When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
Savannah Salazar (left) and her mother, Tracy Dixon-Salazaar, who earned a PhD in neurobiology in the quest for a treatment of her daughter's seizure disorder.
Twenty-eight years ago, Tracy Dixon-Salazaar woke to the sound of her daughter, two-year-old Savannah, in the midst of a medical emergency.
“I entered [Savannah’s room] to see her tiny little body jerking about violently in her bed,” Tracy said in an interview. “I thought she was choking.” When she and her husband frantically called 911, the paramedic told them it was likely that Savannah had had a seizure—a term neither Tracy nor her husband had ever heard before.
Over the next several years, Savannah’s seizures continued and worsened. By age five Savannah was having seizures dozens of times each day, and her parents noticed significant developmental delays. Savannah was unable to use the restroom and functioned more like a toddler than a five-year-old.
Doctors were mystified: Tracy and her husband had no family history of seizures, and there was no event—such as an injury or infection—that could have caused them. Doctors were also confused as to why Savannah’s seizures were happening so frequently despite trying different seizure medications.
Doctors eventually diagnosed Savannah with Lennox-Gaustaut Syndrome, or LGS, an epilepsy disorder with no cure and a poor prognosis. People with LGS are often resistant to several kinds of anti-seizure medications, and often suffer from developmental delays and behavioral problems. People with LGS also have a higher chance of injury as well as a higher chance of sudden unexpected death (SUDEP) due to the frequent seizures. In about 70 percent of cases, LGS has an identifiable cause such as a brain injury or genetic syndrome. In about 30 percent of cases, however, the cause is unknown.
Watching her daughter struggle through repeated seizures was devastating to Tracy and the rest of the family.
“This disease, it comes into your life. It’s uninvited. It’s unannounced and it takes over every aspect of your daily life,” said Tracy in an interview with Today.com. “Plus it’s attacking the thing that is most precious to you—your kid.”
Desperate to find some answers, Tracy began combing the medical literature for information about epilepsy and LGS. She enrolled in college courses to better understand the papers she was reading.
“Ironically, I thought I needed to go to college to take English classes to understand these papers—but soon learned it wasn’t English classes I needed, It was science,” Tracy said. When she took her first college science course, Tracy says, she “fell in love with the subject.”
Tracy was now a caregiver to Savannah, who continued to have hundreds of seizures a month, as well as a full-time student, studying late into the night and while her kids were at school, using classwork as “an outlet for the pain.”
“I couldn’t help my daughter,” Tracy said. “Studying was something I could do.”
Twelve years later, Tracy had earned a PhD in neurobiology.
After her post-doctoral training, Tracy started working at a lab that explored the genetics of epilepsy. Savannah’s doctors hadn’t found a genetic cause for her seizures, so Tracy decided to sequence her genome again to check for other abnormalities—and what she found was life-changing.
Tracy discovered that Savannah had a calcium channel mutation, meaning that too much calcium was passing through Savannah’s neural pathways, leading to seizures. The information made sense to Tracy: Anti-seizure medications often leech calcium from a person’s bones. When doctors had prescribed Savannah calcium supplements in the past to counteract these effects, her seizures had gotten worse every time she took the medication. Tracy took her discovery to Savannah’s doctor, who agreed to prescribe her a calcium blocker.
The change in Savannah was almost immediate.
Within two weeks, Savannah’s seizures had decreased by 95 percent. Once on a daily seven-drug regimen, she was soon weaned to just four, and then three. Amazingly, Tracy started to notice changes in Savannah’s personality and development, too.
“She just exploded in her personality and her talking and her walking and her potty training and oh my gosh she is just so sassy,” Tracy said in an interview.
Since starting the calcium blocker eleven years ago, Savannah has continued to make enormous strides. Though still unable to read or write, Savannah enjoys puzzles and social media. She’s “obsessed” with boys, says Tracy. And while Tracy suspects she’ll never be able to live independently, she and her daughter can now share more “normal” moments—something she never anticipated at the start of Savannah’s journey with LGS. While preparing for an event, Savannah helped Tracy get ready.
