When doctors couldn’t stop her daughter’s seizures, this mom earned a PhD and found a treatment herself.
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.”
Your Online Therapist Will Message You Now
For years, Jenna Sauber took advantage of traditional therapy, setting an appointment with a mental health professional to help her through various life and relationship issues.
"The traditional model of therapy suffers from access barriers that keep enormous numbers of people from getting the care they need."
But when Sauber, 33, needed help extricating herself from a friendship that was becoming toxic, she tried another route of therapy. Life was getting busy for the communications professional from Washington D.C., and Sauber decided it was time to try something new – signing up for an online therapy smartphone app.
She isn't the only one trying therapy on-the-go. The online mental health industry has been booming in recent years, and technology companies – even giants such as Apple and Google – are sensing an opportunity to serve a market that wants to tend to their mental health wherever they are. Some are even tapping virtual reality used with a smartphone to help fight alcohol and nicotine addiction.
For those seeking a sympathetic ear – or text – companies such as Woebot offer a mental health chatbot to help patients relieve their anxiety or depression. Other companies, like Better Help and Talkspace, provide licensed mental health professionals who are available to connect with a patient throughout the day.
Recently, Olympic swimmer Michael Phelps became a brand ambassador for Talkspace after he disclosed his own struggle with depression.
Since Talkspace launched in 2012 by two psychologists, the company says it has worked with more than one million people seeking help.
How It Works
Potential clients fill out a questionnaire, detailing their mental health needs, and are connected with a professional whose specialties align with those needs. Basic text messaging packages are often offered by online therapy companies, as well as live-conversation packages and couples therapy. The average cost of these packages can vary and is usually billed weekly, with the ability to discontinue at any time.
Dr. Neil Lieberman, the Chief Medical Officer of Talkspace, is a board-certified psychiatrist. His background includes the oversight of inmates with severe psychological issues. One of the biggest advantages of online therapy, he says, is its accessibility. More than 70 percent of Talkspace users have never before been in therapy.
"It's a promising, but largely untested way to receive care."
"The traditional model of therapy – brick-and-mortar, 45-minute sessions – suffers from access barriers that keep enormous numbers of people from getting the care they need," Dr. Lieberman says. "Talkspace makes it possible for people to enjoy all the benefits of traditional therapy for a fraction of the cost, and without the need to schedule an appointment, travel to an office or get time off work."
Is It Effective?
This industry, while fast-growing, is still young. Psychiatric professionals are still trying to gauge its success, and whether it's providing the support its clients seek.
Dr. Vaile Wright, a licensed psychologist and the director of research and special projects with the American Psychological Association, says there isn't a lot of research available regarding online therapy.
"It's a promising, but largely untested way to receive care," says Wright.
She describes a spectrum of online therapy-type products available to consumers, ranging from meditation apps to videoconferencing services with a live therapist.
"There may be someone who doesn't necessarily need a mental health diagnosis but could use the mindfulness app to really feel more centered. What we generally see and what we think is probably effective is the use of these apps in conjunction or as an adjunct to a face-to-face ongoing relationship."
The APA offers a set of guidelines for professionals and for consumers that highlight issues that potential patients should consider before choosing online therapy, along with research material and other sources for help, depending on the condition.
There are still a lot of unknowns about online therapy, including potential security, confidentiality, privacy laws, and emergency situations, Wright says. "Consumers do need to be aware of that."
Lieberman says that the Talkspace app and website is encrypted to protect information. The company has also been certified as HIPAA compliant, meaning that the company must have a system in place to protect patient information.
"We take privacy, security, and confidentiality very seriously," he says.
For Sauber and her problematic friendship, online therapy was ultimately a let-down.
"She was very nice," Sauber says of her app therapist. "She would check in twice a day, once during the day and then at night. I'd type out what was going on and she would chime in that night or the next morning. It wasn't truly real-time unless you happened to be online with her window. I found that I was typing in huge paragraphs of what was happening and then me waiting for her to respond." Eventually, Sauber left the friendship on her own and quit the app.
When she decided to get help for sleeping issues last fall, she found her way back to a traditional therapist. And although her schedule was still tight, she was able to schedule FaceTime sessions with the therapist, which helped. The sleep issues, she felt, required a relationship with a live therapist who could notice how her body was responding to stressors.
