I’ve had this sinking feeling in my gut for years: that things would change, and for the worse.
Three in the morning—again—and I hear him gasp for air. Lights on, I run and detach the netted safety canopy over his bed and toss it aside. My boy’s face is pale, his exposed back cool to the touch. His wide-open eyes do not acknowledge me, nor does he turn to my voice. “He had another seizure,” I call to Michael, who comes quickly and sees what I do: the tongue click and swallow, the feeble attempts at sucking his thumb, the fixed, catatonic nature of his typically pendulous eyes, the sparse whimpers.
Shuddering and shivering, seizure-gas palpably bubbles uncomfortably through Calvin’s gut. Michael gathers him from his bed, our child folding in half like a rag doll full of sand, and carries him into ours. For a time, he writhes and twitches, then finally reaches his arms around my neck pulling my head into his before drifting off to sleep.
I don’t know how long the seizure lasted; they’re nearly silent now. I dread these the most. I fear he’ll have one and never wake up, his face smashed into the pillow, the mattress, the comforter. They’re almost weekly now—the ones I detect. Gone are the thirty-five, forty-seven, even seventy-eight day stints between them. And, though he’s down to two medicines, he’s on super high doses of both, high enough to knock any adult on their ass.
Earlier we’d dined with Luke and Sarah whose son is so like Calvin, save the seizures. I’d given Jacob a bedtime puppet show with his well-loved Monkey and plush blue Pup. In return he’d given me the biggest smile I’d ever seen him sport. I’d glanced at the time to see it was well past seven, relieved to know that Calvin hadn’t had a seizure, even though I’d more than half expected one. Our friends asked about the medical marijuana. I told them that we haven’t yet found a strain high enough in cannabidiol (CBD) and low enough in THC. I went on to mention hemp-seed oil which, from what I've read, is nearly all CBD, though not rich in it. “Why not try that?” Luke asked, and I considered the seizures, the worry, the dread, the pharmaceutical side effects and unknowns and inefficacy and I thought to myself, what’ve we got to lose? Perhaps this sinking feeling in my gut.
Three in the morning—again—and I hear him gasp for air. Lights on, I run and detach the netted safety canopy over his bed and toss it aside. My boy’s face is pale, his exposed back cool to the touch. His wide-open eyes do not acknowledge me, nor does he turn to my voice. “He had another seizure,” I call to Michael, who comes quickly and sees what I do: the tongue click and swallow, the feeble attempts at sucking his thumb, the fixed, catatonic nature of his typically pendulous eyes, the sparse whimpers.
Shuddering and shivering, seizure-gas palpably bubbles uncomfortably through Calvin’s gut. Michael gathers him from his bed, our child folding in half like a rag doll full of sand, and carries him into ours. For a time, he writhes and twitches, then finally reaches his arms around my neck pulling my head into his before drifting off to sleep.
I don’t know how long the seizure lasted; they’re nearly silent now. I dread these the most. I fear he’ll have one and never wake up, his face smashed into the pillow, the mattress, the comforter. They’re almost weekly now—the ones I detect. Gone are the thirty-five, forty-seven, even seventy-eight day stints between them. And, though he’s down to two medicines, he’s on super high doses of both, high enough to knock any adult on their ass.
Earlier we’d dined with Luke and Sarah whose son is so like Calvin, save the seizures. I’d given Jacob a bedtime puppet show with his well-loved Monkey and plush blue Pup. In return he’d given me the biggest smile I’d ever seen him sport. I’d glanced at the time to see it was well past seven, relieved to know that Calvin hadn’t had a seizure, even though I’d more than half expected one. Our friends asked about the medical marijuana. I told them that we haven’t yet found a strain high enough in cannabidiol (CBD) and low enough in THC. I went on to mention hemp-seed oil which, from what I've read, is nearly all CBD, though not rich in it. “Why not try that?” Luke asked, and I considered the seizures, the worry, the dread, the pharmaceutical side effects and unknowns and inefficacy and I thought to myself, what’ve we got to lose? Perhaps this sinking feeling in my gut.
Yes. Try that.
ReplyDeleteThis is great information thank you for writing about it - you and your friends are fortunate to have each other...so many people can fade away when times get tough but you have a great support system and your writing helps so many others...thinking of sweet brave Calvin
ReplyDeleteHi, I was wondering if you have tried acupuncture and/or Traditional Chinese Medicine. There are some herbs/combos of herbs that may provide the same benefit as MM.
ReplyDeleteno, we have not as their interaction with seizure drugs might not have been studied. if you know what they are please let me know.
DeleteAcupuncture has shown to help with theduration, severity and frequency of seizures. those who practice TCM believe that epilepsy is associated with one of the meridians. You can have Calvin try acupuncture first without using the herbs to see if this will help him. Please take a look at this link: http://www.taoofwellness.com/newsletters/Epilepsy2.pps
DeleteWith hemp oil, there isn't the same horrible risk of it suddenly not being available, right? I'll do a scan of PubMed this afternoon to see if there are any studies available.
ReplyDeleteHang in there.
sue, here is what one doctor who prescribes medical marijuana in the area says about hemp oil:
DeleteThe hemp extracts are brand new, and the medical community hasn't heard of them much. No one knows how long the FDA will let that go on - probably until big pharma gets upset that too many people are using it to replace their drugs. So far I've seen people replace both opioids and benzos with hemp CBD, without any withdrawal effects. For now it's working well for many, but not all of the patients who try it. One 6yo with Dravet syndrome is at approx 3 weeks seizure-free with 125mg of the CBD hemp oil daily with 2.5mg marinol qHS. It's not technically organic, but the beauty of hemp (don't get me started) is that it grows without fertilizer or pesticides and actually enriches the soil. The tops are used for seed, and now medicine, while the stalks are used for fiber and biomass. Incredible stuff. In a rational society, however, it wouldn't make any sense to extract cannabinoids from hemp. The medical cannabis plants simply produce so much more of it. The whole hemp CBD industry is likely going to grow fast and then disappear, either because the FDA gets involved or because medical cannabis becomes more legal and accessible.
so, it seems it still could be a liability in terms of supply.
xoxo