No, not the black and white bear. PANDAS is a rare but serious condition that every parent should know about.

PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.” This means a strep infection (i.e. rheumatic fever, strep throat, scarlet fever) can trick a child’s immune system into attacking the child’s own brain (specifically the basal ganglia). This leads to sudden onset OCD and other neuropsychiatric symptoms.

As a mom of a child who has struggled with neurological differences and behavioral challenges, I thought it was important to create a helpful guide for parents everywhere. PANDAS can be scary, but we’re here to support and encourage you.

PANS vs. PANDAS vs. AE

Whereas PANDAS is an autoimmune condition that can follow strep infections, PANS refers to the same set of symptoms with no preceding strep infection. Though PANDAS was named first, it is technically a subset of PANS.

PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) has less research behind it. But when studying PANDAS, researchers found that PANDAS symptoms occasionally showed up in children who hadn’t had a strep infection. Children with PANS may have had the flu, chickenpox, or Lyme disease, but the cause is unclear.

PANS and PANDAS are a smaller subset of autoimmune encephalitis (AE). In AE, your immune system attacks your own brain — just like in PANDAS. Also like PANDAS, researchers discovered AE relatively recently. 

Some types of AE occur more often in adults. Unique AE symptoms include vision loss, limb weakness, and catatonia.

What triggers PANDAS?

We know that strep infections trigger PANDAS, sometimes months after the infection goes away. Note that PANDAS can develop after strep infection, even if the infection went unnoticed.

However, we do not know why some children develop PANDAS and most others do not.

Fortunately, PANDAS is not contagious.

The closely-related PANS may be caused by a number of triggers:

  • Genetics
  • Environmental toxins
  • Family history of autoimmune disorder
  • Mononucleosis
  • Epstein-Barr virus
  • Lyme disease
  • H1N1 flu virus
  • Herpes simplex
  • Varicella (chickenpox)
  • Mycoplasma (walking pneumonia)
  • Bartonella henselae infection

Who can develop PANDAS?

PANDAS affects primarily children between the ages of 1-13, with eight-year-olds at the highest risk. Boys are twice as likely to develop PANDAS than girls.

If a child has a Group A streptococcal infection, PANDAS could follow immediately or could develop a few months after the infection goes away.

A PANDAS diagnosis requires a preceding strep infection. However, PANS is a rarer condition that shares its symptoms with PANDAS, but there’s no strep infection.

Is PANDAS caused by autism? Some symptoms of PANDAS can look like autism spectrum disorder, but they are unrelated conditions. Children with autism are not more or less likely to develop PANDAS.

But it can be difficult to recognize PANDAS in children with autism due to their overlapping symptoms. A key difference is that PANDAS is the sudden onset of symptoms; multiple symptoms appear, often within a day or two of one another, though it can take up to several months in some cases.

Symptoms, Diagnosis & Treatments of PANDAS

If you’re like me, bullet points simplify everything. Here’s the bullet-point version of the symptoms, diagnosis, and treatment of PANDAS.

Symptoms of PANDAS

What are the signs of PANDAS? There are several signs and symptoms, but different children may exhibit slightly different symptoms.

The main symptom of PANDAS is sudden onset OCD. Obsessive compulsive disorder involved both obsessive and compulsive behaviors. Obsessions are “recurrent and persistent thoughts” while compulsions are “repetitive behaviors or mental acts.”

Besides that, PANDAS patients show other PANDAS symptoms — almost overnight. These PANDAS symptoms are grouped into related categories:

  • Eating disorder, restricted eating, body dysmorphia
  • General anxiety, separation anxiety, irrational fears
  • Emotional lability (AKA sudden mood swings), depression, suicidal thoughts
  • Aggression, irritability
  • Behavioral regression, baby talk, loss of ability to draw
  • Drop in academic performance, decreased attention span
  • Night terrors, insomnia
  • Bedwetting, change in urinary frequency or urgency
  • Sensitivity to light, sounds, smells, tastes, and textures
  • Brief hallucinations
  • Dysgraphia (deterioration of handwriting)
  • Clumsiness
  • Physical or vocal tics
  • Sydenham chorea (involuntary muscle movements)

Clinical Diagnosis of PANDAS

To diagnose a child with PANDAS, a doctor will need to follow a few criteria:

  • The child experienced OCD or an eating disorder within months after a strep infection. Doctors will often test for strep infection with a throat culture or blood tests, though PANDAS can  manifest after the initial infection is gone and these tests won’t always come back positive.
  • The child exhibited at least two other PANDAS symptoms.
  • Other neurological conditions have been ruled out, such as lupus, Tourette syndrome, bipolar disorder, or autoimmune encephalitis.

