Written by Kenmont Group

“Don’t Label Kids” [1] – October 9th is National PANDAS Awareness Day — What parents need to know

Three weeks ago, “Sara” was a healthy, playful six-year-old who had just started first grade.  Over the course of hours, Sara’s personality suddenly changed.  She became hyperactive with intense mood swings.  She began scratching, spitting, and talking like a baby.  Her parents were at a complete loss of what to do.  Noticing a faint rash on her chest, the school nurse had her tested for strep throat.  She suspected that her behavior was due to a rare complication of strep known as PANDAS.

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infection.  Strep throat is a common infection in children.  In rare cases, a strep infection can stimulate an immune response that causes inflammation in the brain.  This inflammation causes a sudden onset of psychiatric symptoms.

Parents often recall the exact day that their child started acting abnormally.  Parents usually notice dramatic changes in behavior including hyperactivity, tics or involuntary movements, obsessions and compulsions, sleep disturbances, bedwetting, and refusal to eat.  Teachers report the children are suddenly unable to focus, show changes in handwriting, and their academic performance declines. When the strep infection is active, the child may also have a sore throat, upset stomach, headache, fever, or rash.

PANDAS occurs as often as 1 in every 200 children, according to the PANDAS network, an outreach partner of the National Institute of Mental Health.[1] Two thirds of children are diagnosed between ages 4 and 9. Most children have involuntary tics, and almost all are described as obsessive compulsive. Four out of five cases are associated with strep.  Other causes include mycoplasma, Lyme and other infections. Behavioral changes due to these other causes are grouped under a broader term PANS (pediatric acute-onset neuropsychiatric syndrome).

While strep throat is easily diagnosed with a throat swab, there is no test for PANDAS.  The diagnosis can be made only after other causes have been ruled out.  Treatment with antibiotics to remove the strep bacteria is the first step. Removing the tonsils does not eliminate PANDAS but can help eradicate the strep infection in those children who do not respond to antibiotics.[2] Behavioral symptoms may be treated with counseling or medications. The most severe cases may be treated with plasma exchange or intravenous immunoglobulin (IVIG).[1] Treating this disorder often requires collaboration among several physicians, including pediatricians, immunologists (immune specialists), neurologists,[1] psychiatrists and otolaryngologists (ear, nose and throat surgeons). It is important to collaborate with teachers or counselors to develop appropriate accommodations at school.

Before you let your child be labelled OCD or ADHD, consult your pediatrician regarding the possibility of PANS/PANDAS.

Learn more about National PANDAS Awareness Day .

Additional information can be found at the National Institute of Mental Health  and the PANDAS Network .

[1] “Don’t Label Kids” is a message from Medarva Healthcare to promote awareness that behavioral and learning challenges in children may be due to eye, ear nose or throat conditions. http://www.medarva.com/labels/

[2] http://www.pandasnetwork.org/get-involved/2018-october-9th-awareness-day-2/

[3] http://www.pandasnetwork.org/understanding-pandaspans/statistics/

[4] https://jamanetwork.com/journals/jamaotolaryngology/fullarticle/2089440

[5] https://www.nimh.nih.gov/health/publications/pandas/index.shtml#pub3