Cole is not eating really great, which is kind of the reason for his torture. He just is not a fan of cream in small amounts, without his chocolate syrup. He also doesn't like to eat butter plain-go figure. This whole "eat everything in 20 minutes" thing is killing him too. However, I passed all of my scale, calculator and other tests with flying colors-I think it has something to do with studying for 6 months :)
We showed a video of one of Cole's partial seizures and the attending actually thinks that they might not be seizures, but something called Alternating Hemiplegia of Childhood. They are going to do a spinal tap in the morning that can give them a better idea. He still has epilepsy, but if these "episodes" are AHC, they will need to be treated differently and will not be affected by the diet. They also drew a TON of blood to do a bunch of tests that they have never ran on him, including the one for Dravet; never fun.
Cole is all hooked up for his first overnight EEG since his PICU stay in '08. He has never been really good about getting the leads put on. SO-that makes two separate times that Brian and I have had to hold him down today. Once his head is wrapped, he does fine. He is confined to the bed so that the video can capture him, but we have just been watching Woody over and over again with a little Elmo sprinkled in :)
Hopefully he does well tonight and I can push the button each time I think he is seizing. Then it is off to the lumbar puncture in the morning before he can eat!
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