When help harms with their epileptic son in a seizure, Peter and Gisela Stetter called 911. Instead of help, the call brought disaster by Lorilyn Rackl Daily Herald Health Writer Posted on Monday, October 09, 2000 Every Saturday morning, Peter and Gisela Stetter started their day with a playful wake-up call from their son, Eric. A husky, 26-year-old part-time college student and UPS worker, Eric lived with his parents in their bilevel Hanover Park home. "He'd come into our room, sit on the edge of the bed and say, 'Hi kids, what's going on?'" Peter recalled. On an autumn Saturday - exactly one year ago today - Eric's parents woke for the last time to the sound of their son's voice. That voice, more like a bellowing wail, roused Peter and Gisela from their sleep at around 6 a.m. They rushed downstairs to Eric's basement apartment, where they found him pacing aimlessly back and forth. He picked at his clothes. He put coins in his mouth. He kept wailing. His parents tried talking to him, but Eric wouldn't - couldn't - snap out of it. Eric had epilepsy, a brain disorder characterized by recurrent seizures. When his parents found him, Eric either was in the midst of a seizure or recovering from one, still trapped in a bewildered post- seizure state that gradually blooms into full consciousness. The Stetters were scared. Until now, Eric's medication had done a good job of staving off seizures. They didn't know how long this particular short-circuit in Eric's brain had been going on, and they didn't know what to do for him. Gisela called 911, hoping to get help. She didn't know it at the time, but a bad situation was about to get much worse. What happened in the minutes following that phone call is now the subject of a $10 million federal lawsuit against the village of Hanover Park, the Hanover Park Fire Department and the Illinois State Police. The Stetters accuse the police and paramedics of bungling the call so badly, it cost their only son his life. Their lawsuit reads like a script of what not to do when handling someone with a seizure. It says that Eric was treated like a criminal, not a patient, when police allegedly tackled him, handcuffed him and held him face down until he no longer had a pulse. Many people unfamiliar with epilepsy don't know how to identify a seizure, let alone respond the right way. Misguided attempts to help sometimes result in harm. In a national survey of people with epilepsy, 15 percent said they were hurt by someone during a seizure. To the untrained eye, the bizarre behavior brought on by an epileptic attack can mimic drunkenness. It can make people look like they're high or dangerous. That's why some epilepsy patients, when they finally emerge from their seizures, might find themselves sitting in jail cells. "Every year, our office deals with several cases where people are arrested for intoxication or worse when all they were doing was having a seizure," said Barbara Dershin, director of the Epilepsy Foundation of Greater Chicago. Suburban police officers learn about epilepsy while they're recruits in police academy. After that, the subject might not be touched on again, if at all, until periodic refresher classes in first aid. The Stetters want that to change. They want their son's death to be a wake-up call for more training. They want those whose job is to respond to emergencies to be better prepared when they confront someone with epilepsy, one of the most common brain disorders in the United States. Some 2.3 million people have it nearly twice the number of people with multiple sclerosis, cerebral palsy, cystic fibrosis and muscular dystrophy combined. "They're there to serve and protect," Gisela said. "You call them for help. You're supposed to depend on them. You're supposed to trust them. Now, Ijust feel betrayed." @* @* @* Eric Stetter found out he had epilepsy at the relatively late age of 21. Although the neurological disorder can crop up at any time, most cases get diagnosed before the 19th birthday. "I think it was harder for him to deal with it because he was diagnosed later in life," Gisela said. "When you're 21, you think you have the world by the tail." Yet, Eric eagerly went about trying to see the world, taking advantage of the flight perks that came with his father's job at United Airlines. He loved traveling to Hawaii, where he could swim, dive and snorkel. He and his father had planned a trip to Germany last February to celebrate Eric's 27th birthday. At 6 foot, 2 inches tall and 235 pounds, Eric looked the part of a football player but had the soul of an artist. A graduate of Lake Park High School in Roselle, he played the guitar and saxophone and studied art and biology at College of DuPage in Glen Ellyn. Like many people with epilepsy, Eric led a normal life and had no symptoms between seizures. Looking back, Gisela remembers clues from Eric's childhood that hinted something was amiss, like the times when Eric's hand would pull in one direction while his head moved in another, as if some other force controlled his body. She didn't suspect anything serious until the day she came home from