Rio Rancho teenager Nizhoni Begay, 17, is the first New Mexican to receive a new form of treatment for her long-endured seizures.
“We have a sense of pride in that,” Nizhoni’s mother, Nina Begay, said.
The Begay family has been through several treatments since Nizhoni was diagnosed as an infant.
“I think I have tried most medications and even had part of my brain taken out,” Nizhoni said.
Responsive neurostimulation (RNS) devices have been used to treat epilepsy for close to a decade, but Nizhoni’s surgery was the first time one has been implanted in a pediatric patient in New Mexico.
The device is placed on the part of the brain where seizures occur then it monitors brain waves, detects epileptic shocks and sends pulses to disrupt the activity.
This method of treatment is used mainly for patients who don’t respond to other treatments well.
According to the Epilepsy Foundation, at least 30% of people do not respond to seizure medicines.
Some people can have surgery to remove where seizures start in the brain. This treatment is the only way to cure epilepsy, but it doesn’t work in everyone. On average, only about 60% of people can be free of disabling seizures from removal of a seizure focus in the temporal lobe.
VNS Therapy or dietary therapies, such as the ketogenic diet, may help many people.
Nizhoni didn’t want to do VNS, though, because it is a fairly invasive way of dealing with seizures.
“I heard about RNS and decided to go that route instead,” she said.
She says she was scared and excited at the same time.
However, it could take a while for the RNS device to fully work.
Patients are all unique, so the method that works for them is between them and their Neurologist after they have been diagnosed.
Pediatric neurologist Aaron Cardon, M.D., is on the Begay family’s team.
Cardon is one of a very few number of Pediatric Neurologists in the nation. New Mexico is short-staffed for specialists in any field, but Cardon has no problem being a source of help for epileptic patients.
“Nizhoni is wonderfully open and is a passionate advocate for the procedure, but she is also brave and realistic,” Cardon said.
There are 500 known common causes for seizures, which makes it difficult to pinpoint and treat. This treatment is not ideal for everyone, and not all who get it will benefit from it.
“Symptoms are very individualized, and we in the medical community have no idea what starts it for everyone. But we can try to narrow the list and diagnose the source in each patient,” he said.
According to Cardon, there is a 50/50 chance that a patient gets the right treatment for their epilepsy. There is a five-year wait for appropriate candidates.
“We do our best to help, but Nizhoni is the real hero here not us,” he said.
The seizure treatment standard, according to Cardon, is that the patient come out with no seizures and no side effects.
“But we only have the tools that we have to help, so 30-35% of people with seizures are untraceable,” he said.
In spite of her disorder, Nizhoni is still graduating from high school with honors.
She is also doing 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 a bill to have a Safe Schools law to accomplish that legally.
So far, every surrounding state to New Mexico has at least one law in place that requires the education for epilepsy.
“We just need support from a congressman,” she said.