I hated just about everything about high school chemistry class except the last unit: solving for unknowns. It could’ve been the mystery, but more likely it was the hands-on testing: burning the compound, measuring, observing, etc. I recall this scientific process all these years later when I’m organizing all of Holden’s medications because it feels like I’m trying to “solve” the unknown of his LKS. In the morning, he takes Ritalin (attention), topomax and lamictal (anti-“big”-seizures); at night, topomax, lamictal, clonopin (sleep and anti-seizure), and melatonin (sleep) at night; we add prednisone (addresses the interictal spikes/LKS) on Friday nights and Saturday mornings. His cocktail. My chemistry experiment.
I say my experiment because the neurologist and psychologist weigh my observations quite carefully when determining which medications work, when to increase them, and when to add a new one. For the first year Holden was taking prednisone, for example, he took it morning/night twice a week. It seemed to be helping slowly over time—it arrested the “big” regression and we could see some language improvement—but it interfered with his sleep. After several months, we reduced it to once per week with the hope that the language gains wouldn’t be lost. Luckily, they weren’t. He started sleeping better and his behavior improved, too.
But that was harder to untangle than you might think. Since LKS disrupts Holden’s ability to use language, sleep, process short-to-long term memory, sustain attention, and regulate behavior, it was tough to untangle the following threads: what problems was the disease itself causing? How much sleep deprivation was caused by the disease or by the prednisone? Is it the disease or sleep issues cause for such fluctuating behavior? Were some of the issues we were seeing side effects medication? In chemistry class, we were taught to apply one test at a time to control variables. But with a human being, variables are harder to control. It’s particularly difficult when other medical professionals, like pharmacists and general medical doctors, see his list of medications and raise an eyebrow or narrow their gaze.
The latest use and success of CBD oil (medical marijuana) for children with epilepsy presents hopeful development since it seems that this one medication could do many of the things that the other medications do, and it seems like there are less harmful side effects. Still, its limited long-term use in children still makes it feel like a chemistry experiment. Since Holden’s epilepsy isn’t as life-threatening and life-denying as some forms of epilepsy syndromes are, I’m waiting a bit longer to see what studies emerge.
I often hear parents of slightly neuro-divergent children (those with ADD or ADHD, for example) worry about the effects of one medication. Or parents with neurotypical children wonder how I can subject my child to so much medication. Even other parents of children with LKS have a tough time negotiating the issues that medication presents. Why, when it comes an infection or illness, do we happily rely on medication, but when it comes to the brain, we are so less willing to place our faith in it? Negotiating healthy skepticism becomes so difficult. Perhaps because, for Holden, none present a “cure” but just an arrest of regression and a positive adjustment for a severely, severely, severely abnormal brain.