets harder to hold him down. Also, it bothers him longer and seems to cause nightmares afterward for a while. We can't do that anymore, if we don't know for sure it will help. So, there we are. :)