Done weaning….and weaning process= sleep walking

After two years on keppra we are finally weaning off.  The process took a little less then a month.  It is extremely nerve wracking.

 Ella has started sleep walking.  It has happened 4-5x since the weaning process started.  Always around the same time 9pm-10pm (she falls asleep sometime between 730pm-8pm).  The scary thing about the sleep walking is that if the seizures start up again what happens if she is out of her bed??  One time we even found her on the stairs (our fault for not closing the gate all the way).  So now that the process is complete we have to be vigilant w/ staring at her monitor over that 9pm-10pm hour.  We even have a audio monitor on as well and somehow she slips out her bed very very quietly!

The two seizures she had before Keppra were NOT at that 9pm hour but were instead much later in the night/early morning (3am and 6am).  We go for ambulatory EEG in a week and then see the neuro in early August.  I hope and pray all day long that the next EEG is clean and that the sleep walking is just her body reacting to coming off meds (that is what neuro said when I called her!).

Ella will be SIX on 8/3!  She is doing so well.  Growing, learning, laughing, playing.  She is a beautiful little girl who fills up my heart and lifts me up each and every day.  We are so lucky to have been blessed with such a smart, happy, wonderful daughter.

thx for reading.

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