PANDAS & Lyme: My Recovery and 8 Years of Misdiagnoses

What’s PANDAS/PANS?

You’ve probably never heard of 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. Basically, PANDAS is an autoimmune reaction triggered by a strep infection where the body’s antibodies start attacking the Basal Ganglia in the brain and neurotransmitters instead of the infection, resulting in all kinds of horrible symptoms.

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a newer term used to describe the same autoimmune mechanism, but it includes cases triggered by other infections and viruses besides strep.  PANDAS is considered a subset of PANS.

The main feature in both PANDAS/PANS is a sudden onset of Obsessive Compulsive Disorder, anxiety, movement problems, or a restricted food intake. Often, there was a known infection before the acute onset, but sometimes, the trigger is not known (like in my case). But it is clear that one day, the kid with PANDAS or PANS has suddenly become a different person.

In addition to the sudden onset of 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.

 

Although patients with PANDAS/PANS 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 considered a rare and controversial disorder.

If you suspect that you or someone you know might have PANDAS or PANS please consult a PANDAS expert.  For more information about PANDAS, please check out the resources below:

 

Helpful Links

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

 

 

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