By Beth Dodd:
At least 100 families in the last year have moved to Colorado as “medical refugees” seeking help for their sick children. Many of these kids suffer from Dravet Syndrome, a hard-to-treat nightmare form of epilepsy that can cause dozens or even hundreds of seizures every week. If medications do help, they can restrict the child’s ability to speak, walk, or even eat.
Dravet Syndrome, also known as myoclonic epilepsy of infancy or SMEI, is a rare, severe form of uncontrollable epilepsy. The first seizures usually start before a child is one year old. The incapacitating involuntary muscle spasms can last more than 30 minutes or come in clusters, one after the other. It is a devastating disease.
Many kids with Dravet Syndrome take dozens of medications before being offered last resort treatments like surgical removal of the part of the brain or medically induced coma. But now some desperate parents have discovered another option – medical marijuana.
A variety of marijuana called Charlotte’s Web is giving new hope to these families. Named after Charlotte Figi, a little girl from Black Forest with Dravet Syndrome, the strain is high in cannabidiol or CBD. The medication is made from an extract of the marijuana plant mixed with olive oil and consumed in a drink or in food. Scientists think that CBD quiets the excessive electrical and chemical activity in the brain that causes seizures.
Charlotte’s Web has very little THC, or tetrahydrocannabinol, the psychoactive ingredient that creates the “high” sought by recreational marijuana users. Contrary to some misconceptions, Charlotte and other kids like her are not smoking pot or getting stoned from taking their medicine. Although THC calms nausea, stimulates appetite, and can be helpful for other illnesses, CBD is the substance that is beneficial for people with seizure disorders.
Charlotte Figi, now 7 years old, was the first of a growing number of seriously ill children being helped by CBD-rich medical marijuana in Colorado. She had her first seizure when she was just three months old. By age two, her brain and body development were declining, either from the constant seizures, or the large doses of multiple drugs she was on, or both. By the time she was five years old, she was having up to 300 grand mal seizures a week, plus other forms of seizures, and was unable to talk, walk, or eat. She had been hospitalized repeatedly her whole life. Her heart had stopped more than once. Her parents had signed a DNR order (Do Not Resuscitate). And the doctors had run out of ways to help her.
Charlotte’s doctors and her parents, Matt and Paige Figi, had tried everything they could think of to help her, including half a dozen heavy addictive medications like barbiturates and benzodiazepines at a time, a specialty diet that suppressed her immune system and caused bone loss, an experimental veterinary medicine for canine seizures, and more. Finally, her father read a story online about a boy with Dravet Syndrome in California who had been helped by high CBD medical marijuana. The Figis decided to try it.
Charlotte’s seizures stopped for a week after her first dose. They have now dropped from 300 a week down to two or three a month. Now two years into her marijuana oil treatment at age 7, she’s walking, learning to talk, feeding herself, playing with her brother and sister, and even riding a bicycle. Her few seizures happen mostly in her sleep. Although she has brain damage, she is free of other medications and has no negative side effects. Her parents, who had prepared themselves for her to die, are profoundly grateful.
Like any other medical marijuana patient, Charlotte needed the recommendations of two doctors to get a prescription. At the time, she was the youngest person to ever apply for a prescription in Colorado.
After some searching and convincing, the Figis got Dr. Margaret Gedde and Dr. Alan Shackelford to approve Charlotte’s treatment. The doctors agreed that with all other treatment options already exhausted and several near death experiences, there was nothing to lose by trying it.
In the beginning, the Figis had to make the medicine themselves from just two ounces of medical marijuana, which was all of the special strain they could find at the time. It was enough. Charlotte showed immediate signs of improvement. Charlotte now gets a dose of the cannabis oil twice a day in her food. Dr. Gedde found that three to four milligrams of oil per pound of the girl’s body weight was enough to stop her seizures.
Once the Figis had finally found a real solution for their daughter’s epilepsy, they needed a consistent, affordable source of CBD rich cannabis. Enter the Stanley brothers, Jon, Jared, Joel, Jesse, Josh, and Jordan, the state’s largest marijuana growers and dispensers with a growth center right here in Teller County. They agreed to help, and now provide patients like Charlotte with a strain of marijuana high in CBD and low in THC. They named it Charlotte’s Web in her honor.
When the Stanley brothers first met the Figis, they had already spent two years developing the plant, which has proved to have 17 percent CBD and only .5 percent THC in laboratory tests. They knew the high CBD strain was good for cancer and multiple sclerosis patients and had developed it with these people in mind. They did not know that it could help children like Charlotte until they met her. Like Dr. Gedde and Dr. Shackelford, the Stanleys had concerns in the beginning because of Charlotte’s young age, but were willing to try to help her. Of course, they are delighted with her success, and have gone on to provide their product to many more children.
“The biggest misconception about treating a child like little Charlotte is most people think that we’re getting her high. Most people think she’s getting stoned,” Josh Stanley said, stressing his plant’s low THC levels. “Charlotte is the most precious little girl in the world to me. I will do anything for her.”
The Stanley brothers now run the Realm of Caring Foundation, a nonprofit organization that provides cannabis to adults and children suffering from diseases like epilepsy, cancer, multiple sclerosis, and Parkinson’s, who cannot otherwise afford this treatment. They only ask patients such as the Figis to donate what they can. Their work is supported by their other medical marijuana sales and private donations.
