As a parent, one of the scariest experiences of my life was seeing my child wake up with OCD symptoms virtually overnight. Separating food, acting aggressively, losing the ability to get to sleep, facial tics – these are just a few symptoms of PANS/PANDAS.
We have walked through these with our own child, and it led us to become experts in PANS and PANDAS, two closely related issues that share the same symptoms and treatment options.
In this article, we will provide a short overview of these two often-overlooked autoimmune disorders, followed by our research regarding testing options to help facilitate a diagnosis.
We know firsthand that having a child with PANS or PANDAS is frightening and isolating. We look forward to sharing the hope we have found with patients who are facing the same experience.
PANS stands for “Pediatric Acute-Onset Neuropsychiatric Syndrome.”
PANDAS stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.” PANDAS is technically a subset of PANS, even though PANDAS was identified first.
PANDAS happens when a Group A strep infection (such as scarlet fever, strep throat, or rheumatic fever) seems to trick a child’s immune system into attacking their own brain, specifically the basal ganglia. This leads to sudden onset OCD and other mental health symptoms.
PANS is basically the same autoimmune disorder, but the sudden onset of symptoms occurs in the absence of a strep infection. There is less known about what can trigger PANS, but some suspected PANS triggers include:
PANS/PANDAS typically affects children between 3 years old and puberty. Boys are twice as likely as girls to develop PANDAS.
Until recently, very little was known about PANS/PANDAS. Doctors often mistook the symptoms for mental illness, or even attributed the multitude of behavioral symptoms to “bad parenting” or poor discipline at home. This is not the case!
We know now that PANS/PANDAS is far more prevalent than first thought. In fact, some adults with OCD and anxiety represent “missed cases” of PANS/PANDAS during childhood.
Signs of PANS/PANDAS include the sudden onset of food restrictions, extreme anxiety, aggression, behavioral or learning regression, sensory abnormalities, and somatic symptoms such as night terrors or bedwetting.
If you suspect your child may have PANS or PANDAS, our article about the symptoms and signs is a good place to start. If you are ready to progress to a formal diagnosis and need advice about how to proceed, please read on.
One of the reasons the medical community struggled to acknowledge and treat PANS and PANDAS for so long is because it cannot be diagnosed with a single blood test or scan. It requires expert clinical knowledge to make a formal diagnosis, and that knowledge was missing in the broader medical population for many years.
Even now, you may encounter ignorance from your own pediatrician or family medical clinician. If you need help, we have shared the medical research supporting PANS and PANDAS as a clinical reality.
Now that we’ve gotten the word out about the signs and symptoms of PANS and PANDAS, we’ve decided to address one of the most common questions that we get about diagnosing these disorders: What tests should be performed to confirm a diagnosis of PANS or PANDAS?
It’s a question we receive not only from parents of PANS/PANDAS patients, but also from other physicians who have just begun seeing these children.
The simplest (and most correct) answer to the question of what lab or imaging abnormalities are required to make the diagnoses of PANS or PANDAS is “none.”
A correct diagnosis of PANS or PANDAS can be made based solely upon behavioral changes and neurologic signs identified during a careful, thorough history and physical exam by a PANS/PANDAS specialist.
You may have been told by a physician new at treating PANS and PANDAS that a negative or normal test (like a strep culture, ASO test, or Cunningham panel, for example) rules out PANS and PANDAS – nothing could be further from the truth! Testing may support the diagnosis of PANS or PANDAS, but it is not absolutely required.
We want to emphasize that taking a very careful history in these cases is the key to diagnosis. Secondly, every patient requires a hands-on physical examination by a physician well-versed in PANS and PANDAS to ensure the symptoms are not the result of other serious medical conditions, including rheumatic fever or acute brain infections.
However, we also understand that labs and imaging are of value and can help offer additional information for PANS/PANDAS patients. We want to do everything we can to help remove the confusion and frustration felt by parents of children with PANS and PANDAS.
Below is a comprehensive list of the tests we most often recommend. Please keep in mind that your child is extremely unlikely to need all of these, and again, technically none of them are required for the initial diagnosis.
If you need more information about any of these tests, including why they might be required, how they are administered, and what results we typically look for, please download our free guide, What You Need to Know about Testing in PANS and PANDAS.
It offers an expanded version of this article with 16 pages of detailed help, and you can download it now by entering your name and email address below. (We will never sell or share your information, and we will only contact you with helpful medical insights and research.)
Testing for Strep infection
Testing for Other Infections
Testing the Immune Response
Other Laboratory Testing
EEG Testing and Brain Imaging
We hope you have found this information helpful. Once again, please remember that PANS and PANDAS are diagnosed clinically. Testing should be used to support the clinical diagnosis, make sure nothing else is causing these symptoms, and identify specific causes to help focus your child’s treatment.
We have both the academic knowledge and clinical experience to solve this medical mystery and help you find your child again. If you would like your child to be seen in our Carmel, Indiana, practice by Dr. Scott Antoine or want to find out more about our comprehensive online program, Defeating PANS and PANDAS, please call our office at (317) 989-8463 or see Becoming a Patient.
Sources
Strep:
https://www.cochrane.org/CD010502/ARI_what-performance-rapid-tests-diagnosis-strep-throat-children
https://jcm.asm.org/content/44/7/2593
https://www.aafp.org/afp/2005/0315/p1064.html#afp20050315p1064-b1
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5035405/pdf/zjm2413.pdf
https://www.ncbi.nlm.nih.gov/books/NBK532707/
https://www.ncbi.nlm.nih.gov/books/NBK374206/
https://academic.oup.com/jpids/article/3/4/336/909914
https://academic.oup.com/jid/article/188/6/809/943043
Mycoplasma:
https://www.cdc.gov/pneumonia/atypical/mycoplasma/index.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4442568/
https://journals.sagepub.com/doi/abs/10.1177/0883073807308714
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5997415/pdf/jocmr-10-535.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193707/
Lyme and other tick-borne infections:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/
https://ajp.psychiatryonline.org/doi/abs/10.1176/ajp.151.11.1571?journalCode=ajp
https://www.rheumatologyadvisor.com/home/topics/lyme-disease/diagnosing-lyme-disease-in-children-with-neuropsychiatric-illness/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6423671/pdf/10.1177_1179573519832014.pdf
https://www.sciencedirect.com/science/article/abs/pii/S0193953X05700320
Epstein Barr Virus:
https://www.vinehealthcare.com/2018/02/28/reactivated-epstein-barr-virus-need-know/
https://www.cdc.gov/epstein-barr/hcp.html
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747270/pdf/PNB-29-88.pdf
https://academic.oup.com/jid/article/179/4/1012/887564
https://journals.sagepub.com/doi/abs/10.1177/088307380001501204
https://cmr.asm.org/content/24/1/193
Candida:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5373951/pdf/nihms834479.pdf
https://www.nature.com/articles/npjschz201618
Mycotoxins:
https://mouldgone.com/wp-content/uploads/2018/10/Mold-and-Mycotoxins-Effects-on-the-Neurological-and-Immune-Systems-in-Humans.pdf
https://www.clinicaltherapeutics.com/article/S0149-2918(18)30229-7/fulltex
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