In my son’s 42 years with epilepsy, I never knew about SUDEP
Even after decades of complications, Jeff's passing was a shock
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November is an emotional time for me as a mom whose son lived with epilepsy for more than 40 years. In honor of National Epilepsy Awareness Month, our family and friends participate in walks and other events to raise awareness and help fund research.
According to the Epilepsy Foundation, about 1 in 26 people develop epilepsy at some point in their lives. The LGS Foundation estimates that 1%-2% of those — about 48,000 children and adults in the U.S. — live with a rare type called Lennox-Gastaut syndrome (LGS).
When my late son, Jeff, was diagnosed with “uncontrollable seizure disorder” in 1980 at age 8, I didn’t panic. I thought I knew enough about epilepsy, so I wasn’t worried. I sure was wrong. It wasn’t until Jeff’s seizures kept changing, worsening, and becoming harder to control with medications that I realized this was not the epilepsy I had read about in textbooks.
At that point, I simply hoped for a new treatment that would better control Jeff’s seizures. No one had told me about SUDEP, or sudden unexpected death in epilepsy.
Jeff’s neurologist at that time was very compassionate and helpful. He referred Jeff to neurologists at Yale New Haven Hospital in Connecticut, Dartmouth Hitchcock Medical Center in New Hampshire, and Penn Medicine’s Comprehensive Epilepsy Center in Pennsylvania. We made hundreds of trips in search of answers about this rare disease.
Eventually, we learned that Jeff had LGS, but I never knew which direction the disease would take him. LGS seizures can be frequent and difficult to control; I was told at one point that Jeff might be seizing almost constantly, even if we couldn’t see it.
As Jeff got older, there were days when he was awake and aware that we were with him, but he couldn’t speak; he would just nod. We knew those were cluster seizure days. On other days, he was bright, cheerful, and talkative, and would play games on his Kindle.
Then there were days when he was confused and hallucinating. It was so sad to watch him wave to people on TV, thinking they were his friends. I asked multiple doctors why this was happening and was told to just go along with it — that I shouldn’t upset or correct him. Again, SUDEP was never mentioned as one of the most likely causes of premature death.
On those days, I just sat in my car and cried, feeling entirely helpless.
I will say that Jeff did not start having hallucinations until after he was placed in a medically induced coma for three weeks in 2018, after going into status epilepticus. They seemed to worsen during the COVID-19 pandemic, when Jeff was isolated in the nursing home with only his TV for company. I couldn’t see him for six months and was shocked when I finally visited him and found him in a very altered state. But maybe 40 years of seizures had affected his brain as well.
Since SUDEP was never mentioned to us, my family and I thought that Jeff would eventually have so many cluster seizures that he’d go into a coma. I wasn’t ready to get a phone call very early on a Wednesday morning in July 2024 and hear that Jeff was gone. It was a shock then, and it remains a shock today. Any sudden death is devastating.
My hope for the future is that, with all the educational information that organizations like the Epilepsy Foundation and the LGS Foundation distribute, SUDEP will be brought to the forefront. While many caregivers do everything they can to keep their loved one safe, we need more awareness of this complication.
It has been 118 weeks since we lost Jeff, but it feels like just yesterday.
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
