The National Institute for Mental Health finally recognizes PANDAS on its website. Though rare and only recently discovered, PANDAS is covertly making children into different people — sometimes overnight!
PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections.” This describes a rare condition where a strep infection (like scarlet fever, strep throat, or rheumatic fever) tricks a child’s immune system into attacking the child’s own brain (specifically, the basal ganglia). This leads to sudden onset OCD and other related symptoms.
PANS is a broader condition, describing the same symptoms but without the precondition of a strep infection. It stands for “Pediatric Acute-Onset Neuropsychiatric Syndrome.”
Though rare, it is important for parents to understand how a qualified pediatrician would arrive at a PANS/PANDAS diagnosis.
If you’re in Georgia and recognize these patterns in your child, contact us to set up an appointment.
When a Child Develops PANS or PANDAS…
Not all children with strep throat will develop PANDAS — fortunately, it’s pretty rare. But if your child’s personality dramatically changes within a few days to a few months, it’s possible PANDAS is to blame.
PANS/PANDAS can develop in children ages 1-13. Children are at their highest risk around the age of eight, and boys develop it twice as often.
Is PANDAS a mental illness?
The group A beta-hemolytic streptococcal infections trick a child’s immune response into attacking the the child’s own brain. While it does impact the brain and result in a mental illness (OCD), the condition itself is a physical one because of the infection that causes it.
Many of the symptoms of PANDAS are physically visible. The best way to classify PANDAS is as an autoimmune neuropsychiatric disorder.
How does PANDAS affect the brain?
The child will develop OCD symptoms: obsessions (persistent thoughts) and compulsions (involuntarily acting upon the obsessions).
OCD can manifest in many different forms, such as an eating disorder or anxiety.
Diagnostic Criteria
In 2010, a group of experts on the subject (including famed PANDAS researcher Dr. Susan Swedo) convened and determined the diagnostic criteria for PANS/PANDAS.
- The child must present symptoms of abrupt onset OCD (also called obsessive compulsive disorder). They emphasize “abrupt” — symptoms that arise over the course of one or two days — but some of our patients have seen the condition occur over the course of months.
- The child must show at least two other sudden onset symptom categories.
What are the symptoms of PANDAS?
- General anxiety, separation anxiety, irrational fears
- Emotional lability, depression, suicidal thoughts
- Irritability, aggression, oppositional behaviors
- Developmental regression (baby talk, losing the ability to draw)
- Drop in academic performance
- Motor abnormalities, such as physical/vocal tics or Sydenham chorea
- Somatic symptoms, like insomnia or bedwetting
- These neuropsychiatric symptoms can’t be better explained by another medical condition, such as autoimmune encephalitis, ADHD, or autism.
Diagnosing PANDAS
How is PANDAS diagnosed? There are essentially two differences between a PANDAS diagnosis and a PANS diagnosis.
- A PANDAS diagnosis requires a Group A strep infection to have occurred. Sometimes, the strep infection is ongoing. Sometimes, it is weeks or even months since the strep infection went away. A qualified pediatrician will use a blood tests or a throat culture to test for strep bacteria, but it’s possible to develop PANDAS after the infection isn’t testable anymore.
- PANDAS affects children ages 1-13. Because almost all children grow immunity to strep infection when they hit puberty, PANDAS is essentially nonexistent in those over 12 years old.
Diagnosing PANS
PANS is diagnosed only slightly differently from PANDAS.
A child does not need to have had an infection involving Streptococcus pyogenes to be diagnosed with PANS.
PANS may be related to any number of infections or medical conditions:
- Chickenpox
- Influenza
- Lyme disease
- HHV6 (Human Herpes Virus)
- Epstein-Barr virus / Mononucleosis
- Mycoplasma (walking pneumonia)
- Lyme / Bartonella henselae bacterial infection
- Toxin exposure (mold/mycotoxins)
- Emotional trauma or stress
According to the PANDAS Network, 70% of PANDAS patients have a family history of autoimmune illness.
Theoretically speaking, PANS is also not limited by age in the same way PANDAS is. PANDAS is generally limited to children ages 1-13 because mostly everyone grows immunity to strep bacteria when they hit puberty.
Though it is not well documented, PANS could technically affect anyone with the risk factors I mentioned above.
Are PANS & PANDAS treatable?
Once your child receives a clinical diagnosis of PANDAS, it’s time to learn your treatment options.
