What’s PANS/PANDAS?

Imagine going to bed feeling completely fine one day, then waking up the next with a severe mental illness: suddenly, the world doesn’t make sense to you, and you feel detached from reality.

You can’t even leave your bedroom, because for no apparent reason, everything has become terrifying.  Your body is overcome with involuntary movements and tics that you can’t control.  You can’t eat, because you’re afraid it’s contaminated and will make you throw up.  All the lights are too bright, the noises too loud, and every minor annoyance makes you burst into a rage—though you used to be the nicest, most composed person around.

You feel completely outside yourself, yet trapped within your own thoughts.  You went to bed as yourself, and now you’ve woken up as a completely incapacitated and tormented creature that you no longer recognize.

If this sounds like a nightmare, it is…  And also the reality for thousands of people living with PANS/PANDAS.

 

So What Is It?

You’ve probably never heard of PANS/PANDAS, because many people who have it will never get a proper diagnosis, let alone treatment.  Unfortunately, as many as 1 in 200 people are affected. 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 disease triggered by a Strep infection.  The bacteria tricks the immune system into attacking the brain’s dopamine receptors, especially in a part called the Basal Ganglia, instead of the Strep 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 can be triggered by environmental factors and other infections and viruses besides Strep.  Bascially, 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, and/or food restriction. Often, someone knows they have an infection before it begins, but sometimes, the infection goes undetected (like in my case). But either way, one day, the individual with PANDAS or PANS suddenly becomes 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 OCD and/or a tic disorder, PANDAS/PANS symptoms include:

  • Restrictive eating
  • Anxiety
  • Depression
  • Concentration Problems/ADHD
  • Sensory sensitivities
  • Sleep difficulties (insomnia, hypersomnia, etc.)
  • Choreiform Movements
  • Emotional Lability
  • Urinary problems including bedwetting and/or frequent urination
  • Hallucinations
  • Aggression and Irritability
  • Deterioration in Handwriting

Not every patient has all of these symptoms, and there are other symptoms not listed here.

 

What’s the Treatment?

Because PANS is often triggered by an infection, the first step is treating the infection with antibiotics.  For some people, this is a cure, and no more treatment is necessary.

However, for others, the disease is more persistent, so it’s treated with similar methods to other autoimmune diseases:

  • High-dose steroids
  • IVIG (Intervenous Immunoglobulin)
  • Plasmapheresis
  • Biologic drugs such as Rituxan or Cellcept

PANS is NOT a mental illness, but sometimes, people need to use therapy and/or psychotropic medications to help manage the symptoms while waiting for medical treatments to work.  It’s an autoimmune disease, so therapy cannot cure it alone.

 

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:

 

Helpful Links

PANDAS Physicians Network – PANS Diagnostic Guidelines

PANDAS Network – What is PANS?

Moleculera Labs – PANS and PANDAS

Dr. Latimer: “PANDAS: One Size Does Not Fit All”

Find a PANDAS Doctor: USA PANDAS Physicians

 

 

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