As a mother to a child with Lennox-Gastaut syndrome (LGS), I’ve learned that our son’s quality of life changes with the tides.
When our son, Brian, was diagnosed with LGS, we asked what any parent would: What should we expect? Is there a cure or viable treatment? What is the outlook?
We could expect multiple seizure types. Some are life-threatening.
There is no cure. It is an aggressive and chronic type of epilepsy that is resistant to anti-epileptic medications.
Due to significant cognitive delay and prolonged seizure activity, the prognosis isn’t great and varies from person to person.
With that, we felt utterly empty and were left even further in the unknown. The best advice we received was to achieve seizure control as completely and quickly as possible. So that’s what we set out to do.
For a while, it worked. We even added medical cannabis to his treatment regimen. Brian could walk, run, climb, and eat on his own. At 3, he had a vocabulary of about 20 words, which was exceptional considering his condition. He was still having seizures, but they were quick and manageable with the protection of his hockey helmet.
Brian loved to ride his bus to school so much that he would chase it down the sidewalk after he got dropped off from school. Speaking of running, he had a mischievous side. At school, he was notorious for being the “escape artist,” requiring whole pieces of furniture to be used as a blockade between classrooms so he wouldn’t run away.
He was able to develop quite the personality and express himself. We learned that he loves airplanes (“ga-gas,” as he called them), cookies (“gockies”), the band Kiss, and the color yellow. His favorite place is the beach — no helmet required!
He was always so jolly. Like Santa Claus, he spread cheer everywhere he went. Nothing could get him down.
But, like his favorite beach, the ebb and flow of his chronic epilepsy would once again take us into unknown waters. The flow, when the water rises again, is like our times of certainty and stability. The ebb, as the water drains away, is when he begins to regress. Watching him slowly slip away was the worst thing I’ve experienced as a mother so far.
Brian’s drop seizures became more frequent and severe, causing him to sustain multiple injuries to his face.
Even with a hockey helmet and visor, his chin and mouth were no match for the corners of tables and chairs that the seizures would lurch him into. After a trip to the hospital to unhook his bottom lip from his right canine tooth, we opted for a full-coverage face shield.
If only that had been enough!
Brian’s chin and neck were still exposed from the bottom of his helmet and face shield. After a drop seizure into the metal bars of his tricycle and multiple trips to the hospital to stitch and restitch the gash on his chin, we added a chin strap. By this point he looked like a goalie on a hockey team. I wept at the sight of him, knowing he needed this obscene amount of protection just to stay safe in our living room.
By the time COVID-19 spread to the U.S. and shut everything down, Brian had reached rock bottom. He was completely nonverbal. His seizures were crippling. He suffered at least 10 tonic-clonic seizures a day, sometimes more. When he wasn’t seizing, he was sleeping. He couldn’t walk, sit up, or hold his head up on his own. We were syringe-feeding him PediaSure and considering taking him to the hospital for a gastrostomy. Our only silver lining was that we were able to stay home to take care of him.
We thought we were nearing the end.
As luck would have it, the tide began to flow back. We switched gears and tried three entirely new medications. He was instantly happier, smiling and laughing in his sleep. Within a couple months, he became seizure-free.
I just want to read that again: He is SEIZURE-FREE.
With LGS, this is the ultimate goal.
Now, we can relax for a little bit. If even just for a little bit. And so can Brian. He is babbling and running around again. We’re back to feeding him solid foods that he can eat independently. He laughs and smiles at us and genuinely enjoys our kisses again. The turnaround has been amazing, and I hope it lasts for a while.
While we still can, we’re going to soak it in.
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.