For days on end the sky soaks the earth, its greyness punctuated only by a smattering of crimson, orange and yellow leaves still clinging to the trees. The pall of swollen clouds belies the time of day. Is the barometric pressure low? Is a full moon nigh? Is it the benzo withdrawal? Whatever it is, I dread the tempest that is coming to claim my son.
By nightfall Calvin recoils into his aura, or perhaps into his coping mechanism. He’s not attending to anything or anyone beyond the snapping of his own fingers in front of his face. He juts his jaw in a way that makes him hardly recognizable. Michael is gone. The car’s instruments are on the fritz. A virus is lurking. I step into a deluge. My broken umbrella nearly caves. The wind throws sheets of rain sideways. I can't see where I am going.
All night long the white noise of the downpour helps me sleep, but just before dawn, when I think it has let up, I hear Calvin screech, so I run.
“Seti!” I call to my friend who is asleep in the next room, “I need you!” She comes and I ask her to time the seizure, which is violent and scary and shows no signs of stopping.
“He’s so pale,” I lament, and I kiss him several times on the neck.
“Breath, Calvin!” I tell him, and I kiss him some more, then I ask Seti to stay with him while I fetch the cannabis oil.
He’s still jerking when I part his lips to drop in the liquid gold. Using my finger I rub the cannabis oil well into his gums. I want it to stop the seizure. I don't want to use the rectal Valium. A few minutes later Calvin whimpers and begins to move his hands to his mouth. I ask Seti how long it was.
“Six and a half minutes,” she tells me, and I begin to cry.
She hugs me, then helps me transfer Calvin’s limp body from the bed to the changing table where I give him a new diaper and pajama pants, take his temperature and give him two acetaminophen suppositories for the ranging head and body aches I know he’ll suffer when he awakes. Then I crawl in next to my boy and spoon him as he shivers, and Seti turns out the light. Pressing my hand to his chest I feel his birdlike heartbeat. The tempest hasn't let up. I silently rage against it, while at the same time hoping for the universe to bring us clear skies and, at the very least, a little balance.
By nightfall Calvin recoils into his aura, or perhaps into his coping mechanism. He’s not attending to anything or anyone beyond the snapping of his own fingers in front of his face. He juts his jaw in a way that makes him hardly recognizable. Michael is gone. The car’s instruments are on the fritz. A virus is lurking. I step into a deluge. My broken umbrella nearly caves. The wind throws sheets of rain sideways. I can't see where I am going.
All night long the white noise of the downpour helps me sleep, but just before dawn, when I think it has let up, I hear Calvin screech, so I run.
“Seti!” I call to my friend who is asleep in the next room, “I need you!” She comes and I ask her to time the seizure, which is violent and scary and shows no signs of stopping.
“He’s so pale,” I lament, and I kiss him several times on the neck.
“Breath, Calvin!” I tell him, and I kiss him some more, then I ask Seti to stay with him while I fetch the cannabis oil.
He’s still jerking when I part his lips to drop in the liquid gold. Using my finger I rub the cannabis oil well into his gums. I want it to stop the seizure. I don't want to use the rectal Valium. A few minutes later Calvin whimpers and begins to move his hands to his mouth. I ask Seti how long it was.
“Six and a half minutes,” she tells me, and I begin to cry.
She hugs me, then helps me transfer Calvin’s limp body from the bed to the changing table where I give him a new diaper and pajama pants, take his temperature and give him two acetaminophen suppositories for the ranging head and body aches I know he’ll suffer when he awakes. Then I crawl in next to my boy and spoon him as he shivers, and Seti turns out the light. Pressing my hand to his chest I feel his birdlike heartbeat. The tempest hasn't let up. I silently rage against it, while at the same time hoping for the universe to bring us clear skies and, at the very least, a little balance.
oh, jesus, christy... i read you and i read elizabeth and i salute you two women, the truest white-hot stars in our universe. everyone else pales in comparison.
ReplyDeleteI don't even know what to say. I can't imagine watching my child seize for 6 1/2 minutes, helpless. I'm glad your friend was their for you. Take care woman.
ReplyDeleteOh, dear. I don't know how we keep doing this, but we do. I'm far away, Christy, and then I'm right there beside you. I hope the day was better.
ReplyDeleteQ: Possibly benzodiazepine withdrawal syndrome? In your extensive research and obvious expertise, when epileptics switch to cannabis oil from benzo meds (i.e. vallium) is there a period of time to adjust with various side effects? I looked at Wikipedia and seems to be a long list of withdrawal potential side effects, which can apparently occur for years, including of course, more seizures. Do benzos need to be phased out? Is quitting cold turkey a disaster? Any thoughts? I ask because I have a daughter who I want to switch from benzo to cannabis but am worried about withdrawal side effects.
ReplyDeletedear anonymous,
Deletecalvin is likely suffering withdrawal from his benzo (clobazam: onfi) but probably not suffering from the benzo withdrawal SYNDROME itself because we are weaning him so slowly ... 10% every two weeks or more, which means it will take us over a year to get him totally off of it. benzo withdrawal syndrome can occur when weaning benzos too quickly or by stopping abruptly. you CANNOT safely stop benzo's cold turkey!!! there can be serious side effects if one weans too quickly, including seizures.
i have heard from other parents that cannabis interacts with benzos and that cannabis can increase the benzos' side effects. we have not necessarily seen this, but keep in mind that calvin is non-verbal so it would be difficult to know for sure. we started calvin on cannabis in february when he was on 32.5 mg of onfi per day. since then we have weaned him down to 15 mg per day with little trouble except some sleep disturbances and his last two seizures were more convulsive than usual. but that might simply be the withdrawal process and we hope they even out over time once we are able to get him off.
we are also going to try adding a high CBD cannabis oil to his bedtime dose. right now he is taking my homemade THCA cannabis oil which has done wonders to control his daytime seizures, but we now want to tackle his nightime seizures and we think the high CBD might help. while we add this new cannabis oil we will pause the benzo wean so we don't have more than one variable to deal with.
hope this helps you. good luck!