She became rigid in her limbs, turned her head to the right and her mouth locked into and "O" position for quite a while. She had little versions of this just before the minute or so long one. She gave little sounds out just before they started. When it was over, she became post-ictal and has been out ever since. The way this presented was different than any we have ever seen. Fortunately, she breathed well through the whole thing and never threw up. So, tomorrow we will get blood drawn to check her Lamictal levels and make sure we have enough on board. We hope she will do well through the night and stay asleep and seizure free until morning. But she is just continuing to show us that Battens is not a disease of patterns.
Wednesday, November 18, 2009
Further Breaking of the Pattern
You can check out the previous post on this ongoing challenge. Macayla awoke this morning with smiles and even seemed more relaxed. She started getting fidgety around lunch time, but was still very reactive and happy. When seizures are lurking close by, she tends to have increased rigidity in her arms and she purses her lips repeatedly. (I like to think she just wants to kiss her daddy, but in fact it's neurological dysfunction. Of course, Jennifer is probably neurologically dysfunctional since she actually does kiss me!) Anyway, Macayla became more and more rigid and "twitchy" as the afternoon wore on and tonight she had a new kind of seizure. Actually multiple seizures.
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