Is PANDAS a real diagnosis? While conventional medicine has been slow to acknowledge PANDAS, it is a real and frequently debilitating condition. It’s hard to research, though — because it’s so rare, there’s not a big pool of subjects to pull from. (To which we say hallelujah! It’s a rough experience for any family.)

However, the US National Institute of Mental Health features an article about PANDAS and many mainstream practitioners also recognize it, which they didn’t just a short time ago. 

Treatment of PANDAS

Several treatment options exist for PANDAS patients:

 

 

At the M Center, we do not recommend SSRIs (selective serotonin reuptake inhibitors) or steroid therapy because many children will experience harmful side effects to these treatments. We also prefer to use herbal antibiotics and antiinflammatories instead of traditional. 

We do suggest a multidisciplinary approach, incorporating the best combination of treatment options for your individual child.

Discuss with your physician potential side effects of these treatments, as well as how comfortable your child would be with the more invasive treatments.

Can a child outgrow PANDAS? In many cases, when the strep infection goes away, PANDAS will subside within a few weeks. However, sometimes, PANDAS will not go away on its own. Children can have a relapse of symptoms every few months for years. PANDAS usually doesn’t return after the child becomes an adult. 

Working with Your Pediatrician

PANDAS is a rare condition, making it important to work with a doctor who is familiar with PANDAS symptoms, diagnosis, and treatment.

If your normal pediatrician is unfamiliar or uncomfortable with PANDAS, you have options!

If you suspect your child has PANS/PANDAS, it’s important to work with a pediatrician you can trust. Contact The M Center in Roswell, GA for a consult today.

If you live outside Georgia, there are several resources to find functional doctors and integrative specialists who are well versed in PANDAS. The PANDAS Network and the PANDAS Physicians Network both have searchable databases of PANDAS physicians.

In Summary

  • What is PANDAS? “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections” is when a Group A strep infection seems to trick a child’s immune response into attacking the child’s own brain. This causes OCD symptoms to develop almost overnight, along with other related symptoms.
  • PANDAS is a subset of PANS. PANS refers to the same symptoms but in the absence of a Group A strep bacteria infection.
  • PANDAS should not be confused with autoimmune encephalitis (AE). PANDAS and AE have similar symptoms. However, AE affects adults as well as children and includes some unique symptoms.
  • PANDAS is triggered by a Group A strep infection. It is rare. Not all children are affected, but children are most susceptible at the age of eight. Also, boys are twice as likely to develop PANDAS than girls.
  • Symptoms include:
    • OCD or an eating disorder
    • Irrational fears
    • Mood swings
    • Aggression
    • Behavioral regression
    • Drop in academic performance
    • Night terrors, insomnia
    • Bedwetting
    • Sensitivity to light, sounds, smells, tastes, and textures
    • Deterioration of handwriting
    • Physical or vocal tic disorder
    • Chorea
  • Diagnosis and treatment should include a doctor who is familiar with PANDAS and willing to work with parents to develop a treatment that works for everyone.

Sources

  1. 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
  2. Breitschwerdt, E. B., Greenberg, R., Maggi, R. G., Mozayeni, B. R., Lewis, A., & Bradley, J. M. (2019). Bartonella henselae bloodstream infection in a boy with pediatric acute-onset neuropsychiatric syndrome. Journal of central nervous system disease, 11, 1179573519832014. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6423671/
  3. 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/
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  9. Delaney, S., & Hornig, M. (2018). Environmental exposures and neuropsychiatric disorders: what Role does the Gut–immune–brain axis play?. Current environmental health reports, 5(1), 158-169. Abstract: https://www.ncbi.nlm.nih.gov/pubmed/29423662
  10. 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., Thienemann, M., Pearlstein, J., Crable, A., Brown, K., & Chang, K. (2015). Multidisciplinary clinic dedicated to treating youth with pediatric acute-onset neuropsychiatric syndrome: Presenting characteristics of the first 47 consecutive patients. Journal of child and adolescent psychopharmacology, 25(1), 38-47. Full text: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340335/