PANDAS disease triggered by strep throat can attack the brain and cause psychiatric problems in children.
But many of these children have been misdiagnosed because some doctors are not aware of it.
PANDAS was discovered fairly recently by a doctor with National Institutes of Health who was studying obsessive compulsive disorder in children. The good thing is that it's completely treatable, but only if your children's doctor knows what it is.
The symptoms are bizarre and frightening. A video shows an older child babbling, and another one pacing. Six-year-old Greta who was strapped to a hospital bed, whines and writhes before screaming "I can't breathe!" Then she slaps her mother. Her parents had no idea what was wrong.
"Over the course of a few months it got worse and worse. Extreme behavior regression. Inability to speak at times and inability to hold her bladder and inability to swallow. Reverting, yes. Becoming like a young child from the age of 6 at this point. Acting more like a baby," said Greta's mother, JC Konecny, the executive director of the PANDAS Network.
Greta's Pediatrian in Charlotte couldn't figure it out. The child was undiagnosed and untreated for 18 months. Other families have had similar experiences. Now, the new film 'My Kid is Not Crazy - Hope in the Face of Misdiagnosis' produced by the PANDAS Network hopes to spread awareness.
Dr. Susan Swedo, the Chief Pediatrics & Developmental Neuroscience at the National Institute of Mental Health, discovered PANDAS, an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.
In the film, Dr. Swedo shames doctors who ignore the illness.
"You have a choice between a throat culture and treating it when positive or consigning a child to an entire lifetime of mental illness? Yes, I think that's irresponsible," said Dr. Swedo.
Genemarie Pade of McLean had no idea her 10-year-old son's problems were triggered by strep until she found the NIH website.
"Symptoms of PANDAS: Sudden onset of OCD, separation anxiety, determination in handwriting, deterioration in math skills, age regression emotional ability. He had every single one. It shocked me," said Pade.
Her son, now 14, received treatment and was cured. So was Greta.
"She had the tonsillectomy here at Georgetown and then received IVIG therapy, which is an immunoglobulin therapy that helps to reset the Immune system. Because that's really what's going on in PANDAS: the immune system is attacking the brain," said Konecny.
Konecny and her family are in town for a gala fundraiser and special screening of 'My Kid is Not Crazy.' The event is Wednesday evening at the Kennedy Center and WUSA9 reporter Peggy Fox is the emcee.
