Since PANS and PANDAS often manifest initially with anxiety and traits associated with obsessive compulsive disorder (OCD), the tendency is to conclude that these conditions are the prevailing issue. However, when children are treated with medications typically prescribed for psychiatric conditions, rarely will these have any benefit in patients with PANS or PANDAS. And just as important, the wrong course of treatment can only further delay receiving an accurate diagnosis and thereby helping more patients and their families.
As with any disease, I believe we must first identify the root cause of the pathology in order to understand why and how these conditions started. What was the precipitating event after which the OCD, the anxiety, tics and other signs began? I always use the analogy of thinking of it as if your house was on fire…you’d have to put out the fire AND keep it from rekindling. But we cannot put out the fire, or tamp down neuroinflammation in the brain, if we don’t know how it started. And without the right approach and treatment protocols, there is risk of permanent damage and even complete destruction of the “house.”
Compounding the issue of diagnosing PANS and PANDAS is the significant increase in childhood mental health and anxiety disorders. A recent article from JAMA Psychiatry speaks to what constitutes its own epidemic, with anxiety disorders now considered to be the most prevalent of mental health conditions among our nation’s youth. It is estimated that more than 30% will experience an anxiety disorder by the time they reach age 18 years of age and roughly four out of five will never be treated. And for most of these young people, the problems will persist into adulthood.
The relationship of immune-mediated disorders and corresponding neuropsychiatric issues was represented in the extensive and lengthy study “Association of Primary Humoral Immunodeficiencies (PIDs) With Psychiatric Disorders and Suicidal Behavior and the Role of Autoimmune Diseases.” PIDs are defined as deficiencies of the immune system, mainly dysfunction of antibody production, and are associated with adverse health problems, such as recurrent infections and autoimmune diseases.1
Researchers in Sweden conducted the population-based cohort study with over 8,300 participants following an initial cohort numbering many more individuals; the study hypothesized that disrupted immune function is implicated in the pathophysiology of psychiatric disorders as well as suicide although there is little known about the underlying mechanisms. Investigators noted that “immune disruption may be etiologically important in psychiatric disorders through a range of mechanisms, such as altered neurodevelopment, postinfectious priming of microglia, or microbial dysbiosis.” Objectives then were designed to establish whether PIDs that affect antibody function and level are associated with lifetime psychiatric disorders and suicidal behavior and if this association could be explained by the co-occurrence of autoimmune diseases.
You can read more here regarding the multiple methods of analyses for determining the results, but the researchers concluded that PIDs “were robustly associated with psychopathology and suicidal behavior, particularly in women.” They went on to state that these associations could not be fully explained by co-occurring autoimmune diseases, suggesting that antibody dysfunction may play a role, although other mechanisms are possible. Individuals with both PID and autoimmune disease had the highest risk of psychiatric disorders and suicide, indicating a possible additive effect as well; it was recommended that future studies explore the underlying mechanisms of these associations.
The significance of this as well as other studies are the implications that a lifetime of PID and autoimmune issues associated with PANS and PANDAS has for our patients’ futures. We have written extensively about these disorders and most recently some new research that brought the conditions out of the shadows of mental illness, clearly showing there are physiological mechanisms at work behind a “brain on fire” that stress (and anxiety) only exacerbate. But, anxiety is typically experienced concurrently in PANS and PANDAS so it’s extraordinarily important to distinguish whether the anxiety is the primary issue or a symptom of something else – and whether the usual psychiatric medicines prescribed for anxiety will cause more harm than not.
It’s important to note that although PID has these strong associations, we are all living in an era of highly dysregulated immune function. I believe that this undiagnosed or underlying immune dysregulation is being fueled by the perfect storm of toxic environmental factors, high levels of stress, unresolved trauma, electromagnetic frequencies, (EMFs), transgenerational trauma, poor dietary habits, and so many (many) other things that are now part of everyday life – and of which we are often unaware, but need to take heed! It is not just one thing we can point to as being responsible. Nor is it our “genes” or genetics that have changed over the last three to four decades (they haven’t). It is epigenetics, the way we live and the effects of the environment that is driving humanity to its knees. Having a PID is NOT the only predictor or influence as far as getting sick – unfortunately, we are all subject to it.
There is a great need for parents, educators, practitioners and the community at large to truly understand more about PANS and PANDAS and the distinctive hallmarks as well as the immune dysfunction that contributes to these disorders. And there is an equally enormous need to unravel the mysteries behind the mounting increase in childhood anxiety and mental health issues in order to appropriately assess and treat each of the conditions. We will be discussing in upcoming blogs the role of anti-neuronal antibodies and the vital importance of restoring the blood-brain barrier so please continue to check back regularly for additional information.
As always, if we can help or answer questions we are here for you via telemedicine or in-person appointments so don’t hesitate to contact our offices to schedule a visit.
In hope and healing,
Dr. Suzanne Gazda
1 Isung J, Williams K, Isomura K, et al. Association of Primary Humoral Immunodeficiencies With Psychiatric Disorders and Suicidal Behavior and the Role of Autoimmune Diseases. JAMA Psychiatry. Published online June 10, 2020. doi:10.1001/jamapsychiatry.2020.1260