SUBSCRIBE TO OUR MAILING LIST
My son was diagnosed with Landau-Kleffner syndrome—a condition so rare that only 1 in a million children are affected. He has also been diagnosed with epilepsy, autism, aphasia, speech delay, cognitive disorder, balance issues, and fine motor deficits.
I knew that medications weren’t working. I went to the Epilepsy Awareness Day at Disneyland conference where I spoke with a parent about the VNS device and how it had changed her child’s life. I also heard a presentation by Dr. Ann Hyslop from Stanford Children’s Health who gave case examples and outcomes of children with and without surgery. I knew surgery was a choice I had to consider.
I moved from Montana to California to access care at Stanford for my son. They started with a PET scan, MRI, and TMS Motor mapping. We returned the following year for a Stereo EEG (S-EEG) and a responsive neurostimulation (RNS) device implantation.
Overall, compared to before surgery, this is a walk in the park. His behaviors were off the charts; he was often violent and self-harming all day. He has a younger brother, so keeping everyone safe was a challenge. Now, he has a 30% reduction in seizures and his behaviors are so much better. He hugs and kisses me, recognizes when his behavior is inappropriate, listens better, cleans his room, and is a good brother. He couldn’t count to 10 or say his ABCs, and now he’s counting. It’s night and day. I hope we get more improvement, but if he doesn’t, I feel it’s already a success.
Despite the isolation and challenges of epilepsy, I am determined to share our journey to inspire and support other families. Epilepsy is a rollercoaster ride. Sometimes it is isolating. Sometimes no one else understands. I would love to help others find the support that I didn’t always have.
Languages spoken: English