In an age where there are wireless gadgets that do just about anything, Chicago researchers say they are on the verge of developing an accurate alarm that could warn of a seizure before it strikes. But one piece of the puzzle still needs to be solved.
Jackie Trejo is like so many other 8 year olds. She loves stuffed animals, donuts and coloring. But the outgoing little girl is quick to point out what makes her different.
"Please don't forget about my twitches," Jackie said.
Without much warning, her right arm starts twitching. The movement, which looks like a strange muscle spasm, is caused by an electrical malfunction in Jackie's brain. The twitching is actually a seizure.
"There is no timing of when it was going to come... there is no exact hour or time," said Judith Trejo, Jackie's mom.
Judith Trejo says medications have not been all that helpful, and just recently, Jackie had a peanut-sized portion of her brain removed in hopes of stopping the seizures. But so far they keep coming. Most of the time, they only affect her right arm, lasting around 30 seconds. But the longer they go, the greater the danger.
"Once they go over two minutes, she starts losing oxygen, and she just kinda starts blacking out, and she stops breathing," said Judith Trejo.
Judith Trejo says the disorder is overwhelming at times. Jackie has to be constantly watched because they never know when a seizure will hit.
"We've had more than 20 emergency room visits," Judith Trejo said.
One device could be the answer for hundreds of thousands of families like the Trejos. Researchers at the University of Chicago Medical Center are testing out a portable unit designed to detect the abnormal brain activity that happens before a seizure.
"In a way, you could compare it with detecting an explosion or detecting an earthquake," said Wim van Drongelen, Ph.D., pediatric neurology.
Van Drongelen says it is basically a compact EEG machine that monitors brain activity. When the signs of electrical trouble are picked up, the machine would transmit a warning to a receiver. The patient could then take steps to sit down or tell someone. But van Drongelen says there's one huge catch: they have the technology but still haven't figured out the most reliable warning sign.
"Finding algorithms that would detect for a particular person when the seizure is about to start, that's really key," he said.
They're recording hundreds of patients' brainwave patterns, creating a database in hopes of finding the precursor to seizures. In the lab, electrical activity of brain tissue is also being analyzed. The research is tedious and expensive. But experts say it's desperately needed.
"We're looking at approximately 3 million people across the U.S. with epilepsy somewhere close to 1 million people would benefit from this device," said Dr. Michael Kohrman, pediatric epileptologist, Univ. of Chicago Med. Ctr.
Judith Trejo says a device like that could take a lot of pressure off her family, allowing them to enjoy the simple pleasures of life that many take for granted.
The University of Chicago is also working with Argonne National Laboratory to develop the algorithms or codes that are needed to make the monitoring system successful. Several other research centers around the world are also working on similar devices. But it could be years before any of these devices are ready.
University of Chicago Pediatric Epilepsy Center
Dr. Michael Kohrman
Center for Advanced Medicine
5758 S. Maryland Avenue
Chicago, IL 60637
University of Chicago Comer Children's Hospital
5721 S. Maryland Avenue
Chicago, IL 60637
Wim van Drongelen, PhD
Technical Director Pediatric Epilepsy Center
Coordinator of Research Pediatric Epilepsy Program
Senior Fellow Computational Institute
Primary Department: Pediatrics
Address: 5841 S. Maryland Ave., MC 3055
Chicago, IL 60637-1470
Website: Department of Pediatrics