In 1998, Dr. Susan Swedo, a researcher at NIMH, first described in the scientific literature a subtype of OCD in which children demonstrated an abrupt onset of neuropsychiatric symptoms (OCD, tics, ADHD-like symptoms, anxiety) with a “saw-toothed” course, preceded by streptococcal infection. This syndrome was termed PANDAS, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In PANDAS, the body’s immune system is over-reactive to strep bacteria, leading to psychiatric and neurological symptoms. Dr. Swedo continued to study this subgroup and investigated potential therapies, including intravenous immunoglobulin (IVIG), plasmapheresis, and antibiotic prophylaxis to prevent symptom exacerbations. PANDAS remained a little known and debated diagnosis.
Dr. Swedo, and more recently, other researchers as well, have dedicated themselves to understanding this phenomenon.
Studies suggest that PANDAS occurs more frequently in boys (2:1). Most children affected by this disorder experience symptoms by 8 years of age. When OCD symptoms begin, they are sudden and dramatic and are typically accompanied by additional psychiatric and/or neurological symptoms.
There is strong evidence to support the immune system’s over-reactivity to bacterial infections, resulting in the production of neurological and behavioral symptoms. However, what exactly triggers symptoms in this subset of children with OCD remains unclear and may extend beyond group A streptococci to other infectious agents (Lyme, mycoplasma), environmental, or metabolic factors. In 2012, this syndrome’s description has been expanded to include these other potential triggers and has been named PANS, Pediatric Acute-onset Neuropsychiatric Syndrome. Proposed diagnostic criteria include:
- Abrupt, dramatic onset of OCD or severely restricted food intake
- Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following:
- Emotional lability and/or depression
- Irritability, aggression, and/or severe oppositional behaviors
- Behavioral (developmental) regression
- Deterioration in school performance
- Sensory or motor abnormalities
- Somatic signs and symptoms, including sleep disturbances, enuresis, or urinary frequency
- Symptoms are not better explained by a known neurological or medical disorder, such as Sydenham chorea, systematic lupus erythematosus, Tourette’s disorder or others
It is clear is that there is a subset of OCD in children and adolescents in which there is a very sudden and acute onset that is accompanied by additional neuropsychiatric symptoms. The course is then relapsing-remitting. In such cases, PANDAS/PANS should be considered in the differential diagnosis with appropriate history, physical, and laboratory studies such as a strep titer. Some physicians prescribe prophylactic (preventative) antibiotics to keep recurrent infections at bay. Current symptom treatments typically involve cognitive behavioral therapy (Exposure and Response Prevention for OCD, Habit Reversal/comprehensive behavior therapy for tics) and medication (selective serotonin reuptake inhibitors for OCD and anti-dopaminergic agents for tics). Family education and support is also very helpful, as these symptoms can be quite stressful on the child and his/her family.
So, if a child develops OCD or other unexpected neuropsychiatric symptoms seemingly overnight, get educated, explore all possible origins with your doctor, and contact a psychologist who has specialized training in the cognitive behavioral treatment of obsessive compulsive spectrum disorders. For more information about OCD and PANDAS/PANS, visit www.ocfoundation.org.
My first experience with PANDAS, in 2000, left such a profound impression on me. I look forward to sharing my experience with “Daniel” in a forthcoming post…