“We picked out a dress and it was the first time in our lives that we did something normal as a mother and a daughter,” she said. “It was pretty cool.”
Edible water bubble pods, called Ooho, made by Skipping Rock Labs. (Photo credit: Instagram account of Ooho water)
Here's something to chew on. Can a gulp of water help save the planet? If you're drinking *and* eating your water at the same time, the answer may be yes.
The tasteless packaging is made from brown seaweed that biodegrades naturally in four to six weeks.
The Lowdown
A start-up company called Skipping Rocks Lab has created a "water bubble" encased in an edible sachet that you can pop in your mouth whole. Or if you're not into swallowing it, you can tear off the edge, drink up, and toss the rest in a composter. The tasteless packaging is made from brown seaweed that biodegrades naturally in four to six weeks, whereas plastic water bottles can linger for hundreds of years.
The founders of the London-based company are determined to "make plastic packaging disappear." They had two foodie inspirations: molecular gastronomists and fruit. They tried to emulate the way chefs used edible membranes to encase bubbles of liquid to make things like fake caviar and fake egg yolks; and they also considered the peel of an orange or banana, which protects the tasty insides but can be composted.
The sachets can also contain other liquids that come in single-serve plastic containers -- think packets of condiments with takeout meals, specialty cocktails at parties, and especially single servings of water for sporting events. The London Marathon last month gave out the water bubble pods at a station along the route, using them to replace 200,000 plastic bottles that would have likely ended up first in the street, and ultimately in the ocean.
Next Up
The engineers and chemists at Skipping Rocks intend to lease their machines to others who can then manufacture their own sachets on-site to fill with whatever they desire. The new material, which is dubbed "Notpla" (not plastic), also has other applications beyond holding liquids. It can be used to replace the plastic lining in cardboard takeout boxes, for example. And the startup is working on additional materials to replace other types of ubiquitous plastic packaging, like the netting that encases garlic and onions, and the sachets that hold nails and screws.
Edible water bubbles may be the future of drinks at sporting events and festivals.
Open Questions
One hurdle is that the pods are not very hardy, so while they work fine to hand out along a marathon route, they wouldn't really be viable for a hiker to throw in her backpack. Another issue concerns the retail market: to be stable on a shelf, they'd have to be protected from all that handling, which brings us back to the problem the engineers tried to solve in the first place -- disposable packaging.
So while Skipping Rocks may not achieve their ultimate goal of ridding the world of plastic waste, a little progress can still go a long way. If edible water bubbles are the future of drinks at sporting events and festivals, the environment will certainly benefit from their presence -- and absence.
A religious family attends church.
The Internet has made it easier than ever to misguide people. The anti-vaxx movement, climate change denial, protests against stem cell research, and other movements like these are rooted in the spread of misinformation and a distrust of science.
"I had been taught intelligent design and young-earth creationism instead of evolution, geology, and biology."
Science illiteracy is pervasive in the communities responsible for these movements. For the mainstream, the challenge lies not in sharing the facts, but in combating the spread of misinformation and facilitating an open dialogue between experts and nonexperts.
I grew up in a household that was deeply skeptical of science and medicine. My parents are evangelical Christians who believe the word of the Bible is law. To protect my four siblings and me from secular influence, they homeschooled some of us and put the others in private Christian schools. When my oldest brother left for a Christian college and the tuition began to add up, I was placed in a public charter school to offset the costs.
There, I became acutely aware of my ignorant upbringing. I had been taught intelligent design and young-earth creationism instead of evolution, geology, and biology. My mother skipped over world religions, and much of my history curriculum was more biblical-based than factual. She warned me that stem cell research, vaccines, genetic modification of crops, and other areas of research in biological science were examples of humans trying to be like God. At the time, biologist Richard Dawkins' The God Delusion was a bestseller and science seemed like an excuse to not believe in God, so she and my father discouraged me from studying it.
