Mom Explains Why Her 4-Year-Old Uses Medical Marijuana Every Day

Elizabeth BurgerIt 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 Burger
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.

Elizabeth's brain
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.

More from The Stir: Baby Taken Away From Parents for Smoking Medical Marijuana

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

toddler health

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nonmember avatar Emmie

In a heartbeat. Good for them.

SoJaided SoJaided

Why on earth ANY sort of medical marijuana isn't legalized is beyond me. They keep coming out with stronger and stronger opiates, but legalizing a natural substance that's helps countless people without the side effects and addiction is still being denied in most places. Ridiculous!

DeeMar05 DeeMar05

Absolutely!


 

sassy... sassykat122

States that say no to medical marijuana are just not thinking, sorry not sorry

nonmember avatar krystian

Nope I would not,



I've smoked pot, and have seen what it does to someone long term. It is also addictive, who ever says it isn't addictive, you are so full of it.



nonmember avatar Israel Hernande

I am an m.s patiemt with constant burning running through my skin feels like I'm covered with red ants biting me among many others things noy to mention extreme depression and I read these stories about little kids who have not even begun to live their lives and it brings tears to my eyes. I would give up any chance I have for medical marajuana relief to give to these children, being a father myself hope our country legalizes medical marajuana in every state.These children could grow to be president in the future and could one day change the direction our world is going in which in truth looks like disaster one day. I say give them a chance to have a normal life. My heart and tears go out to them. Remember that our children are our future literally.

amber... amberdotsmom

Gee you're absolutely right Krystian - she's just 4 /12 so she'll be an addict by the time she's 9.  Guess we better not give it to her so she'll be safe.  Oh wait - she'll actually be dead!  


I've seen the same argument with hospice patients but in reverse, can't give that extra dose of morphine or he'll become addicted to it - well he's going to die within a month so I guess it's super important that he dies with pain as long as he's not an addict.


And there's a big difference between the long term effects of smoking weed you bought on a street corner, no idea who grew it or how or what else is in it vs that grown for medical use using stricter controls.  In fact if we actually encouraged the medical use and increased the scientific controls and the different strains being grown we could come up with a product that's better at helping with the diseases and has less negative impact.  All we have to do is stop thinking of this as something the hippies smoked to get high and acting like using it is still the dirty secret of the junkie in the corner.

nonmember avatar jen

Krystian, first of all please cite your sources saying it is addictive. Second, if you bothered to read this article and followed the link given, this girl isn't smoking pot. She is eating oil from a plant that is designed to save her life (the child doesn't get high). I will always opt to save my children's lives!

nonmember avatar Dianne

Krystian- you were or know some one who was addicted to marijuana? Do tell... What side effects did you/they have from withdrawal other than the ones you/they made up in your head?

Because as a former college "stoner" and who has also experienced paralyzingly painful opiate withdrawals, and having a grandfather who DIED from alcohol withdrawal, I never experienced a single thing whatsoever if I just stopped smoking/eating marijuana in copious amounts.

You're what I call a liar.

There might be long term side effects but this child was not doing better before this treatment, therefore your point is moot.

I know I'm going to be judged for my former addiction issue but I'm a college educated biology and chemistry major who is going to grad school to study plant medicine in the amazon rain forest so I know little something something about this plant you're dismissing as more harmful than beneficial. How much scientific research have you done?

Do you know that drinking alcohol is much more immediately and permanently harmful? But it's legal so it must be okay...

I don't drink or use any drugs anymore just FYI.

Ignorance isn't an excuse in this age of information.

loqua... loquaciousred

I am not for legalization of marijuana... But am for medical marijuana. Heck, there are tons of drugs it is illegal for me to possess without a prescription... But are okay for medical use... why not this?

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