It only took a second for Aileen Burger to decide to move her whole family across the country. It was a Wednesday, and doctors had just told her they couldn't operate on 4-year-old Elizabeth's brain to cure her intractable epilepsy. By Saturday, the Burgers, who hail from New York, were in Colorado, signing their daughter up for Charlotte's Web, a strain of medical marijuana that's changing the lives of kids with epilepsy.
Choosing to put your toddler on pot may not be the obvious decision for any parent, the Burgers included. But as Aileen told The Stir, it's the only one that was right for their little girl.
"We decided to treat Elizabeth with medical marijuana because we had exhausted nearly all other available treatments," she said simply.
And by all other available treatments, Aileen Burger really does mean everything out there.
Burger's 4 1/2-year-old was diagnosed with epilepsy when she was 5 months old. Since then, Elizabeth has tried more than 10 anti-epileptic medications at adult dosages, but each one failed.
"There have periods of time in which Elizabeth has had to endure over 5,000 seizures within a single day, with intravenous rescue medications providing very little, if any relief," her mom explains. "We were lucky. Only on one medicine did she really have any negative side effects, but there was potential for so much more."
And the medicines weren't helping.
The epilepsy continued to wreak havoc on Elizabeth's brain, causing global delays, autistic tendencies, and extremely limited language ability. Her younger brother, who is now 3, has been surpassing her in milestones since he was a year old.
Elizabeth in a coma
Things really came to a head for Elizabeth in September 2012. The toddler had to be put on a ventilator in a medically-induced coma while doctors pumped her with midazolam (a benzodiazepine) and fentanyl (an opiate). According to her mom, it was "an effort to break her state of continuous seizures and give her brain a rest."
It took two weeks in the coma for Elizabeth's seizures to be controllable. But then doctors had to wean her off the highly addictive IV medications, putting the toddler on methadone, a drug typically used for hardcore heroin addicts, for three months.
When doctors floated brain surgery as an option, the Burgers were on board.
"I was praying it was a curative option," Aileen says.
Throughout 2013, doctors put Elizabeth through test after test to determine if she'd be a candidate.
"The final test was a brain surgery in which 126 electrodes were placed on the surface of her brain in order to pinpoint areas of electricity for removal," her mom says. "Elizabeth's doctors' hypothesized that they would find two operable seizure foci, and their removal would result in an 80 percent chance of curing her epilepsy."
On the 10th day of the testing process, Elizabeth came down with a fever, and the electrodes had to be removed from her brain. When tests were done on the electrodes, they found MRSA, a dangerous, antibiotic-resistant staph infection. It would take months to clear the infection from Elizabeth's body, and during her recovery, doctors delivered more bad news.
"The sub-dural 126 electrode study showed four areas of Elizabeth's brain generating seizures, instead of just two," Aileen recalled. "In addition, only two out of these four areas could be safely removed. The surgical result would only yield a chance at 60 percent seizure reduction."
Surgery wouldn't cure Elizabeth's epilepsy.
Electrodes on Elizabeth's brain
"We decided to move the same day, that same moment," Aileen said.
She'd been reading about Charlotte's Web, an edible form of medical marijuana. The particular strain is low in tetrahydrocannabinol or THC, the main psychoactive agent in the cannabis plant. But it's high in something called cannabidiol or CBD, an agent with anti-inflammatory, anti-tumoral, neuro-protective, neuro-genic, pain relieving, anti-psychotic, and anti-microbial benefits. Its breeders, the Stanley brothers of Colorado, named the strain for 5-year-old Charlotte Figi, a little girl with intractable epilepsy just like Elizabeth. The brother knew their plant had anti-epileptic properties, but it was Figi's success on the drug that proved it could change lives.
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The Burgers contacted Realm of Caring, a non-profit in Colorado Springs that connects families in need with the Stanley brothers' product, the week they found out surgery wouldn't help Elizabeth. Essentially, the group is a pipeline between families and the growers, and they manage the long waiting list for Charlotte's Web.
Elizabeth's name was put on the list in October, and before Christmas 2013, her parents got the call that she was eligible for treatment. Aileen packed up herself, Elizabeth, and her son (her husband, who had to shut down his business in New York, followed in February). She got her first treatment on December 26, the day after Christmas.
Charlotte's Web comes to kids in a liquid form of cannabis oil, so Elizabeth is not "smoking pot." But she is reaping the advantages of using the drug illegal in other parts of the country. In the months since, Aileen says Elizabeth has made significant gains.
"In December 2013 she was functioning like a 12-month-old," she said. "Today she is functioning like a 2-year-old and has begun to say some words again. Just in six months, to make those improvements is incredible."
"It was not a tough decision to try medical marijuana," Aileen continued. "It was a necessary choice for her to have a chance at a better quality of life and do no more harm."
The Burgers' family and friends have been largely supportive, and since their move to Colorado, they've found a growing support system of other families in their position. Life is not perfect -- they can't leave the state with Elizabeth because federal laws and those in many other states make it illegal for them to take her medicine out of Colorado. If there's a family wedding or funeral back in New York; Aileen or her husband will have to go alone.
Still, she is encouraged to see New York mulling approval of medical marijuana and hopes others more follow suit, hopes others will see the benefits of the drug for kids like her daughter, hopes the successes of Charlotte's Web can quiet the critics.
Aileen's message to other parents? Contact your local representatives. Push for legalization of medical marijuana.
"To the skeptics who quote 'first do no harm" from the the physician's creed, in the case of my daughter and all treatments that were tried prior to medical marijuana, it is a fact that choosing medical marijuana at this point is doing no more harm," she says. "Her intractable epilepsy has already caused her harm. The seizures have caused her brain damage, suffered terrible medication side effects, a MRSA infection from surgery, benzodiazapiene and opiate addiction ...
"To the skeptics who say 'we don't know the long term side effects' of medical marijuana," Aileen continues, "in the case of my daughter it is a fact that without controlling her seizures, death would occur."
To find out more about Charlotte's Web and how medical marijuana helps control seizures, visit Realm of Caring.
What would it take for your to consider medical marijuana for your child?
Images via Aileen Burger