Jeff's docs at Camp Pendleton find he's better without his epilepsy meds

After his fall, Jeff's brain showed to be normal

— 'September 12 of 1993, when I collapsed at the bowling alley, the Vista Entertainment Center, that was the starting point," Jeff Olsen says.

What started on that day was a new life for Olsen, who was 29 years old when he crashed onto the boards after completing a game.

He'd been a regular at the Vista lanes since his family moved there from Oceanside in 1973. Jeff was easy to notice. For most of his life, he looked and acted profoundly retarded. His gait was unsteady; he employed a Rain Man-esque refrain of "you knows" to express a thought. Although he had grown to be 6´3´´ tall and weighed some 250 pounds, he was exhausted after walking a block. He slept 12 or 14 hours a night. Awake, he had a glassy stare, and he was withdrawn.

At 14 months, his doctors at the Camp Pendleton Navy hospital, where Jeff had been born, diagnosed Jeff as epileptic and brain-damaged. Over the years, they prescribed a battery of powerful drugs to keep the resultant seizures in check.

By the time he was 29, Jeff had never held a job, though he had learned arithmetic and reading and writing in special- education classes. The state of California ranked him as having a "most severe" disability. When he was 21, his doctors declared his disability was permanent.

It appears they were wrong.

After his fall in the bowling alley, Jeff's parents took him back to the Navy hospital at Camp Pendleton. Jeff's father Bob is a Marine Corps veteran who lost a leg in Korea and first settled in Oceanside on his return from the war.

The Navy doctor who examined Jeff after his tumble in 1993 hadn't seen Jeff before, but he suspected the young man was suffering from an overdose of the combination of tranquilizers and anti-convulsive medications he'd been taking in ever-increasing amounts since infancy. In addition to his physical weakness, Jeff's skin color was turning gray, his father recalls.

The doctor immediately reduced his dosages -- complete withdrawal would be too physically taxing -- and Jeff started to literally awaken. His parents say it was like watching someone come out of a coma. He started talking -- to the point where his family grew tired of hearing him -- in well-organized, complete sentences. Today, just a hint of a didactic drone gives Jeff's voice a slightly different sound. He began going on walks -- five, eight, then ten miles -- with his mother tagging along to make sure he stayed out of harm's way.

But Jeff's medical records still carried the diagnosis of epilepsy and brain damage, dating back to the Camp Pendleton doctor who saw him in 1964 when Jeff was an infant. Jeff was born on the base in 1963, the fourth of four children, all boys. Aside from a brief but severe viral infection and fever at five months, Jeff was a happy and healthy baby, just like his three brothers.

But around the time of his first birthday, he started experiencing mild seizures. His parents took him to the Camp Pendleton doctors. And that's when Jeff began his 30-year descent into a pharmacologically induced fog of mental confusion and physical suffering.

An electroencephalogram (EEG) administered when he was 14 months old showed an abnormal spike of electricity in Jeff's brain. (Magnetic resonance imaging [MRI] devices and CT-scans were still years away.) Acting on conventional 1964 medical wisdom, the Navy doctors told the Olsens their baby's brain was literally scarred, that his seizures would escalate, leaving Olsen mentally retarded and unfit to care for himself.

Jeff's parents were told to get on with their lives as best they could.

Also, in accord with standard treatments then, the baby was put on Phenobarbital, a potentially addictive tranquilizer, to control the seizures. By the time he was four, Jeff was showing signs of hyperactivity, a not-uncommon reaction for children. Following the protocol for treatment of hyperactivity (still largely applicable today), Jeff was given a stimulant, Dexedrine. In a short while, it was replaced by Stelazine. The records aren't clear why the switch was made. That drug would never be used today; it is too powerful to administer to a child.

San Diego neuropsychologist Barbara Schrock said that the drug was much more popular in the '50s and '60s. "It's one of these heavy-duty psychotropic drugs that were the miracle drugs in the '50s that they gave to severely mentally ill patients to make them more manageable." Now, however, giving Stelazine to someone with Jeff's condition would be "like using an elephant gun to shoot a mosquito," she said.

As Jeff grew, so did the dosage. He developed a host of intractable side effects, including chronic, itching skin rashes all over his body, hallucinations, and temporary deafness. Soon after he went on Dilantin, his eyesight grew so bad he had to wear glasses. When problems arose, new drugs were substituted. But throughout those 30-plus years, none of Jeff's doctors or psychologists or special-ed teachers ever thought to re-evaluate the initial diagnosis clipped to his chart.

In 1997, 4 years after the Navy doctor's suspicions led him to cut down Jeff's medications, Jeff found a doctor who could explain what had happened to him 30 years ago and what had gone wrong.

San Diego neurologist Dr. Thomas Schweller, who trained at the Mayo Clinic in the '60s and now has a private practice in San Diego, specializes in seizure disorders. He spotted Jeff's problem after a review of the 1964 report on the EEG. "The pattern is something called 'spiking' in the central temporal part of the brain, the sylvian fissure, the pathway that divides the lobes of the brain," he explains. Jeff was suffering from "benign sylvian seizures of Lambroso, where you have seizures that are often nocturnal, often associated with an onset of a partial-speech arrest because it's near the speech center."

Though extremely rare, the syndrome is easily controlled with relatively mild medications. In most patients, it resolves itself by the time they reach adulthood. Their brains are left unharmed and they need no further treatment.

