You’ve probably never heard of PANS/PANDAS, because many people who have it will never get a proper diagnosis, let alone treatment. Unfortunately, there may be as many as 160,000 people with the condition. Left untreated, patients may tragically be relegated to psych wards, years of drugs that don’t work, multiple misdiagnoses, and unimaginable suffering. But it doesn’t have to be that way. With recognition and proper treatment, the condition is completely, or almost completely, curable.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disoders Associated with Streptococcus. (Yes, it’s a mouthful!) Basically, PANDAS is an autoimmune reaction triggered by a strep infection where the body’s immune system attacks the brain’s dopamine receptors, especially in a part called the Basal Ganglia, instead of the infection.
This autoimmune attack results in all kinds of horrible neurological and psychiatric symptoms, which look like a severe mental illness–but PANS/PANDAS is actually a physical, autoimmune disease.
PANS (Pediatric Autoimmune Neuropsychiatric Syndrome) is a newer term used to describe the same autoimmune mechanism, but it includes cases triggered by environmental factors and other infections and viruses besides strep. PANDAS is considered a subset of PANS.
The main feature in both PANS/PANDAS is a sudden onset of Obsessive Compulsive Disorder, anxiety, movement problems, or a restricted food intake. Often, there is a known infection before it begins, but sometimes, the trigger is not known (like in my case). But it is clear that one day, the individual with PANDAS or PANS has suddenly become a different person.
Usually, it starts between ages 5-13, but it can happen earlier or later, too. Some kids outgrow it, but for others, if it goes untreated, it’s possible to still have the condition as an adult–as I do.
What Are the Symptoms?
In addition to the sudden onset of OCD and/or a tic disorder, PANDAS/PANS symptoms include:
- Restrictive eating
- Concentration Problems/ADHD
- Sensory sensitivities
- Sleep difficulties (insomnia, hypersomnia, etc.)
- Choreiform Movements
- Emotional Lability
- Urinary problems including bedwetting and/or frequent urination
- Aggression and Irritability
- Deterioration in Handwriting
Not every patient has all of these symptoms, and there are other symptoms not listed here.
What Happens to People with PANS/PANDAS?
Although patients with PANS/PANDAS usually have a good outcome after treatment, the main problem is getting the diagnosis in the first place. For me, it took eight years and fifteen doctors, and it was my parents who first hypothesized I had the disorder—not a doctor. Sadly, this is pretty typical, because PANDAS was only discovered in the 1990’s and is wrongly considered a rare and controversial disorder by many uninformed doctors.
PANS is not rare–it’s just rarely diagnosed.
If you suspect that you or someone you know might have PANDAS or PANS please consult a PANDAS expert. For more information about this disease, please check out the resources below:
PANDAS Physicians Network – Homepage
PANDAS Network – PANDAS Information
Moleculera Labs – “What Is PANDAS?”
Dr. Latimer: “PANDAS: One Size Does Not Fit All”
Find a PANDAS Doctor: Leading PANDAS Physicians