October 14, 2022
What are PANDAS?
By: Christin Sammons, LLP, Rachel Piper, LMSW, & Suzi Naguib, Psy.D
Overview
As with many psychological disorders, the cause of obsessive-compulsive disorder (OCD) is not fully understood. Understanding the sudden onset of OCD symptoms and tic disorder in children has been of particular interest within the field of mental health. One suggested cause of OCD and tics in children, specifically when the symptoms begin abruptly or there is a dramatic exacerbation in such symptoms, is that the onset may be triggered by the strep throat infection in individuals. Dr. Swedo and her colleagues first described such a disorder in 1998 and subsequently coined the term ‘PANDAS’, which stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (Jaspers-Fayer et al., 2017). Dr. Swedo and her colleagues proposed that a child could be experiencing PANDAS if:
OCD or Tic disorder is present
The onset was between 3-years of age and puberty
The onset of symptoms was abrupt or present symptoms suddenly worsened
There was a confirmed strep throat infection (more formally, a Group A Streptococcus Infection)
There are other neuropsychiatric symptoms (i.e., hyperactivity and sensory issues; Jaspers-Fayer et al., 2017).
It should be noted that a strep infection alone is not the proposed cause of PANDAS, rather, it is the body’s reaction to the infection (PANDAS Network). The antibodies in the body overreact to the infection and attack the brain; this is the proposed cause of PANDAS (PANDAS Network). Despite sounding straight-forward, PANDAS is controversial and a topic of significant debate between neurologists and psychiatrists (Jaspers-Fayer et al., 2017). This is partially due to the fact that PANDAS is difficult to diagnose based on the onset/worsening of OCD symptoms in children because the strep infection is only indicated on a strep test for approximately 2 weeks (PANDAS Network).
Controversy
PANDAS are controversial in the mental health and medical field because the research is mixed on whether or not the strep virus is in fact the cause of the sudden onset of OCD or tic symptoms in the pediatric population. Some of the literature that supports PANDAS has found high rates of Strep infections and other immune-mediated diseases in individuals with childhood-onset OCD (Westwell-Roper et al., 2019). A population-based cohort study in Denmark reported a higher likelihood of OCD and tics after a strep infection (Orlovska et al., 2017). Other research supports PANDAS by finding that individuals meeting the criteria had more inflammation from the antibodies in their brains than individuals with primary OCD (Atwell et al., 2017; Pearlman et al., 2014). In studies conducted with mice, researchers have transferred antibodies present in PANDAS mice into healthy mice (Yaddanpudi et al., 2010). The newly infected mice began to act like the PANDAS mice, demonstrating a correlation between these antibodies and the behavior of mice (Yaddanpudi et al., 2010).
Conversely, multiple studies have found no connection between symptom worsening and the strep infection in individuals who already had OCD, a tic disorder, or Tourette syndrome (Lou et al., 2011; Martino et al., 2011). A group of individuals that met criteria for PANDAS did not experience symptom exacerbation following a strep infection (Leckman et al., 2011). In a separate study, 75% of the individuals that met the criteria of PANDAS and had experienced a significant worsening of symptoms, did not have a strep infection (Kurlan, Johnson, & Kaplan, 2008). Overall, this data demonstrates that strep infections have not conclusively been shown to be a strong indicator of worsening symptoms. Although the literature has indicated some presence, there also seems to be other factors that are tied to the onset or exacerbation of OCD symptoms. As of now, PANDAS is not a disorder listed in the DSM-V because there is not enough evidence to support its inclusion in the manual.
Treatment
Since PANDAS are controversial, treatment for PANDAS is divided as well. Since the presentation of OCD can look different in all children, treatment should be tailored to each child’s individual needs (Thienemann et al., 2017). Some of the many PANDAS treatments include antibiotics, prophylactic antibiotics, intravenous immunoglobulin (IVIG), steroids, Ibuprofen, probiotics, and cognitive-behavioral therapy (PANDAS Network). There is some evidence that steroids, antibiotics (used up to 6-weeks), prophylactic antibiotics (used consistently to prevent future strep infections), as well as IVIG (receiving antibodies from blood donors) have been effective in reducing symptom severity (Frankovich et al., 2017). In 2016, however, one study did not find a significant OCD symptom reduction in individuals that used IVIG opposed to those given a placebo (Williams et al., 2016). Many physicians also fear that using antibiotics frequently may lead to drug-resistant germs and also create an imbalance of healthy bacteria within the body (Stewart & Murphy, 2010). All to say, experts recommend IVIG, steroids, and antibiotics only to children with extremely severe OCD symptomatology that can be traced to recurrent infections (Frankovich et al., 2017). Before attempting to use any of these treatment modalities, it is important to speak with your child’s pediatrician.