An MRI and an EEG administered in the years after Jeff's bowling alley fall show his brain to be normal and healthy, which confirms Schweller's diagnosis.

Schweller has been treating Jeff for about six months now and is proceeding cautiously. "If we can get him off his medication, it may help to get a closure to this. But at this point I'm reluctant to make that sort of a change. We need to talk about a plan. It's not uncommon to have a convulsion from the medication being withdrawn, and that's confusing" for the patient. To wean him from the anti-convulsives could take as long as five years.

"Jeff's story is so interesting because it involves such an evolution in how we have viewed medicine over the past 30 years," Schweller says, who calls himself a "dinosaur" who trained on the first CT-scan machine in the country and went through medical school before most of today's advanced technological tools were developed.

"[Jeff's original doctors] got so excited about the abnormality of the EEG," Schweller says about Jeff's experience. "The most important thing is the clinical presentation of the seizure," but the doctors in 1964 trusted their machines more than themselves.

"He came along at a time in life when a lot more emphasis was placed on electroencephalograms and a lot fewer medicines were used. In the past, when one had seizures or an abnormality in the EEG, there was a belief you were doomed to have mental retardation and end up in an institution. Although that does happen, if you're not constantly reassessing how your patient is performing, you may be misled.

"When you have someone with several medications that tend to sedate them, you may get a misinterpretation that their subdued nature is due to mental retardation rather than medication. This apparently is what happened to this young fellow."

Like many patients in today's managed-care plans, patients in the military medical system often see different doctors over the course of their treatment, Schweller points out. "When these diagnoses are made early on in an individual's life, it becomes very difficult to change them. The next person who's doing the care then tends to say, 'This is the diagnosis; I trust this more than what I'm seeing,' and continues to proliferate the same mistakes."

Schweller says Jeff has average or above-average intelligence. But his transition back into society is going to be difficult. Jeff knows this too. "Somebody who's 34 and hasn't held a job?" Jeff asks rhetorically. "Nobody wants to take the chance and hire you. They figure something must be wrong."

Once a person has been labeled with a disability or illness in his medical records, Schweller says, "It's like trying to change your trw [credit rating]. That's why they came to me."

At the same time, now that he's recovering, Jeff's disability payments -- around $638 a month -- are increasingly in doubt.

But Schweller is optimistic about Jeff's ability to adjust. "He doesn't feel that he's disabled. Many individuals who survive a trauma like this take the path of becoming very withdrawn and depressed. But others become angry and want to tell their story and be more open so people can understand their problem. That's the way he seems to be. He clearly is able to do more for himself than anybody thought."

Jeff has passed through the worst of the withdrawal. "It's supposed to be something like a person trying to get off these illegal drugs," Jeff says. His father, Bob, adds, "His face would twist up like he was going into a stroke. His head would go to one side."

Jeff has educated himself about the pills that once ruled his life. He can tick off dosages to the last milligram and recite the side effects he suffered. He realizes now that for ten years he was technically near death from taking too much Dilantin.

Jeff also suffered through the '60s version of special education, where teachers yelled in students' ears and held strong-smelling substances under their noses to stimulate them. Jeff was declared asthmatic and autistic; he suffered from a host of drug-induced ailments, including chronic diarrhea, inflamed sinuses, inflamed hemorrhoids, and tonsils swollen so large they blocked his ear canals, which filled with fluid and caused temporary hearing loss (it was restored after the canals were drained).

Most of his symptoms have abated now that the medication has been reduced.

"They stole his life," Bob Olsen says now. "They took away his childhood, they took away his teens, they took away his young adulthood. By the time he gets off all this, he'll be going into middle age. They say get a life -- what life? He still has to learn and get out; he should have been married now and had children and a promising career. That's why we've been trying to find help for Jeff. Nobody wants to do anything, nobody wants to get involved."

Bob Olsen, 66, retired from the postal service, jokes that he'll "have to live until I'm 106 to make sure Jeff gets a fair shake. I don't drink alcohol or smoke or take illegal drugs. I have to stay in shape." His three other sons have their own lives and careers.

Legally, the Olsens have been rebuffed in efforts to sue the government for restitution. Most recently, on February 3 of this year, Southern District federal Judge Irma E. Gonzalez granted the government's motion for summary judgment against the Olsens, in effect throwing out their claim against the government. The judge ruled it was invalid because it had been filed after the two-year statute of limitations for tort claims against the government.

Dr. Schrock, who practices at Sharp Memorial Hospital, counsels patients who are coping with the aftermath of brain injuries. She warned that someone who has been through an experience like Jeff's is likely to face significant emotional adjustments.

"Although this is wonderful news," Schrock says, "months down the road it may be a little hard to deal with. You can't change overnight that little Polaroid snapshot of yourself that is who you are. It's an identity crisis. He'll have an identity crisis. He'll need to adjust that snapshot to be current.

"That's not easy even if it's a positive one. You've been one person for 34 years, and you wake up and they say, 'Oops, we made a mistake, you're someone else.'"

Jeff seems to relish his new identity. He hopes to take his story national. The Dayton Daily News, which ran a series last year on alleged shortcomings in the military medical system, wrote about his case earlier this month after Jeff saw a reference to the larger series and called the paper. He's also sent packets to 60 Minutes and 20/20, as well as the tabloid shows. Although he hasn't received any replies, he's optimistic. "I'm planning to go on television."

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