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The CDC estimates 470,000 children in America live with epilepsy. Researchers are testing a different kind of drug to help those patients.
Nineteen-year-old Shanahan Dameral has had epileptic seizures for 14 years, despite taking five anti-seizure meds daily and having two brain surgeries. Shanahan Dameral says, “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 M-Tor could help. It’s overactive with epilepsy. Nab-rapamycin inhibits the pathway.
Jason Hauptmann, a Pediatric Neurosurgeon at Seattle Children’s Hospital says, “Our thought is that by changing the way this protein acts in these children with epilepsy, we can, in turn, change their epilepsy.”
Shanahan was in the phase one trial, three infusions, once a week. His mom noticed changes.
Linley Allen, Shanahan’s mom, says, “The seizures were definitely shorter. They were much different and much more manageable.”
Russ Saneto, a Professor of Neurology, says, ” 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.”Linley says he’s had one to three seizures a month since the trial, compared to four a week before.
Shanahan Dameral says, “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.
Dr. Hauptman says, “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 the drug is approved for other diseases, which could expedite getting it to the public after trials.