Monday, June 21, 2010

Sleep deprived sugar free EEG...

Just wanted to update on Rylee's neurologist appointment this past Friday. It ended up being 3 1/2 hours during which we met with 2 different doctors. The second doctor was the Optha-Neurologist. She did a few different tests and we talked a lot about Rylee's "episodes." A few weeks ago I video recorded 5 minutes worth of her eye spasms. The recording ended up being very helpful in trying to figure out our next step. While replaying the video about 10 times she realized every time her eye started to twitch her mouth, face, etc... would stop moving. Even though this only lasted a second or two at a time it was also very noticeable once she pointed it out. Without video she wouldn't have been able to "witness" the problem. That's now appointments like this work... it NEVER happens while in the doctor office;) She did say that she feel confident to mention that this has nothing to do with Rylee's eye, even stating that her eyes are very healthy. She also never mentioned anything about a tumor! GOOD GOOD GOOD! The doctor we met with is referring us to a pediatric neurologist at Primary Children's Hospital. We are on the fast track list which is a fast moving list kids go on when they are suspected to be having brain seizures. They like to get a diagnosis figured out quickly for these kids. Rylee will be having an EEG done on her brain Wed and hopefully we will meet our new neurologist Friday. She also thinks this could be the reason why is having such a hard time getting her speech down. I will let you know how all of this goes. They called today to remind me that Rylee needs to be sleep deprived on Wed morning. This means going to bed at least 2 hours late and wake up 2 hours early. Should be interesting... Ry needs/loves her beauty rest!