What It PANS/PANDAS And How Might It Be Affecting Your Child?

Posted on November 14th, 2017

Have you heard of PANDAS? No, not the cute black and white bamboo eaters… but Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, a potentially serious disorder caused by strep. Yes, the same strep as in strep throat, although officially known as group A beta-hemolytic streptococcus (GABHS), a bacteria that has been around forever, but has mutated constantly over the years.

In the 1990s, researchers at the National Institutes of Health found that children who suddenly developed obsessive-compulsive disorder (OCD) usually did so after an infection, commonly a strep infection. Fast-forward 20 years and now doctors have realized that strep and many other infections, and some autoimmune disorders, can cause severe neuropsychiatric disturbance – typically OCD, motor and verbal tics, eating restriction, depression, mania, aggression, hallucinations, urinary urgency, loss of handwriting and drawing skills, cognitive regression, inattention and hyperactivity.

If a strep infection clearly preceded the onset of symptoms, which would be known either by a throat swab or by a blood test for antibodies against strep, then the disorder is called PANDAS. If strep cannot be established, then the disorder is called “Pediatric Acute-Onset Neuropsychiatric Syndrome” or PANS.

However, most people with these neuropsychiatric symptoms do not usually come about them in this way – “typical” OCD, Tourette’s, anxiety, depression, etc. comes on more gradually and there is no clear-cut underlying medical cause – just genetic risk plus environmental stress. So how can we tell the difference? The hallmark  of PANDAS is a sudden onset of OCD or tics. For PANS, it is a sudden onset of OCD or eating restriction. That means most parents remember the day that the symptoms started, and within 72 hours there should be at least two other accompanying symptoms from this list:

  • Anxiety
  • Emotional lability and/or depression
  • Irritability, aggression, and/or severely oppositional behaviors
  • Behavioral (developmental) regression
  • Deterioration in school performance (related to attention deficit/hyperactivity disorder [ADHD]-like symptoms, memory deficits, cognitive changes)
  • Sensory or motor abnormalities (tics, hallucinations)
  • Somatic signs and symptoms (sleep disturbances, enuresis, urinary frequency)

Finally, the symptoms cannot be explained by any other cause, such as Syndenham Chorea, which is a well described syndrome that occurs after strep infection and leads to chorea (writhing movements of the limbs/trunk). (It’s semantics because SC is just another form of PANS/PANDAS.)

It’s unclear how common PANS/PANDAS is. It’s thought to be uncommon, but it still occurs in about 1% of children. Boys are affected more than girls, and the usual age at onset is between 6 and 10 years of age. Cases have been reported all over the US and in many countries around the world.

If your son or daughter has had any sudden onset of anxiety, motor/vocal tics, eating restriction, or OCD, you should consider PANS/PANDAS as a cause. The catch is, many doctors still don’t know about this disorder – it has not been officially recognized in the medical or psychiatric dictionaries that are used for diagnoses.  Some doctors even believe that it is a “hoax” or is too controversial, but this is not the case. To combat public perception, a group of researchers, spearheaded by the Stanford PANS Clinic, published a special issue of the Journal of Child and Adolescent Psychopharmacology in January of 2015. This issue included an expert consensus on how youth should be assessed for PANS/PANDAS. Also included were numerous case reports and descriptions of children and adolescents experiencing PANS flares, including cases triggered by strep, mycoplasma, sinusitis, and autoimmune processes.

In May 2017, the same journal published three papers from the same research group detailing expert opinions on treating youth with PANS/PANDAS. For now, treatment revolves around the use of three categories of intervention:

  • Anti-infectious interventions: antibiotics
  • Immune-modulatory interventions: anti-inflammatories, prednisone and other corticosteroids, rheumatological medications, and intravenous immunoglobulin (IVIG) and plasma exchange (PEX)
  • Psychiatric interventions: medications (e.g. SSRIs, benzodiazepines) and psychotherapies

It’s quite stunning when one sees simple antibiotics reversing a child’s severe OCD and depression. However, numerous trials of different interventions are often needed, and sometimes proper treatment is not found for months or years.  It is likely that the earlier the diagnosis is made correctly, the earlier proper interventions can occur, and the better the outlook is for the child. Despite treatment, episodes or flares can re-occur either due to events like re-infection or sometimes even without a known cause.

How do infections and autoimmune problems cause these neuropsychiatric symptoms? Evidence points to the common underlying cause being some type of inflammation in an area of the brain called the basal ganglia. This area is a hub of fine processing for many different circuits in the brain: movement, attention, mood, and anxiety just to name a few. If this area is disrupted, one could experience the various types of symptoms seen in PANS. How this area becomes inflamed is not exactly known, but animal and human studies have shown that in some cases after infection (e.g. with strep), the blood brain barrier that protects the brain from substances in the blood becomes leaky. Inflammatory proteins and anti-neuronal antibodies may then get through to the basal ganglia, causing localized inflammation. Indeed, high levels of anti-neuronal antibodies have been found in the blood of kids with PANS and in the basal ganglia of research mice who have a PANDAS-like illness. While research in this area is in its infancy, there is a push for more research to come, so stay tuned!

For more information: It should be noted that all the information you see on the internet may not be accurate, particularly with disorders that are not yet well studied! So be careful out there – but in general, reliable information can be found at PANDASNetwork.org, the Stanford PANS Clinic website, and a recent documentary can be found at http://www.mykidisnotcrazy.com.

Another note: to be seen at the Stanford PANS Clinic you must be referred by a pediatrician and be within 90 miles, and due to low resources, they are extremely busy. But, keep trying to advocate for yourself/your child and get the best care you can!

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Would you like additional guidance in this area? Teen Therapy Center provides individual teen therapy, family therapy, group therapy, parent support counseling, and in-home teen and family coaching 7 days a week, including afternoons, evenings, and weekends. For more information, contact us at 408.389.3538.