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It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
Slowly working his way through the potatoes, Preston’s hands stopped and his eyelids flickered for a few seconds before popping back open. The first seizure of the day had come and gone.
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October 8 Horticulturist Penn Mattison of Tennessee heads to the holding racks with cannabis plants during the Realm of Caring hemp harvest. Penn and his family moved to Colorado in January, 2014, looking to help his daughter with undiagnosed intractable epilepsy. “Everything just worked out,” he said about working for the Realm.
“For the doctor to know what they need to know about an illegal drug is a very high expectation,” said Dr. Jacqueline French, an epilepsy specialist at New York University’s Langone Medical Center. She said CBD is “driving the conversation” many doctors now have with their patients.
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She checked her phone for online answers. Finally, eager to move on, she set the phone down.
“Yes,” Ana sighs, “we’ve tried everything.”
So, the entire day after that first dose, Ana watched Preston like a poker player looking for a tell.
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Ana Watson blocks the door to keep Preston inside
But, even now, the seizures remain a mystery. Some little eye-flutter seizures cause leaping spikes on the screen. Some seem to skip by without a change in the pattern. So chaotic is Preston’s brain that, looking later at the electroencephalogram, or EEG, doctors will have a hard time telling from the readings when he was awake and when he was asleep, when he was seizing and when he was still.
November 5 Ana Watson and MGA Home Healthcare nurse Chelle carry Preston to a bean-bag chair. Preston has suffered continuous myoclonic clusters most of the day. He had a 30-second grand mal seizure early in the afternoon. Preston’s new normal is to go straight back into myoclonic clusters after a seizure. Dravet syndrome children usually have a variety of seizure types, which can change for a number of reasons.
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“I know!” Ana pleads. “I’m sorry!”
It wasn’t until his second year of life that Ana began to notice the toll the seizures were taking. When other kids Preston’s age were learning more words and stringing them into sentences, he didn’t. When walking and grasping led to running and catching for other children, it didn’t for Preston. It was as though his life ground to a stop, even as time ticked on.
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May 8 The dregs of his afternoon seizure medications are still on his lips as Preston rests on his porch after a long day of school interrupted by numerous myoclonic seizures.
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Myoclonic seizures Brief seizures characterized by little muscle jerks. Preston’s eyelid flutters are a myoclonic seizure.
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