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Ana grabs his arm, but he pushes her back. She tackles him and squirts the oil into his mouth, but he coughs it back up. She reaches for her cellphone.
His cries fade to whimpers. His eyelids twitch with another seizure. Ana sits on the toilet, holding him on her lap as he quivers in her arms.
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While doctors at Children’s don’t exactly want their patients on CBD, they are eager to find out what it’s doing. Knupp told Ana that doctors at the hospital now recommend all patients have both an EEG and a bloodwork exam prior to starting CBD. They would like to run follow-up tests every three or four months.
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“An uncontrolled experiment”
Her bookshelf at home charted the journey and spoke to her struggle. First came “What to Expect in the First Year.” Then “Keeping Faith.” Then “Delmar’s Drug Reference for Health Care Professionals.” Then “Three Weeks to Say Goodbye.”
“The point of this is to get a baseline,” Knupp had told Ana, “so that after you’re on CBD, you can have a baseline to look at.”
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In advance of the move, Ana reduced the dose of one of the three main seizure medicines he takes — a drug called Onfi — because she had heard from other parents that CBD amplifies it. He was now taking about a third less than what Greenwood had prescribed, although she didn’t tell the doctor her plan.
They started with a drug called Depakote when Preston was 3 months old. But the seizures continued — as did the new treatments: Klonopin and Felbatol and Keppra. Zonegran and Topamax and Diamox and Banzel. Vitamin infusions. A special high-fat diet. An implanted electrical nerve stimulator. There were two other drugs not yet fully approved by the federal government that cost hundreds of dollars a month. There was another that has also been suggested for use in executions.
July 9 Ana Watson finally is able to get CBD oil for Preston. The journey hasn’t been without frustration. She has had to fill out many forms and file a change-of-patient record for the medical marijuana registry. She now is overwhelmed with worries: how much to buy and when; how strong it will be; how much to give Preston; whether to add THC.
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June 27 Ana Watson holds her son, Preston. He wants to look out the big window and see the miles go by in their new state but is being hit by clusters of myoclonic seizures.
Ana gets a firsthand view of the trimming and drying process
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