Parents denied treatment for daughter's severe seizures - KCTV5

Parents denied treatment for daughter's severe seizures

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Chloe Means loves riding in the car.   The 15-year-old loves the wind in her hair, and she is still a big fan of Barney the Purple Dinosaur. Chloe Means loves riding in the car. The 15-year-old loves the wind in her hair, and she is still a big fan of Barney the Purple Dinosaur.
KANSAS CITY, MO (KCTV) -

Chloe Means loves riding in the car.

The 15-year-old loves the wind in her hair, and she is still a big fan of Barney the Purple Dinosaur.

However, Chloe’s life isn’t easy. She was born with a rare genetic disorder and also has severe epilepsy.

Her days are spent wearing a padded helmet, and she has a special floor in her room. Her parents never know when a seizure will strike.

“'Bam! Four seizures. Back to back to back. Right before school. No warning. Just seizures,” said Chloe’s mom, Becky Means.

Chloe has tried multiple medications but struggles with the side effects and she’s still having seizures.

Last year, Missouri passed a law allowing cannabis extract to be used on some patients with severe epilepsy. The news gave Chloe’s mother new hope until she tried to get a doctor’s recommendation.

No hospitals in the Kansas City area, not even Children’s Mercy, will allow their doctors to write a recommendation for cannabis oil, also known as CBD oil. 

"I don’t think we should be blocked by someone in a suit sitting in an office because they don’t live this life," Becky Means said.

She’s not alone. Other Kansas City parents are running into the same problem

Carrie Bartlow’s 2-year-old daughter, Ramsey, also has epilepsy. Medication won’t control her seizures and doctors are now considering brain surgery.

"Would you like to get rid of seizures but then lose your left side? Or do you want to keep the seizures but still use your left side?" said Ramsey’s mother as she explains the risks.

KCTV5 News reached out to Children’s Mercy Hospital to find out why none of its doctors can write those recommendations. The hospital’s head of epilepsy and neurophysiology says it’s not like just writing a prescriptions for a medication approved by the Food and Drug Administration.

“It’s not because we’re holding the treatment,” Dr. Ahmed Abdelmoity said. “It’s because, again, safety is the number one concern at the hospital.”

Abdelmoity says more research is needed on cannabis oil.

Right now, there are no standardized strengths and doses for children. It’s not known if there are any side effects from long term use. There’s also concerns about interactions with epilepsy medications these already medically fragile children are taking.

It’s reasoning the FDA echoes.

On its website, it says, “It is important to conduct medical research into the safety and effectiveness of marijuana products through adequate and well-controlled clinical trials.”

“Sometimes, what families want might not necessarily be the best evidence or proven treatment for the child,” Abdelmoity said.

Children’s Mercy does plan to start a limited study on the use of cannabis oil in epileptic patients next year but it will not be widely recommended.

It’s reasoning Becky Means understands but she still struggles every time Chloe has a seizure.

“I don’t think it’s going to help everyone, help every epileptic kid but I there are some I think it will," she said.

Becky and Chloe Means plan to travel to the Comprehensive Epilepsy Care Center in St. Louis where doctors are allowed to write cannabis oil recommendations.

For more information on cannabis oil, click here.

For more on the FDA’s frequently asked questions about all medical uses of marijuana and cannabis, click here.

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