church with her daughter, Cindy, and found Eric - 21 at the time - in his bed, thrashing his arms and legs. He was moaning. Frothy saliva leaked from the corner of his mouth. Terrified, Gisela ran to get her husband. By the time she got back, Eric had started coming around. "He looked very confused," Gisela recalled. "He had no idea what just happened." Eric had just had what's known as a generalized tonic-clonic, or grand mal, seizure - the kind of seizure most people think of when they picture epilepsy, even though it's not the most common seizure in epileptic adults. In a tonic-clonic seizure, cells allover the brain are firing uncontrollably, swamping it with extra electrical energy. The brain gets overwhelmed, shuts off consciousness and knocks the person to the ground. Breathing temporarily stops. The muscles get rigid and then contract, sparking spasmodic, jerky movements. The chaos that goes along with tonic-clonic seizures usually lasts just a couple of minutes - a time that can seem like eternity to the uninitiated. When it's all over, the person falls into a deep sleep or a daze, like Eric did, until full consciousness returns. "Until then, I'd never suspected epilepsy," Gisela said. Like slightly more than half of those with the disorder, Eric's epilepsy was what's known as "idiopathic," meaning doctors couldn't pinpoint what caused it. Genes, the environment or a tag-team combination of the two can cause epilepsy. Experts suspect dozens of genes might be linked to the disorder, yet people with epilepsy usually don't pass it down to their children. For those whose genetic wiring doesn't predispose them to seizures, epilepsy can stem from an injury to the brain, whether it be a blow to the head, brain tumor, stroke or serious infection. After diagnosing Eric's epilepsy, doctors put him on Tegretol, an anticonvulsant medication. The drug seemed to be working. Eric managed to go for long periods of time without having a seizure. In fact, Eric had been seizure-free for four years before Gisela and Peter woke to the sound of their son's beleaguered voice on Oct. 9, 1999. @* @* @* Just minutes after Gisela called 911, two Hanover Park police officers arrived at the Stetters' home. A pair of Hanover Park paramedics soon joined them. The following account of what happened that morning is based on the civil lawsuit and interviews with the Stetters and their attorney. Police and fire department officials, as well as each individual named as a defendant in the suit, declined to comment for this story. Some of their official reports, however, were used to compile the lawsuit. The Stetters say that when police and paramedics came to their home, they repeatedly told them their son had epilepsy and was having a seizure. "After a very short period of time," the lawsuit says, one of the paramedics told police to restrain Eric, although it is unclear why. The Stetters insist Eric never posed a threat to anyone in the room. "It's OK to restrain them when their actions make them harmful to themselves or others that's it," said Dr. Stanley Zydlo, a veteran emergency medical physician from Inverness who pioneered the way paramedics deliver lifesaving treatment. The officers tried to handcuff Eric, and he resisted - a common response from someone either recovering from a seizure or in the midst of what's called a "complex partial seizure." Complex partial seizures are the most common form of epileptic attacks in adults, yet they don't look like the stereotypical seizure. Only part of the brain is besieged with extra electrical activity, so the seizure might manifest itself in a host of different ways, depending on where the neurological short circuit is taking place. It might make a person wander around aimlessly, mutter something over and over again, jerk his arm up and down - even take off his clothes. People having complex 'partial seizures are awake but unaware of their surroundings and generally unresponsive when spoken to. They might look like they're sleepwalking or drugged. After the seizure runs its course, usually in a few minutes, the person's consciousness often stays clouded for some time. If you try to restrain people during this crucial period of confusion, their gut reactions likely will be to fend you off, usually by pulling away or flailing their arms. "The person is not thinking clearly, yet part of the brain is still working - the part that says, 'I'm being threatened,' " said Dr. Steven Schachter, an epileptologist and associate professor of neurology at Harvard Medical School. Even though Eric allegedly posed no threat, the two police officers "threw Eric Stetter face down onto a small couch," the lawsuit says. The paramedics supposedly held Eric while police snapped on handcuffs. With Eric shackled face down on the couch, police radioed for more officers. It wasn't long before four additional Hanover Park police, an Illinois state trooper and three more paramedics pulled up to the Stetters' home. While Eric's frantic parents looked on "in shock," as Gisela said, police and paramedics allegedly held Eric down while they tied his ankles