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After Preston’s birth, the doctors told Ana that his strange leg twitches were common — the result of underdeveloped musles. It was three months later that she learned the doctors were wrong.
South Carolina
An Oceanside family, desperate to save their dying son, has turned to medical marijuana. They say marijuana oil has helped cure the seizures that almost took his life. NBC 7’s Omari Fleming reports. (Published Wednesday, Jan. 8, 2014)
The seizure — the second grand mal in a week — flustered Ana. And that’s why she finds herself back at the house in eastern Boulder County. Jason Cranford meets her on the porch.
September 3 Ana is trying a new way of giving Preston his oil. She is giving him straight THC by mouth separately from the CBD oil she gives him in his feeding tube. He hated it. She squirted it in and he started spitting and sputtering as soon as he tasted it. She ended up mixing it with formula and using his feeding tube. By using the oil separately she can figure his dosing ratios for tighter control.
Unfortunately the bioavailable CBD is at an infant stage with little to no research proving that lipid or any other technology is more effective. What is unique about the ViPova brand is that they seem to really care about quality and have created a higher end innovative CBD tea product. There are many challenges with this product beyond being an overpriced tea. You have to take ViPova at their word that there is actually CBD in their tea.
May 29 Jon Stanley follows a carefully designed watering schedule for the cloned plants and the more mature high-CBD strains of cannabis in their vegetative state.
Ana atson keeps a sharp eye
June 18 A few days before moving to Colorado in search of new treatments for Preston, Ana takes the family to the shore in North Carolina for a short vacation.
“You’re overdoing it,” Milly admonishes. “Skipping it is not going to hurt him.”
Consider how many people have died from cancer in the last 40 years. Now take a look at the National Cancer Institute website.
Some physicians are now stepping forward to work with providers on clinical trials for CBD, and doctors at Children’s have begun recording more specific details of the CBD products their patients are using — who is providing the medical marijuana and how much the child is taking, for instance. But the broader dynamic still hinders the study of CBD’s effectiveness. And that only increases the uncertainty that hangs over families such as Ana’s in their Colorado exile.
May 12 Preston pulls back toward the lunchroom with Regina Lane, his in-school nurse, as he hears a friend in the hallway. Regina has been with Preston for five years. She knows that if something catches his attention, he will head in that direction. She also knows how to persuade him to focus on what he might be doing.
The hospital didn’t see any improvement in the before-and-after EEGs of four kids whose seizures appeared to lessen significantly. That may have been due to something called “electroclinical dissociation,” where the seizure still occurs but its outward indicators disappear. It also might be that parents can pick up on smaller improvements than an EEG can, said Dr. Kevin Chapman, a pediatric neurologist at Children’s who was a co-author on the study.
Ana’s mom, Milly, stirs more medicine into ice cream and brings it over. But Preston won’t eat.
“He is quite capable of going into a seizure that is basically all the time — all day and all night,” Greenwood said.
“That,” she breathed back in, “was pain.”
Many of the families arriving in the state for medical marijuana — as well as those already living here — seek out the care of specialists at Children’s Hospital Colorado. About 100 kids who see doctors at the hospital have tried a CBD treatment.
“When these kids come, we hear a lot about it,” said Dr. Larry Wolk, head of the Colorado health department and a skeptic of the treatment’s success. “They get their CBD oil or their Charlotte’s Web. And if they respond, we continue to hear about it. If they don’t, they quickly disappear.”
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