TWO YEARS SEIZURE FREE!

So after two years seizure free you can try to go off your anti-seizure meds.  We are at that point.  We were admitted to NYU Medical Center to have our 48 hour VEEG done.  What I wrote below about taking her off Keppra for one night (in hospital, while hooked up to EEG) did not happen.  Instead, we had a standard 48 hour VEEG done (our 5th since the first seizure) in the hospital.  It was annoying because we were in a double room and got very little rest the entire time there.  So of course that is a little nerve wracking since her DISORDER is somewhat caused by NOT ENOUGH SLEEP!!!!!!!!!!!!!

The good news is her VEEG was normal and we can start weaning off the Keppra!  YIPPPPEEEE!  Our weaning schedule is supposed to be: down from 2ml to 1ml for 10 days and then .5 for ten days and then done.  We will do it a little differently (after consulting w/ our integrative neuro who told us to go as slow as possible):

1.5 ml for a week, 1 ml for 10 days, .5 for 10 days and then .5 every other day for a week or so.

If you are reading this now, please send us healthy brain vibes~~~~~~~~~  We want to be done w/ this disorder.

We are praying for the families we met at the hospital who have way bigger mountains to climb then we do.  I’ve written it before (on Joey’s blog);  any time spent in a children’s hospital/pediatric floor is incredibly draining, humbling, exhausting and emotional. You cannot begin to comprehend until you have done  w/ your own child- it is so hard. Going to hug my husband and  watch some mindless TV to get my mind off it all!

thanks for reading!

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