Can common bacteria cause mental illness in children?
A small group of parents in the St. Louis area say their children's sudden obsessive behavior, insomnia, severe mood swings and tics all started with strep throat.
At a support group meeting Wednesday night in Chesterfield, 16 family members shared similar stories of frightening symptoms, doubting doctors, tortured siblings and finally, the relief of diagnosis.
A serious condition with a sweet-sounding acronym, pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections — or PANDAS — describes an unknown number of children with a range of psychiatric symptoms after a bacterial infection known to cause sore throats.
The disorders are recognized by the National Institute of Mental Health, although their exact cause, prevalence and appropriate treatment remain the subject of debate.
Dr. Sean Goretzke, a neurologist at Cardinal Glennon Children's Medical Center, isn't sure he has ever encountered a patient with PANDAS.
"I do believe that the entity does exist, although I think it's very rare," Goretzke said. "I think it's been overreported and overdiagnosed."
Some parents have taken children out of state to seek a PANDAS diagnosis and prescriptions for antibiotics, which are not recommended for neurological symptoms but which parents credit with helping children improve.
Kids like Robby Bauer, 15, of Ballwin, who went from a nonfunctioning junior high dropout to captain of the freshman football team at De Smet high school.
Lori Suthar, an occupational therapist, said her son's diagnosis came as a blessing after years of doctor visits and unanswered questions. At age 4, Joshua started impulsively looking over his shoulder and seemed not quite right, she said.
His father, Dr. Manish Suthar, a pain specialist, thought Joshua should see a child psychologist and speech therapist, who noted the child's obsessive behavior. The tics got progressively worse and grew to include eye rolling, mouth clicking and other involuntary sounds and movements.
A neurologist prescribed Zoloft, an anti-depressant that is used to treat obsessive-compulsive disorder. The Suthars got a second opinion from a psychiatrist, who diagnosed Joshua with anxiety and OCD and increased the Zoloft dosage. When Joshua's symptoms worsened, he was diagnosed with attention deficit hyperactivity disorder and prescribed another drug.
At one point, Joshua developed a rash and was put on antibiotics. His other symptoms improved, too, and his parents thought the psychiatric drugs were working.
But the aggression returned, and by the time Joshua turned 6, he had created a firestorm in their Chesterfield home with his near-constant tics, hallucinations and violent behavior.
Lori Suthar found out about PANDAS through her research.
A pediatrician agreed to take a strep culture, which showed Joshua had been infected with the bacteria, although he had no physical symptoms.
After a few days of antibiotic treatment, "our house was calm and quiet," Suthar said.
Still, local doctors whom the Suthars declined to name were skeptical. Joshua was diagnosed with PANDAS by a Chicago pediatrician, Dr. Miroslav Kovacevic.
"Over the past five to six years the knowledge started among the parents first and has been forcing the doctors to look into it," said Kovacevic, who said he has diagnosed PANDAS in about 400 children, mostly from outside Illinois.
Joshua, now 8, has received a five-month regimen of high-dose antibiotics, three infusions to replace strep antibodies in his blood and takes a daily antibiotic as a preventive measure.
"He's happy. He has a lot more self-confidence," Suthar said. "He feels like he got his life back. If you knew him, you'd believe."
NO SPECIFIC TEST
A connection between bacterial infections and some mental illnesses has been established. To fight infections, the body produces antibodies that also can attack healthy cells.
In rheumatic fever, which also is triggered by strep throat, antibodies can inflame the basal ganglia, a part of the brain associated with movement and behavior. Patients can then develop a movement disorder called Sydenham's chorea.
The same process is thought to happen in PANDAS, which was first identified in the mid-1990s.
In a subgroup of children whose antibodies to strep infections seem to misfire, symptoms that can include obsessive-compulsive disorder, separation anxiety, insomnia and a decrease in motor skills appear almost overnight. The symptoms can linger for months and worsen if the child catches another infection.
There is no specific lab test for PANDAS. That makes it difficult to know which behaviors might be linked to strep, and which have genetic or other causes and would have appeared anyway.
Disorders involving involuntary sounds and movements, such as Tourette syndrome, are almost always diagnosed in early childhood, the same age when strep infections are almost universal. And it's already known that stress to the body, through infection or otherwise, can exacerbate tics. It's also known that a significant percentage of children will outgrow their tics.
Some doctors say they worry that desperate parents of children with neurological disorders, including autism, will find hope in a "cure" that may not exist for their child. Another concern is an overuse of antibiotics.
A handful of children diagnosed with PANDAS have received immunoglobulin transfusions at Mercy Hospital St. Louis. The treatments are typically used to treat people with immune system deficiencies.
"We only treat (PANDAS patients) when somebody else makes the diagnosis," said Dr. Robert Bergamini, a Mercy pediatric oncologist.
Bergamini doesn't evaluate the symptoms but said their families report improvements.
"We will always say, 'We're very glad that you see a difference. You need to take your child to the person who made the diagnosis. Somebody in this specialty should put some measurement on that.'"
Some health insurance companies including United and Anthem have covered treatments for kids diagnosed with PANDAS, Bergamini said.
The National Institute for Mental Health recommends that children diagnosed with PANDAS be treated the same as other children with obsessive-compulsive or tic disorders — with behavior therapy and/or psychiatric drugs including anti-depressants.
Parents say their kids' dramatic improvement after antibiotics and immunoglobulin treatments is proof enough the cause is strep.
Health officials recently ruled out PANDAS as the cause of tics and outbursts among at least 12 girls in the same high school in Le Roy, N.Y. The prevailing theory is the girls have conversion disorder, which manifests as real neurological symptoms and is linked to stress but has no physical explanation. Media attention on the girls has raised awareness of PANDAS, and local doctors said they have gotten more inquiries.
Dr. Bradley Schlaggar, a neurologist at St. Louis Children's Hospital who has researched PANDAS, said he worries a renewed focus on the disorders might discourage some doctors and parents from pursuing other explanations for symptoms.
"I've seen kids on five, six different antibiotics for what is clearly Tourette syndrome that is not strep-triggered, and that's a problem," Schlaggar said.
Neuroscientists are working to update the definition of PANDAS. More research is under way to see whether immunoglobulin therapy can help. Another study is looking at whether long-term antibiotic therapy can prevent flare-ups of neurological symptoms.
The support group families say they can't wait for the research to catch up. They believe there are more kids who need help. Lori Suthar, who wrote a book about her experience, wants other parents to avoid what her family endured.
"We would have saved a couple of years of his life," she said.