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.
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