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Medical marijuana mom: CBD oil saving my daughter, but more research is needed

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"When you are in Intensive Care Unit with your child, and she is in a coma, seizing herself to death in front of your eyes, you are willing to do and try things that you never thought you would consider.

"For instance, the choice between cutting her little brain in half and trying a medicine that has been known to have fatal side effects -- or not doing either and just taking her home and loving her, while watching pediatric epilepsy slowly take her life."

These are the words of a Denver mother, who, along with her husband, watched helplessly as their only child, Kyla*, suddenly and inexplicably developed seizures in March of 2013. A previously healthy 7-year-old with no history of epilepsy, Kyla’s condition was, and remains, a medical mystery.

Although she was treated by many of the top pediatric doctors and specialists in Colorado, within months of her first episode, Kyla’s parents found themselves testing the limits of medical science when they put their daughter into a medically-induced coma in an effort to quell the neurological attacks.

It didn’t work.

"Kyla came out of her coma and went right back into status, which is a prolonged seizure that is considered a medical emergency. Most seizures last under 5 minutes; Kyla would stay in status for days at a time.

"In June of 2013 my husband and I sat in a care conference with a team of doctors at Children’s Hospital in Denver, Colorado. The group included critical care physicians, neurologists, infectious disease specialists, a metabolic specialist and pediatric doctors. The outcome, they said, was grim. They had reached the end of the road on most testing and treatment options for Kyla and expected things to get worse.

"We sat and listened while this group of experts told us that our daughter would likely die if we couldn't find something to help her. This is not my interpretation of this meeting. I recorded it.

"We left that meeting with shattered hearts. Our daughter was slipping away from us and we had to do something about it, even if her doctors couldn't. As most parents would do, we took to the Internet."

Months of dogged research and a growing concern for their ailing child led the family to another experimental treatment method: A marijuana-derived CBD oil produced in Colorado Springs called Charlotte’s Web.

"My husband stumbled across an article about a treatment that was helping pediatric epilepsy patients, called Charlotte's Web.

"This immediately struck a chord for us because, coincidentally, we had been reading Kyla the famous children’s novel Charlotte's Web over and over again while she was in a medically-induced coma.

"After the coma failed, we were faced with the choice of a risky, experimental surgery that could leave our daughter permanently disabled, or rolling the dice on a medicine that might kill her. In light of this, trying CBD was the easiest decision we had been faced with for weeks.

"Our own research told us that CBD is a natural substance without any fatal side effects. It’s also shown to be highly effective in treating epilepsy in at least one human study as well as dozens of personal accounts."

Even with the limited medical reports, the increasingly desperate parents were intent on finding any kind of cure that would bring their daughter some kind of relief.

"Resolved in our decision, my husband and I obtained a Medical Marijuana license for our daughter and started her on the CBD – in the form of an oil, administered orally – extracted from the now-famous marijuana strain, Charlotte's Web.

"When we began treating Kyla with CBD, she was having about 45 seizures a day. We weaned her onto the oil very slowly and, quite honestly, we were not seeing the results we had hoped for.

"One desperate night, we decided we would try drastically increasing her dose. This is not recommended, but we felt utterly out of options. We had to do something.

"Astonishingly, the next day Kyla went seizure free from the moment she woke up to the moment she fell asleep.

"She was able to look us in the eyes, speak, laugh and play, all day. This was the first time since her seizures began that we saw our little girl, and there are no words to express the sudden hope and relief this day brought us.

"While Kyla has had some ups and downs in the months since we began CBD treatment, and still suffers a seizure every few days, her seizures have dropped by an astounding ninety-nine percent.

"This is not suspicion or wishful thinking or the placebo effect. In comparing my daughter’s EEG results (a test that records electrical signals in the brain) before and after the CBD treatment, the improvement is remarkable. We cannot prove that the CBD alone caused the improvement in her EEG results, because we are not in a controlled study. However, we cannot deny the correlation."

This is not the only reported case in which CBD oil has helped children suffering from pediatric epilepsy. Yet the treatment remains highly controversial and even in Colorado and other states that allow medical marijuana, the practice is still illegal under federal drug laws.

