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A national survey of doctors by the American Epilepsy Society found that while 94 percent said they have been asked by a patient about using cannabis to control seizures, fewer than a third would actually recommend that patients try it. Another 13 percent said they would support its use but would rather have another doctor provide the recommendation needed to obtain it.
This is marijuana that often comes in medicine bottles, an oil extract from cannabis plants that is frequently squirted under a patient’s tongue. It’s the opposite of most commercial cannabis. Rather than being high in THC — the plant’s psychoactive chemical — the marijuana is low in THC and rich in CBD, a compound that does not get users stoned but has shown medicinal potential.
A desperate hope and well-publicized stories about kids who have responded to the drug drive the families here, despite scant research on CBD’s overall efficacy. Scientists know so little about the treatment that it’s not even clear what CBD might do in the brain to impact seizures.
“We don’t make recommendations about the marijuana therapy because we don’t have the information to do that,” said Dr. Amy Brooks-Kayal, the head of pediatric neurology at Children’s. “We feel very strongly that we need to act on good medical and scientific evidence, and that doesn’t exist.”
Milly gathered Preston up and sat him on her lap in a chair. He breathed heavily, wheezing in and huffing out. His eyes were shut.
Ana Watson and nurse Chelle Bennett carry Preston
A San Diego company is producing and selling what could be a legal alternative to medical marijuana.
Was it working?
May 8 Ana Watson has to keep a tight rein on her son, Preston, as they head off to school. “He is fearless,” she said. “He will walk straight off of the steps without looking down to see where he’s going.” Preston also acts totally on impulse “if he sees something he wants. Or if he gets a chance, he will run right after it — and he’s fast.”
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.
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.
A family photograph of Preston as a baby.
Preston isn’t feeling well
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