4.06.2016

thirteen minutes with khalil

This morning at two-thirty, Calvin had the grand mal seizure I’d been expecting for a couple of days. The THC rescue med I gave him didn’t seem to stop the spasms which lasted longer than of late. Seizures this early in the morning usually translate into clusters of them, and the only way I’ve found to consistently thwart them is to give Calvin his benzodiazepine early. In this case, I gave it to him three-and-a-half hours before his usual time. I agonized over the decision. Eventually, I opted to, knowing that clobazam's half-life is long, and preferring to isolate the seizure rather than subject Calvin to more of them thus requiring rectal Valium to stop the cluster.

He slept fitfully for an hour then woke in a panic—heart forcefully racing, hyperventilating, repetitive humming. I’m fairly certain these episodes are not seizures but are, instead, benzo withdrawal symptoms or perhaps even agitation from the THC. For the next two hours I got head-butted in the mouth, whacked in the eye, smacked in the nose and shoved in the throat by a unsettled kid trying to escape his malaise. Eventually, I gave him an extra Keppra, which so far has seemed to keep additional seizures at bay.

Later, while Calvin spun in his jumper, I perused the news and my Facebook feed. I came across this video that a mother posted about her son Khalil, where she relates his perilous struggle with seizures, their resistance to drugs and her hope to use non-psychoactive CBD cannabis oil to relieve him of his misery. While the video lasts a mere thirteen minutes, time expands as it appears her sweet boy is seizing the entire time while in her arms.

Calvin once had a forty-five minute seizure which didn't initially respond to a host of emergency medications. Michael and I were left helpless at his hospital bedside—knowing that the longer seizures last the harder they are to halt—kissing him goodbye just when the seizure finally stopped. Life has not been so easy on Khalil and his mother. Doctors are misinformed and guarded, ignorant people have judged and, as a result, her son has been robbed of what might be his only lifesaving measure—cannabis. While I am considered a pioneer of medical marijuana in a legal state, Brittney and her family, who live in Kentucky where it remains illegal, are forced to leave all they know and love behind and become medical marijuana refugees.

At one point in her video Brittney desperately asks, "Why does a zip code define what medicines my son gets?"

I encourage you to watch the entire video to gain some insight into one mother’s plight to save her dying child. Most folks have little concept of how difficult and unjust life can be for these kids. The best we can do is to listen, understand and advocate for those whose fortunes are not as good as our own.

Someone said to me recently during a discussion on racial oppression, God gives us all our own row to hoe; I reject that self-reliant crap. For one, if there is a God to be believed, He/She/It is not up there doling out misery. And for another, it's noble and kind to help others whose rows are inexplicably steep.

If you cannot view the video below you can view it on You Tube here.

                     

4 comments:

  1. Thank you for sharing this. I cannot bear to watch the video--I've seen more seizures than I can bear, already. But thank you so much for sharing this important and compassionate and VERY SENSIBLE post!

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  2. What a brave and amazing mom. We watch our daughter struggle with seizures daily and totally understand her struggle.

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  3. Heart wrenching... I pray one day that this war against natural medical care options will cease. I pray none of us have to become refuges to save our lives... I pray we as a nation realize the importance of this medicine and begin to allow us the freedom of choice we have spent many lives in battle to secure

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