The Stanley’s efforts have been noticed by the national media. They have been profiled by CNN, National Geographic, MSNBC, WebMD and others. As word has spread about Charlotte’s amazing recovery and Charlotte’s Web, families from around the country and even from other parts of the world have packed their things and moved to Colorado. The Realm of Caring says they have 100 patients who have moved to Colorado from 43 other states, and there is a waiting list of more than 2,000 people who are willing to relocate. An additional 4,000 Colorado residents are waiting for the Charlotte’s Web high CBD marijuana oil.
The good works of the Realm of Caring are also gaining strong support from local government leaders, who expressed great opposition to recreational marijuana. On April 10, the Teller County Commissioners unanimously adopted a resolution allowing licensed medical marijuana cultivators like the Stanley brothers to expand their greenhouse up to an additional 25,000 square feet for producing CBD rich marijuana. The Stanley brothers have one of four medical marijuana permits issued in Teller prior to the placement of a moratorium on future medicinal cannabis outlets by the county. The Stanley brother’s permit is for growing the plants only, so their distribution centers are located in Colorado Springs. (See related story).
This hasn’t stopped families from becoming Colorado residents to help their children, even though they have to leave their homes, jobs, and sometimes even other family members behind. For them, the possibility of helping their children recover is worth it. While medical marijuana has not been effective for every epileptic child who has tried it, the majority have experienced improvements in their condition. It is estimated that it is effective for 85% of patients. Children who are taking the marijuana oil are using less medication and having fewer seizures.
Charlotte’s Web extract oil has not been approved by the FDA, but the Stanleys have done their own extensive lab testing to ensure their organically grown product is safe and free of molds, fungi, and pesticides. Large scale medical trials are necessary for FDA approval, and that can’t happen until more states make it legal to use it. Right now Charlotte’s Web cannot be sold or transported outside of Colorado.
Medical marijuana is still off-limits in thirty states and illegal under federal law. Even in the twenty states where medicinal pot is legal, the use of marijuana for the treatment of epilepsy or in children may not be a permitted use. However, as word of this new option to help suffering children is getting out, some states are looking at changing their laws to allow it.
For example, in Illinois, where medical marijuana use was approved just last year, they are now considering legislation to add epilepsy and seizures to their list of legal medical marijuana uses. It would be restricted to use by patients under the age of 18 only. Illinois Senator Irene Martinez was inspired to sponsor the bill by a letter from a family that had left Chicago for Colorado to get help for their sick child.
Currently, although the public is still divided over the issue, there is growing support to legalize medicinal marijuana across the country. In March, the states of Kentucky, Utah, Alabama, and Georgia all approved the use of marijuana oil for medical purposes. The medical marijuana debate will soon play out in North Carolina as lawmakers there look to one bill to legalize all forms of medicinal marijuana and a second bill to specifically allow cannabis oil to be used for the treatment of epilepsy.
Even so, not everyone agrees that pot for kids, even desperately sick ones, is a good idea. The feds still consider marijuana a Schedule I drug with high potential for abuse and no medical value. Other Schedule I drugs include heroin, LSD, and ecstasy.
Those opposed to medical marijuana for children claim that until dosages can be studied, calculated, and standardized, the medicine is not safe. Natural remedies can vary in the amount of their active ingredients from plant to plant, or even within different parts of the same plant.
Scientists also don’t fully understand the long-term effects that early marijuana use may have on children and their brain development. Preliminary research shows that early onset marijuana smokers are slower at tasks, have lower IQs later in life, have a higher risk of stroke, diminished lung function, increased risk of a heart attack, and an increased incidence of psychotic disorders. However, these studies were done on adults who smoked high THC cannabis, not kids ingesting the high CBD variety.
According to the American Epilepsy Society, around 3 million U. S. citizens have epilepsy. One third of them have treatment-resistant seizures. The society supports clinical studies on the effectiveness of cannabis for the treatment of epilepsy.
“We desperately need new treatments, and we need more research to get those treatments,” said American Epilepsy Society Vice President, Dr. Amy Brooks-Kayal. “There are anecdotal reports in some people with epilepsy where marijuana derivatives seem to be effective. There are other cases where it seems not to have worked as well, and what we need to understand is who might benefit from marijuana and marijuana derivatives such as cannabidiol (CBD), how much we would give them, how often to give it (and) what the potential side effects might be.”
When neurologist Dr. Edward Maa, chief of Denver Health’s Comprehensive Epilepsy Program, discovered that many of his patients were using medical marijuana without his knowledge, he soon became more interested in marijuana as a potential treatment. Although concerned about its long-term safety, he says he’s shocked at the number of families that have moved to Colorado to get this medicine for their kids. If it’s proven to be effective, Maa says he believes marijuana should be available.
“There should at least be an exception for a compound like this, or similar compounds with high CBD content, and not so much of the THC. I think the psychoactivity is really reduced in this oil. I don’t see what the problem is. The fact that it’s a Schedule I drug is arbitrary at this point. I think it should be relaxed, at least on a medical, compassionate-use basis,” said Maa.