Update from the neuro-ophthalmologist appointment

So, we spent 3.5 hours with Dr. B today. He was a really nice man, very thorough, extremely knowledgeable and we felt that he was really a great doctor. He did a lot of the same type of testing that the other eye docs have done, but obviously, with other thoughts in mind. When he was checking both of Peanut's eyes, then we could really see how much jumping goes on in each of her eyes. So it's not just the left one, the right one has it too.

We did learn that she has downbeat vertical nystagmus, which is certainly not that common, but the downbeat is better than the upbeat. Basically it means that her eye will move up slowly, but then move back down really fast. They categorize it based on which direction the eye jumps fast. So hers does it going down. Which is also better, it leads to less problems with the tilting of the head.

As for now, we don't have any answers on what's causing it. He's trying to determine if it was an acquired nystagmus or congenital. He's thinking it's more than likely congenital, meaning she's had it since birth. It's just one of those things that you don't necessarily notice, unless you're looking for it. So we can't say for sure how long it's been going on. We know that most likely about a year. But we were so worried about the other health issues, that we didn't get to the optical stuff until later.

He did give us several possibilities. And of course, they run the gamete. It could possibly be something that she will have to live with. As of now, if that's the case, then he wouldn't do surgery at this age. Her brain may have already compensated for the difference in her vision, but as she gets older she may have some more cosmetic reasons to correct it surgically. Another thing that he mentioned was something known as the Arnold-Chairi malformation. This has to do with the a relatively common syndrome involving displacement of the cerebellar tonsils below the level of the foramen magnum. It's all the technical stuff I got from another site. But hopefully the MRI will be able to show some of these things. There were some other things too, but honestly, there was so much to absorb. The worst case scenario is that there's a tumor of some kind. And he did mention neuroblastoma, which is a cancer that happens in children.

Soo... now we have to wait until the MRI at least. Then we can hopefully rule out some things, or even better, have a direction on which to go. And this doesn't even have anything to do with the weight issues. At least, not that we know of. So we have 6 more days until the MRI takes place. We also have her ophthalmologist apt. in about 2.5 weeks. She's not scheduled to see Dr. B. again until July 10th. Of course, this will all depend on the MRI results. If something shows up, then he'll bring us back sooner.