It really is a terrifying sound, particularly considering it comes from my sweet little boy. Calvin's grand mals, which usually emerge in the wee hours of the morning, begin with a blood-curdling gasp-scream-cry, ripping me out of deep sleep into hyperspeed.
Though Calvin is having fewer monthly seizures overall, they continue happening with lamentable regularity. He usually has at least one grand mal per week, though in the past six months he's had small clusters of them which increase his monthly total. Thankfully, his complex partial seizures have diminished greatly since January; in April we saw only three and in May Calvin had just two. And though he's had what amounts to thousands, his seizures are still alarming.
Yesterday, after his seizure at 4:40 a.m., we kept him home from school again and from joining his classmates on a rare field trip aboard a train headed to the next town south of here. It would have been his first time riding a train.
Calvin misses so much of what life has to offer.
I spent part of the day—between shadowing Calvin, encouraging him to drink liquids, giving him suppositories and changing his diapers—further researching fecal microbiota transplants (FMT), an emerging treatment for diseases such as Crohn's and for neurological disorders such as autism and epilepsy. I had come across a clinical trial being conducted at China's Nanjing Medical University, and had written its principal. She/he wrote me back saying that the study is ongoing but that it appears that FMT will likely be helpful in controlling (perhaps curing?) some people's epilepsy. I also read an account last week about a girl whose seventeen-year battle with epilepsy ended when her Crohn's disease was treated with FMT and her seizures stopped.
When I wrote to Calvin's neurologist inquiring about prescribing FMT his response was, not surprisingly, what I'd describe as skeptical. Fully anticipating such a response I had also contacted Calvin's primary care provider, Katie, who is a badass nurse practitioner. Not surprisingly, later that same day she spoke with a colleague who hooked her up with a local gastroenterologist who had previous experience using FMT at Boston Children's Hospital. I am eager to hear back what our options for treating Calvin might be. No doubt I am going to push for this since so many pharmaceutical antiepileptic drugs have failed him, and if FMT doesn't stop his seizures, maybe it will help his digestion, reduce his constipation and perhaps improve his behavior.
In the meantime, Calvin went to school today. I'm sitting here in front of a fire in the wood stove because it is a raw fifty-five degrees outside. My in-laws left yesterday morning. We had a wonderful visit full of interesting, sometimes intense, conversations about politics, family and aging, benzodiazepines and opioids. I am deeply grateful for having such caring in-laws who regularly uproot themselves from the comfort of their Florida home to come visit us since we cannot legally board a plane carrying Calvin's cannabis oil. But with each passing year, as they inch toward their early to mid-eighties, the trips get harder for them, so I hope soon medical marijuana will be decriminalized so we can travel freely without fear that Calvin and/or his cannabis oil will be confiscated.
One last update: I'll soon be making a new kind of THCA cannabis oil using a relaxing indica strain rather than a hybrid for giving to Calvin at bedtime, hoping it will quell his nighttime seizures. As always, knock on wood and cross your fingers and toes.
Though Calvin is having fewer monthly seizures overall, they continue happening with lamentable regularity. He usually has at least one grand mal per week, though in the past six months he's had small clusters of them which increase his monthly total. Thankfully, his complex partial seizures have diminished greatly since January; in April we saw only three and in May Calvin had just two. And though he's had what amounts to thousands, his seizures are still alarming.
Yesterday, after his seizure at 4:40 a.m., we kept him home from school again and from joining his classmates on a rare field trip aboard a train headed to the next town south of here. It would have been his first time riding a train.
Calvin misses so much of what life has to offer.
I spent part of the day—between shadowing Calvin, encouraging him to drink liquids, giving him suppositories and changing his diapers—further researching fecal microbiota transplants (FMT), an emerging treatment for diseases such as Crohn's and for neurological disorders such as autism and epilepsy. I had come across a clinical trial being conducted at China's Nanjing Medical University, and had written its principal. She/he wrote me back saying that the study is ongoing but that it appears that FMT will likely be helpful in controlling (perhaps curing?) some people's epilepsy. I also read an account last week about a girl whose seventeen-year battle with epilepsy ended when her Crohn's disease was treated with FMT and her seizures stopped.
When I wrote to Calvin's neurologist inquiring about prescribing FMT his response was, not surprisingly, what I'd describe as skeptical. Fully anticipating such a response I had also contacted Calvin's primary care provider, Katie, who is a badass nurse practitioner. Not surprisingly, later that same day she spoke with a colleague who hooked her up with a local gastroenterologist who had previous experience using FMT at Boston Children's Hospital. I am eager to hear back what our options for treating Calvin might be. No doubt I am going to push for this since so many pharmaceutical antiepileptic drugs have failed him, and if FMT doesn't stop his seizures, maybe it will help his digestion, reduce his constipation and perhaps improve his behavior.
In the meantime, Calvin went to school today. I'm sitting here in front of a fire in the wood stove because it is a raw fifty-five degrees outside. My in-laws left yesterday morning. We had a wonderful visit full of interesting, sometimes intense, conversations about politics, family and aging, benzodiazepines and opioids. I am deeply grateful for having such caring in-laws who regularly uproot themselves from the comfort of their Florida home to come visit us since we cannot legally board a plane carrying Calvin's cannabis oil. But with each passing year, as they inch toward their early to mid-eighties, the trips get harder for them, so I hope soon medical marijuana will be decriminalized so we can travel freely without fear that Calvin and/or his cannabis oil will be confiscated.
One last update: I'll soon be making a new kind of THCA cannabis oil using a relaxing indica strain rather than a hybrid for giving to Calvin at bedtime, hoping it will quell his nighttime seizures. As always, knock on wood and cross your fingers and toes.
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| Calvin and his buddy Gpa |
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