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 brain in half or 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.
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 our seven-year-old daughter 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. The list of treatment options was exactly as I listed above: brain surgery, or potentially fatal medicine.
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.
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. We decided to induce the coma in a last ditch effort to quiet her seizures. The coma did not work. She came out of it 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.
After just having the coma fail, and being faced with the choice of horrible, permanently disabling surgeries or rolling the dice on medicines that might kill our daughter, trying CBD was the easiest decision we had been faced with for weeks.
As a result, I find myself on the frontlines of the national debate surrounding the controversial treatment for epileptic children in Colorado, the marijuana-derived cannabinoid known as CBD.
Our own research told us that CBD is a natural substance, one 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.
As responsible parents, however, we respect the medical controversy surrounding CBD treatment.
According to the Controlled Substances Act, marijuana is a Schedule 1 Controlled Substance, defined as a drug “with no currently accepted medical use” and a “high potential for abuse.” Schedule I drugs are considered the most dangerous substances, putting marijuana alongside heroin, and considered even more dangerous than methamphetamine – a schedule 2 drug.
Yet, the U.S. Patent Office issued a patent for CBD to the Department of Health and Human Services over a decade ago, in 2003, patent number 6630507. Citing this marijuana-derived substance’s medical benefits, the patent reports treatments for “inflammatory and autoimmune diseases … treatment of neurodegenerative diseases, such as Alzheimer’s disease, Parkinson’s disease and HIV dementia,” among many others.
Why does the source of this treatment remain federally classified as a dangerous and useless substance?
Meanwhile, how many thousands of children have fought and lost their struggle with epilepsy since 2003 when this patent was approved?
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.
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 – extracted from the now-famous strain, Charlotte’s Web.
Like any medication, of course, there are side effects. Her 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 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. But this begs a much larger question, about the potential long-term side effects of this treatment, especially in the developing brains of children.
The truth is, nobody knows what the long-term effects are. Because marijuana – and all of its derivative compounds – remains classified as a Schedule 1 substance, it’s off- limits to researchers and doctors who might perform controlled studies.
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 and seek guidance from our doctors, 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 and blatantly hypocritical as U.S. marijuana policy.
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.
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 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.
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 lifesaving treatment because there are no studies, is not an option.
To those who would question the wisdom of our family’s decision, I say this: Don’t ever assume that you know what you’d do if you were in our shoes. You can think about it. You can try to imagine our pain. But the truth is that 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 with our doctors, family, community and friends – all for the sake of doing what we feel is right for our child, against all opposition.
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 piece, 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 1 Classification so that clinical trials can begin immediately. It’s time for proof, one way or another.
My family would like to do 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.
The names in this article have been changed to protect my family’s privacy.
CBD TRIAL STUDY INFO: http://www.ncbi.nlm.nih.gov/pubmed/7413719
CONTROLLED SUBSTANCES ACT: http://www.fda.gov/regulatoryinformation/legislation/ucm148726.htm
NY TIMES OP-ED http://www.nytimes.com/2014/02/13/opinion/we-need-proof-on-marijuana.html?_r=2