Our son was diagnosed with infantile spasms at one year old after having suffered a stroke at birth. Our neurologist for stroke care at UCSF was also an epileptologist so we were fortunate to be educated on the risk of seizures after stroke and noticed the spasms right away. Our neurologist referred us to a surgeon early in our treatment process so we could educate ourselves and make an informed decision if the medications were not successful.
We opted to receive a second opinion through Boston Children’s Hospital and I was also able to connect with the Pediatric Epilepsy Surgery Alliance through a personal contact to learn more about surgery as a treatment option. It was incredibly helpful to hear from multiple perspectives to ease our fears and answer our questions.
After failing several meds and seeing no success on the ketogenic diet, we made the difficult choice to proceed with a functional hemispherectomy when he was 19 months old. Our son was losing language he had already developed and we knew if the seizures weren’t controlled we’d risk further decline. Our surgeon was experienced with the recommended surgery and we felt comfortable in our home hospital with a team who was familiar with our son.
Our son’s last seizure was the morning of surgery and he is now thriving and exceeding our expectations more than 5 years later. The journey through seizures and surgery is terrifying and exhausting, but we are grateful for the support we received from this organization and other parents like us. We are glad to be part of this community as we navigate the path of life after epilepsy surgery.
The early years of my life parenting a child with epilepsy felt isolating and terrifying. I couldn’t relate to other new parents, and it felt like no one could understand my experience. The stress of managing symptoms and making constant decisions about treatment consumed so much energy and sometimes made it difficult just to get through the day.
Connecting with other parents in the epilepsy surgery community has helped me feel validated in my fears and supported in my decisions. What a relief to finally find someone who could understand! I’ve benefitted enormously in learning from other parents further along on this journey who are willing to share their stories, and I feel it is so important to pay it forward. There is nothing more powerful than making a connection with another parent who just gets it.
What parents say about Amy: