The Frustrating, Misunderstood and Evolving World of PANS/PANDAS: Untreated Infections Can Lead to Lifelong ChallengesAug 01, 2017 03:57AM ● By Lisa Wolk-Kilion
The child radiated happiness, had friends and loved life. Then seemingly overnight, he changed; he began to suffer from obsessive-compulsive disorder (OCD) behaviors and tics, wet the bed, was unable to leave the side of his parents, barely ate, raged and threw books. He told his parents that he wished to die. His doctor prescribed antidepressants but the medication did little to alleviate the symptoms.
Enter the world of PANS/PANDAS, an infection-induced encephalitis that strikes approximately one in 200 children. PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, is an autoimmune neuropsychiatric disorder triggered by infection, including flu, pneumonia, mycoplasma, Lyme disease, Coxsackie and strep. On the other hand, PANDAS, which is a slightly more recognizable acronym, pertains to the autoimmune neuropsychatric disorder induced by the streptococcus infection. PANDAS was first identified in the 1990s by Dr. Susan Swedo, who currently researches at the National Institute of Mental Health (NIMH).
Swedo has likened PANDAS to “rheumatic fever of the brain.” An untreated strep infection can result in the body’s antibodies attacking the brain instead of strep cells. It has been shown that antibodies cross the blood brain barrier to attack the basal ganglia and other integral parts of the brain. Dr. Dritan Agalliu is currently studying this aspect at Columbia University.
According to the NIMH, PANS is a clinical diagnosis. The child’s history, symptoms and blood tests are all used for diagnosis. While a sudden onset of symptoms can indicate PANS, the onset is sometimes more insidious. It may start at any age so doctors ought to run bloodwork for possible infections. In addition, Moleculera Labs has created the Cunningham Panel, a blood test which can help identify levels of autoimmune antibodies. At the current time this test is typically not covered by insurance.
It is integral to get proper medical support immediately. Any child with a sudden change in personality or an onset of depression should, of course, be evaluated for abuse; however, parents and medical providers need to know that an infection can provoke these symptoms. The first line of therapy is often antibiotics or antivirals, depending upon the infection that triggered the symptoms. Steroids may be used to bring down inflammation, provided that Lyme disease is not an inherent infection. However, despite a slowly growing body of research, too many children remain misdiagnosed for long periods of time.
“Heightened clinical suspicion and more appropriate and comprehensive treatment with antibiotics and immune-modulating therapy will transform PANDAS from a devastating chronic illness with episodic flares into a treatable disorder,” says Dr. Nancy O’Hara of Center for Integrative Care in Wilton. She will be speaking at the upcoming New England PANS/PANDAS Parent Association conference in Connecticut in November 2017.
Children who have severe symptoms can be given IVIG (intravenous immunoglobulin) or plasmapheresis. The PANDAS Physicians Network advocates for immune-modulating therapies for children at risk. “In addition to the immunomodulatory therapies, supportive therapy would include re-feeding protocols for the children with anorexia; cognitive behavioral therapy (CBT) for obsessional food/eating restrictions and the self-injurious behaviors; and educational/supportive therapy for parents (and later for the child) to ensure that symptoms do not escalate further,” the network recommends. Many practitioners have found that CBT works only after the inflammation has been decreased.
There are some important facts to know. Some children do not react with bacterial or viral symptoms, even fevers, but instead have an increase in intrusive thoughts, tics and other PANS symptoms. Children with autism are just as susceptible to PANS and PANDAS. Note that tests for Lyme disease and other tick-borne infections are often erroneous. While not all children with PANS have Lyme or vice versa, a correlation does exist. There is treatment and hope. Support groups and knowledgeable medical practitioners are available.
If PANS or PANDAS is suspected, seek a medical practitioner. We must also do our own research; an informed parent is critical to the success of the child.
For more information on PANS and PANDAS, visit websites such as NEPANS.org, PANDASPPN.org, PANDASNetwork.org, tinyurl.com/NIHMentalHealth and MyKidisNotCrazy.com. For those who want to understand the challenges of this syndrome, watch the new My Kid is Not Crazy documentary.
Lisa Wolk-Kilion, the mother of a child with PANS, is the founder and editor of PANSlife.com as well as an educator for two decades in New York. PANSlife.com provides resources, encouragement and support to families dealing with Lyme disease and PANDAS/PANS.