This Mom Got Her PhD to Learn More About the Cause of Her Daughter's Seizures — and Even Discovered a Treatment
"I was a mom on a mission," Tracy Dixon-Salazar said after not receiving clear details from doctors
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students with diplomas -- stock imageA family’s struggles with their daughter’s unknown source of frequent seizures led her mother to find a solution.
In an interview with TODAY.com published on Monday, April 22, Tracy Dixon-Salazar recalled the first time her daughter Savannah had a seizure.
At the time, she was just 2 years old, and her family thought the child was choking and called 911.
“Both my husband and I went at the same time, ‘What’s a seizure,’ ” Dixon-Salazar, 52, said, recounting how paramedics were the ones to identify the issue.
“We actually went six months and she didn’t have any and then at the age of 3, they came back hard and fast. She started having hundreds of seizures a day.”
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research lab -- stock imageAfter speaking with doctors, Dixon-Salazar later learned Savannah, now 30, had epilepsy.
However, the intensity of the toddler’s episodes, paired with not clearly having the situation explained to her, led the San Diego native to take matters into her own hands for her family’s sake.
“We actually found out she had epilepsy by reading her chart. No one ever told us,” Dixon-Salazar said. “I requested her medical records because I was a mom on a mission.”
There was no family history of seizures, but two years later Savannah developed Lennox-Gastaut syndrome (LGS), a condition that includes frequent seizures and developmental delays, TODAY.com said, citing the National Library of Medicine.
“No one’s born with LGS. LGS is something that develops over time when the brain is barraged by seizures,” Dixon-Salazar said. “Your brain is also trying to develop. She was 3 years old, and her brain was trying to put itself together… she’s got all this abnormal seizure electricity going on, so the brain wires itself wrong.”
Their family became overwhelmed.
“Savannah stopped developing. We’ve had to resuscitate her. She’s in the hospital all the time,” she said, noting her struggles with insurance companies.
Dixon-Salazar estimates that Savannah has had 40,000 seizures throughout her life. She never learned to use the bathroom, read or write.
After completing high school, Dixon-Salazar enlisted in the military and had never gone to college. All of that changed when her daughter’s condition failed to progress.
She went back to school for English, hoping it would help her better grasp medical terminology. Next, it was science courses.
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graduate -- stock photo“I was just trying to understand how this kid, this healthy 2-year-old could go from being totally normal to having seizures and her life derailed. And reading those (medical studies) drove me to go to college,” she said. “I needed an outlet for the pain.”
Over the next 12 years, she earned an associate, bachelor and master’s degree before getting her Ph.D. in neurobiology and finishing a three-year postdoctoral program.
“Savannah didn’t have an inherited epilepsy,” Dixon-Salazar explained. “I sequenced her. I did all this analysis, and I was able to show she’s got calcium channel mutations."
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Dixon-Salazar showed Savannah’s doctors what she had discovered, and she was prescribed a calcium blocker.
“It worked within two weeks.”
“She went from having 300 seizures a month and going into these nonstop seizures a couple of times a week… to a 95% reduction in her seizures and it’s been 11 years, which is pretty incredible,” Dixon-Salazar said.
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