Welcome to EpilepsyU.com a social network dedicated to the epilepsy community

Share This Post

Epilepsy / Seizures / Treatment

Pot laws creating a new class of refugees

Pot laws creating a new class of refugees

coloradoCOLORADO SPRINGS, Colo. — When Mohammad Halabi was a boy, his parents fled war in Lebanon to give their child a chance at life. This month, as Halabi drove to Denver International Airport to pick up his wife and 2-year-old daughter, he realized he was doing the same thing.

Halabi’s daughter, Mia, has severe epilepsy. Treatment by some of the country’s best neurologists and with the most powerful drugs has done little. This year, doctors told him to prepare for her death.

“No matter what we did, nothing helped. She just got worse until she was almost a vegetable,” he said. “She had no chance at life.”

Then in July, he and his wife, Miriam, saw an online video of a Colorado Springs girl’s astounding recovery from epilepsy using an oil made from a special strain of marijuana. The Halabis live in New York City, where medical marijuana is illegal.

“As soon as we saw it, we knew we had to go,” he said.

Families of children with severe medical problems are moving to Colorado from all over the country to get the oil that appears to be working. They call themselves marijuana refugees.

“These families are really desperate,” said Dr. Margaret Gedde, a Stanford-educated Colorado Springs pathologist who has recommended many of the arriving children for medical marijuana. “They’ve tried all the drugs, and nothing has worked. This is the only option left.”

Repeated studies going back to 1970 have shown a strong potential for cannabidiol to help epilepsy, but federal laws made cannabis difficult to study in the United States. In addition, there is a stigma in the medical field.

While pharmaceutical grade cannabidiol is available in other countries, clinical trials for FDA approval in the United States are just getting underway.

In to 2012, a 5-year-old girl named Charlotte Figi who has a genetic disorder called Dravet syndrome that causes catastrophic seizures, was given a new chance at life from marijuana.

Doctors tried everything from barbiturates to extreme diets to control the disorder, but nothing helped. She was in the hospital constantly. Twice her heart stopped. Not wanting to prolong their child’s suffering, her parents signed a “do not resuscitate” order.

As a last-ditch effort, they decided to try marijuana, and it worked.

Experimenters developed a new strain of marijuana that was exceptionally low in THC — the chemical that makes users stoned — and exceptionally high in a chemical called cannabidiol that has no intoxicating effects, but that a handful of decades-old studies suggested might reduce seizures.

The original developers called it Hippie’s Disappointment, because no one wanted to buy it. They have since renamed it Charlotte’s Web after a girl who once had 300 seizures a week and now has on average fewer than one.

Source: DAVE PHILLIPS, The (Colorado Springs) Gazette

Share This Post

3 Comments

  1. im so glad for these kids and the familys I was born with Epilepsy .they say I grew out of it but im not I don’t think so , I ,haven’t had a seizure in years , so my best gose out to all of you kids and your families ..god bless and best to you all…always..

  2. The fact that this article is on the Epilepsy U website/or Central Florida Epilepsy website…does this mean that the Epilepsy Foundation supports the research and development of marijuana for medicinal purposes in the use of treating Epilepsy? If so, this is BIG! Are you backing those trying to get this passed as a law in Florida?

    • Vivian, we are certainly supporting the research that will determine the efficacy of CBD treatment of Epilepsy. We are indeed spreading the news of the petition to put Medical Cannabis on the ballot in Florida. We are neither for nor against using Cannabis as a treatment for epilepsy until enough research proves its potential and the legal status is determined by the popular vote.

Comments are now closed for this post.