Neuroimmune disorders refer to a group of illnesses that are the result of acquired dysregulation of both the immune system and the nervous system, most often resulting in chronic illness and disability.
One such disorder, Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) researchers suspect may be a result of infections and/or environmental triggers that cause abnormal activation of the immune system, which then attacks neuronal cells, most commonly understood as postinfectious autoimmune encephalopathy and neuroimmune activation.
Children with PANS present with a mix of neuropsychiatric symptoms including:
- OCD and/or Tics
- Emotional lability and/or depression
- Irritability, aggression and/or severely oppositional behaviors
- Behavioral (developmental) regression
- Deterioration in handwriting or math skills
- Sensory or motor abnormalities
- Sleep disturbances
- Enuresis or urinary frequency
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) is a subset of PANS. Unlike PANS, in which the trigger is not easily identified, diagnosis of PANDAS requires association with a streptococcal infection.
Are PANS, PANDAS, and Autoimmune Encephalopathy rare?
According to Dr. Susan Swedo, Chief Investigator at the NIMH, at least one in 250 children is impacted by PANS.
Based on findings related to the prevalence of pediatric mental health disorders published in the American Academy of Child and Adolescent Psychiatry and estimates from the National Institute of Mental Health PANS Research Consortium, there may be up to 4.6 million children in the United States who are affected by Pediatric Autoimmune Neurological Disorders. However, many children are frequently misdiagnosed with Tourette’s, OCD, generalized anxiety disorder, depression, bipolar, oppositional defiant disorder, mood disorder, conduct disorder, anorexia, autism, and even childhood schizophrenia despite the fact they could be successfully treated with full restoration of their mental health.
How are neuroimmune disorders treated?
Treatment protocols to address neuroimmune disorders are still evolving. However, the long awaited Standards of Care for PANS/PANDAS were published in the 2017 special edition of Journal of Child and Adolescent Pharmacology. All practitioners should refer to these protocols established by the National Institute of Mental Health’s PANS/PANDAS Research Consortium, a group of clinicians and researchers from the most prestigious universities across the country, including Stanford, Georgetown, Harvard, Mass General, Columbia, Steele Research Center, Yale etc. when trying to navigate the path forward for these specific syndromes.
Medical professionals are highly encouraged to sign up with the PANDAS Physicians Network to keep up-to-date with the latest research and information.
2017 Standards of Care for PANS/PANDAS:
I think my child may have a neuroimmune disorder. Now what?
If you are a parent who suspects your child may be suffering from PANS/PANDAS or similar neuroimmune disorders, then you should consult your child’s pediatrician. The earlier the treatment is started, the better the long term outcome. Many physicians are not familiar with PANS/PANDAS and may not fully understand the link between infections and psychiatric illness, therefore we recommend you download this diagnostic flow chart from the Pandas Physicians Network and bring it with you to your appointment.
You can also direct your child’s medical team to the National Institute of Mental Health, the PANDAS Physicians Network, or the Children’s Postinfectious Autoimmune Encephalopathy Center of Excellence at Steele Research Center for further information regarding diagnosis, treatment, and ongoing research studies.
If you feel your child may be suffering from this disorder, make sure your medical team takes you seriously. It is said that on average, children may suffer for 3 years and see approximately 8 providers before they receive a proper diagnosis.
Trust your intuition. If you think you’re child may be suffering from a similar neuroimmune disorder as PANS/PANDAS such as chronic lyme, celiac induced encephalopathy, or an autism spectrum disorder, consult the leading associations related to the suspected neuroimmune disorders for more information.
Please note: We are not medical professionals and this is not intended as medical advice. Please consult your doctor for questions related to your child’s health.