How Our Journey With Epilepsy Began

Our family’s journey with Epilepsy began almost 12 years ago in 2013. Most of us in our family had never seen anyone have a seizure before. And overnight,

Our four-month-old began having hundreds of seizures per day. At that time, both my husband and I were working in the corporate world full-time, and we had two small children at home as well. I quickly transitioned to working from home with a four-month-old by my side without any real plan.

After a week of increasing medication dosages, adding more medications and getting nowhere while watching my baby continue to seize or sleep for hours during throughout the day, ⁓ where she should have been awake, playing and beginning to achieve milestones at four, almost five, at that point, almost five months old.

I finally decided that something had to change. So I called our local children's hospital approximately 60 minutes from where we lived and at that time we got her in for an appointment within a couple of weeks. Within 24 hours of the appointment, she was given a medication called Sabril that literally saved her life.

She was diagnosed with infantile spasms and she was on Sabril for approximately six months. Her diagnosis eventually evolved a few months later to focal cortical dysplasia epilepsy. But the good news was that from 7.5 months old until approximately 17 months of age her seizures stopped all because of Sabril.

As a result of the seizure freedom that Sabril gave her, she began achieving milestones such as eating, crawling, sitting up, talking, and walking. So while we're on this journey we had taken a turn for the best, but we may not have realized at that time was that we still had a long road ahead.

Looking back, this was just the beginning of advocating, pushing for better care and solutions for her. Also adapting to the highs and lows of parenting a complex medical child alongside neurotypical developing siblings all while supporting each other as a family during what was very challenging and stressful time.

This is a high level summary of how our journey started. We had no idea what was in store for us, but we were so grateful that our sweet little baby was now free from seizures and we were back to what we thought was “normal.”