"According to the Controlled Substances Act, marijuana is a Schedule I controlled substance, defined as a drug “with no currently accepted medical use” and a “high potential for abuse.” In the eyes of the federal government, marijuana is considered, alongside heroin, as an even more dangerous substance than methamphetamine – a Schedule II drug.

"Yet the government’s own research seems to contradict this designation. Patent number 6630507, issued to the Department of Health and Human Services by the U.S. Patent Offices in 2003, cites this marijuana-derived substance’s medical benefits, including treatments for 'inflammatory and autoimmune diseases … treatment of neurodegenerative diseases, such as Alzheimer's disease, Parkinson's disease, HIV, and dementia,' among many others."

While the discussion to reclassify marijuana has begun in earnest in Congress, there is still a long fight ahead for parents who would attempt to get similar treatments for their children.

"My family is fortunate to live in Colorado, where we can pursue this treatment legally. But as desperate families from all over the country flock here in order to access Charlotte’s Web, the lack of medical research on CBD grows more and more glaring.

"A recent New York Times op-ed by two physicians from the NYU Comprehensive Epilepsy Center implies that until randomized placebo-controlled studies can be performed on CBD, parents should stop exposing their children to the potential risks of using it.

"To this, I say that we are already in a placebo trial. My daughter doesn’t know and doesn’t care what medicine she takes. She doesn’t know about the controversy or the politics. And as far as hysterical parents seeing improvement that is not really there, you can tell when your child is violently seizing and when she is not.

"These studies, they 'hope,' will begin this year and be completed within two years.

"We don't want to make our daughter a guinea pig, but as parents fighting for our child’s life we do not have the luxury of waiting three years – at the very least – for federal bureaucrats to do the right thing on an issue as highly-politicized as U.S. marijuana policy."

Even as the battle over marijuana rages in Washington, mounting evidence suggests that both CBD and THC may have medically beneficial properties when treating everything from brain injuries to HIV to epilepsy.

"To give you an idea of the scope of this problem, according to the Epilepsy Foundation over three million Americans of all ages are affected by seizures – a prevalence greater than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson's disease combined.

"Here in Colorado, the parents treating their children with Charlotte's Web, including myself, feel we are doing what any parent would. To ask a parent, who is simply following their most basic primal instinct, not to treat their child with a potentially life-saving treatment because there are no studies, is not an option.

"Like any medication, of course, there are side effects. Kyla’s eyes get a little red, her mouth a little dry. Sometimes she gets the giggles. Needless to say, a world away from the side effects of the doctor-prescribed meds that turned her into a zombie. These are the only short-term side effects of CBD that we have witnessed first-hand. We administer her dose at night and when she wakes up those side effects are gone.

"However, this begs a much larger question about the potential long-term side effects of this treatment, especially in the developing brains of children. And while we don’t know the long-term effect of CBD in children, we do know the long-term effects that constant seizures have on the brain: developmental disabilities, brain damage, and death – to name just a few."

Kyla's mother will be the first to admit there is still plenty of research to be done in the field, and there are many unanswered questions about CBD and its effects. Right now, though, she's simply happy to help her little girl have as normal a life as possible.

"As responsible parents, we respect the medical controversy surrounding CBD treatment. However, to those who would question the wisdom of our family’s decision, I say this: Don't assume that you know what you would do if you were in our shoes. You can think about it. You can try to imagine our pain. But unless you are losing your child to violent seizures you will never be able to understand what motivates us. We’ve stepped out on a limb and have faced skepticism from doctors, our community – even some family and friends – all for the sake of doing what we feel is right for our child.

"It’s not easy to explain why we’re giving our seven year-old marijuana. But I feel that it’s important to open up my family’s story to the world, to speak my peace, and to pose the question to those who stand in the way of progress on this issue: What if it was your child?

"In order to move forward, the federal government must remove CBD – if not marijuana itself – from Schedule I Classification so that clinical trials can begin immediately. It's time for proof, one way or another.

"My family would like to administer this treatment with the help of research and medical guidance, but if that’s not available, we will save our child without it.

"For now, with my daughter's life hanging in the balance, we'll take our chances with CBD."

*Ed. Note: In the interest of privacy and medical confidentiality, all names have been changed.

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