For nearly half of those kids, multiple drugs and brain surgery have had little to no effect.
19-year old Shanahan Dameral has had epileptic seizures for 14 years, despite taking five anti-seizure meds daily and having two brain surgeries.
"You know that feeling like when somebody tips your chair back and you get that feeling? Just like that."
Doctors Russ Saneto and Jason Hauptman theorized that targeting a protein pathway called mTOR could help.
It's overactive with epilepsy.
Nab-Rapamycin inhibits the pathway.
"Our thought is that by changing the way this protein acts in these children with epilepsy, we can, in turn, change their epilepsy," explained Dr. Hauptman.
Shanahan was in the phase one trial, three infusions, once a week.
His mom noticed changes.
"The seizures were definitely shorter." said Linley Allen.
"They were much different and much more manageable."
"He didn't have any side effects except for one bloody nose," recalled Dr. Saneto.
"At the end of five weeks, he didn't have any more seizures."
Shanahan says he's had one to three seizures a month since the trial, compared to four a week before.
"It lessened the seizures," he explained. "It did that which was a thrill, to be honest."
NEW RESEARCH: Another mTOR inhibitor similar to Nab-rapamycin has been used by doctors to safely treat a seizure disorder called tuberous sclerosis complex (TSC). This drug improves seizures in children with TSC by targeting a known genetic mutation, which causes hyperactivity in the mTOR pathway. Up to 18 children and young adults between the ages of 3-26 will receive Nab-rapamycin as part of the first phase of this research. Researchers anticipate that results from this trial will inform a larger, multi-center study, reaching children beyond Seattle Children`s in the next two to three years.
The researchers at Seattle Children's Hospital are encouraged and looking ahead to the next trial.
"We're going for improvement and even that would be a win in my book for these children," Dr. Hauptman said.
"And we're hoping for a cure."
If this story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Jim Mertens at email@example.com or Marjorie Bekaert Thomas at firstname.lastname@example.org.