Wright says that the live aspect of traditional therapy can be instructive in guiding a patient's care.
"Being face-to-face allows a therapist to pick up on body language. Maybe a person looks away when they're talking about a particular topic, or somebody's affect doesn't match up with the content of what they're talking about. For example, they're talking about something that's traumatic and yet they're smiling. That kind of nuance can be lost in texts or even e-mails."
Still, Sauber said she could see the benefits of the apps for different types of personalities and situations.
"I can see it being helpful for people who may not be comfortable being in person with someone because they're shy or just uncomfortable about their body language or may be just better communicating behind a screen," she said.
As far as the future of this kind of therapy, Lieberman says that Talkspace is hard at work expanding its network of clinicians and investing in research and science. The company is also working to develop partnerships with employers and health plans to offer the service to more people.
"Our intention to is to make therapy – a profession we think can lead to meaningful change in anybody's life – as common as going to the dentist or hitting the gym."
"These technology-based approaches can supplement the face-to-face work that you do."
[Correction: An earlier version of this article mistakenly implied that the company Woebot offers licensed mental health professionals to speak with patients. Woebot offers a chatbot service, a fully automated conversational agent, to help patients with anxiety and depression.]
Could Your Probiotic Be Making You Sicker?
Mindy D. had suffered from constipation for years when her gastroenterologist advised her, at 38, to take a popular over-the-counter probiotic. Over the next two years, she experimented with different dosages, sometimes taking it three times a day. But she kept getting sicker—sometimes so ill she couldn't work.
"We shouldn't just presume probiotics are safe."
Her symptoms improved only after she traveled from Long Island to Georgia to see Satish S. C. Rao, a gastroenterologist at Augusta University. "The key thing was taking her off probiotics and treating her with antibiotics," he says.
That solution sounds bizarre, if, like many, you believe that antibiotics are bad and probiotics good. Millions of Americans take probiotics—live bacteria deemed useful—assuming there can be only positive effects. The truth is that you really don't know how any probiotic will affect you. To quote the American Gastroenterological Association Center for Gut Microbiome Research and Education, "It remains unclear what strains of bacteria at what dose by what route of administration are safe and effective for which patients."
"We shouldn't just presume probiotics are safe," says Purna Kashyap, a gastroenterologist from the Mayo Clinic, in Rochester, Minnesota, and a member of the Center's scientific advisory board. Neither the U.S. Food and Drug Administration or the European Food Safety Authority have approved probiotics as a medical treatment. Things can go very wrong in the ill: Among patients with severe acute pancreatitis, one study found that a dose of probiotics increased the chance of death. Even randomized controlled trials of probiotics rarely report harms adequately and the effect over the long-term has not been studied.
Many people pick up a product at a drug store or health store without ever telling a doctor. Doctors are fans, too: in a 2017 survey of healthcare providers at Stanford, more than 60 percent of the respondents said they prescribed probiotics. Many did so inconsistently, leaving the choice of which probiotic up to the patient. Healthy people take them for a range of unproven benefits, including protection from infections or heart disease or to sharpen their brains.
It's fine—unless it isn't. "Probiotics are capable of altering the microbiome in unpredictable ways," explains Leo Galland, an internist in New York who specializes in difficult digestions. "I've had patients who got gas and bloating, constipation or diarrhea from probiotics."
Your Microbiome Is Unique
The booming probiotic market has fed on excitement about the new science of the microbiome, the genetic material of all the microbes that live in our bodies and on our skin. Microbes make up 1 to 3 percent of every human being's body mass—you carry trillions of them, including more than a hundred species and thousands of strains. To identify a microbe, you need to know the genus, species and strain. For example, in Lactobacillus rhamnosus GG, the ingredient in the OTC probiotic Culturelle, Lactobacillus is the genus, rhamnosus is the species and GG is the strain designation.
Variations in your microbiome could help explain why you put on weight or suffer from Crohn's or depression. Each of us has our own unique mix.
A decade ago, the U.S. National Institute of Health (NIH) launched the Microbiome Project to establish a baseline description of health. Scientists sequenced the DNA in more than 2,200 strains, still a small fraction of the whole.
