PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. As the name suggests, this disorder is typically seen with a strep infection.  The strep infection can be anywhere in the body, but most often the infection is of the throat, skin, nose, or anus.

PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome.  This syndrome is typically associated with other types of viral or bacterial infections other than strep.  Examples of these infections include but are not limited to mycoplasma, mononucleosis, lyme, coxsackie, pneumococcal, and others.  In some rarer cases, PANS may be caused by exposure to a toxin or after anesthesia.

We begin to suspect a syndrome called PANS or PANDAS when your child has a sudden, dramatic change in his/her behavior or a regression in development, especially in association with an illness.  Parents describe the day of onset of symptoms as the day they “lost” their child, that their child becomes someone else.

PANDAS and PANS have similar symptoms, but unfortunately other disorders may cause similar symptoms. There is no one test to determine if a child has PANDAS/PANS.  Typically, multiple labs are drawn to check how the immune system is working and if the child has “titers” to certain viruses and bacteria.  Titers are measures of antibodies that help us know if the child has had an infection, but the titers do not tell us when the infection occurred or if it is still active.

When a child has one of these infections, the body develops antibodies.  For affected children, the antibodies not only attack the bacteria/virus, but they also attack the cells of a part of the brain called the basal ganglia.  There are also concerns that there may be a metabolic component of this syndrome for some, especially because the immune system utilizes metabolic pathways heavily to function optimally.

Symptoms a child may have, often with a sudden change from one day to the next:

  • Obsessions (can show in many forms, but frequently concerns of contamination)

  • Compulsions (can show in many forms, but commonly repetitively doing a behavior like washing hands, locking/opening door over and over, etc)

  • Anxiety, especially separation anxiety

  • Depression

  • Emotional Lability (sudden changes in mood)

  • Aggression

  • Oppositional behaviors

  • Behavioral/Developmental Regression

  • Sudden deterioration in school performance, especially math and/or handwriting

  • Tics

  • Sleep changes

  • Urinary or stool accidents

  • Food restrictions

PANS/PANDAS is easiest to treat when it is identified quickly.  Often antibiotics are very helpful, in part because they treat the underlying infection, but also because they cause some changes in the immune system.  Anti-inflammatories (including NSAIDS and steroids) may also be used to reduce inflammation and help to modulate the immune response.  Cognitive therapy and psychiatric medications are also recommended.  Other treatments, including supplements, may be used to improve symptoms.

PANS/PANDAS are considered relapsing/remitting disorders, in that they often recur after a period of general good health, especially when exposed to another virus/bacteria.  As an auto-immune disorder, there currently is no cure, but there is hope for healing, improved function, and wellness between “flares”.

Unfortunately, when PANDAS was initially researched, there was controversy in the medical community over the legitimacy of the diagnosis.  Many providers are skeptical that this disorder really exists, and many providers are not aware that this diagnosis even exists.  That means that often time parents know more about this illness than most providers and that it may take many visits to many providers before the disorder is identified.  This leaves parents feeling frustrated, exhausted, and hopeless.

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