Childhood Post-Infectious Neuroimmune Disorders
In this group of disorders, psychiatric illness arises from an organic etiology; symptoms are indicative of an infectious trigger and a misdirected immune system. A child beset by emotional or behavioral symptoms is exhibiting an aberrant response to infection. Often, the underlying cause is missed and, without medical intervention, the child’s functioning deteriorates in school, home, and/or community settings.
Children are frequently misdiagnosed, because of a lack of understanding and awareness, with a litany of psychiatric disorders including: Attention Deficit Disorder, Generalized Anxiety Disorder, Tourette Syndrome, Obsessive Compulsive Disorder, Oppositional Defiant Disorder, eating disorders, and Bipolar Disorder.
PANDAS and PANS
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) was first described at length in 1998 to describe sudden onset of OCD and other physical and behavioral changes in children following streptococcal infection. This disease appears to share many characteristics with Sydenham's Chorea and Autoimmune Encephalitis. Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) shares many similar symptoms but is triggered by an infection or environmental factor other than streptococcus. Neither condition is well understood, and it is imperative for research to move faster to develop much needed therapies for children.
Impact on Families
Families with children experiencing neuroimmune illness have their lives turned upside down. Their previously healthy, happy children change dramatically overnight, or over the course of months. The burden on families is enormous. Based on a survey of 300 MGH families of PANDAS patients, 70% of respondents traveled over 50 miles to obtain medical care for their children. 30% had visited the emergency department at least once due to the severity of their child’s symptoms (with an average of four ER visits), and 20% of respondents reported needing to hospitalize their children. In addition, families spent an average of twenty thousand dollars out-of-pocket for treatments not covered by insurance.
A significant change in emotional and/or behavioral functioning impacting daily life
Obsessive, compulsive, and repetitive behaviors or thoughts
Significant anxiety, including separation anxiety
Fears, phobias, and panic attacks
Depression and/or suicidal thoughts
Explosive rage and aggression
Screaming, irritability, and frequent mood changes
Tics and unusual movements
Learning difficulty or academic regression
Marked decline in handwriting
Inability to retain information
Inattention and hyperactivity
Restricted eating to the point of starvation and weight loss
Frequent urination and bedwetting
Night terrors, insomnia, and other sleep disturbances