Looking back now, it is easy to see the puzzle pieces that fell into place. My sister, once a hard-working, ebullient eleven-year-old, was now suddenly restricted to her bed, without the energy to walk to the restroom. She developed acute Obsessive-Compulsive Disorder (OCD), tics and dramatic, uncontrolled movements; she also had lengthy night terrors. She would faint more than 40 times a day and have terrifying seizures. She didn’t recognize me for days at a time. It was devastating. While her symptoms were concrete and indisputable to us – and to the paramedics, school nurse, pediatrician, therapist, and psychiatrist – Later, doctors diagnosed my sister with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal…show more content… There must be greater understanding and acceptance of PANDAS/PANS among the medical community.
Pediatric Autoimmune Neuropsychiatric Disorders (PANS) encompasses the whole group of acute-onset cases of OCD or eating restrictions, simultaneous with acute behavioral decline. A PANS diagnosis does not require a known trigger, but it often follows the contraction of or exposure to a variety of agents including: Streptococcus pyogenes, Borrelia burgdorferi, varicella, herpes simplex, common cold, influenza Mycoplasma pneumoniae as well as other non-infectious agents such as environmental factors. PANDAS, a subset of PANS, describes cases with an association with group A Streptococcus infections. PANDAS is based on 5 criteria including acute abrupt onset of OCD and/or severe tics which are often accompanied by comorbid symptoms seen in PANS. “Onset can occur 4-6 months post strep infection if antibiotics did not eliminate the bacteria” (NEPANS). The 4-6 month period between infection and onset is typical but misleading. Most kids diagnosed with group A Streptococcus are able to take antibiotics and wipe out the bacteria. However, with PANS/PANDAS kids, they may appear to be clear…show more content… Without early diagnosis and treatment, it can lead to lifelong mental and physical disabilities. According to Diana Pohlman, executive director of PANDAS Network, a network for parents of children who suffer from the syndrome, “early detection and treatment of PANDAS is key. A child who is treated early can have a complete remission.” (PANDAS Network) This bodes well for informed people, unfortunately, this is a rare disease and many doctors and parents do not know enough about it. “For too long, confusion and a lack of understanding concerning this syndrome have left severely impaired children with few, if any, treatment options. This effort promises an improvement in the quality of care.” (PRWeb). The lack of understanding of the disease is heartbreaking and frustrating. With more understanding will come faster detection and a better quality of life for PANS/PANDAS kids. This lack of understanding is familiar in my sister’s case. The neurologists ultimately in charge of treating her believed that she was suffering from a solely psychiatric illness that she was likely exaggerating (which shows a lack of understanding on the doctors’ behalf). They immediately dismissed the notion that there could be a connection with her simultaneous pneumonia diagnosis and this abrupt and extreme behavior. We later
