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Overcoming Trials and Fear: Alex's Story

January 11, 2012

Thirteen years ago, if you had told Alex’s parents about the long, difficult road ahead of them, they would have told you that it was a mistake and you had the wrong child. As far as they could tell, they had a happy, healthy baby girl that would develop just like any other child.

At just 1 year old, Alex began her battle with epilepsy.  Alex’s first seizure was unexpected. It happened so quickly that her parents were unsure of what to do or think. As they watched over their baby girl with a look of terror in their eyes, they couldn’t help but hope that this would be the last. What caused these convulsions?  Is this something to be concerned about? What is WRONG with our little girl? These were all questions racing through her parents’ minds as they watched helplessly, while Alex shook uncontrollably from the seizure. Her parents were unsure of how serious her condition was or what her future would hold, but were preparing to face the worst.

Alex had her first experience at Arnold Palmer Hospital when she was 3 years old.  By this time, her condition had worsened, and she experienced 30 to 40 seizures a day.  Doctors were able to identify one tiny area of her brain where the seizures originated. Unfortunately, surgery was not an option. They tried what seemed like every medication available, only to be unsuccessful. Alex was given a less than 10% chance that her seizures would be controlled with medicine.

After leaving the hospital, Alex’s family didn’t give up hope that there was a medication that would help control their little girl’s condition. Fortunately, a new medication seemed to be effective and was able to restore Alex to a somewhat normal life. Her seizures were significantly reduced to nighttime seizures, with the occasional daytime seizure.  She was able to go to school, have sleepovers and be silly without being interrupted by continual seizures.  Despite her improvements, Alex’s parents would still occasionally pause in fear, waiting to hear a thud in the other room, worrying that she had fallen to the ground with a seizure.

Two years ago, Alex’s seizure activity began to increase again. The diagnosis came as a shock to Alex and her family: the area of her brain where they had once seen something had grown to a mass of a significant size.  Dr. Ronald Davis of Pediatric Neurology suggested a new surgery to remove the mass. After a year of finalizing surgery details, Alex underwent a two-phase surgery at Arnold Palmer Hospital to remove the mass which had been the source of her seizures. They knew there were risks, but there were greater benefits with a successful surgery.

After surgery, there was expected to be normal disorientation after anesthesia. But Alex and her parents fought off fear as they realized something wasn’t right.  Her right side was definitely weaker.  She couldn’t move her right arm or leg, or feel her lips and right cheek.  To make things more difficult, all of this was being communicated through her frustrated gestures alone because the brain swelling had temporarily impaired her speech functions. They were quickly reassured that all motor and speech abilities would return within the next few weeks, given the small movements in Alex’s right foot, hand, neck and face, along with her ability to say words such as Mom, Dad, no, ya, aow, and “ma” for milk.

As Alex’s mom reflects on the emotional time, she explains:

I can still remember the first night after the surgery.  I watched Alex with such uncertainty of what her future would hold. I can remember sitting next to her and waiting for a sleeping seizure to rear its ugly head, but nothing! Each day passed and although we did have the side effects of her right side being weaker, she was seizure-free! She went from having 4 to 6 sleeping seizures every night and an occasional daytime seizure, to absolutely NONE! Even though the experience was the hardest thing that we had ever encountered, the doctors and nurses at Arnold Palmer Hospital were patient and knew exactly what we needed.

Today, Alex continues to do occupational and physical therapy to strengthen the weakness in her right side.  She has regained about 80% of her physical capabilities compared to pre-surgery.  Even though it is still a work in progress, the real blessing is that she is now 222 days seizure-free! For 222 days and counting, Alex has been able to go through her day without the interruption of any form of seizure. Her parents are no longer sitting silently in the other room, anticipating the sound of a thud as Alex hits the floor from a seizure. She is now able to experience life just like any other young girl.

Alex and her family have faced the battle with epilepsy and won. They are now able to look back on their journey with a weight lifted off of their shoulders and excitement for what the future holds.