But I don’t have giant bears… #PANDAS
I was horrified but not shocked by a recent paper in the prestigious journal The Lancet Psychiatry noting that 1 in 3 persons diagnosed with COVID19 have developed neuropsychiatric symptoms in the months following infection with the virus. Anxiety, depression, and mood disorders were the most frequent phenomena, and for 1 in 8 coronavirus patients, this was their first bout with a psychiatric illness. Some people who had been seriously ill with COVID19 went on to develop dementia, suffer strokes, or experience brain bleeds. While about 33% of coronavirus patients report a neuropsychiatric illness, more than 46% of patients treated in the ICU had neuropsychiatric sequelae.
I am familiar with the potential for infectious pathogens to wreak havoc on the brain. When I was seven, I had scarlet fever, a sickness caused by group A streptococcus bacteria. Scarlet fever begins with strep throat and the symptoms that are familiar to anyone who’s had that illness: swollen tonsils, difficulty swallowing, fever, and headaches. But in some kids, 24 to 48 hours into the strep infection, the child develops a bright red rash that feels like sandpaper, and covers their cheeks, torso and limbs. They might also have a “strawberry tongue”, glossal inflammation that appears deep pink and speckled like a berry.
The red rash of scarlet fever arises because some strains of group A strep secrete an erythrogenic toxin that damages the plasma membranes of blood capillaries under the skin. Historically, about 20% of children with scarlet fever died from the illness, but with the advent of antibiotics, the mortality rate in children who receive treatment is about 1%.
I did receive prompt treatment for scarlet fever. My mother was a registered nurse, and she knew exactly what was wrong with me when I broke out with the characteristic crimson rash. I was seriously ill, to the point were hospitalization was on the table, because I couldn’t keep down fluids. Instead, my mother retrieved equipment from the hospital where she worked, and set me up in my older sister’s bedroom with an IV plus antibiotics prescribed by my pediatrician. Although I was better within 10 days or so, in the following weeks I had to get blood draws to evaluate my levels of c-reactive protein; the erythrogenic toxins of scarlet fever have long been linked to heart, kidney, and joint damage.
What wasn’t understood was the correlation between scarlet fever and neuropsychiatric illness. PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus was first described in a 1994 paper by Dr. Susan Swedo, MD. She proposed a link between Group A streptococcal infection in children and some rapid-onset cases of obsessive-compulsive disorder (OCD) or tic disorders such as Tourette syndrome. Updated criteria and guidelines for PANDAS were established by the National Institute of Mental Health in 2012, with revisions added in 2017.
Shortly after I “recovered” from scarlet fever, I developed obsessive compulsive tendencies, tics, and other psychological symptoms. I would beg my mother to blow into my eyes, not because they hurt or itched, but because the cool feeling of air on my eyeballs satisfied some sort of urge beyond my control. I could kind of get the same sensation by pulling down on my lower lids, but it was so much more soothing if my mom would indulge me. I had flagrant hypnogogia which made sleep fraught, as I lay in bed at night paralyzed while visions like mutant starfish dangled in the air above my bed. Those night time hallucinations were matched by morning hypnopompia; at first light I was prone to hear our doorbell ring, or someone calling my name, yet once again I would be pinned to my bed by invisible forces. And, I developed a penchant for pinching and rolling my bottom lip with my fingers. I had never sucked my thumb as an infant or toddler, but something about pulling on my lower lip made me feel a little bit better.
I was a twitchy kid, and based on the previous seven years, I don’t think my mother was too concerned about my post scarlet fever behaviors. For one, I was already a peculiar child; but also, my mother was a bit of an odd bird herself. The bar for strangeness around our household was quite high; you’d have to be a real wackadoodle to elicit much concern. And, I was incredibly secretive…I still am in many ways…and I just don’t think I conveyed my distress to her in ways that triggered my mother’s worries. Add to that my mom’s complete overwhelm with 3 young daughters, a hectic career, and a husband who was rapidly going off the rails with alcohol, it’s no wonder she didn’t catch on to my neurocognitive changes.
I also think part of the reason why my PANDAS was never addressed was the lack of understanding in the 1970’s that strep infections could have a neuropsychiatric impact. It just wasn’t on anyone’s radar, and given the tremendous stigma at that time with pretty much every mental illness, my weird sister ways went without a medical diagnosis or social support until I reached adulthood and could make my own self-determined healthcare decisions. I’ve certainly suffered with the fallout from lack of an early intervention, and it sucks that I still have bouts with Tourette and other sequelae. But that’s the brain I’ve got, one that’s a bit battered by my bout with scarlet fever. I’m learning to love and respect it, despite my not very cute, not black and white, not bearish and cuddly PANDAS.
I am cautiously optimistic regarding the recent findings about the novel coronavirus and its potential for neuropsychiatric illnesses. Dr. Max Taquet,PhD, a clinical fellow in psychiatry at the University of Oxford and one of The Lancet study’s co-authors is sounding the alarm bells. In media interviews on Tuesday April 6th, 2021, he stated that there is a desperate need for continued research into the SARS-CoV-2 virus and its potential to harm the brain and nervous system. He also noted healthcare systems across the globe must prepare for an increased need for psychological and psychiatric care. This conversation about a microbe and its capacity to wreak havoc on mental health and its support systems is a heartening step toward better brain wellness.
Today, I am grateful for individuals like Dr. Taquet, those researchers who are working diligently toward a geater understanding of how microbial infections can impact the central nervous system. After reading Dr. Taquet’s paper in The Lancet Psychiatry, I am even more thankful I got the Moderna vaccine. I recognize that the mechanisms for neuropsychiatric illness in COVID19 patients is still poorly understood, and I know it’s not a sure thing that if I had the coronavirus, I’d develop increased anxiety, depression or any of the other potential neuropsychiatric outcomes. I just don’t think my brain could handle any more damage. My longstanding PANDAS is more than enough to manage.