Dear PANDAS Families,
The Advances for PANDAS and PANS have been Extremely Pivotal during 2020 and we wanted to be sure you didn't miss any of the current research. Linking each study together in one cohesive cohort of children will explain the orchestration of likely an innate autoimmune reaction in children with PANDAS-PANS-AE. To that end the Univ of Arizona IVIG Trial will greatly help us all. And, of course Covid-19 is bringing awareness to our disease model worldwide.
Following is an OVERVIEW - 2020 Evidence, Infection Triggers Brain Inflammation
We created the above downloadable image to show that misdirected autoimmune "auto" antibodies have been discovered within 27 children's brains who have had PANDAS. They irritate and bind to cholinergic interneurons (CINS, neurons that are often found elevated in OCD or Tourettes).
Eleven of the children received IVIG (not all were studied for IVIG efficacy). It was discovered these autoantibodies diminished from the CINS after IVIG and symptoms of OCD and neuronal malfunction calmed post-IVIG treatment. It indicates an infectious reaction caused this elevation. However, the cohort is small, therefore, a larger study needs to be done. This is a vital, critical first step to show PANDAS is an autoimmune encephalitic process.
A commentary in the American Journal of Psychiatry explains where we must expand research: PANDAS: Too Narrow a View of the Neuroimmune Landscape Dr. Steven Hyman, Harvard, states, "....it would be well worth the effort to understand the role of cholinergic interneurons in health and disease better than we currently do. [And] It warrants significantly more scientific investment than it has received."
Univ of Sydney: Dopamine 2 Receptor Reacts to Specific Immune Cells in Children with PANDAS, PANS, SC &Tourettes click here for paper
The dopamine 2 receptor (D2R) is widely studied in research. It has been implicated in many movement and psychiatric disorders. This team of well known autoimmune encephalitis researchers (Dr. Fabienne Brilot, Russell Dale & colleagues) studied 24 children with a variety of issues: PANDAS PANS Tourettes & Sydenham Chorea. The children's blood generated an innate immune response to the D2R - an inflammatory response of Th1 and Th17 cytokines. This is important because it shows a direct autoimmune reaction from the children.
Often our children are turned away from treatment because they are seronegative for antibodies in lumbar puncture (if they are able to get one)! This paper is important because it can be a new way to measure in the blood inflammation that causes brain inflammation. "This finding adds to the growing reports of neuroimmune encephalitis cases that are negative for known neuronal antibodies, but are responsive to immunotherapy."
Columbia: Inflammatory Th17 cells Drive Vascular & Neuronal Deficits in a Mouse Model of PANDAS or Basal Ganglia Encephalitis click here for paper
Here it is proven that strep bacterium has the ability to open the blood brain barrier (BBB). Up until this research was done it was disputed it was possible.
- Strep has the capacity and power to open the blood brain barrier.
- Th17 lymphocytes drive autoimmune reactions. This can be useful in understanding Central Nervous System Disorders and other forms of Autoimmune Encephalitides (like COVID-19).
Opening of the BBB and its damaging consequences can occur with other infectious agents as well. BBB breach is a two step "opening process occurs" of endothelial cells (a type of protective tissue to BBB) that lose their protective integrity by misdirected auto antibodies that 1) open tight junctions and 2) create a process of transcytosis.
This mouse model is used to show how antibodies flood the brain and further indicate that in humans the Basal Ganglia are afflicted.
OUR GOAL AT PANDAS NETWORK is RESEARCH & ACCESS TO CARE
These papers were published during 2020, a difficult year for us all, and a challenging time to spread PANDAS PANS research. Please know we are going forward in 2022 as an ever-expanding community of advocates. To support research and advocacy efforts we will grow writing & illustration on the above topics. We will help families, doctors and potential new researchers grasp the opportunity for cutting-edge work in Autoimmune Encephalitis.
STAY TUNED For Many New Things at PN & THANK YOU!