Unfortunately for us, marijuana is a Schedule 1 drug, a class of drugs assumed to be highly addictive, dangerous and without medical value. Cannabis sits on this list with heroin and LSD, but there is no longer a consensus within the medical community that marijuana belongs on this list. And so even promising trials are very limited. The government isn’t listening to the doctors.
The modern day War on Drugs is taking new prisoners, like my son Benjamin.
Tomorrow morning I will pause in Benjamin’s doorway as I have for the last 16 years and wait for a sign of movement. I will assess the color of his skin. If all seems well I will approach, welcome his smiling face, and adorn him with kisses. Five minutes later, he will likely have his first seizure of the day.
It will start with a slight startle. His arms will shoot out while his eyes roll up, and he will gasp. It happens as fast as a hiccup. If it’s a good day, it won’t progress. Perhaps he’ll stare off for a brief time. Otherwise, the intensity of the arm throws, eye rolls, and abnormal inhalations will increase. There will be less time between startles, less time to breathe. If it’s a particularly bad day, his arms will get stuck in extension firing rapid, short, jerky movements. His eyes will fix to one side. He will not look at me when I ask him, “Where’s mommy?” He will not be able to swallow the saliva dripping down his throat, threatening to infiltrate his lungs. On the worst of days he will require emergency action, in the form of rectal Valium.
According to The Epilepsy Foundation, Benjamin is one of more than 2 million people in the United States who have epilepsy. Roughly 300,000 of those individuals are children under the age of 15. Two percent to 5 percent of children with epilepsy have Lennox-Gastaut Syndrome, like my son.
Benjamin’s Lennox-Gastaut Syndrome is caused by a rare brain malformation. We gave him his first seizure medication when he was seven and a half months old. We’ve been fighting this losing battle ever since. In the last 16 years we’ve tried at least 10 different types of medications. He is currently taking a combination of three anti-convulsants and still has seizures daily.
Before Benjamin, I had a rather Hollywood image of seizures. One that assumes medications can obliterate their existence. Real life doesn’t follow this script. Specific types of seizures are treated with specific medications, each with a list of side effects ranging from drowsiness to organ failure. Medicine fails to control seizures in three out of 10 people living with epilepsy.
For these people there are supplemental treatments. There are restrictive diets that in no way mirror typically balanced nutritional recommendations. Some people opt for surgical implants that deliver electrical impulses. There are even surgeries to remove parts of the brain. These treatments do not guarantee seizure control either. One out of 150 patients whose epilepsy cannot be controlled are at risk of death from Sudden, Unexpected Death in Epilepsy, SUDEP.
We need better treatment options. My son, and all those like him, deserve a chance to live a day without seizing. When the government insists on keeping a myopic attitude, they discredit the scientists that are proving the legitimacy of medical marijuana. They are fighting to ensure the death of one out of 150 patients and take away what little hope families have in their war against epilepsy.
Medical marijuana is not your corner dealer’s pot. I would like federal law to support the scientists who are working to deconstruct this plant and use its natural compounds to help desperate patients fight debilitating disorders like epilepsy. I would like Benjamin’s neurologist to be able to prescribe a form of cannabis that has been tested, is consistent in its formulated nature, covered by insurance, and could be administered to him by his school nurses, like all the rest of the life saving poisons he ingests daily.
For now, however, we are at home waiting on the front line until the drug manufacturers, doctors, and politicians figure out exactly what war they’re fighting, or until I open Benjamin’s door to find he’s already lost the battle.
Joanne De Simone lives in New Jersey, has her degree in dance and special education, and is the mother of two sons with special needs. She blogs at Special Education Mom.
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