Sunday, April 20, 2014, at around 7 PM, was a game changer for me.  I thought that I was suffering from the flu or some sort of bug because my younger brother, Tanner, had gotten sick 2 days before.  I had a fever, a headache, the chills, was a bit sluggish, and just not right.  A bath to cool my temperature seemed like a good idea, but I could never have predicted what was going to happen next.  My mother, father and brother say it was terrifying.  I remember nothing!!  The seizure was a big one.  I do not recall my father and brother pulling me out of the bathtub, nor do I recall the paramedic carrying me downstairs.  After arriving by ambulance at a local hospital around 8 PM and being seen in the pediatric emergency room, I was then transported at 1 AM, via medical transport, to another hospital.   The reason for the transfer was that my parents were told that I had several cysts on my brain and they recommended that I seek treatment at the local Children’s Hospital.  After spending three nights in a hospital bed, we were told that my MRI was normal, but my EEG suggested that I had epilepsy.  I was given the diagnosis of benign rolandic epilepsy upon discharge.  Later, my family was told that I tested positive for Influenza B, as did my brother, and this along with spikes on the left side of my brain, caused the tonic clonic seizure.

I would return to school the following day and this is the time when a new chapter in my life began.  My school nurse was uncomfortable and started to question the rescue medication that I had been prescribed and instructed to administer in case I had another seizure like the first one during school hours.  This led my mother to reach out to the pediatric neurologist’s office for clarification.  Unfortunately, it took the office literally one week to return my mother’s several panicked calls.  She was fortunate to have friends who were in this field and they recommended that my mother reach out to Nicklaus Children’s Hospital (Miami Children’s).  At that point, my mother began to research the diagnosis that I had been given and started to question it.  After examination by a pediatric neurologist at Miami Children’s, I was given a new diagnosis of focal cortical dysplasia epilepsy.   After getting my records from the hospital where the original diagnosis was made, my new physician ordered a 24 hour EEG because my original EEG looked so bad.  As it turns out, miraculously, the medication that was prescribed at onset seemed to normalize my EEG.

Since that fateful day, a lot has taken place.  My family and I were lucky enough to attend a family retreat weekend at Westgate River Ranch in River Ranch, Florida, hosted by a non-profit organization called Deliver the Dream.  I was also introduced to Camp Boggy Creek in Eustis, Florida.  It was there that I met one of my best friends.  I have gone to summer camp there twice and created a great book of memories.  Both Deliver the Dream and Camp Boggy Creek came into my life because of my affiliation with the Epilepsy Foundation of Florida.

Thankfully, there has not been another powerful seizure.  Yes, there has been the daily ingestion of medication, as well as regular visits to the neurologist; all of this in an attempt to stay healthy.  Fortunately for me, I have been just that.  I have lived a regular young kid’s life.  The truth is, I am just getting started.  I have so much to do and much that I am looking to accomplish.  While epilepsy is a part of my life, it does not control my life.  The events of that Sunday in 2014 have made me a better, more compassionate, person.  My success in the performing arts proves that epilepsy was not able to slow me down.   My understanding of the awkwardness one often feels when suffering from a condition like this has made me strive to help and advocate for those young people with epilepsy who feel ashamed and alone.

 

 

 

Ilana Bitton

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