What Is PANS/PANDAS?

PANS is fire in your veins and voices in your head, burning urges and spiraling darkness. PANS is shaking and crying, it’s sitting curled in a ball, immobilized by a fear that you know is irrational, but can’t rid yourself of all the same. PANS is chains of thoughts that spin in maddening circles, twisting your other thoughts around you, drowning you in fear, in darkness. It’s making yourself sick from hunger, then sicker from the fear of getting sick. It’s a live wire coiling through your blood, causing you to pace until your legs ache, grit your teeth until your jaws hurt, shake until you feel as if you’ll explode if you can’t let it out. But you can’t let it out.

PANS is the four-year-old who used to be independent, but now won’t leave his mother’s side. PANS is the nine-year-old who was once quiet, unbothered, but now explodes in rages at the slightest disturbance. It’s the teen who was top of her class inexplicably getting C’s and D’s in place of A’s. PANS is losing the person you were and becoming something else, losing control of your emotions, your actions. It is so many things, it affects people in so many ways, so how do you describe it?

 

Today, October 9, is International PANS/PANDAS Awareness Day, but what is PANS/PANDAS, medically speaking?

 

Pediatric Acute-onset Neuropsychiatric Syndrome is an autoimmune disorder which causes inflammation of the brain. PANS causes a sudden onset of symptoms, which often seem random and unrelated, including OCD, severely restricted eating, depression, anxiety, tics, personality changes, sudden onset of irrational phobias, decline in math and handwriting abilities, sensory & motor abnormalities, and more. Unlike its counterpart, PANDAS (Pediatric Acute-onset Neuropsychiatric Disorder Associated with Streptococcal infections), which is only triggered through strep infections, the triggers for PANS are much more diverse—from stress to allergic reactions to an infection, and many in between.

Diagnosing PANS

The main clinical criteria for diagnosing PANS are as follows:

• Sudden (acute) onset of OCD and/or severely restricted eating
• Symptoms cannot be better explained by a different neurologic/medical disorder
• As well as two or more of the following accompanying symptoms:

 

• Anxiety
• Emotional liability and/or depression
• Irritability, aggression, and/or severely oppositional behaviors
• Behavioral (developmental regression)
• Deterioration in academic performance
• Sensory/motor abnormalities
• Sleep disturbances
• Enuresis/frequent urination

 

Treatment

At this time, there is no known cure for PANS, but it can be successfully treated most of the time. If the trigger can be identified as an infection, someone with PANS may benefit dramatically with only a traditional course of antibiotics. However, further treatment is often necessary. Depending on the case, PANS can be successfully treated by long-term antibiotics and anti-inflammatory supplements, to steroids, to IVIG and plasmapheresis. Treatment varies according to a case by case basis and you should always listen to the doctor who is treating you.

The Difference Between PANS and PANDAS

Essentially, PANS is a broadened version of PANDAS. Where PANDAS is only triggered by strep, PANS can be triggered by many things. Also, to be diagnosed with PANDAS, your symptoms must have a prepubescent onset, PANS has no such age restrictions.

~*~

PANS is considered controversial and many practitioners don’t acknowledge its existence, whether they’ve never heard of it, or choose not to believe in it. The first ever medical document on PANS was released only five years ago. PANDAS has only been around since 1998. Yet I’ve spent five years searching nearly non-stop for answers, and none of the fifteen specialists, doctors, and therapists ever mentioned PANS or PANDAS. Over the years, I’ve been misdiagnosed more times than I can name. They never stuck, never explained everything. PANS explains everything.

PANS/PANDAS is hard. It’s scary and painful and wearing. But it is real and it deserves to be treat as such.