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Graphic: Inside look at Preston’s fight
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Watch Haleigh Cox was diagnosed with Lennox-Gastaut Syndrome as a baby. She is the namesake of “The Haleigh’s Hope Act,” a bill filed in Georgia to legalize cannabis oil high in CBD. The oil is used to control her seizures.
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.
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Leaving Children’s after the first visit, Ana still has questions about CBD. But doctors there have set up several new appointments to address other aspects of Preston’s care. He will soon have a feeding tube inserted into his stomach, allowing Ana to give him food and medicine consistently. She’ll take him to get fitted for a new helmet to protect him in falls.
Related: Researchers bemoan roadblocks to medical marijuana research
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The government safety sheets for each drug listed dozens of side effects. Tremors. Problems with walking or coordination. A potentially fatal rash. Panic attacks. Thoughts of suicide. Aggression.
“It smells like marijuana,” she laughed. “I didn’t think it would.”
“The big thing that parents are always saying,” Ana said, “is they want their child to say, ‘I love you.’ ”
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Two days later, they’re back again. A blue line squiggles furiously up and down on a computer screen.
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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“The vast majority of people, if they were going to respond, had a dramatic reduction of seizures,” Maa said. “That doesn’t represent the larger, global number of people who had exposure to it. We don’t know those true numbers yet.”
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Also known as cannabis oil or cannabidiol, industrial hemp oil has been growing in popularity as a self-treatment option for many people suffering from emotional or physical discomfort. While sometimes compared to medical marijuana, industrial hemp oil is not illegal, nor is it a psychotropic drug. Although cannabidiol is an ingredient in both regular and medical marijuana, the main component, THC, is only present in very small traces in cannabidiol cannabis oil. While some people may come across industrial hemp oil by looking for marijuana oil for sale, marijuana CBD is not the same. As mentioned, industrial hemp oil is not a drug, nor does it contain enough THC to produce a psychotropic effect.
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