When Pharmaceuticals Almost Killed Her Son, This Mom Changed Everything

August 28th 2015

As a 1-year-old, Austin had his first seizure—a grand mal seizure that caused him to stop breathing and enter into full body convulsion. It happened shortly after he was immunized, and though they didn't know it at the time, that was an early sign that Austin had Dravet Syndrome, a rare form of epilepsy. The diagnosis meant that the child would suffer from daily seizures, sometimes hundreds in a single day, leaving him and his family at the mercy of an unpredictable and debilitating disorder.

Treatment options for Dravet patients are seriously limited. When he was only four years old, Austin was already prescribed a medley of pharmaceuticals to combat the seizures, many of which proved dangerous and ineffective. At one point, a doctor put him on Keppra, an anti-epileptic, and not only did it fail to prevent the convulsions but it also caused Austin to gain 68 pounds, effectively doubling the six-year-old's weight in just 30 days.

Austin 6Amy Hilterbran

They weaned him off of Keppra, but other drugs had other side effects, and by the age of 8, he was 20 pounds underweight.

Austin 8Amy Hilterbran

"All of [the prescription drugs] basically said the same thing: You could have weight gain, you could have weight loss, you could have headaches, you could feel dizzy, you could have stomach issues, you could have diarrhea, you could get acne, you could have facial hair," Amy Hilterbran, Austin's mother, told ATTN:. "He would be a lethargic zombie who could barely walk and go from rage and agitation to being hyper-emotional and sobbing."

The pharmaceuticals that Austin was being prescribed—17 different drugs over the course of 10 years—left the child and his family in a state of misery, desperate for answers to a disorder that seemed to defy explanation. He had difficulties in school, and a lack of training and resources frequently kept Austin from having a traditional educational experience. It also kept his family from home, as they would have to make regular visits to the hospital in Oklahoma City, Oklahoma, when his seizures became uncontrollable.

"Some days he would have four [seizures], some days he would have eight, some days he would have 300. But his average was five to 20," Hilterbran said.

Though some drugs proved more effective than others, they all had concerning side effects, and once he built a tolerance to a particular pharmaceutical, doctors would up his dose, track his progress, and move on to the next treatment option. Austin was visibly affected by the pills, and his mother expressed deep frustration over the impact they had on her child's behavior and personality. The cost of medication "annihilated" the family, she said; with no alternative but filing for bankruptcy, Austin's parents applied for Medicaid. Even after accounting for what they received in federal assistance, however, they still found themselves paying upwards of $5,000 per month.

It was a vicious cycle that put an enormous emotional and financial strain on the family. Each new drug offered hope, but over time it became increasingly clear that the pharmaceuticals were doing more harm than good. In May 2013, Austin's organs began to fail due to a combination of recurring seizures and acute toxicity caused by high doses of prescription medications such as Clonazepam, a benzodiazepine used to treat seizures, panic disorder, and anxiety. His white blood cell count was down to 17,000; a healthy person has anywhere between 400,000 and 450,000.

Austin was placed on life support for the seventh time in his life, and after that medical emergency, Hilterbran made a decision that many parents of Dravet children have come to make in recent years: She decided to give cannabis a try.

"When we got out of the hospital, that's when my husband and I really became politically active and outspoken about trying to legalize medical marijuana in Oklahoma," she explained. Hilterbran was in her 30s when she enrolled as a freshman at the University of Oklahoma, where she took an honors course on "The Myths and Facts of Marijuana." She was there in part to finish her degree but also to be "in an environment where I could research my son's seizures."

"I hate to say that I was a hypocrite, but I was an unknowing hypocrite," she said. "I thought that marijuana was a bad thing because I really kind of believed the propaganda that I had been fed. I mean, I was born in '72, obviously raised in the Bible Belt."

"I will say this: The United States government has provided ample research to prove the medicinal aspects of cannabis and its non-toxicity, and I am grateful for that; but I am not grateful for the fact that they are not allowing citizens to access that plant... I should have the right as a parent to choose between a plant that my government has proven to be non-toxic and effective in treating multiple conditions—that we have seen firsthand can help our son's condition—versus pharmaceuticals that did not help him and literally almost killed him, but certainly stole his personality in the meantime."

Heeding this call to action, she and her husband began collecting signatures in an effort to get medical marijuana on the ballot in Oklahoma. In the state, petitioners are required to gather about twice as many signatures in half the time compared to the rest of the country. The initiative failed, much to the disappointment of Austin's family, who hoped that the measure would allow them to stay in Oklahoma, where they had lived for all their lives.

Austin 12Amy Hilterbran

"What that means is that no citizen-led agenda ever really stood a chance to get on the ballot. It would take big money—it was set up to fail, and this really just fueled the fire with us because we were watching our son decline steadily," Hilterbran added.

They consulted with healthcare professionals and researchers in Colorado before selling their belongings and moving to the Centennial State, where marijuana had been legalized for recreational and medical use in 2012. Once there, Austin's parents began to wean him off the prescription drugs he had been taking one by one. Prior to the transition, he was on 2400 milligrams of Banzel (an anti-epileptic), 60 milligrams of Onfi (a benzodiazepine), and one to two milligrams of Clonazepam (another benzodiazepine) per day.

"When I administered the THC drop, it almost immediately stopped the seizures."

Austin thcAmy Hilterbran

They used THCa, a non-psychoactive cannabinoid compound, to treat the epilepsy and simply administered one milligram of THC to Austin's gum when he was having a seizures. The THC also combated the withdrawal symptoms he was experiencing after reducing and then removing each pharmaceutical from his daily regime.

Eventually Austin's parents incorporated another non-psychoactive compound, CBD, into his treatment as well—and it worked. The frequency of Austin's seizures were dramatically lower than they had been on prescription drugs. It was "Austin's Answer," as Hilterbran characterized it.

"When you're feeding your child pharmaceuticals, there's no immediate reaction unless it's negative," she said. "But with cannabis, you can tell that it's doing something, you can tell that it's working."

"We have a shot at life now. Our son has a shot at life. Cannabis saved Austin's life—that's fact—cannabis and Colorado," Hilterbran said.

After eight months of weaning, Austin is now pharmaceutical-free and nearly seizure-free, with 90 percent less seizures. For 10 years, the now 13-year-old's life was dictated by drugs. "He is functioning, he is prospering," his mother said.

"For all the parents considering weaning pharmaceuticals and adding cannabis, slow and steady wins the race," she added. Be diligent, be committed, be educated, and most importantly, communicate. We learn from others every day, and we teach others every day. We are all in this together."

Amy and her husband founded the American Medical Refugee Foundation three months ago. It is an organization designed to provide information to other families of children with chronic and terminal illness, including epilepsy, cancer, and dystrophy. Already, they have had 128 families from 29 different states join them in the fight to raise awareness about the need for legalization and the medical benefits of cannabis.

For more information about Dravet Syndrom and Austin's journey, visit Austin's Answers.

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