Tuesday, November 3, 2009


Friday afternoon, we finally got the results from our EEG last Tuesday. And it was good. There was marked improvement from all of Collin's other EEGs. It wasn't completely normal - there was some mild evidence of the hypsarrhythmic (chaotic) brainwaves that characterize Infantile Spasms and there were some discharges that could have been other types of seizures - but it was much, much better than it has ever been. And that's on the lowest dose of Sabril; because, even though the typical protocol is to increase in dose every week for three weeks, Collin stopped seizing after the first dose, so we didn't see any need to go up. Now, however, we have jumped up to the middle dose in the hopes of normalizing his EEG completely and we will repeat the test in three weeks. Here's hoping.

Collin is tolerating the new dose of Sabril very well - no increased sleepiness or any other symptoms. His eyes have been open so much more the past week or so and I am almost positive that he was looking at me once yesterday. He smiles on and off all day in response to noises, touch, play, and sometimes just whatever good jokes he's telling in his head. He has started kicking, which is awesome to watch, and is extending his arms up to his face instead of keeping them clutched at his chest. Last night, I even saw him put his hand in his mouth. Neck and core strength are about the same and he's nowhere near holding his head up, much less sitting up, but we're plugging along on that and giving lots of thanks for the great things we are seeing.


  1. Oh, Annie!! So thrilled to hear of good progress and growing and looking! Here's to continued success!

    Love and prayers as always...

  2. I feel like going up to every person I meet today, giving them a big hug and yelling HALLELUJAH!!!

  3. This is great news! I look forward to continued progress reports. Give Collin a big hug for us.

  4. I think I might give Sabril "a big smooch" too. And I know a lot of people who can't tell a good joke to save their lives, so he's very advanced in my book :)
    P.S. I'm so glad it fits! Thanks for posting the pic :)