together with flex cuffs. Eric laid there with his face buried in the couch cushion while paramedics brought in a stretcher. When they moved him onto the stretcher, the state trooper allegedly knelt on Eric's shoulder and others held him down as they strapped him in, face down. By this point, Eric had stopped moving. He had stopped making noise. One of the officers suggested checking Eric's pulse. None was found. They carried Eric past liis parents and into the ambulance and took him to St. Alexius Medical Center in Hoffman Estates. A doctor pronounced him dead oil arrival at 7:28 a.m. Last February, the same month Eric and his father were supposed to be vacationing in Europe, the Cook County Medical Examiner's Office released its report, ruling the death a homicide. The 10- page report said Eric Stetter died of "asphyxia due to compression of the neck and chest while being restrained." DuPage County prosecutors launched an investigation. They decided in April not to bring charges against police and paramedics, saying there was no evidence of "criminal intent." The Stetters' attorney, Dennis DeCaro, doesn't think the police and paramedics went to Eric Stetter's house intending to hurt him. But the upshot is that Eric did get hurt, and it's their fault, DeCaro said. "If they had to restrain him, which is questionable, they could have turned him on his side instead of putting him face down, handcuffed, with their weight on him," DeCaro said. "He couldn't breathe. Once he stopped breathing, they should have provided immediate medical attention, which they didn't do. "The Stetters called 911 because they were looking for help from somebody - somebody who would know what to do about epilepsy," he added. "Apparently, they didn't send anyone like that." @* @* @* Every year, hundreds of would-be police officers and state troopers go through the Illinois State Police Academy before they get their badges. Paramedic Sharon White oversees the training the recruits and cadets get in emergency medicine. One of the points White hammers home is the importance of making sure a person can breathe. "The ultimate concern about any patient is the airway- always ensure they have an airway," White said. "You need to make sure they have a pulse and they're breathing. If they end up pulseless and breathless, you would have to start CPR." That's not what 'happened in the Stetters' basement, the lawsuit says. When police and paramedics discovered Eric's pulse had stopped, they didn't drop everything and try to get his heart beating again - a big mistake, said Zydlo, who trains paramedics in the Fox Valley. "The first thing they should have done is quickly turn him over, ventilate him - two quick breaths - and do CPR while you hook up your defibrillator. Then you shock him, if needed. Every minute matters." While paramedics can inject Valium or other drugs to stop a patient's seizure, many times it's not necessary, doctors say. Seizures usually end on their own in a couple of minutes, so the best first aid often is quite simple: Just keep people out of harm's way until the seizure subsides and they're clear-headed and back to normal. "You try to protect someone in their environment," said Jim Davies, who coordinates training for the Chicago area affiliate of the epilepsy foundation. "If they're walking toward the stairs or toward traffic, get in their way. If they're ambulating around an area, clear the area." Police and paramedics certainly have a right to protect themselves if they're being threatened by someone - sick or not. But experts point out that people having seizures are rarely capable of carrying out a calculated, violent act. Any punches or kicks most likely would be self-defense moves, a way to ward off someone's attempts to hold them down. The notion that people having seizures are dangerous makes nurse "Janice Buelow bristle. "I can't think of a time when someone having a seizure would be dangerous to others unless someone is trying to restrain them," said Buelow, who helps run the epilepsy education program at Rush- Presbyterian-St. Luke's Medical Center in Chicago. "I'm appalled that we have people in public positions who still don't understand that." A Chicago paramedic for 26 years, Gunther Kettenbeil said that when a seizure patient needs to be restrained, there's often more to the story than just epilepsy. "Usually, it's a combination of drug abuse and seizures together - those are the cases where we typically restrain them," said Kettenbeil, who trains emergency medical technicians, or EMTs, at Oakton Community College in Des Plaines. "Those are the people that become violent, and they need to be secured for their own safety as well as the medics' and the EMTs'." Toxicology test on Eric Stetter showed no trace of drugs in his body. Even when police or paramedics do need to restrain someone, there are right and wrong ways of doing it. The Cook County medical examiner's report makes a strong case that the wrong method was used on Eric. Pressure applied to his neck and chest while he lay face down starved his lungs orair, causing him to suffocate. "There's