Jarrod’s story:
Rare, but once pandemic, form of encephalitis still challenges doctors
HOUSTON – (July 10, 2007) – August 28, 2006 started out as the last typical morning the Payne family would have for months. Mom Louise dropped off 16-year-old football player and honor roll student Jarrod at Booker T. Washington High School and the High School for the Engineering Professions. Dad Earl went to his job as a security manager at Memorial Hermann Northwest Hospital.
Mid-morning, in the middle of an assembly in the auditorium, Jarrod’s head started to jerk, his body began shaking and his eyes rolled back as he lost consciousness. His shocked friends immediately called his mother to tell her that her otherwise perfectly healthy son had suffered what appeared to be a seizure.
Patient Jarrod Payne, shown here Oct. 2006 at Children's Memorial Hermann Hospital, lost 30 pounds during his illness. Photos courtesy of the Payne Family.
By the time he reached the hospital where his father worked, Jarrod was alert. The only thing he could tell his parents was that in the past week, he had experienced a tingling and numbness on one side of his body but he didn’t tell them because he thought it would go away. It didn’t.
Tests, including a CAT scan, came back negative. So Jarrod was released and doctors suggested he see a neurologist.
Later that same day, he told his mother his food didn’t taste right and he went to lie down. When Louise checked on him a few minutes later, Jarrod was making an odd sound – something between a hiss and a sigh – and his head was cocked up and to the left. His body was stiff.
Their nightmare had begun in earnest. For the next two months, they would enter a world where no one – except, finally, one doctor at The University of Texas Medical School at Houston – could tell them what was wrong with their son.
Totally lethargic, in a small-child-like state, Jarrod was in and out of three hospitals. He had to be physically restrained during part of that time and lost 30 pounds from his 6-foot-1 frame. As he experienced psychotic episodes, seizure-like events, dystonia and spasms, he would uncharacteristically become agitated with outbursts of vulgar language.
His mother, short of any other explanation and a woman of deep faith, believed Jarrod was fighting a Job-like battle with the devil for his soul.
“The scariest thing for them was that this was not their kid,” said Ian Butler, M.D., professor of neurology and chief of the Division of Child Neurology at the UT Medical School. “Physicians here were concerned that he had some type of encephalitis but his MRI scans were essentially normal, which is very unlike other forms of encephalitis – but it reminded me of Von Economo’s encephalitis.”
A healthy Jarrod, eight months after his hospital stay, is now a "Player to Watch" on the Washington War Eagles football team.
Encephalitis is an inflammation of the brain, most commonly caused by a viral infection such as West Nile virus. Brain inflammation can also be the result of a bacterial infection. Mild cases can result in flu-like symptoms. More serious cases can cause severe headache, fever, vomiting, drowsiness, confusion and seizures.
Years ago Butler, who loves history, was paging through a book on famous neurologists when he happened upon Constantin Von Economo, a professor at the University of Vienna in the Psychiatric-Neurological Clinic who graduated from the Vienna Medical School and became a doctor in 1901.
Von Economo was the first to describe what he called “encephalitis lethargica,” which occurred in global-pandemic numbers (an estimated 5 million people) between 1916 and 1927 around the world. Von Economo first saw seven patients with the illness in Vienna in the winter of 1916-1917 and after studying it for 10 years, eventually divided it into three categories.
The first was a somnolent form with fever and chills that sometimes ended in stupor, coma and death. The second was a hyperkinetic form with twitching, jerking, anxiety, delirium, visual hallucinations, violent outbursts and sleep inversion, with sleeplessness at night and super sleepiness during the day. The third was called “amyotatic-akinetic form,” with rigidity, slow movement, backwards stepping, depression and mutism.
Butler perceived symptoms of all three forms in Jarrod. “He could stand up but we had to protect him from himself,” said Butler, who saw Jarrod at Children’s Memorial Hermann Hospital. “I predicted that it would have to run its course for two or three months, based on my experience."
Of those affected during the 1916-1927 pandemic of what some called the “sleeping sickness,” roughly a third died, another third developed post-encephalitic symptoms and a third recovered completely. But to this day, no one knows what causes it or why. After the last outbreak, it has not appeared in epidemic numbers again.
One study, published in Brain in 2004, reviewed 20 patients physicians had recently seen who had symptoms similar to Von Economo’s encephalitis. The authors theorize that streptococcal infection may play a role, as well as unknown environmental triggers. In trying to fight the infection, the body mistakenly attacks deep gray matter neurons found in the basal ganglia and mid-brain structures, resulting in the disorder.
One early MRI showed subtle abnormalities over the right temporal area in Jarrod’s brain, but those changes were not apparent on subsequent neurological imaging. An EEG showed slowing in brain activity in the right temporal area of Jarrod’s brain, Butler said.
There is no clear treatment – although, according to the National Institute of Neurological Disorders and Stroke (NINDS), levodopa and other anti-Parkinsonian drugs often help. Some patients have responded positively to steroids.
None of this was much comfort for Louise and Earl Payne, who watched their son continue to have seizure-like symptoms and a complete change of personality despite being placed on levodopa and other medications to control symptoms.
“It was a very challenging test of my faith to stand firm in the face of such an opposition, seeing our first-borne going through this rare, complicated medical illness,” Earl Payne said. As a father seeing his academically achieving, athletic son sort of decaying in front of his eyes was “heartbreaking and devastating.”
Butler understood their frustration.
“He had a fluctuating neurological picture. One day it would be this and one day that and he was just sort of out of it, like not with the program,” Butler said. “Five years ago, I had seen a child with similar symptoms and over the last several years, I’ve seen seven cases.”
Butler was left trying to explain that there wasn’t a lot they could do except wait it out and treat the symptoms. “We try to not use psychotropic drugs because of the side effects. We put the child in a protective environment,” Butler said. “It’s a waiting game.”
There would be periods when Jarrod wouldn’t sleep for several days and the agitation would get worse. Other times, doctors had trouble waking him up.
Jarrod remembers some things, such as struggling against his constraints, staying up for three days one time, and people visiting his room. But it was kind of like watching an out-of-body experience.
Louise looked for help from her deep faith. “If I had not been operating in the supernatural realm of great faith, believing that God would not leave him in such a state after all he had shown us including glimpses of healing signs of coherent moments, I could have lost my mind seeing my son in that state every day and wondering if that was what I would have to live with the rest of my life,” she said.
Jarrod’s last seizure-like episode was on October 14. Although he still had moments of agitation and stupor, by the end of October he was getting better each day. On November 14, Butler saw Jarrod for a follow-up and cleared him to go back to school the next day.
Jarrod and his parents returned to Butler for another follow-up appointment on May 4 and Butler gave him a clean bill of health. “It’s pretty unusual to have this good of an outcome considering how sick he was,” Butler said. “We’ve just scratched the surface in understanding this form of encephalitis.”
Jarrod finished his junior year with the rest of his class and passed his TAKS Exit Level exam. Aspirations of attending college and majoring in mechanical or computer engineering are back on track. This past spring, he worked as a trainer for the girls’ softball team and decided that his letter jacket would include the words “miracle child.” In Dave Campbell's 2007 Texas Football Magazine, the linebacker was listed as one of the players to watch on the Washington War Eagles football team.
When asked how to explain his successful outcome, he said, “Being blessed.”