PANDAS is an acute onset pediatric disorder that afflicts more children that we know. Although it has a cute acronym, “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections” can be detrimental to the quality of life in children, its primary demographic. It can be difficult to diagnose because of its relatively new clinical definition and its psychiatric-like symptoms, so we must raise awareness for it in the medical community. PANS and AE are similar disorders, but with different causes.
PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.
PANS: Pediatric Acute-onset Neuropsychiatric Syndrome.
AE: Autoimmune Encephalitis
The unfortunate families that encounter PANDAS are usually baffled by its onset, because symptoms appear instantly. Children seem to go to bed without symptoms, and wake up a completely different person the next morning, with symptoms that are completely out of character. Traditionally, medical professionals are taught that many PANDAS symptoms are behavioral or psychiatric, so PANDAS is not diagnosed. Instead, families are referred to a psychiatrist, or in severe cases, children are institutionalized. Misdiagnosis results in treatments like psych meds or cognitive behavioral therapies, but those are ineffective, because they are not treating the cause of the disorder: an underlying issue with inflammation in the brain.
Sudden onset of behavioral-seeming symptoms often result in an incorrect diagnosis of autism, OCD, behavioral disorders, or other psychiatric diagnoses.
Symptoms of PANDAS, PANS, and AE include:
- OCD-like rituals
- Restrictive eating
- Tics
- Anxiety
- Aggression
- Depression
- Behavioral regression
- Developmental regression
- Sensory sensitivities
- Hyperactivity
- Choreiform movements
- Bladder/Bowel dysfunction
- Inability to concentrate
- Unexplainable anger
- Obsession with germs
These symptoms area easy to mistake for psychiatric problems, because that is how most of us have been trained. Traditional diagnosis tells us to think that, “Someone is acting out? It must be poor behavior”, or “This person has depression? They must have experienced a trauma”. The truth is that our psychological and physiological selves are explicably intertwined by the main control center for our bodies, our brain, and that problems with our brain can easily cause psychological/psychiatric issues. Patients with PANDAS are experiencing encephalitis (swelling) in their brains, so symptoms include anything that the brain controls, which is… everything.
The cause of PANDAS seems to be complications because of the penetration of the blood-brain barrier. Usually, the brain is very selective of the compounds it receives from the blood by employing endocytosis and exocytosis: receptor-mediated processes that very selectively allow specific compounds in and out of the capillaries surrounding the brain, since nervous tissue is delicate and irreplaceable.
In PANDAS patients, TH17 t-cells left over from the body’s response to strep infection have made their way to the brain (probably via the olfactory nerve), the blood-brain barrier is compromised, antibodies are free to enter the brain from the blood and are now in areas of the brain that they should not be, attacking healthy cells.
Encephalitis (swelling of the brain) results in abnormal nerve impulses and abnormal behaviors.
Brain disorders are difficult to diagnose, and without the correct blood work and a PET scan, encephalitis is hard to spot. PANDAS patients have been known to have a positive antinuclear antibody titer (+ANA), indicating that the immune system is unable to distinguish from good and bad cells in the body.
Indications of PANDAS:
• Acute onset of neuropsychiatric symptoms.
• Recent streptococcal infection, or exposure to silent carriers.
• Positive ANA titer.
Streptococcus infections kill more than 100,000 people per year in the United States alone, can live on any surface of your body, and can be active in a non-symptomatic person. If that isn’t scary enough, it is the cause of PANDAS, which presents itself shortly after a strep infection. However, unlike the well-documented illnesses caused by strep, such as Scarlet Fever, Rheumatic Fever, Cellulitis, or even the rare Post-Streptococcal Glomerulonephritis, PANDAS is not well-documented or taught to medical professionals. The CDC itself does not even list it on its website (https://www.cdc.gov/groupastrep/diseases-public/index.html), even though it has been proven to exist.
Two short documentaries, “My Kid’s Not Crazy”, and “Stolen Childhood” chronicle the difficulty that several families have experienced with PANDAS and receiving proper medical help for the disorder. The families have difficulty getting insurance authorizations, express that IVIG treatments are expensive, and experience many doctors who are not willing to explore the possibility that neuropsychiatric symptoms can be caused by a physiological problem, even though it makes perfect sense.
The best thing that we can do as a community to assist in progressing the research and proper treatment of PANDAS, PANS, and AE, is to raise awareness of the disorders, and to support those who have been affected by it.