What this significant research* provides is the clinical science that clearly shows us the physiological mechanisms at work behind the damage to the brain itself in PANS and PANDAS patients. The implications are huge relevant to shifting perceptions about these conditions in order to better identify the most appropriate treatments and enhance diagnostic procedures in order to improve the quality of life for the individuals in our care.
A few facts.
PANS (pediatric acute-onset neuropsychiatric syndrome) and PANDAS are infection-induced autoimmune conditions that disrupt a patient’s normal neurologic functioning, resulting in a sudden onset of obsessive compulsive disorder (OCD) and/or motor tics as well as a host of other life-altering symptoms including:
• anorexia (food restriction/failure to eat)
• anxiety; irritability and outbursts
• sleep disturbances
• mood swings
• large and small motor skill dysfunction
• urinary frequency and additional issues.
While typically associated with children, these disorders also can occur in adults. It is estimated that 1 in 150 children, up to age 18, may have PANS or PANDAS although these figures are likely to vastly underrepresent the true incidence as so many cases often go misdiagnosed for years. The PANDAS Network (http://pandasnetwork.org/statistics/) indicates that the age of onset (self-reported) is:
1 to 3 years - 11%
4 to 9 years - 69%
10 to 13 years - 19%
14+ years - 1%
In PANS and PANDAS it is hypothesized that in response to an infection, the immune system essentially becomes confused as to how it should respond. As I have discussed in previous blogs, this miscommunication in the brain may be related to something called “immune tolerance” whereby our immune systems have become overwhelmed from the endless assault by the extremely toxic environment in which we live. Subsequently, cross-reactivity develops and causes the body to attack the brain (https://www.suzannegazdamd.com/blog/what-causes-our-body-to-attack-the-mind) through misguided signals and responses to antibodies and autoantibodies.
What the new study showed and why IVIG should be considered in treatment protocols.
Significant too was the finding that in cohort participants receiving IVIg (intravenous immunoglobulin) the binding of interneurons was decreased. This latest research used serum (the part of our blood that contains antibodies) from seven children diagnosed with PANDAS who recently took part in an IVIG treatment trial at the National Institute for Mental Health. They introduced this serum into the brains of laboratory mice; they also for comparison introduced serum from healthy children who did not have PANDAS into the brains of a different group of mice. The brains of the mice in both groups were examined to determine which of the cells bound with the antibodies. They then repeated this experiment using serum taken after the children with PANDAS had undergone IVIG treatment in order to see if IVIG treatment changed the way that the antibodies interacted with the brain.
The PANDAS children had high levels of antibody attachment in the basal ganglia to cholinergic neurons and those treated with IVIG had reduced antibody bindings, suggesting that IVIG is a potentially very effective treatment due to this therapy’s multiple mechanisms of action. I have detailed in other articles https://www.suzannegazdamd.com/blog/ivig-in-autoimmune-disease-therapies how these mechanisms in IVIg work and the relationship as well as the importance of the brain’s basal ganglia for movement, coordination, behavior control, memory, development of tics, OCD, anxiety and more. While the new research bears additional investigation, it does indicate that IVIg holds great promise as a means of intervening in the harmful mechanisms that contribute to PANS and PANDAS conditions.
The changing paradigms and out of the shadows of mental illness.
Dr. Susan Swedo at the National Institutes of Mental Health (NIMH) first reported on PANDAS in 1998. Since that time a tremendous amount of data has been accumulated, but we know that more research must be initiated in order to best help the patients as well as their families. It is imperative that PANDAS and PANS cease to be considered a “rare” disorder and that these children as well as adults are no longer misdiagnosed.
There clearly is mounting evidence that tells us a very large subset of mental illness, including schizophrenia, bipolar disorders, depression and others, is immune-mediated and related to inflammation. The time has come to change the conversation about the origins of many neuropsychiatric diseases to one that is centered on the immune-driven mechanisms. Only then we can identify the most appropriate, safe treatments targeted toward this dysregulated immune system that fueling systemic and neuro-inflammation and “brain on fire.” With early recognition and the right integrative medicine protocols, I believe we truly can help the many individuals suffering with PANS, PANDAS and related autoimmune encephalopathy conditions to achieve positive outcomes through treatment.
In hope and healing,
Dr. Suzanne Gazda
2020 appointee, State of Texas PANS Advisory Council
References and additional reading:
*Xu, J.; Liu, R.; Fahey, S.; Swedo, S. et al. (2020). Antibodies From Children With PANDAS Bind Specifically to Striatal Cholinergic Interneurons and Alter Their Activity. American Journal of Psychiatry. https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.19070698
Leonard B. E. (2010). The concept of depression as a dysfunction of the immune system. Current immunology reviews, 6(3), 205–212. https://doi.org/10.2174/157339510791823835
Swedo, S. et al. (1998). Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections: Clinical Description of the First 50 Cases. American Journal of Psychiatry.
Alan Keith Scotland
6/26/2020 10:06:35 am
This is a great relief now for mercy sake we need full scale intervention . Thank you for your clarity passion and sincere endeavour. A concerned grandfather for a troubled beautiful shrank child .
6/26/2020 09:07:00 pm
Very easy to understand....
6/27/2020 07:10:30 am
My daughter with Hashimotos encephalopathy/possible PANS (diagnosis was difficult) did three years of IVIG and it worked! She has residual issues, ie- slower processing, but it is a miraculous recovery from where she was. It was not an over night recovery but it worked. So encouraged to read this article. More research is needed for these children living with these horrible autoimmune driven illnesses. Thank you for your on going research in the face of opposing views in the medical arena.
6/29/2020 07:18:36 am
Thanks for all this information and I will definitely share it in my groups. My son, Ryan, was once severely affected by autism and PANS. Today he an aerospace engineer and is leading a typical life. I wrote the book “I KNOW YOU’RE IN THERE—Winning Our War Against Autism” to save parents time and keep them from making the same mistakes I did. Autism is medical and TREATABLE. Check out this 90 second clip of Ryan before and after medical and behavioral interventions from the documentary Restoring Balance: Autism Recovery. https://bit.ly/3a8CtoM. All children on the spectrum need and deserve proper medical treatment that is why all profits from my book go to autism treatments/research. You can preview it on Amazon at https://amzn.to/2RHlOCl or on the website https://autism-and-treatment.com/. Autism recovery is never easy but it is so worth it.
6/29/2020 03:46:59 pm
Wonderful post, thank you! Have you also seen Dritan Agaliu's work from Columbia? https://youtu.be/4tb6QhhEUEE
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Dr. Suzanne Gazda, Integrative Neurology