Serious Cases can be Cured - Katie's story

Before I start, I need to disclose that my daughter did not have a "life sentence" diagnosis, her age of onset was not after puberty, and there are no incurable physical issues with her brain to cause her seizures.  But her epilepsy was labeled incurable and we did defy the odds to find her a cure.  This is her story.

Five years ago, I would have given my life to find a way to help my daughter.  She was a happy normal kid until 2008 at age 4 when her first isolated grand mals spiraled into recurring periods of nonconvulsive status rendering her comatose for days and weeks at a time.  We tried and failed different combinations of: Keppra, Lamictal, Depakote, Dilantin, Banzel, Klonopin, Zonegran, Zarontin, and the Ketogenic diet.  After Johns Hopkins sent us packing due to Katie's "non-responsiveness" to the diet, we felt like all hope was lost.  She was had been in status for a period of months at this stage. Prayer and a series of coincidences led me to contact the mother who connected me to her current doctors, Dr. Marcuccilli & Dr. Zupanc.  On her 1st visit they admitted her for status and hooked her up for overnight monitoring.  As she went into a grand mal, Dr. Zupanc flashed me an encouraging grin and said, "We're going to make those go away."  That was January 11, 2011 and it was the last grand mal seizure Katie has ever had.  By the end of the month, they had found the right combination of Felbatol and Depakote to eliminate every other seizure type as well.  January 2016 will mark 5 years seizure free for my girl, the "hopelessly intractable" case.  Although the recovery process does not happen overnight and every med has its side effects, this is nothing short of a miracle in our books.  I have both doctors' contact info if anyone is interested. They practice in separate states now but we follow-up with Dr. M because he's closer.  He really believes that a Depakote-Felbatol combo is a "magic bullet" for Doose kids like Katie and has the track record to back it up.  I hope that if anyone out there (particularly a child with Doose Syndrome) has not yet found the right treatment, they will give this story some consideration!