SEATTLE, Wash. – The CDC estimates 470,000 children in America live with epilepsy. For nearly half of those kids, multiple drugs and brain surgery have had little to no effect. Researchers in Seattle are testing a different kind of drug, and they’re excited about early results.
Shanahan Dameral,19, has had epileptic seizures for 14 years, despite taking five anti-seizure medications daily and having two brain surgeries.
Dameral explained, “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.
Jason Hauptman, MD, Ph.D., a pediatric neurosurgeon from Seattle Children’s Hospital said, “Our thought is that by changing the way this protein acts in these children with epilepsy, we can, in turn, change their epilepsy.”
Dameral was in the phase 1 trial - three infusions, once a week. His mom noticed changes.
“The seizures were definitely shorter. They were much different and much more manageable,” said Linley Allen, Dameral’s mom.
“He didn’t have any side effects except for one bloody nose. At the end of five weeks, he didn’t have any more seizures,” said Saneto.
Linley says he’s had one to three seizures a month since the trial, compared to four the week before.
Dameral said, “It lessened the seizures. It did that, which was a thrill, to be honest.”
The researchers at Seattle Children’s Hospital are encouraged and looking ahead to the next trial.
Hauptman said, “We’re going for improvement, and even that would be a win in my book for these children. And we’re hoping for a cure.”
A slightly different version of nab-rapamycin is approved for other diseases, which could expedite getting it to the public after trials. Seattle Children’s is recruiting for another phase 1 trial, hoping to launch phase 2 in the next year or two.
You can get more information on the trial here: Renée Rivers at 206-987-1697 or email renee.rivers@seattlechildrens.org.
Contributors to this news report include: Wendy Chioji, Field Producer; Bruce Maniscalco, Videographer; Cyndy McGrath, Supervising Producer; Roque Correa, Editor.