Rio Rancho teenager Nizoni Begay, 17, is the first New Mexican to receive a new treatment for her long-term seizures.
“We’re proud of it,” said Nisoni’s mother, Nina Begay.
The Begay family has undergone several treatments since Nizoni was diagnosed with an infant.
“I think I’ve tried most of the drugs and even had part of my brain taken out,” said Nizoni.
Reactive nerve stimulation (RNS) devices have been used therapeutically. epilepsy For nearly a decade, Nizhoni’s operation was the first transplant performed on a pediatric patient in New Mexico.
The device, placed in the part of the brain where seizures occur, monitors brain waves, detects epileptic shocks, and sends pulses to interrupt activity.
This treatment is used primarily for patients who do not respond to other treatments.
According to the Epilepsy Foundation, at least 30% of people do not respond to seizure medication.
Some people can have surgery to remove where the seizure started in the brain. This treatment is the only way to cure epilepsy, but it does not work for everyone. On average, only about 60% of people are spared seizures by removing seizure foci in the temporal lobe.
Diets such as VNS therapy and the ketogenic diet may help many people.
However, Nizhoni didn’t want to run VNS.
“I heard about RNS and decided to go that route instead,” she said.
She said she felt terrified and excited at the same time.
However, it may take some time before the RNS device is fully functional.
Since every patient is unique, the method that works for the patient is between the patient and the neurologist after being diagnosed.
Pediatric neurologist Aaron Cardon, MD is on the Begay family team.
Cardon is one of the few pediatric neurologists in the country. New Mexico is short of specialists in all areas, but Cardone has no problem helping epileptic patients.
“Nisoni is wonderfully outspoken and passionate about surgery, but she’s also brave and down-to-earth,” Cardon said.
There are 500 known common causes of seizures, making them difficult to identify and treat. This treatment is not ideal for everyone, and not everyone who receives it benefits.
“Symptoms are highly individualized, and those of us in the medical community have no idea what’s going to start for everyone. But we can narrow down the list and diagnose the source of infection for each patient.” He said.
According to Cardon, patients have a 50/50 chance of receiving adequate treatment for epilepsy. He waits five years for a suitable candidate.
“We try our best, but the real hero here is Nizoni, not us,” he said.
According to Cardon, the standard for seizure treatment is for the patient to come out without seizures or side effects.
“But we can’t track 30 to 35 percent of people with seizures because we only have the tools we need to help,” he said.
Despite her disability, Nizoni still graduated high school with honors.
She also does everything she can to help others in her position.
The Begays wanted to bring more education to epilepsy, so Nizhoni and some of her friends wrote legislation to enact the Safe Schools Act to legally accomplish that.
So far, every state around New Mexico has enacted at least one law mandating epilepsy education.
“We just need support from MPs,” she said.