Within a couple of years, we had evidence that our microbiomes are distinctive. Another team used the NIH data set to look into the idea of microbial "fingerprints." A classic computer science algorithm allowed it to assign individuals "codes" defined by DNA sequences of their microbes—no human DNA required. Using information solely from the guts, "Eighty percent of individuals could still be uniquely identified up to a year later," they wrote.
That distinctiveness makes a difference when we try to change our mix by swallowing bacteria considered "pro." Even in healthy people, the reactions to probiotics vary widely, according to a study in Cell in September. The team examined the intestines of healthy volunteers who had taken a cocktail of eleven strains of probiotics for the experiment. Which took up residence in the intestinal lining? The answer depended on the person. Led by Eran Segal and colleagues at the Weizmann Institute of Science, in Rehovot, Israel, the authors concluded that effective supplements would have to be personalized.
Patients with "brain fog" improved dramatically when they were taken off their probiotics and given antibiotics as well.
To truly customize a probiotic, however, we'd have to know the state of an individual's gut microbiome, identify danger signs and link them to symptoms, isolate relevant strains of probiotics that might be needed, and get them into the gut lining effectively. Commercial tests are still at step one. Several companies claim to assess your microbiome based on a stool sample—but the Weizmann team has also shown that the differences between our gut linings aren't apparent from our stool. Galland has explored testing his patients looking for ways to help. "I've concluded that uBiome, American Gut Project, and others don't yield useful information," he observes.
Can A Probiotic Make Your Brain Foggy?
Besides taking her probiotic, Mindy D. had cut out gluten and upped her vegetables and fruits. But soon after she ate her seemingly healthy meals, she would begin to feel dizzy and sometimes even slurred her words, as if she were drunk. "It was such an intense feeling," she said.
A slender 5 ft. 2 inches, she dropped 20 pounds, becoming unhealthily thin. She traveled to see specialists in Minnesota and Connecticut and took two month-long medical leaves before she found Rao in Georgia.
In June, Rao created a stir when he and his coauthors reported that a cluster of his patients with "brain fog"—the "intense feeling" Mindy D. described—improved dramatically when they were taken off their probiotics and given antibiotics as well.
His idea was that lactobacilli and other bacteria colonized their small intestines, rather than making it to the colon as intended—a condition known as "small intestinal bacteria overgrowth" (SIB0) that some gastroenterologists treat with antibiotics. In this group, he argues, the small intestine produced the brain fog symptoms as a consequence of D-lactic acidosis, a phenomenon usually associated with damaged intestines. "If you have brain fogginess along with gas and bloating, please don't take probiotics," Rao says.
The paper prompted a rebuttal at the end of September from Eamonn Quigley, a gastroenterologist at Houston Methodist, who criticized the methodology in detail. Kashyap, of the Mayo Clinic, is skeptical as well. "People were picked for their brain fogginess and they were taking probiotics. Probiotics could be an innocent bystander," he says.
"It's hard for me to imagine the mechanism of say, Culturelle, causing SIB0," says Shira Doron, a specialist in infectious diseases and associate professor at Tufts University School of Medicine who studies probiotics. "The vast majority of people will never suffer a side effect from a probiotic. But probiotics are a live organism so they have a unique set of potential risks that other supplements don't have. They can give you a severe infection in very rare circumstances."
The larger point is that probiotics should be used under a doctor's care. In April, a panel of 14 experts on behalf of the European Society for Primary Care Gastroenterology concluded that "specific probiotics are beneficial in certain lower GI problems." That does not mean any over-the-counter probiotic is likely to help you because it helped your cousin.
"Even your doctor may be going by anecdotal experience, rather than hard science."
Both Galland and Rao use probiotics in their practice, but carefully. "We advise caution against excessive and indiscriminate use of probiotics especially without a well-defined medical indication, and particularly in patients with gastrointestinal dysmotility," when the muscles of the digestive system don't work normally, Rao's team wrote.
"Because there are so many studies out there that are poorly done, that aren't looking at side effects, the science is murky. Even your doctor may be going by anecdotal experience, rather than hard science," Doron adds. Your doctor may tell you that many of his patients report a great experience with probiotics. As Doron points out, however, with disorders like irritable bowel syndrome, the most common gastrointestinal diagnosis, the placebo effect is very strong. Many patients could "respond to anything if they believe it works," she says.