I don’t even know where to start, I’m so tired. I guess I’ll get right to the point and say that the one thing that is harder for me than taking care of my non-verbal, incontinent, unstable, legally blind, eleven-year-old boy who has medically refractory epilepsy, is taking care of him when he is sick. When he's ill, its just one problem after another.
Calvin woke at one-thirty this morning and vomited. He was crying, so I knew the retching wasn’t due to a partial seizure. Unlike some children, I can’t lead Calvin to the toilet or tell him to spit up in a bucket or bedpan. I have to crawl into bed with him and struggle to keep him on his side so that he doesn’t choke on his vomit and aspirate, because he seems to want to be on his back when he throws up.Then I do my best to try to catch his vomit in a towel. As he grows it’s getting harder to restrain him and it doesn't help that he doesn’t understand. Being in bed with him when he is sick means that I usually get puke in my hair and on my face. Thankfully, it doesn’t bother me, I suppose because I am his mother.
Afterwards, the poor kid was rubbing his head madly, so I gave him an acetaminophen suppository in case he had a headache. He went back to sleep for an hour then woke up and vomited again. At 3:45 a.m. he had a three to five-minute tonic-clonic (grand mal) seizure. During these, his body stiffens then convulses—every inch of it. Michael and I watched his fingers and lips turn blue from lack of oxygen. I held a bottle of lavender under his nose and the convulsing stopped.
Clobazam, the benzodiazepine we are gradually weaning Calvin from, has a long half-life (18 hours for the parent drug clobazam and over 50 hours for one of its metabolites) so we gave him his morning dose two hours early to thwart a second grand mal. This strategy has seemed to work in the past. Unfortunately, forty-five minutes later Calvin awoke to a complex partial seizure, one in which he does not convulse but instead is semi-conscious with a rapid heartbeat and shallow, if any, breathing. I took a rectal temp which was 100.3 degrees, so I gave him an ibuprofen which he couldn't swallow at first. Calvin’s complex partial seizures have been long these days—upwards of three and four minutes—and I always fear they will “secondary generalize” into a grand mal, meaning they will spread from an isolated part of his brain to his entire brain. With this in mind we decided to give Calvin the dreaded Diastat—rectal Valium—which usually does a good job of stopping clusters of grand mal seizures, but can wreak havoc with Calvin’s behavior and sleep patterns because of its addictive nature, short half-life and rapid withdrawal.
Calvin hasn’t had any more grand mal seizures so far today, but in all he has had five, long, partial seizures. After the second one I gave Calvin 8 mgs of THC rescue med, but it did nothing to thwart the others.
By mid-morning, I had a thought: what if we gave Calvin a temporary increase in his Keppra? No neurologist has ever mentioned this option, so I emailed Calvin’s doctor and he confirmed that the method is sometimes used to control spates of seizures. I have no idea why neurologists don't, as a rule, equip their patients with these helpful strategies; I’m just thankful that I am a problem solver. So, we gave Calvin a half tablet of Keppra and will give him another half tab between his lunch and bedtime doses.
So far, no additional seizures since eleven-thirty this morning, though he’s really not himself. So I ask myself some of the same questions my dear friend Elizabeth did about her child last night:
is he sick? is he suffering a withdrawal episode? is it puberty? is it the recent increase in Keppra? is he outgrowing his cannabis oil doses? is it the fever? is it the acetaminophen-ibuprofin-clobazam-keppra-THC-THCA-CBD combo? WTF?
As usual, I can’t answer my own questions. All I can do is have a hunch, which is that this rash of seizures is a benzodiazepine withdrawal/puberty combo, and there's not too much I can do but what I've already done.
Although, next, I think I'll research acupressure and epilepsy. You readers know anything about that?
