Averie Elizabeth

Averie Elizabeth

Who is Averie?

Averie passed away Sunday November 13th at 3:33am due to complications of her mitochondrial disorder. My beautiful princess is finally healed and in heaven with her brother :)

Averie is a crazy, beautiful, smart energetic 7 year old who keeps everyone on their toes! Averie has been fighting Alpers since her first seizure in 2004 at the age of 4. Her older brother passed away from Alpers when she was just 1. Just recently she became a big sister for the first time! Averie is strong willed and stubborn...I believe that's what keeps her going on the days her disorder creates obstacles for her. She is my special little girl who I love one cow, two moons and three fences big!

Thursday, August 11, 2011

No seizure control yet. They are stopping the magnesium and starting pentabarb. They use it for head trauma patients and status...want to achieve burst supression- basically flat brain wave then burst of activity the flat again in that pattern.
If she can tolerate it they'll keep her there for 24-48 hours. This basically allows her to brain to rest. Yet to achieve that on any other med so far. There are risks to other systems but they have saftey meds in place.

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