Encouragingly, treatments such as CBT and parent management have shown to be the most effective interventions for pediatric OCD, regardless of the reason for symptom onset (Thienemann et al., 2017). Psychoactive medications are helpful for treating OCD symptoms in this population as well, but prescribing clinicians are advised to start with low doses to monitor potential side effects (Thienemann et al., 2017).
Take Home
PANDAS is difficult to diagnose based on the onset/worsening of OCD symptoms in children because the strep infection is only indicated on a strep test for approximately 2 weeks (PANDAS Network).
Asking your pediatrician about the possibility of PANDAS is permissible and they can perform a strep test. It is likely that the pediatrician will recommend treatment from a mental health professional and/or the use of psychoactive medications rather than more medicinal measures (i.e., IVIG).
If you recognize OCD symptoms in your child, we recommend making an appointment with your pediatrician or a mental health provider as early intervention has been shown to improve symptoms and reduce impairments (Thienemann et al., 2017).
References
Frankovich, J., Swedo, S., Murphy, T., Dale, R., Agalliu, D., Williams, K… PANS/PANDAS Consortium (2017). Clinical management of pediatric acute- onset neuropsychiatric syndrome: Part II – use of immunomodulatory therapies. Journal of Child and Adolescent Psychopharmacology, 27 (7), 1-16.
Jaspers-Fayer, F., Han, S., Chan, E., McKenney, K., Simpson, A., Boyle, A… Stewart, E. (2017). Prevalence of acute-onset subtypes in pediatric obsessive- compulsive. disorder. Journal of Child and Adolescent Psychopharmacology, 27(4),332-341.
Kurlan, R., Johnson, D., Kaplan, E., & Tourette Syndrome Study Group (2008). Streptococcal infection and exacerbations of childhood tics and obsessive- compulsive symptoms: A prospective blinded cohort study. Pediatrics, 121(6), 1188-1197. doi:10.1542/peds.2007-2657
Leckman, J., King, R., Gilbert, D., Coffey, B., Singer, H., Dure, L. S.,. . . Kaplan, E. (2011). Streptococcal upper respiratory tract infections and exacerbations of tic and obsessive-compulsive symptoms: A prospective longitudinal study. Journal of the American Academy of Child & Adolescent Psychiatry, 50(2),108-118. doi:10.1016/j.jaac.2010.10.011
PANDAS network (n.a.) About PANDAS, PANS, and AE. Retrieved from http://pandasnetwork.org/medical-information/
Stewart, E., & Murphy, T. (2010). PANDAS fact sheet. International OCD Foundation. Retrieved from http://www.ocdfoundation.org
Thienemann, M., Murphy, T., Leckman, J., Shaw, R., Williams, K., Kapphahn, C… Swedo, S. (2017). Clinical management of pediatric acute-onset neuropsychiatric syndrome: Part I – psychiatric and behavioral interventions. Journal of Child and Adolescent Psychopharmacology, 27(7), 1-8.
Westwell-Roper, C., Williams, K., Samuels, J., Bienvenu, O., Cullen, B., Goes, F… Steward, E. (2019). Journal of Child and Adolescent Psychopharmacology, 1-10.
Williams, K., Swedo, S., Farmer, C., Grantz, H., Grant, P., D’Souza, P…, Leckman, J. (2016). Randomized, controlled trial of intravenous immunoglobulin for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of the American Academy of Child and Adolescent Psychiatry, 55, 860–867.
Yaddanapudi, K., Hornig, M., Serge, R., De Miranda, J., Baghban, Al, Villar, G. & Lipkin, W. (2010). Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection. Molecular Psychiatry, 15,712-726.