My child started having what we later learned were gelastic seizures (otherwise known as “laughing seizures”) around age 3. Because the seizures are somewhat unusual and not immediately obviously a problem, it took some advocacy to get our child diagnosed with epilepsy. He seemed to respond to meds well at first, and all imaging initially seemed normal. However, over the next few years, we started having to combine and cycle through medications, with each “honeymoon period” seeming to last a shorter time than the one before, and with side effects that made our very sweet kiddo not quite himself. Eventually, through many different types of imaging studies, the locus of seizure origin became more apparent and his cortical dysplasia more visible. When he was 6 years old, after several second opinions and many sleepless nights, we decided to proceed with surgery: a left side anterior temporal lobectomy.

I am so grateful for having found the Pediatric Epilepsy Surgery Alliance on my journey as a parent struggling to learn everything I could about epilepsy surgery. They have been a huge help to me in accessing practical resources, helping us understand the science behind the recommendations, and linking us with emotionally supportive parents who had been through a similar journey.

Now that my family is on the other side of surgery, I hope to give back and contribute to this community myself.

Languages spoken: English, Russian