A life managing epilepsy is exhausting in all ways. Physically so because sleep is so sporadic and sometimes non-existent. And it's emotionally exhausting because there are never any answers. In fact, the more answers you seek, the more questions arise. We spend our entire day doing all of the "recommended" things. We give meds, TRY to maintain a sleep schedule, arrange therapies (and work on them in our FREE time), and follow a strict diet. However, we are also constantly looking for those things that aren't necessarily recommended. Recently we've discovered one such method.
It actually started around Easter time when Easton, my 2-year-old epileptic son, found some of his siblings Easter eggs and opened them up to discover little chocolate eggs inside. Now, you would think that this would have been an issue for him because only a few short hours before he pretended that he was as weak as a wet noodle. This was because it was occupational therapy time, and as wonderful as his therapist is to him, he is ornery and rebellious for her. He just couldn't muster the strength to grasp a small object, however now he was opening the eggs on his own and pulling the candy out...interesting. Anyway, I didn't know he was doing this for quite some time and when I found him, his face was covered in chocolate and he had empty candy wrappers in his hands. I assumed that we would see several seizures following this little mischievious moment because he was on a carbohydrate restricted diet at the time. However, I was pleasantly surprised to see NO seizures for several hours. This is unheard of for Easton, and although I didn't attribute it to the chocolate at the time, I did joke that it would be his new drug of choice. That joke is becoming less and less funny as we discover more seizure-free moments at the hand of chocolate.
Easton's ketogenic diet allows for few "fun" foods. So, when his dietitian gave me a recipe for a "chocolate" snack I jumped on the chance to give him something new. The chocolates consist of 11g of real butter and 5g of cocoa. I also add vanilla flavoring and some liquid sweetener. I gave them to him for the first time on a day that he'd had SEVERAL hours of seizure clusters. They seemed to be relentless for so long and I figured it wouldn't hurt him and might even be a nice treat for him. I gave them to him at 7pm one evening and by 7:30 the seizure count had been cut by at least 80%. Then, from 7:30 to midnight he had none. ZERO. ZILCH. NADA. WHAT?!?!?! Are you kidding me? Of course, thanks to my father, I am forever the skeptic and so I still wasn't convinced that this was caused entirely by the chocolate. However, I have now tested this theory several times and each time the number of seizures drops drastically and many times he'll have only one or two for several hours.
My brain immediately hits overdrive anytime something like this happens and I try to make sense of it. I picture that word "brainstorm" when this happens because that's exactly how I see it in my brain. Words, theories, ideas come flooding in and I dump what I don't need and hang on to those things that I think may be workable possibilities. So far, the only thing I can come up with is that chocolate is derived from cocoa. Cocoa. Cocaine. Caffeine. Stimulants. Sometimes stimulants work differently in some people's brains than they do in others. My brother is autistic and giving him Mt. Dew is like giving him Prozac. The same is true for Ritalin in a person with ADHD. Ritalin is a stimulant and would send you or I on a roller coaster ride of energy, but in someone whose brain functions differently it allows them to focus. I began to brainstorm this idea and thought that maybe we are giving too many brain-numbing medications to some epilepsy patients and maybe they need a brain stimulant. I know every neurologist who may ever happen to hear this theory would probably have an aneurysm because you are supposed to avoid caffeine with epilepsy. But, I watch this kid 24 hours a day 7 days a week, and I am telling you that chocolate makes a difference. Why? I don't really know, but to be honest, I don't care. It would be great if something could be discovered someday that could help thousands of others, but at the moment I'm only interested in this one patient. The one that I watch struggle to do things that people take for granted every single day. The one with the curly dark hair and amazing blue eyes. The one who loves cows and dancing to music. He's the one I work for. He's the one I suffer with day in and day out. He's the one I'll die trying to help. And I realize that maybe none of this is useful. I do understand that countless other variables could be at work here. But, I wonder, if there are no right answers how can there be any wrong ones?