I am the parent of four great young people, the youngest two twins. Savanna, twin A, was born seemingly normal. About eight weeks later, she developed infantile spasms. She also had focal seizures, which were thought to be implicit in the global infantile spasms. A MEG study was truly a deciding factor in surgery at 13 months old. She had a temporoparietal lesionectomy at 13 months of age, then a full anatomical left TPO at 18 months. She has been seizure free ever since, for 10+ years, and off meds for 9+ years.
Ultimately, focal cortical dysplasia 2a was found in pathology, a relatively vague diagnosis with no real reason for the dysplasia. Extensive genetic testing was performed before surgeries, with no real answer there either. Today, more information might have been gathered with genetic testing on the pathogenic tissue.
Once you become unwillingly thrust into this alternate universe, you realize how chaotic and scary the road to treating drug-resistant epilepsy is. You realize, even after the initial phase, there can be many differences of opinion about therapies and treatments. Treatment not available at one time is available later. This creates a lot of anxiety and uncertainty about whether you are making the right decision for your child regarding surgical intervention. The process is overwhelming for most.
I began to immerse myself in the public sphere via social media. I was trying to help. While not a fan of social media, I found it very comforting knowing I was not alone in this journey, yet it could also be very misleading, seeing what some people were posting after all that I had learned over the years. I did interject myself at times and helped many, I think, but I found it too much of a burden and ultimately pulled away.
When PESA began its Parent Support Navigator Program, I was immediately interested in helping. This was a better-regulated and managed platform with extensive training. I was helping the local hospital already in this manner, so PESA’s Parent Support Program was a good fit for me. Providing comfort, sharing knowledge, and just listening to other parents during their time of need are all invaluable offerings.