July 20, 2018
Strep throat is a bacterial infection, most commonly associated with sore throat in children. In most cases, it can be effectively treated with antibiotics. But strep can also lead to serious psychological and neurological complications known as pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, or PANDAS.
A special report on ABC’s news magazine 20/20 airing tonight profiles three families coping with the devastating effects of PANDAS.
‘Out of the Blue’
According to the National Institute of Mental Health (NIMH), symptoms of PANDAS can happen “overnight and out of the blue.” They include vocal and physical tics, anxiety, and obsessive-compulsive disorder (OCD). Children may also show signs of anger and even violence.
“Many times the symptoms can be relatively mild, so the child just has some behavioral regression. They start acting a little young for their age, maybe they are a little more clingy or whiny, but that resolves in a few weeks,” says Susan Swedo, MD, the chief of the pediatrics and developmental neuroscience branch at the National Institute for Mental Health in Bethesda, Maryland.
“The symptoms, however, can be quite extreme,” Dr. Swedo says. “A child can go from being an A student to suddenly crawling around on the floor, talking baby talk, playing with an infant sibling’s toys, sleeping in a parent’s bed, spending hours and hours doing compulsive rituals, and having extreme anxiety.”
The Strep-PANDAS Connection
Caused by the bacteria Streptococcus pyogenes (group A strep), strep throat is spread by contact with secretions from an infected person’s respiratory tract when that person coughs or sneezes. It mostly affects children ages 5 to 15, but anyone can get it.
When a child has strep throat, his or her immune system produces antibodies to fight the strep bacteria. But in the case of PANDAS, these antibodies can also attack molecules in the brain.
Diagnosing PANDAS is not without controversy, and some medical experts question whether it’s a real disease related to strep.
According to Stanford T. Shulman, MD, a professor of pediatrics at Northwestern University in Chicago, “the best scientific studies that have been done have not been able to confirm that strep is related to these behavioral abnormalities.”
RELATED: What You Should Know About PANDAS
Uncommon and Severe
Few children who get strep throat develop PANDAS symptoms.
Swedo, who was on the research team that first identified PANDAS, in a 1994 paper published in the journal Pediatrics, estimates that two-thirds to three-quarters of grade-school-age children have a strep throat infection every year; but only as few as 1 in 500 will have the post-strep reaction that manifests as PANDAS.
Still, Steven Schlozman, MD, the codirector of the Clay Center for Young Healthy Minds at Massachusetts General Hospital (MGH) in Boston, says parents should look out for any signs of PANDAS. He points out that one of the defining characteristics of the syndrome is how quickly it appears.
“It’s not the severity of the disease but the rapid onset of the psychiatric symptoms that should bring to mind the possibility that there’s an autoimmune response to an infection with strep,” says Dr. Schlozman. “You may see this sudden onset of tics that are vocal or movement-related, like flicking a middle finger.”
According to Swedo, other warning signs include sleep disturbances, increased urinary frequency, and dilated pupils.
Profiles of Children With PANDAS
The 20/20 report profiles three children whose brush with strep led to dramatic changes in their behavior and many unanswered questions about the underlying cause and possible treatment:
- Fourth grader Parker Barnes, from Prior Lake, Minnesota, suddenly became anxious, depressed, and occasionally violent. One day, Parker was found in a trance, holding a knife in his hand.
- Nine-year-old Kathryn Ulicki from Cheshire, Connecticut, developed extreme paranoia, believing that she was allergic to anything that she swallowed.
- Four-year-old Alexia Baier from Montgomery, Illinois, after treatment for strep, became angry overnight and violently attacked her mother.
“When interviewing families impacted by PANDAS, we saw kids in various levels of distress,” says ABC News’s Juju Chang. “Their symptoms ranged from rages to depression, crippling anxiety to disturbing convulsions.”
Can PANDAS Be Treated?
Swedo says that diagnosing and treating strep infections with antibiotics early on can reduce the risk of developing PANDAS.
“My advice for any parent who has any suspicion that their child may have strep is to get a throat culture — not just a rapid strep test, because that misses about 15 to 20 percent of the cases,” says Swedo. “This can help prevent PANDAS, rheumatic fever, and other post-strep complications like arthritis and kidney disease.”
Besides treatment with antibiotics, Chang says, “the families I spoke with believe these kids also need to have treatments of dual tracks and that cognitive behavioral therapy is key to overcoming some of their symptoms. Even if their condition was triggered by a virus, they believe the fix is not in a pill alone.”
In some cases, PANDAS patients may need psychiatric treatments, behavior therapy, and medications.
Schlozman says that extreme cases may require plasmapheresis, a process that removes harmful antibodies from the blood. Research suggests that patients with PANDAS can also benefit from intravenous immunoglobulin (IVIG) treatment.
The ABC News report airs tonight on 20/20 at 10 p.m. EDT.