Hannah is a 10-year-old little
girl with intractable epilepsy. Hannah’s diagnosis is currently unknown. She
had her first seizure at 4 months old. Over the years, Hannah has developed
various types of seizures. She currently has at least 100 seizures a week
despite daily seizure medication. There have been many times where she has had
at least 300 seizures a day. She is developmentally delayed, non-verbal, and
not potty trained as a result of her daily seizures. Hannah no longer smiles or
laughs, she is lethargic, extremely unbalanced, uncoordinated and sad as a
result of the side effects from the use of daily seizure medication and weekly use of
emergency medication. Despite trying 18 different seizure medications, the
Ketogenic Diet and Vagus Nerve Stimulator implant, we have yet to gain seizure
control. Hannah no longer enjoys life as she used to. Her quality of life has
become very poor. She used to run around, climb, jump, laugh, feed herself,
ride her bike, jump on her trampoline, and SMILE. Each day Hannah digresses
even more. Her stability is so poor that someone has to hold her hand
everywhere she walks.
Update March, 2014:
We never know how many seizures
Hannah will encounter each day...anywhere from 10 to a few hundred. Within a 48
hour period in February, she was given 6 doses of Versed (rescue med). We are leaning
towards this being hormonal as the timing is comparable to status epilepticus
that happened on January 28, when she was life-flighted to Hershey Medical
Center.
Hannah was put on a gluten and
casein free diet the second week in February, along with avoiding any dyes,
consuming all organic fruits, veggies and meats, zinc, omega fish oil,
magnesium, and a multivitamin. We are very hopeful this will improve Hannah’s
condition.
She is currently taking the
following anti-epileptic medications: Lamictal, Topamax and APO Clobazam.
Hannah was weaned off of Keppra which took around 6 months to do. Her
last dose was 1/6/14.
Please help Hannah gain her quality of life back!
Follow Hannah's life story at Hannahnator
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