MIND ON THE RUN:
PANDAS: Strep’s Enduring Threat To The Brain
Part 2
By Kristi Wees, MSc Chemistry
Chief Patient Advocacy Officer
Pediatric Alliance — Arcadia
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) can be thought of as the next generation of Sydenham’s chorea, an affliction which in its heyday could last up to a year and be so disabling as to mandate home confinement. In turn, Sydenham’s (a condition which occurs as a result of an infection with Group A beta-hemolytic Streptococcus — the bacteria which causes strep throat and rheumatic fever) can be regarded as a temporary version of Huntington’s chorea, a hereditary progressive neurodegenerative disorder often presenting insidiously in early-to-mid adulthood with OCD features and emotional and cognitive impairments. A study in 1989 by Susan Swedo and psychiatrist Henrietta Leonard at the National Institute of Mental Health investigated the power of association between Sydenham’s chorea and psychiatric symptoms. This study found that two-thirds of those children with Sydenham’s actually had obsessive-compulsive behaviors and thoughts which appeared about two-to-four weeks before the movements did, often suddenly and out of the blue.
Fast forward to today, 2018 — over 20 years after the original mention of PANDAS by government-funded scientists in prestigious medical journals — parents of children exhibiting symptoms consistent with the PANDAS diagnostic criteria are still being told across the country that this condition is not “real,” that their child has autism, Tourette’s syndrome, OCD, or another genetic psychiatric condition. Some, including families in Pittsburgh, have reported being turned away from the proper treatment for the underlying root cause of their child’s condition.
Recently, an event it Pittsburgh — “Pancakes for PANDAS” — brought awareness to this condition with the showing of the documentary, “My Kid is Not Crazy”, with a Q&A afterwards led by the director, Tim Sorel, featuring 2 doctors and a family impacted by PANDAS, who lost their child to this condition. Media coverage of the event and local families impacted can be found here, here, here, and here.
If you are a parent and believe your child may be struggling with PANDAS or PANS, your first conversation should be with your pediatric provider, since initial blood work can be ordered to investigate further. If you are looking for education, local support, or advocacy for PANS/PANDAS you can contact Kristi Wees at Empowered Medical Advocacy for more information and assistance.
Helpful Resources:
Recent publications on PANDAS/PANS:
> “PANDAS/PANS treatments, awareness evolve, but some experts skeptical”, AAP News (March 28, 2017).
> “A Survey of Pediatric Acute-Onset Neuropsychiatric Syndrome Characteristics and Course”
> “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS)”
PANDAS/PANS Advocacy & Support
New England PANS PANDAS Association
The above resources were compiled by Kristi Wees, Chief Patient Advocacy Officer, Empowered Medical Advocacy. Utilizing her extensive industrial, academic, and research experience, Kristi navigated her own daughter’s medical journey back to restored health. Her science background has given her an interest in investigating the biochemical aspects of PANDAS, autism, and other chronic childhood disorders. It is her hope to help families find individualized treatments for their children by utilizing root cause analysis and data about their child’s health. Kristi is a regular contributor to Pittsburgh Parent magazine.
We plan a sequel for The PediaBlog focusing on laboratory studies and treatment — these aspects of PANDAS are currently in the process of evolution.
This old ballad by John Lennon might sum up the internal psychic confusion of one inflicted with PANDAS/PANS: “Watching the Wheels”.