watching and waiting

Today is the eighty-first day since the last time Calvin had one of his typical, daytime, bath-time, three-plus minute, tonic-clonic seizures, the kind where he convulses and turns blue. Other than a couple-few, seconds-long, early morning partial seizures, Calvin's daytime seizures have all but disappeared. We can't be certain exactly why, but everything seems to point to the homemade THCa cannabis oil I've been giving Calvin during the day since late last February. The evidence is even more compelling considering we have weaned him off of over 50% of his benzodiazepine, clobazam, beginning last April.

In general, with the exception of dealing with a hysterical kid in the days preceding a big seizure—all of which are now occurring every seven to ten days in the middle of the night and/or just before dawn—Calvin is calmer, more well-mannered, more patient when he sits in our laps or when we ask him to wait, and is walking and attending to things far better than before starting the cannabis oil.

A little over two weeks ago, with the hope of eradicating Calvin's nighttime seizures, we began supplementing his regimen with a few drops of CBD cannabis oil at night and in the morning using, as a base, a honey-oil resin from our local dispensary to which I added MCT (medium chain triglyceride) oil. The oil is not fully decarboxylated (heated to eliminate the acidic compounds from the cannabinoids) so it is still rich in CBDa and slight in CBD (cannabidiol), the cannabinoid considered by some to be most useful in combating epilepsy. I figured I'd try giving it to Calvin anyway. Unlike pharmaceuticals, I'm not afraid to experiment with different forms of cannabis, particularly since I'm fairly certain the cannabinoids in them work best synergistically. The dispensary is working on more fully decarboxylating the honey-oil and when they do, we will likely switch to that.

In the meantime, we are watching and waiting. Today is day six since Calvin's last seizure. I'm hoping that the CBD is building up in his system and might soon work to thwart future ones. Only time will tell. If it does work, we'll resume his benzodiazepine wean hoping to get him completely off of the clobazam within six to nine more months, perhaps sooner.

Today, Calvin went to school happy. His morning was pretty relaxed, full of smiles, hugs and kisses for me and Michael. His balance has been amazing and yesterday he walked all the way to the fields—and then some—and back again before joining us at a crowded grocery store to walk some more and to bang and mouth the cold, glass refrigerator doors.

I'm feeling thankful these days, and I'm crossing my fingers.

Calvin waiting to bowl, photo by Mary Booth Scarpone


  1. Our fingers are crossed hard, our eyes are squeezed shut, and we're wishing, wishing, wishing!

  2. i think there's a very large circle of finger-crossers out here, christy. he looks so dear in this photograph, such soft rosy cheeks.
    in my motherhood years i had only 3 horrendous seizures to deal with--and they pushed me to the outer limits of sanity. i have only endless admiration for your (and elizabeth's) strength, goodness, patience. i hope to christ this new regimen continues to build up and help calvin; in the meantime, i'm crossing as many fingers as possible & still type.

  3. Christy, he looks so much better in this photograph, bless him!

    It sounds like a wonderful improvement and thank God, the oil is working after so many years of struggling! Reading this blog brought tears to my eyes, seeing how he has improved in almost every way! Was so glad to hear he went off to school happy and may the severity of his seizures get even better! Sending so much love, hope and prayers from South Africa... Thinking of you all!

  4. Amazing and wonderful and powerful.

  5. He looks wonderful in that picture!

  6. That's beyond wonderful! And he's bowling. I've come to love bowling since Katie started bowling with Special Olympics.

    I hope the weight has slipped from your shoulders, just a little.

  7. I'm so unbelievably pleased to be reading this!!! All my fingers and toes are crossed are crossed for you all.