It just took a second for Aileen Burger to choose to move her whole household throughout the nation. It was a Wednesday, and medical professionals had simply told her they could not operate on 4-year-old Elizabeth's brain to treat her intractable epilepsy. By Saturday, the Burgers, who hail from New York, were in Colorado, signing their child up for Charlotte's Web, a strain of medical cannabis that's altering the lives of kids with epilepsy.
Opting to put your toddler on pot might not be the apparent choice for any moms and dad, the Burgers included. But as Aileen saw The Stir, it's the just one that was ideal for their little lady.
" We chose to deal with Elizabeth with medical cannabis because we had tired nearly all other offered treatments," she said just.
And by all other available treatments, Aileen Burger actually 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, however each one failed.
" There have periods of time where Elizabeth has actually had to withstand over 5,000 seizures within a single day, with intravenous rescue medications supplying little, if any relief," her mother describes. "We were fortunate. Only on one medication did she actually have any unfavorable side effects, but there was potential for a lot more."
And the medications weren't helping.
The epilepsy continued to wreak havoc on Elizabeth's brain, causing delays, autistic propensities, and very restricted language capability. Her little brother, who is now 3, has been surpassing her milestone points at the age of 1 year old.
Things actually came to a head for Elizabeth in September 2012. The toddler had to be placed on a ventilator in a medically-induced coma while physicians pumped her with midazolam (a benzodiazepine) and fentanyl (an opiate). According to her mother, it was "an effort to break her state of constant seizures and give her brain a rest."
It took 2 weeks in the coma for Elizabeth's seizures to be manageable. But then physicians needed to wean her off the extremely addicting IV medications, putting the toddler on methadone, a drug generally used for hardcore heroin addicts, for 3 months.
When medical professionals drifted brain surgery as an alternative, the Burgers were on board.
" I was hoping it was a curative option," Aileen says.
Throughout 2013, doctors put Elizabeth through test after test to identify if she 'd be a candidate.
" The last test was a brain surgical treatment where 126 electrodes were placed on the surface area of her brain in order to pinpoint areas of electrical power for removal," her mom says. "Elizabeth's medical professionals' hypothesized that they would discover 2 operable seizure foci, and their removal would lead to an 80 percent chance of curing her epilepsy."
On the 10th day of the screening process, Elizabeth came down with a fever, and the electrodes needed to be gotten rid of from her brain. When tests were done on the electrodes, they found MRSA, a harmful, antibiotic-resistant staph infection. It would take months to clear the infection from Elizabeth's body, and throughout her recovery, physicians provided more problems.
" The sub-dural 126 electrode research study revealed four areas of Elizabeth's brain creating seizures, rather than simply 2," Aileen recalled. "In addition, only 2 of these four areas might be securely eliminated. The surgical outcome would just yield an opportunity at 60 percent seizure reduction."
Surgical treatment would not treat Elizabeth's epilepsy.
" We chose to move the same day, that exact same moment," Aileen stated.
She 'd been reading about Charlotte's Web, an edible kind of medical cannabis. The particular strain is low in tetrahydrocannabinol or THC, the main psychedelic agent in the marijuana plant. However it's high in something called cannabidiol or CBD, an agent with anti-inflammatory, anti-tumoral, neuro-protective, neuro-genic, discomfort easing, anti-psychotic, and anti-microbial benefits. Its breeders, the Stanley bros of Colorado, named the stress for 5-year-old Charlotte Figi, a little girl with incurable epilepsy much like Elizabeth. The brother knew their plant had anti-epileptic homes, but it was Figi's success on the drug that proved it could alter lives.
The Burgers called Realm of Caring, a non-profit in Colorado Springs that links families in need with the Stanley bros' product, the week they learnt surgical treatment wouldn't assist Elizabeth. Essentially, the group is a pipeline in 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 prior to Christmas 2013, her parents got the call that she was eligible for treatment. Aileen packed up herself, Elizabeth, and her kid (her hubby, who had to shut down his business in New York, followed in February). She got her very first treatment on December 26, the day after Christmas.
Charlotte's Web provides kid with a liquid kind of cannabis oil, so Elizabeth is not "smoking pot." However she is gaining the advantages of utilizing the drug illegal in other parts of the country. In the months given that, Aileen states Elizabeth has actually made considerable gains.
" In December 2013 she was working like a 12-month-old," she said. "Today she is operating like a 2-year-old and has actually started to say some words again. Simply in six months, to make those improvements is amazing."
" It was not a hard decision to attempt medical marijuana," Aileen continued. "It was a necessary option for her to have an opportunity at a much better quality of life and do say goodbye to harm."
The Burgers' family and friends have been mostly supportive, and since their move to Colorado, they have actually discovered a growing support system of other families in their position. Life is not ideal-- they cannot leave the state with Elizabeth since federal laws and those in lots of other states make it unlawful for them to take her medication out of Colorado. If there's a household wedding event or funeral back in New york city; Aileen or her spouse will have to go alone.
Still, she is encouraged to see New York mulling approval of medical marijuana and hopes others more do the same, hopes others will see the advantages of the drug for kids like her child, hopes the successes of Charlotte's Web can peaceful the critics.
Aileen's message to other parents? Contact your regional representatives. Promote legalization of medical marijuana.
" To the skeptics who quote 'initially do no damage" from the physician's creed, in the case of my daughter and all treatments that were attempted prior to medical cannabis, it is a reality that picking medical marijuana at this point is doing no more damage," she says. "Her intractable epilepsy has currently triggered her damage. The seizures have actually caused her mental retardation, suffered terrible medication negative effects, a MRSA infection from surgery, benzodiazapiene and opiate addiction ...
" To the doubters who say 'we don't know the long term negative effects' of medical cannabis," Aileen continues, "in the case of my child it is a truth that without controlling her seizures, death would occur."
To discover more about Charlotte's Web and how medical marijuana assists control seizures, visit Realm of Caring.
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