Treatment options for PANS/PANDAS include:
- Cognitive behavioral therapy
- Plasma exchange, AKA plasmapheresis
- Intravenous immunoglobulin (IVIG) (this is an expensive treatment and works “downstream” of the infection, so it’s not one we generally recommend)
- Removal of tonsils
- Peptide therapy
- Dietary changes (we suggest the GAPS diet or Buhner’s protocol)
- Vitamin D, if there is a deficiency
- Antibiotics (we suggest all-natural herbal antibiotics)
- Anti-inflammatories (preferably all-natural varieties as well, due to the risks involved)
We don’t prescribe SSRIs (selective serotonin reuptake inhibitors) because they don’t work well and have unacceptably poor side effects, especially in kids.
In Summary
- What is PANDAS? PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorder Associated With Streptococcal Infections.”
- What is PANS? PANS stands for “Pediatric Acute-Onset Neuropsychiatric Syndrome.”
- What are the symptoms of PANS/PANDAS?
- Obsessive and compulsive behaviors (also known as OCD), eating disorders
- Anxiety
- Emotional lability
- Developmental regression
- Poor school performance
- Sensory/motor abnormalities
- Sleep disturbances, changes in urinary frequency
- How would a pediatrician arrive at a PANDAS diagnosis?
- Identify OCD symptoms, including an eating disorder
- At least two other PANDAS symptom categories apply
- Cannot explain symptoms with another mental health disorder, such as Tourette syndrome, a chronic tic disorder, or Sydenham’s chorea
Sources
- Swedo, S. E., Leckman, J. F., & Rose, N. R. (2012). From research subgroup to clinical syndrome: modifying the PANDAS criteria to describe PANS (pediatric acute-onset neuropsychiatric syndrome). Pediatr Therapeut, 2(2), 113. Full text: https://pdfs.semanticscholar.org/18d2/35883c50806ae7a618586571d24a90bfe490.pdf
- Chang, K., Frankovich, J., Cooperstock, M., Cunningham, M. W., Latimer, M. E., Murphy, T. K., … & Swedo, S. E. (2015). Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. Journal of Child and Adolescent Psychopharmacology, 25(1), 3-13. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340805/
- Pavone, P., Parano, E., Rizzo, R., & Trifiletti, R. R. (2006). Topical review: autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants. Journal of child neurology, 21(9), 727-736. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/16970875
- Murphy, T. K., Patel, P. D., McGuire, J. F., Kennel, A., Mutch, P. J., Parker-Athill, E. C., … & Dadlani, G. H. (2015). Characterization of the pediatric acute-onset neuropsychiatric syndrome phenotype. Journal of child and adolescent psychopharmacology, 25(1), 14-25. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340632/
- Thienemann, M., Murphy, T., Leckman, J., Shaw, R., Williams, K., Kapphahn, C., … & Elia, J. (2017). Clinical management of pediatric acute-onset neuropsychiatric syndrome: part I—psychiatric and behavioral interventions. Journal of child and adolescent psychopharmacology, 27(7), 566-573. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610394/
- Latimer, M. E., L’Etoile, N., Seidlitz, J., & Swedo, S. E. (2015). Therapeutic plasma apheresis as a treatment for 35 severely ill children and adolescents with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of child and adolescent psychopharmacology, 25(1), 70-75. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340509/
- Kovacevic, M., Grant, P., & Swedo, S. E. (2015). Use of intravenous immunoglobulin in the treatment of twelve youths with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of child and adolescent psychopharmacology, 25(1), 65-69. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340809/
- Heubi, C., & Shott, S. R. (2003). PANDAS: pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections—an uncommon, but important indication for tonsillectomy. International journal of pediatric otorhinolaryngology, 67(8), 837-840. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/12880661/
- Stagi, S., Lepri, G., Rigante, D., Matucci Cerinic, M., & Falcini, F. (2018). Cross-sectional evaluation of plasma vitamin d levels in a large cohort of italian patients with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Journal of child and adolescent psychopharmacology, 28(2), 124-129. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/29112476
- Frankovich, J., Swedo, S., Murphy, T., Dale, R. C., Agalliu, D., Williams, K., … & Muscal, E. (2017). Clinical management of pediatric acute-onset neuropsychiatric syndrome: part II—use of immunomodulatory therapies. Journal of Child and Adolescent Psychopharmacology, 27(7), 574-593. Full text: https://pdfs.semanticscholar.org/80c8/5251f9d992b525083f3442ebb75762a65d66.pdf
- Brown, K. D., Farmer, C., Freeman Jr, G. M., Spartz, E. J., Farhadian, B., Thienemann, M., & Frankovich, J. (2017). Effect of early and prophylactic nonsteroidal anti-inflammatory drugs on flare duration in pediatric acute-onset neuropsychiatric syndrome: an observational study of patients followed by an academic community-based pediatric acute-onset neuropsychiatric syndrome clinic. Journal of child and adolescent psychopharmacology, 27(7), 619-628. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749580/
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