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In the five weeks since Preston left the hospital, Ana has restarted him on CBD — now shooting it efficiently into his feeding tube. Preston went the first two weeks without suffering a grand mal, but his blinky seizures remained.
Focusing on ‘Natural’ is an important distinction because of the emergence of laboratory made synthetic CBD molecules coming to market. Hemp Meds is focused on creating the highest quality consumer products featuring premium cannabidiol (CBD) hemp oil.
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While some can be treated by targeting the specific areas of the brain where the seizures’ electrical overloads originate, Dravet’s seizures come from everywhere, the result of a genetic mutation that occurs in every nerve cell in the brain.
Then the next day, Preston suffered a grand mal seizure that left him writhing violently. He had another one the day after that. Getting him to eat or drink had become nearly impossible, and that meant he wasn’t getting consistent doses of either the CBD treatment or his tra***ional medications, both of which Ana tried to hide in Preston’s food or sweet tea.
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So Ana visited her CBD provider, who gave her oil at a 10:1 ratio of CBD to THC, and the next day she watched as her son ate better than he had in months: a plate of fried okra, a plate of potato chips smothered in barbecue sauce, a stick of string cheese, a Frosty and, most surprising of all, tuna salad with crackers.
But Ana’s jaw clenches.
Greenwood had been cautiously supportive of Ana’s move, in part because it preserved some of his input into Preston’s care. Tell a family no when they’re on the trail of hope, and they’ll leave you behind. For all of the parents asking him about moving to Colorado — Ana was not the first — Greenwood had told them the same thing: There’s no hard evidence it works, but there’s no hard evidence it’s causing harm, either.
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Preston’s grandmother, Milly, thought he had the munchies.
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.
A spectrum of illnesses afflict the children coming to Colorado for medical marijuana: cancer, autism, Crohn’s disease. Most, though, are seeking help for incurable forms of childhood epilepsy — diseases with names taken from medical-journal bylines: Dravet syndrome, Lennox-Gastaut syndrome and Doose syndrome.
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The few, small studies of its efficacy, though, are preliminary and even disputed. Federal laws against marijuana have hampered research on CBD for the past four decades. As a result, states have increasingly passed their own laws legalizing CBD, based on little more than stories such as Charlotte Figi’s and the hopes of families following in her path.
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The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
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Related: Epilepsy drug development is a sparse field
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