Spring 2012

Looks like we might be going off Keppra!!!!!!!!!!!! We will be two years seizure free in early June of this year. The ‘usual’ rule of thumb is two years seizure free= wean off meds.
Ella is still having intermittent ‘sparkly’ limbs in the middle of the night. They happen very infrequently now. We had some in October 2011 and then had a pretty long incident in March 2012. She has had these while hooked up to EEG but they didn’t register as an event. Docs have always thought they were probably very tiny very deep seizures. Soooo I am a little confused. I really really want her off the meds but am concerned bec of the sparklys…???

The plan right now is to admit her to hospital for 48 hour VEEG while taking her off the Keppra for first night, do some testing while she is a bit sleep deprived. if EEG is normal the entire 48 hrs then she goes home w/ a weaning schedule. If it is not normal we re-assess.

Still trying to take this all in. So happy the Keppra has worked so well for her and the side effects have been minimal. We’ll see.

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