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It was subtle. But Ana swore there was a change in her son. He was more talkative, more stable on his feet.
“I can’t be the parent who didn’t try,” said Janéa Cox, a mother from Georgia who brought her daughter to Colorado in March for treatment of seizures that left her unable to even breathe on her own. The move meant breaking up her family; her husband remained at home in Georgia.
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Four decades ago, a scientist in Utah envisioned a time when a medicine made from marijuana might be available at the pharmacy...
The nation’s leading researchers and pharmaceutical representatives working on new treatments for epilepsy gathered at a conference this June in San Francisco. They fit in a medium-sized hotel meeting room...
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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.
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.
It wasn’t until Preston was 6 years old that doctors finally put a name to his con***ion: Dravet syndrome. And in some ways, that was worse than not knowing at all because it meant there was no cure to find.
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Being Preston’s mother taught her not to cry because tears won’t make her son better. For her, there is a process: Try one thing, then move on to the next. Lessons can be learned and applied.
Turn the page, and there’s a picture of Preston in a white onesie. Then a picture of Preston sitting in a kid-sized Jeep.
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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July 23 An absent seizure looks and feels just like it sounds: Preston stopped interacting, staring into nothing, drool leaking from his mouth, his hands unmoving. It was a startling change from the blinking and jaw-working during his “normal” myoclonic clusters. Dravet syndrome children experience many types of seizures. The seizures can change, and some children will have a combination of seizure types, all during one episode.
“We’ve pretty much tried everything else we can,” she reasoned.
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Preston pulls back toward the lunchroom
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At 12 years old, Preston cannot spell his name. He cannot reliably count to 10. He is still learning his colors. He doesn’t know his mom’s name or where he lives or how to call home if he gets lost. He wobbles when he walks and falls over easily.
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