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She asks about the amount she’s giving. “Should I up it?”
She also began giving him his tra***ional seizure medicines spread out over three doses a day instead of two, and Preston was also receiving intensive therapies for speech and life skills. Somewhere in that mix, a harmony emerged.
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The Legal Status of CBD
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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Don Raynor holds Preston’s mouth closed and massages his throat
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“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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Even if the treatment is successful, though, no one knows what will happen if kids who have seized their whole lives suddenly stop. Do they develop normally? Or does their underlying con***ion continue to inhibit their growth?
The state health department, which manages the patient registry that all children using medical marijuana must join, offers almost no guidance.
Dravet isn’t like other epilepsies.
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“We’ve pretty much tried everything else we can,” she reasoned.
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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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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July 5 Preston wakes up for a moment during a series of myoclonic cluster seizures caused by Dravet syndrome. Preston can have hundreds of “blinky” or “butterfly” seizures per session. If the cycle is not broken, it can lead to grand mal seizures.
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