Posted by Written by Vivienne Palin
My STEAM project covers the objective “Identify the various components and key structures of the nervous system” and takes a look at the not-so-well-known autoimmune encephalitides, PANS/PANDAS. My art piece gives a glimpse into different treatment modalities and symptoms, what the PANS/PANDAS acronym stands for, and where the basal ganglia is located in the brain (along with a bit of information on it).
One day, your child is their old, usual, fun-loving self – she loves to read, write, eat all her favorite foods (which really can’t be numbered), play with her toys, and have fun outside with friends. The next, it’s as if someone else has entered your child’s body. She can no longer concentrate on reading, her once beautiful handwriting now looks like a kindergartener’s, she won’t touch her food for fear that it’s contaminated or that something bad will happen to her or her family if she eats it, she can’t even begin to play with her toys because she’s busy reorganizing her room for the third time that day, and tics and mental disturbances keep her from having fun outside with friends. Welcome to PANS/PANDAS.
PANS/PANDAS are relatively new conditions in the medical world – PANDAS was discovered in 1998 by Dr. Susan E. Swedo, and PANS was defined in 2010. PANS/PANDAS are two separate, yet very similar, types of autoimmune encephalitis that affect the basal ganglia of the brain. The main difference between the two is that PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is caused by a bacterial or viral infection other than strep (such as the common cold, flu, Covid, Lyme disease and co-infections like bartonella, and mycoplasma pneumonia, to name a few) or an environmental trigger (such as mold toxicity), whereas PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is caused by a bacterial infection, specifically Group A streptococcus bacteria (Swedo et al., 2015).
As mentioned above, PANS/PANDAS affects the basal ganglia of the brain – more specifically, the body’s immune system attacks it, which causes autoimmune encephalitis. The basal ganglia is a group of subcortical nuclei found deep to the neocortex of the brain and is responsible for motor control, motor learning, decision-making, behaviors, and emotions. When the basal ganglia is inflamed and under attack, things go more than a little haywire; there’s a decrease in motor control, motor learning, and decision-making, combined with a sudden increase in emotional or behavioral instability. This explains PANS/PANDAS myriad of symptoms, including – but by no means limited to – anxiety, depression, aggression, behavioral regression, hallucinations, obsessions, compulsions, sensory and motor abnormalities, a decline in academic skills, severe eating restrictions, and somatic symptoms such as nightmares and bedwetting (“PANS PANDAS Symptoms”, n.d.). One thing to note about PANS and PANDAS is that they typically have an abrupt-onset, in some cases changing the child from one day to the next. Parents of children with PANS/PANDAS often express it as having happened “overnight.”
Unfortunately, PANS/PANDAS is frequently misdiagnosed or missed entirely. It is estimated that 1 in 200 children in the U.S. alone have PANS/PANDAS, but it is unknown how many of those children will be properly diagnosed. Approximately 33% of children see more than five doctors before they are properly diagnosed with either PANS are PANDAS (“PANS and PANDAS Symptoms and Diagnosis”, 2021). Others, unfortunately, aren’t so lucky. Due to PANS and PANDAS overlap of psychiatric symptoms, children are often diagnosed with a psychiatric illness – such as depression, anxiety, and so forth – or a neurological or developmental disorder, like autism. Children with PANS/PANDAS who experience severe eating restrictions are most often diagnosed with an eating disorder, such as Anorexia Nervosa or ARFID (Aman et al., 2022).
Although there isn’t a gold-standard test for diagnosing PANS/PANDAS, if PANS or PANDAS is suspected, basic blood work and viral/bacterial testing is done. For additional testing, the Cunningham Panel is most often used to assist physicians in diagnosing PANS/PANDAS. The Cunningham Panel is a high-complexity test that uses a series of five individual blood tests that assess autoimmune antibody levels. These tests are for the dopamine D1 receptor, dopamine D2L receptor, lysoganglioside GM1, tubulin and CaM kinase II (“Biological Markers for PANDAS and PANS”, n.d.). Imaging may also be done to rule out other medical conditions.
Treatment for PANS/PANDAS is symptom based and varies with each patient (Thienemann et al., 2017); there isn’t a one-size-fits-all approach. Conventional treatment modalities for PANS/PANDAS can include antibiotics, steroids, NSAIDs, SSRIs, therapeutic plasma exchange (TPE), intravenous immunoglobulin (IVIG) treatment, and in some cases, psychological therapies such as Cognitive Behavioral Therapy (CBT). More holistic treatments, although not thoroughly researched for efficacy, include homeopathy, herbs and supplements, natural anti-inflammatories such as curcumin and omega-3 fatty acids, neurofeedback, the use of hyperbaric oxygen chambers, and red light therapy, among many others. One family in Oklahoma even used donkey milk for their daughter suffering from PANDAS (“Local family gets into dairy business”, 2018). After seeing great improvement, the family started a donkey milk business in hopes of helping others.
Most people have heard of the saying, “an ounce of prevention is worth a pound of cure.” It is unknown what preventative measures, if any at all, can be taken to prevent acquiring PANS/PANDAS. It also isn’t entirely researched for who is at risk; however, although PANS/PANDAS are classified as pediatric conditions, they can also affect adults. Further research needs to be done into the above topics.
There can be a lot of unclarity when it comes to PANS/PANDAS, but there is hope that further research into the conditions will bring about greater awareness and recognition, and provide PANS/PANDAS patients with better support.
Below is a list of websites where you can learn more about PANS/PANDAS:
https://neuroimmune.org/patient-and-family-resources
Citations:
Swedo SE, Seidlitz J, Kovacevic M, Latimer ME, Hommer R, Lougee L, & Grant P. (2015). Clinical presentation of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections in research and community settings. Journal of Child and Adolescent Psychopharmacology.(1):26-30. doi: 10.1089/cap.2014.0073. PMID: 25695941; PMCID: PMC4340334.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4340334
“PANS PANDAS Symptoms”, n.d. Aspire. https://aspire.care/symptoms-diagnosis/symptoms/
“PANS & PANDAS Symptoms and Diagnosis: A Psychiatrist’s Guide” (2021) Suruchi Chandra M.D. https://chandramd.com/pans-pandas-diagnosis/
Aman, M., Coelho, J.S., Lin, B. et al. Prevalence of pediatric acute-onset neuropsychiatric syndrome (PANS) in children and adolescents with eating disorders. J Eat Disord 10, 194 (2022). https://doi.org/10.1186/s40337-022-00707-6
“Biological Markers for PANDAS and PANS”, n.d. PANDAS Network. https://pandasnetwork.org/pandas-biological-markers/
Thienemann M, Murphy T, Leckman J, Shaw R, Williams K, Kapphahn C, Frankovich J, Geller D, Bernstein G, Chang K, Elia J, & Swedo S. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part I-Psychiatric and Behavioral Interventions. Journal of Child and Adolescent Psychopharmacology. (2017).(7):566-573. doi: 10.1089/cap.2016.0145. Epub 2017 Jul 19. PMID: 28722481; PMCID: PMC5610394.
https://pubmed.ncbi.nlm.nih.gov/28722481
“Local family gets into dairy business after claiming donkey milk saved daughter’s life”, (2018) Carlo M., KOCO 5 News. https://www.koco.com/article/local-family-gets-into-dairy-business-after-claiming-donkey-milk-saved-daughters-life/24749166