Calvin woke at one-thirty this morning and vomited. He was crying, so I knew the retching wasn’t due to a partial seizure. Unlike some children, I can’t lead Calvin to the toilet or tell him to spit up in a bucket or bedpan. I have to crawl into bed with him and struggle to keep him on his side so that he doesn’t choke on his vomit and aspirate, because he seems to want to be on his back when he throws up.Then I do my best to try to catch his vomit in a towel. As he grows it’s getting harder to restrain him and it doesn't help that he doesn’t understand. Being in bed with him when he is sick means that I usually get puke in my hair and on my face. Thankfully, it doesn’t bother me, I suppose because I am his mother.
Afterwards, the poor kid was rubbing his head madly, so I gave him an acetaminophen suppository in case he had a headache. He went back to sleep for an hour then woke up and vomited again. At 3:45 a.m. he had a three to five-minute tonic-clonic (grand mal) seizure. During these, his body stiffens then convulses—every inch of it. Michael and I watched his fingers and lips turn blue from lack of oxygen. I held a bottle of lavender under his nose and the convulsing stopped.
Clobazam, the benzodiazepine we are gradually weaning Calvin from, has a long half-life (18 hours for the parent drug clobazam and over 50 hours for one of its metabolites) so we gave him his morning dose two hours early to thwart a second grand mal. This strategy has seemed to work in the past. Unfortunately, forty-five minutes later Calvin awoke to a complex partial seizure, one in which he does not convulse but instead is semi-conscious with a rapid heartbeat and shallow, if any, breathing. I took a rectal temp which was 100.3 degrees, so I gave him an ibuprofen which he couldn't swallow at first. Calvin’s complex partial seizures have been long these days—upwards of three and four minutes—and I always fear they will “secondary generalize” into a grand mal, meaning they will spread from an isolated part of his brain to his entire brain. With this in mind we decided to give Calvin the dreaded Diastat—rectal Valium—which usually does a good job of stopping clusters of grand mal seizures, but can wreak havoc with Calvin’s behavior and sleep patterns because of its addictive nature, short half-life and rapid withdrawal.
Calvin hasn’t had any more grand mal seizures so far today, but in all he has had five, long, partial seizures. After the second one I gave Calvin 8 mgs of THC rescue med, but it did nothing to thwart the others.
By mid-morning, I had a thought: what if we gave Calvin a temporary increase in his Keppra? No neurologist has ever mentioned this option, so I emailed Calvin’s doctor and he confirmed that the method is sometimes used to control spates of seizures. I have no idea why neurologists don't, as a rule, equip their patients with these helpful strategies; I’m just thankful that I am a problem solver. So, we gave Calvin a half tablet of Keppra and will give him another half tab between his lunch and bedtime doses.
So far, no additional seizures since eleven-thirty this morning, though he’s really not himself. So I ask myself some of the same questions my dear friend Elizabeth did about her child last night:
is he sick? is he suffering a withdrawal episode? is it puberty? is it the recent increase in Keppra? is he outgrowing his cannabis oil doses? is it the fever? is it the acetaminophen-ibuprofin-clobazam-keppra-THC-THCA-CBD combo? WTF?
As usual, I can’t answer my own questions. All I can do is have a hunch, which is that this rash of seizures is a benzodiazepine withdrawal/puberty combo, and there's not too much I can do but what I've already done.
Although, next, I think I'll research acupressure and epilepsy. You readers know anything about that?
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| Photo by Michael Kolster |
Sounds all too familiar. The nonverbal piece is certainly the hardest. If our kids can tell us, and if they can understand us, then at least we can help. Know that you're not alone. Calvin has a twin. You have a sister. Together we can at least understand the struggle.
ReplyDeleteWe've both had a humdinger of a day. We need to talk. And I had the same thoughts about acupuncture, but in my case it'd be going BACK to Dr. Jin who worked with Sophie for years and me for more years than that. Stay posted. And I'll say a prayer to the fucking gods that they give our boy and girl a break.
ReplyDeleteBless your hearts, both of you....and the children too!
ReplyDelete