Our journey began in 2007 when my son began seizing at the age of 4. He had been born perfectly healthy and had met all the milestones until this age. He would typically seize about 2-4 times a week. The neurologist we had at the time would change his medications or increase the dose. Most of the time, I had to ask for changes, and at one point, I was told, “Your son doesn’t seize as much as some of my other patients.”
We then sought a second opinion in Miami. The neurologist in Miami suspected Rasmussens Encephalitis but felt surgery wasn’t a good option for my son and instead placed him on monthly IVIG therapy. Honestly, at the time, the thought of surgery was terrifying, so I was not resistant to this advice. I know better now. My son endured ten years of failed treatments.
When his mental health began to suffer, I asked his nurse practitioner for a referral to a surgery group. My son was diagnosed with Rasmussen’s Encephalitis and had a left functional hemispherectomy at the age of 14. He has been off of medications since 2017 and is seizure free to date.
Failed treatments: Trileptal, Depakote, Keppra, Topamax, Tegretol, Lamictal, IVIG therapy x 2 years, VNS, and CBD
Languages spoken: English