The gaps in my knowledge left me feeling frustrated and embarrassed. The solution was to learn about the things that had been censored from my education, but several obstacles stood in the way.
"When I first learned about fundamentalism, my parents' behavior finally made sense."
I lacked a good foundation in basic mathematics after being taught by my mother, who never graduated college. My father, who holds a graduate degree in computer science, repeatedly told me that I inherited my mother's "bad math genes" and was therefore ill-equipped for science. While my brothers excelled at math under his supervision and were even encouraged toward careers in engineering and psychology, I was expected to do well in other subjects, such as literature. When I tried to change this by enrolling in honors math and science classes, they scolded me -- so reluctantly, I dropped math. By the time I graduated high school, I was convinced that math and science were beyond me.
When I look back at my high school transcripts, that sense of failure was unfounded: my grades were mostly A's and B's, and I excelled in honors biology. Even my elementary standardized test scores don't reflect a student disinclined toward STEM, because I consistently scored in the top percentile for sciences. Teachers often encouraged me to consider studying science in college. Why then, I wondered, did my parents reject that idea? Why did they work so hard to sway me from that path? It wasn't until I moved away from my parents' home and started working to put myself through community college that I discovered my passion for both biology and science writing.
As a young adult venturing into the field of science communication, I've become fascinated with understanding communities that foster antagonistic views toward science. When I first learned about fundamentalism, my parents' behavior finally made sense. It is the foundation of the Religious Right, a right-wing Christian group which heavily influences the Republican party in the United States. The Religious Right crusades against secular education, stem cell research, abortion, evolution, and other controversial issues in science and medicine on the basis that they contradict Christian beliefs. They are quietly overturning the separation of church and state in order to enforce their religion as policy -- at the expense of science and progress.
Growing up in this community, I learned that strong feelings about these issues arise from both a lack of science literacy and a distrust of experts. Those who are against genetic modification of crops don't understand that GMO research aims to produce more, and longer-lasting, food for a growing planet. The anti-vaxx movement is still relying on a deeply flawed study that was ultimately retracted. Those who are against stem cell research don't understand how it works or the important benefits it provides the field of medicine, such as discovering new treatment methods.
In fact, at one point the famous Christian radio show Focus on the Family spread anti-vaxx mentality when they discussed vaccines that, long ago, were derived from aborted fetal cells. Although Focus on the Family now endorses vaccines, at the time it was enough to convince my own mother, who listened to the show every morning, not to vaccinate us unless the law required it.
"In everyday interactions with skeptics, science communicators need to shift their focus from convincing to discussing."
We can help clear up misunderstandings by sharing the facts, but the real challenge lies in willful ignorance. It was hard for me to accept, but I've come to understand that I'm not going to change anyone's mind. It's up to an individual to evaluate the facts, consider the arguments for and against, and make his or her own decision.
As my parents grew older and my siblings and I introduced them to basic concepts in science, they came around to trusting the experts a little more. They now see real doctors instead of homeopathic practitioners. They acknowledge our world's changing climate instead of denying it. And they even applaud two of their children for pursuing careers in science. Although they have held on to their fundamentalism and we still disagree on many issues, these basic changes give me hope that people in deeply skeptical communities are not entirely out of reach.
In everyday interactions with skeptics, science communicators need to shift their focus from convincing to discussing. This means creating an open dialogue with the intention of being understanding and helpful, not persuasive. This approach can be beneficial in both personal and online interactions. There are people within these movements who have doubts, and their doubts will grow as we continue to feed them through discussion.
People will only change their minds when it is the right time for them to do so. We need to be there ready to hold their hand and lead them toward truth when they reach out. Until then, all we can do is keep the channels of communication open, keep sharing the facts, and fight the spread of misinformation. Science is the pursuit of truth, and as scientists and science communicators, sometimes we need to let the truth speak for itself. We're just there to hold the megaphone.