First of all, thank you so much for the wonderful emails and phone calls that are so full of support! Those really mean a lot to us.
Chase had his Neurology appointment at 9:30. It took about 2 hours and we don't have a ton of news. We saw two doctors and they've asked us for time to allow them to research and try to work with genetics in coming up with a diagnosis/prognosis. Today's doctors felt strongly that we will eventually find a syndrome of some sort through the genetic testing. They said the only other thought they would have would be a stroke in utero but the rest of his brain would show a lot more damage.
The conversation started before they had looked at the MRI films and the Dr. had said radiologists can "miss things" and chances are there is SOME cerebellum. Then they went to look at the films, came back a half hour later saying that the space that is supposed to be between the cerebellum and the rest of the brain is there, but NO cerebellum. Just that pocket of fluid.
Our hope right now is that the rest of his brain is doing some compensating. It can't do it all obviously, but he's doing very well under the circumstances.
We go back to the Neurologists in 3 months, unless something comes up first. They know we'll travel anywhere for the best treatment, and took no offense to it, they said they would do the same for their families.
Now we wait for DNA tests (could be in as soon as next week) and the Doctors to try to put some pieces together. If it is a syndrome, we'll know much better what the future holds. For now we have to be patient. The doctors said Chase is "fascinating". They used to say the same thing about Trey. I can't wait to be boring again, hopefully soon...well, boring in an interesting way at least.
Sorry I can't give you more information. As soon as we know anything we'll absolutely let you know.
Please check out spino cerebellar atrophy. You can go on the national ataxia website. My husband has this disease and it shrinks your cerebellum until it is gone. They have fact sheets on there that you can read. Some are more progressive than others. This is worth a shot. I hope this helps.
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