day fourteen

At four o'clock I heard him gasp.

"Here it is!" I called to Michael, whipping off the covers to get to my boy.

I grabbed the syringe of concentrated THC cannabis oil that I'd brought upstairs the night before, in expectation of this nighttime seizure, then I squeezed the oil under his bottom lip and rubbed it into his gums. Michael said within ten seconds the spasms stopped.

After a few minutes Calvin was asleep, his tummy grumbling and his body shivering in the wake of the fit. But by four-thirty his body had calmed and he was breathing deep and slow, my arm resting on his hip.

A year ago Calvin had a seizure as we were leaving to set up for our annual CURE benefit, which we are hosting this coming Saturday. For years he had them exclusively between five o’clock and six-thirty in the evening, hardly ever in his sleep. Since starting Calvin on a homemade THCA cannabis oil a little over a year ago, Calvin has not had a daytime tonic-clonic (grand mal) seizure for almost seven months even though we’ve reduced his benzodiazepine by seventy percent.

Maine Health and Human Services once tried to characterize Calvin’s condition as stable. We went to a hearing hoping to educate them, telling them that there is nothing stable about epilepsy and that, even though Calvin hadn’t been to the emergency room in a long time, there was no telling when he might.

Just last month we spent twelve hours in the emergency room watching Calvin seize and be pumped with four powerful sedative medications meant to make them stop. If they hadn’t stopped when they did, we would have been transported to the Maine Medical Center where they’d have given him an IV of Depakote, a drug that when he was two began wreaking havoc with his liver, and if that didn’t work he’d likely have been put into a medically induced coma, from which some kids never return.

Today is Epilepsy Awareness Day. You should know that epilepsy is prevalent: one in twenty-six of us will be diagnosed with epilepsy at some point in our lives. You should know that epilepsy can be lethal: it is estimated that fifty-thousand Americans with epilepsy will die this year from seizures or related causes such as drowning. You should know that epilepsy can be elusive: over thirty-percent of people with epilepsy continue to have seizures despite the medicines they take. You should know that epilepsy is stigmatized: nearly one in one-hundred people have epilepsy, though many still choose to hide it for fear of being ridiculed or victimized. You should know that epilepsy is chronic: there is no cure, so its sufferers must live their lives taking powerful medications that can cause horrible side effects, some of which can be lethal. You should know that epilepsy can harm development: repeated seizures and drug side effects can impede development and cause irreversible cognitive delay. You should know that epilepsy can be painful: seizures can result in serious head injuries, broken noses, lacerations, broken bones and burns. You should know that seizures can feel scary: seizures can cause dreadful hallucinations including the fear of dying.

Calvin bounced back okay from his seizure today, likely because of the cannabis oil. But there is no doubt in my mind he's in for more and, without a cure, my little boy may suffer them as long as he is alive.

Please give what you can, if you can, to CURE epilepsy at Calvin’s Cure.

The video below may be difficult to watch. If you cannot access it here, view it on You Tube here.

No comments:

Post a Comment