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STORY BY

Imelda Gott

In the summer of 2005, as football training was coming to an end, 15-year-old Jonathan Dornhoefer began complaining of profound fatigue, no matter how much he slept. He had a fever, and his parents thought it might be mononucleosis. Tests proved negative. Perhaps it was a low-grade infection, doctors said.

Jonathan began to feel better, but one mid-August night, he developed chills and fever, and any movement was a struggle. The next morning, he dragged himself to school. He knew he’d never make it to football practice. By the end of the day his fever was 103 degrees. This time, the doctor diagnosed a sinus infection and a slow-resolving virus.

A few days later, he returned to school and ball practice, but couldn’t remember the plays and had trouble with balance. Chest pains and breathing difficulty landed Jonathan in the emergency room one evening in late August. Tests again proved normal and he was discharged with a prescription for pain.

Problems with balance persisted, and, even though he often placed a hand on a friend’s shoulder to keep from stumbling, he walked like a drunk. By early September, he asked for a wheel chair.

“The doctors told Jonathan that he was making this up, and he could get out of the wheel chair at any time. His headaches were so bad, he said that he felt his eyes were being pushed out from the inside,” says his mother, Charlotte. He continued to run a fever.

Charlotte, Jonathan and Rick Dornhoefer.

Charlotte, Jonathan and Rick Dornhoefer.

During an appointment with a psychiatrist, Jonathan began twitching. Within 30 minutes, the twitching turned into involuntary jerking that left him soaked with sweat. After a high-dose regimen of antispasmotics, the spasms gradually improved over the next few weeks.

Last October, Charlotte persuaded Jonathan’s otolaryngologist (ear, nose and throat doctor) to test for West Nile Virus. Finally, after more than two months, the Dornhoefers had an answer for Jonathan’s long ordeal. Yet, even though they now had a label for his perplexing combination of symptoms, his struggle would be far from over.

“He was sick for weeks,” says his father, Rick. “Months!” Jonathan counters.

A long recovery

The 3,000 cases and 119 fatalities in 2005 alone from West Nile Virus don’t tell the whole story. One percent of patients, like Jonathan, recover from the short-term effects, yet find themselves struggling with long-term residual complications.

Of those who become chronically ill, most are older or have compromised immune systems, diabetes or high blood pressure, so Jonathan’s case is not typical. Young and previously in good health, Jonathan is one of only four teenagers in the West Nile Virus study led by Kristy Murray, DVM, PhD, assistant professor in epidemiology at The University of Texas School of Public Health at Houston.

For most people who get West Nile Virus, the flu-like symptoms last only a few days, and they recover. Many people don’t even know they’ve contracted it, explains Murray, who also led WNV studies at the U.S. Centers for Disease Control and Prevention.

Jonathan’s mother, a retired registered nurse, knew her son had something other than a lingering virus that the various physicians diagnosed. “I wanted a name. We needed help,” Charlotte Dornhoefer says.

She suspected West Nile Virus because she had heard of a case with symptoms similar to Jonathan’s. “When I ‘Googled’ West Nile, I found that while he didn’t have all the symptoms, he had enough for me to ask for the test.”

Charlotte had requested the blood test needed to confirm WNV from his regular pediatrician, a neurologist, and the cardiologist he saw in the emergency room. Months after his symptoms first appeared, the ENT Jonathan was seeing for a sinus infection ordered the test for West Nile Virus.

Through his mother’s persistence in finding help, she contacted the Harris County Department of Health and Environmental Services who referred her to Murray’s study. Murray points out that many physicians do not think about West Nile Virus affecting children, and this might account for the delay in Jonathan's diagnosis.

The emotional toll

“After about a year, most people infected by West Nile Virus are fully recovered physically,” Murray says. Her research reveals though that 31 percent go on to develop depression, although they report they were not depressed before contracting the virus. Within that group 75 percent have depression scores consistent with clinical depression.

“West Nile Virus has a neurological component. It causes a wide spectrum of illnesses: encephalitis or meningitis, causing a brain infection that can result in depression as a side effect,” Murray explains.

More than half experience personality changes including irritability, aggression and rage. Jonathan experienced the full range of angry emotions, his mother says. “He’d go into a rage or be angry over little things. And he couldn’t calm down,” which also brought on anxiety and depression, she adds.

Neurological symptoms

“Looking back at it, I felt like my body wanted to jerk, and I couldn’t have stopped it either,” Jonathan says. The twitching was the virus’s effect on the muscles that control his balance. The staff at the Memorial Hermann TIRR (The Institute for Rehabilitation and Research) worked out a program to restore his balance, and this set of symptoms has since disappeared.

“West Nile can also cause paralysis. For Jonathan, I think it was more of a severe weakness. For most of the children I’ve seen, they or their parents report a change in personality, but they eventually return to normal.”

With 80 percent of people who are infected, Murray says they show no symptoms, and their immune response system clears the virus within a few days. For those who develop flu-like symptoms, “supportive care” is the prescription: rest and drink lots of fluids. A rare few go on to develop severe symptoms, including behavioral problems.

While there are blood tests to determine if you have WNV, there is no vaccine, antidote or drug cure. Murray suggests you take precautions and protect your children:

The Dornhoefers are relieved that Jonathan continues to improve. But, Jonathan still has a way to go before he is back to his pre-viral self. Anxiety lingers, as do mood swings. Though the family is aware that he dodged a fatal bullet, no one prepared them for the lingering effects. “That’s the part no one ever hears about,” Charlotte says.

UPDATED: 10-11-2006