Children with neurologic disorders at high risk of death from flu

Health care and advocacy groups join to protect children most vulnerable to influenza

A disproportionately high number of children with neurologic disorders died from influenza-related complications during the 2009 H1N1 pandemic, according to a study by scientists with the Centers for Disease Control and Prevention. The report in the journal Pediatrics underscores the importance of influenza vaccination to protect children with neurologic disorders. CDC is joining with the American Academy of Pediatrics, Families Fighting Flu and Family Voices to spread the message about the importance of influenza vaccination and treatment in these children.

The Pediatrics study looked at influenza-related deaths in children during the 2009 H1N1 pandemic based on data submitted to CDC from state and local health departments. The number of pediatric deaths associated with 2009 H1N1 virus infection reported to CDC during the pandemic was more than five times the median number of pediatric deaths that were reported in the five flu seasons prior to the pandemic. Sixty-eight percent of those deaths occurred in children with underlying medical conditions that increase the risk of serious flu complications.

Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1.

“We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Dr. Lyn Finelli, chief of the surveillance and outbreak response team in CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.” 

“Flu is particularly dangerous for people who may have trouble with muscle function, lung function or difficulty coughing, swallowing or clearing fluids from their airways,” said study coauthor and pediatrician Dr. Georgina Peacock. “These problems are sometimes experienced by children with neurologic disorders,” said Peacock, of CDC’s National Center on Birth Defects and Developmental Disabilities

The most commonly reported complications for children with neurologic disorders in this study were influenza-associated pneumonia and acute respiratory distress syndrome (ARDS). Seventy-five percent of children with a neurologic condition who died from 2009 H1N1 influenza-related infection also had an additional high risk condition that increased their risk for influenza complications, such as a pulmonary disorder, metabolic disorder, heart disease or a chromosomal abnormality.

CDC is partnering with the American Academy of Pediatrics and influenza advocacy groups to help promote awareness about the importance of influenza prevention and treatment in these high risk children. Since the H1N1 pandemic, children with neurologic conditions continue to represent a disproportionate number of influenza-associated pediatric deaths. CDC, the American Academy of Pediatrics (AAP), Family Voices, and Families Fighting Flu recognize the need to communicate with care takers about the potential for severe outcomes in these children if they are infected with flu.

“Partnering with the American Academy of Pediatrics, influenza advocacy groups and family led-organizations CAN help prevent influenza in children at highest risk,” said CDC Director Dr. Thomas R. Frieden.

The partnering organizations are working to coordinate communication activities with their constituents, which include parents and caregivers, primary care clinicians, developmental pediatricians and neurologists in hopes to increase awareness about flu prevention and treatment in children with neurologic disorders.

“The American Academy of Pediatrics, Families Fighting Flu and Family Voices were all natural partners when we thought about how to reach as many key people as possible with this message,” Dr. Peacock adds. “The collaboration and energy around this effort has been fabulous.”

“Our network of physicians is committed to influenza prevention in all children, and especially in reducing complications in those children at higher risk for experiencing severe outcomes as a result of influenza-like illness,” says Robert W. Block, M.D., president of the AAP. “This coalition can more broadly engage the entire community of child caregivers to express how serious flu can be for these children. These efforts emphasize why the medical home is so important for children and youth with special health care needs.”

Family Voices is a national family-led organization supporting families and their children with special health care needs. Ruth Walden, a parent of a child with special needs and president of the Family Voices Board of Directors, says, “It’s frightening to think that flu can potentially lead to so many complications or even death. We’re pleased to see organizations working together to educate families and providers about the importance of prevention.”  

Families Fighting Flu, an advocacy group dedicated to preventing influenza, has a long history of reaching out to families who’ve lost loved ones to flu. “Throughout the years we’ve seen firsthand how flu can affect these kids and their families’ lives. We understand that prevention is absolutely critical,” explains Laura Scott, executive director of Families Fighting Flu. “Working with other groups only expands our mission of keeping kids safe throughout the flu season.”

CDC recommends that everyone aged 6 months and older get an annual influenza vaccination, including people who are at high risk of developing serious complications. Flu vaccine is the best prevention method available. Antiviral drugs, which can treat flu illness, are a second line of defense against flu.

To learn more about influenza, visit www.cdc.gov/flu.

About American Academy of Pediatrics

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults. For more information, visit www.aap.org.

About Family Voices

Family Voices provides families with resources to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. There are Family Voices representatives in each state and territory across the country ready to assist you with issues related to the health care of a child or youth with a special need or disability. More information is available at www.familyvoices.org, or by calling 1-888-835-5669.

About Families Fighting Flu

Families Fighting Flu is a nonprofit, 501(c)(3) volunteer-based advocacy organization dedicated to protecting the lives of children. Our members include families whose children have suffered serious medical complications or died from influenza, as well as health care practitioners and advocates committed to flu prevention. In honor of our children, we work to increase awareness about the seriousness of the disease and to reduce the number of childhood hospitalizations and deaths caused by the flu each year by increasing vaccination rates. Families Fighting Flu offers support to other families and communities who have been severely affected by the flu through resources available at www.familiesfightingflu.org.

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U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

CDC works 24/7 saving lives and protecting people from health threats to have a more secure nation. Whether these threats are chronic or acute, manmade or natural, human error or deliberate attack, global or domestic, CDC is the U.S. health protection agency.