nothing wrong with tying the legs together, tying the arms together and keeping them face down," Zydlo said, "but you don't sit on them or put your weight on them so you're restricting the diaphragm and chest from moving." As Dershin from the epilepsy foundation put it, "If they needed to restrain him to get him to the hospital, there was a gentler way of doing it. A policeman's job is to protect, not to kill." @* @* @* It's not unusual for suburban police officers to get little follow-up training dedicated to epilepsy once they hit the streets. "Other than basic academy training in first aid, we don't have anything that specifically addresses that," said Schaumburg Police Sgt. Paul Rizzo. Cmdr. Jay Patrick at the Gurnee Police Department said his officers are taught CPR and other life-saving measures, but they don't get specific training on epileptic seizures. "We haven't really found a need to train the officers that much in those kinds of things because our paramedics usually respond within minutes," he said. Things are different in Mundelein, where officers every year watch an epilepsy video that teaches them how to help someone having a seizure and how to decipher someone with epilepsy from a drunk or a criminal. "I know we get more training than others," said Deputy Chief Keith Kalodimos. "I oversee the Lake County Chiefs of Police Training Committee, and I'd say we're definite leaders of the pack as far as training our officers goes." The Epilepsy Foundation of Greater Chicago wants more police departments to follow Mundelein's lead. "We're realizing that initial training isn't enough," Dershin said. "They need to be retrained again and again." To that end, the epilepsy foundation recently added a new member to its board: Lorenzo Clemons, administrative liaison to Cook County Sheriff Michael Sheahan. Clemons is surveying all of the county's police departments to find out exactly what epilepsy training their officers get. "I'd like to see us put the curriculum in order and make the training free of charge to the departments," Glemons said. "Once the training took place, they would be certified." Paramedics and EMTs naturally get more training in epilepsy than police officers do, yet even these medical professionals sometimes disagree on seizure protocol. Some paramedics say they would never put people face down because it would be too difficult to monitor their breathing. Others say the face-down position is fine - even called for if the patient tries to bite or spit. And even though paramedics already are taught to start CPR if a person isn't breathing and doesn't have a pulse, Eric's case shows that this classroom lesson doesn't always get followed in , the real world. @* @* @* The bottom line is that the Stetters called 911 because they didn't know what to do for their son. They're convinced police and paramedics didn't know, either. Would more classroom time, videotapes or testing in seizures have prevented Eric's death? For Peter and Gisela Stetter, that's just another "What in" that will always go unanswered. But they think there's no question that better training will lessen the chance of their nightmare becoming someone else's reality. "That's the only good I can see coming out of this," Gisela said. In the meantime, the Stetters are just trying to hold on to the memory of their son - a memory that's growing fainter each day, even if the pain is not. "It's getting harder to recall his voice," Gisela said. "I miss the little sounds around the house, or saving him part of a meal from a restaurant. I miss him walking around the yard. "It's almost more intense now," she added, "because you realize he's not on some trip or vacation. You realize he's not coming back." The Epilepsy Foundation of Greater Chicago will give epilepsy training to any suburban police department that asks for it. Contact your local police department's training officer and ask the officer to call Jim Davies, program coordinator at the Epilepsy Foundation of Greater Chicago, at (312) 939-8622. GRAPHIC: First aid for seizures Here's what you can do if you see someone having a seizure. For nonconvulsive seizures: - If the person is walking or trying to touch someone, move others out ochis or her line of vision. - Do not restrain. - Gently redirect the person away from hazards (traffic, a train platform). - Stay with the person until he regains consciousness. For convulsive seizures: - Stay calm. - Never put something in the person's mouth. (people cannot swallow their tongues - it's a myth that has caused broken teeth and worse.) - Ease the person to the ground, cushion the head, remove glasses and loosen any tight neckwear. - Gently turn the person on his or her side. - Time the seizure. - Stay with the person until he or she is fully / awake and oriented. Call for help if: - A seizure lasts more than five minutes. - The person doesn't resume breathing after the seizure. - The person has one seizure after another. - The person is injured, pregnant, diabetic or appears ill. - There is no medical ID for epilepsy and the person is not known to have epilepsy.