Jordan McFarland, a high school athlete from Alexandria, Va., left Inova Fairfax Hospital for Children Tuesday night in a wheelchair nearly a week after developing severe headaches, muscle spasms and weakness in his legs following a swine flu shot. He will likely need the assistance of a walker for four to six weeks, plus extensive physical therapy.
“The doctor said I’ll recover fully, but it’s going to take some time,” the teenager said.
Jordan is among the first people in the nation to report developing the potentially life-threatening muscle disorder after receiving the H1N1 vaccine this fall. His alarming reaction was submitted via msnbc.com’s reader reporting tool, First Person, by his stepmother, Arlene Connin.
Increased cases of GBS were found in patients who received a 1976 swine flu vaccine, but government health officials say they’ve seen no rise in the condition associated with the current outbreak.
So far, the federal Centers for Disease Control and Prevention have received five reports of GBS in people who received the H1N1 vaccine since Oct. 6, not including Jordan’s case, said Dr. Claudia J. Vellozzi, deputy director for immunization safety.
Out of about 40 million doses of H1N1 vaccine available to date, that’s a far lower rate of GBS than the 1 case that develops in every 1 million people who receive the regular flu vaccine.
“It’s much less than we’d expect,” she said, adding that many cases go unreported.
In 1976, about 1 additional case of GBS developed in every 100,000 people who were vaccinated against the swine flu, according to the CDC.
Jordan’s parents said doctors diagnosed the teen with GBS, a rare muscle disorder that develops when a person’s own immune system attacks the nerves, causing muscle weakness, difficulty walking and sometimes paralysis and death.
Hospital officials didn’t dispute that the boy had GBS, but refused to comment on the boy’s condition or treatment, even after his family granted permission.
“They don’t want to create a fear or panic in the community,” said Jordan’s stepmother, Connin.
Connin and Jordan’s father, Calvin McFarland, both 38, believe the shot sparked the illness that came on 18 hours after the boy’s vaccination.
No clear link
But Vellozzi said there’s no clear link between the new vaccine and the disease.
“We know that GBS and other illnesses occur routinely in the U.S.,” Vellozzi said, noting that 80 to 120 cases are diagnosed each week in the general population.
“There are events that follow vaccination. That’s what they are, they happened to follow vaccination.
GBS is among the most severe adverse events being tracked with updated systems developed by the CDC, the Food and Drug Administration and the American Association of Neurology in order to monitor the rollout of the H1N1 flu vaccine.
So far, CDC officials have received about 1,700 reports of adverse events linked to the new shot, Vellozzi said. Of those, only about 4 percent, or 68, were coded as serious. That’s on par with reports regarding seasonal vaccine.
While any harmful side effect can be devastating for an individual, when it comes to larger public health issues, the H1N1 virus is considerably riskier than the vaccine, experts say.
“The H1N1 illness is making lots of children very ill,” Vellozzi said. “There’s lots of illness and lots of death.”
So far, more than 4,000 people have died from H1N1 infection in the U.S., according to latest estimates by the CDC.
Since the start of the H1N1 vaccine campaign, the CDC has repeatedly warned that certain conditions, such as miscarriage, heart attack and even GBS occur regardless of immunization, and officials have urged the public not to blame the vaccine for the illnesses, but to report promptly any suspected side effects.
As of early Wednesday, CDC officials said they had received no report from Inova Fairfax about Jordan’s condition. Later in the day, however, hospital spokesman Tony Raker indicated the hospital had submitted the report.
After hearing about Jordan’s case from msnbc.com, CDC officials advised the family to report Jordan’s case themselves.
Vaccine critic Barbara Lowe Fisher, president of the National Vaccine Information Center in Vienna, Va., said assuming all potential side effects are coincidence is a mistake. Such an attitude is likely to prevent doctors and other health workers from reporting adverse events in a timely manner, obscuring a true picture of any problems.
Fisher said only between 1 percent and 10 percent of adverse events are reported to the government’s Vaccine Adverse Event Reporting System, which was set up to track problems with vaccines. A 1986 law requires reporting of certain adverse events to VAERS, but there are no sanctions for not reporting, Fisher noted. CDC officials said general reporting to VAERS is voluntary.
Fisher said she suspects that many more cases of GBS have occurred in the wake of the H1N1 vaccines.
“We basically have people blowing it off,” she said. “We need to make sure people are reporting.”
Eager for protection
Like many parents across the country, Arlene Connin said she was eager to protect Jordan and his brother, Lleyton, 7, against the flu. When she took the boys to their pediatrician for seasonal flu shots on Nov. 5, the provider said H1N1 vaccine was available, too.
There was “not even a thought,” that either boy would have a reaction, Connin said. Within hours, however, Jordan developed severe headaches, chills and back spasms. The family rushed him to the closest hospital, Dewitt Army Community Hospital, where doctors conducted neurological exams, a CT scan and an EKG test.
The small hospital didn’t have the facilities to diagnose or treat Jordan’s illness, so he was transferred by ambulance on Nov. 6 to Inova Fairfax Hospital in Falls Church, Va., a spokesman said. Doctors there quickly gave Jordan intravenous immunoglobulin, a standard treatment for GBS, Connin said.
“GBS, that’s the diagnosis they gave us and that’s how they were treating him,” Connin said.
A hospital spokesman, Tony Raker, declined further comment on Jordan’s case. When an msnbc.com photographer asked to view Jordan’s chart, even with his father’s permission, hospital officials refused.
Doctors are reluctant to discuss GBS in connection with vaccines, Connin said. Anti-vaccine groups frequently cite the disorder as evidence of vaccine dangers, which public health officials fear will discourage people from getting life-saving protection, especially in the case of H1N1.
Jordan’s experience has made his parents think hard about immunization, even though they’ve always insisted on annual flu shots. Under CDC guidelines for children 9 and younger, Lleyton should receive another booster shot of H1N1 vaccine to protect him fully against the virus.
“I have mixed emotions on that one,” Calvin McFarland, the boys’ father, said. “We’re not sure what we’re going to do about that.”