Navigating the constant dread and uncertainty of LGS
We're currently enjoying a lengthy reprieve from our son's odious seizures
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As I sit in rush-hour traffic, a hot Florida sun beams brightly through my windshield. Drivers around me jostle for position, frantically trying to shave off a few seconds of commute time. A cacophony of rumbling cars, beeping horns, and chattering sports radio fills my ears like nails on a chalkboard.
I check my blind spot to switch lanes when I suddenly feel a hand grab my hair and yank my head back into the headrest. As I keep the car steady, I hear warm laughter behind me. In the rearview mirror, I see the biggest, most innocent-looking smile that instantly melts the tension. “I know, little Brian. I love you, too, buddy,” I say.
Our 11-year-old son Brian’s medical journey began when he was just 8 months old, with the onset of infantile spasms. This shocked my wife and me, as neither of us had a history of seizures. Eventually, he was diagnosed with Lennox-Gastaut syndrome (LGS), a rare type of epilepsy characterized by developmental problems and multiple types of seizures.
Since the start of this ordeal, Brian’s life has been a traumatic whirlwind that’s been difficult for all three of us to endure. Near-daily seizures of every type rattle his body and our resolve. We’ve sat through endless electroencephalograms and two surgeries, and cycled through over a dozen treatments, all in a desperate attempt to try anything to alleviate Brian’s suffering.
While all of this occurred, hopelessness constantly ate away at me. How much more of this pain and suffering can anyone endure, I wondered? Would the sun ever shine again through these clouds of darkness?
Setbacks and rekindled optimism
Leading up to Brian’s corpus callosotomy — an invasive type of brain surgery to treat seizures — in 2022, I felt horribly defeated. The decision to schedule the procedure felt like surrender. We had tried pretty much every noninvasive treatment for LGS without success. Corpus callosotomy was a last resort to try to provide Brian some relief. My stomach turned throughout the procedure as I hoped and prayed that he would pull through.
After several days of recovery, little Brian triumphantly marched himself right out of the hospital, grinning from ear to ear! What followed were a wonderful five months of seizure-free bliss. My usual inner anxiety as I’d wait for the next seizure to happen began to ease. Could the storm finally have passed?
When Brian’s seizures returned, I was devastated but not surprised. LGS has no cure, and I knew the reality. While it was a disappointing turn of events, the previous few months of freedom had rekindled my optimism. During the worst periods of this illness, I never could’ve imagined the possibility of going a week without seizures, much less five months.
Between the surgery and the onset of new seizures, Brian had another procedure in 2023 to implant a vagus nerve stimulator. We also changed his combination of medications and dosages at that time to see if it might help.
Last December, Brian started having repeated seizure clusters that lasted most of the day. He couldn’t make it through one day of school without having to be picked up. The seizures weren’t very long or violent, but they occurred in varying intervals all day long. I haven’t seen him have that many seizures in a day since before his brain surgery.
His neurologist changed his medication dosage and frequency again, and we added a vitamin supplement — throwing anything we could against the wall to see if it would stick. Christmas was right around the corner, but we were hardly in the holiday spirit.
Brian suffered through eight straight days of seizure clusters. On the ninth day, Brian’s big smile, a ray of warm sunshine peeking through the storm, radiated from the time he got up that day until he went to bed that night. It was a welcome relief, and I was very grateful for that day of peace.
Surprisingly, that day without seizures has stretched to almost seven months of sustained peace. The constant dread and uncertainty that LGS has brought into our family is starting to dissipate again. Brian is constantly smiling, laughing, and cuddling with us. He marches all over the place, always on some sort of adventure. He’s also getting plenty of sun this summer.
I cherish each bright, warm day, knowing that the next one isn’t guaranteed. If the seizures do return, I’ll be ready to fight for the next respite.
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.
