Diagnosing PANDAS/PANS: A Closer Look
PANDAS and PANS is a clinical diagnosis based on the collection of signs, symptoms, medical history and laboratory findings that cannot be explained by any other neurological or medical disorders. Currently, there is not a 100% definitive test for PANDAS or PANS.
Find latest clinical research here.
The hallmark trait for PANDAS is a sudden acute and debilitating onset of intense anxiety and mood lability accompanied by obsessive compulsive-like issues or tics in association with a streptococcal-A (GABHS) infection that has occurred immediately prior to the symptoms. In some instances, the onset will be four to six months after a strep infection because the antibiotics did not fully eradicate the bacteria. Many pediatricians do not know the latent variability of strep—rheumatologists and streptococcal experts do.
When strep cannot be linked to the onset of symptoms, the NIMH states one should look into the possibility of PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).
The acute onset means a Y-BOCS (Yale-Brown Obsessive Compulsive Scale) score of >20 or a chronic tic disorder YGTSS (Yale Global Tic Severity Scale), often with multiple tics. Below are the symptom criteria for PANDAS. Additional symptoms may be present.
A clinical diagnosis of PANDAS is defined by the following criteria:
- Presence of significant obsessions, compulsions or tics.
- Abrupt onset of symptoms or a relapsing-remitting course of symptom severity.
- Pre-pubertal onset.
- Association with streptococcal infection.
- Association with other neuropsychiatric symptoms.
PANS is a clinical diagnosis.
- Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
- Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
- Emotional lability or depression
- Irritability, aggression or severely oppositional behaviors
- Behavioral (developmental) regression
- Deterioration in school performance
- Sensory or motor abnormalities
- Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency.
- Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham’s chorea, systemic lupus erythematosus, Tourette disorder or others.
PANDAS/PANS Consortium Guidelines Parts 1, 2 & 3 for Parents and Doctors
2020 American Academy of Neurology Guidelines for Parent & Doctor
Initial Diagnostic Work-Up for the Child
If you suspect your child has PANDAS or PANS, the following labs, in addition to completing the symptom scales, can help aid your medical provider in making a proper diagnosis. A printable PDF of basic blood work can be found here.
Basic Blood Work
- IgG (subclass 1, 2, 3, 4)
- Ferritin (iron)
- Vitamin D
- Strep throat culture, 48-hour culture or perianal culture
- Antistreptolysin O (ASO), group A strep
- Anti DNase B
- Mycoplasma Pneumoniae IgA & IgM
- Pneumococcal Antibody Titers
- Lyme disease and co-infections
- Epstein Barr Virus Panel
- Coxsackie A & B Titers
- HHV-6 Titers
Cunningham Panel* – autoimmune autoantibody levels: Dopamine D1 receptor, Dopamine D2L receptor, Lysoganglioside GM1, Tubulin and CaM Kinase II.
The Complexity of Strep
Over half of strep infections are missed in young children.
According to the Hysmith et al (2017) study, 65% of new strep infections by group A strep caused no symptoms yet were immunologically significant. Because of this, it is worthwhile to do a blood test to look for strep or a 48-hour culture.
Strep throat is very common in children. Typically, the symptoms are fever, sore throat and white spots on the tonsils. Some children present with an upset stomach, headaches and more. Additionally, some people may not exhibit any symptoms. For PANDAS children, the behavior changes are an indication of a possible infection.
New research from Georgetown University indicates that sometimes tonsil and adenoid surgery is helpful, but the science behind it is still being investigated and is not yet determined. Caregivers for 66% (n=33) of surgical patients identified tonsillectomy and adenoidectomy as the most effective treatment, and 80% would choose that operation again (read the research paper here). A new 2020 Georgetown study recruiting 20 PANDAS children is underway to further identify autoimmune cells in tonsil tissue.
Early research shows that there are autoimmune cells in the tonsil tissue that could drive neuropsychiatric symptoms (read the research here). Research also shows improvement in eight patients following the resolution of sinusitis (read the research here).
Strep in Other Places of the Body
In addition to the throat, strep can occur in the sinuses, the ears, the gut, on the skin and in the vagina and peri-anal areas. A throat swab will not give you a positive result for strep that is occurring somewhere else in the body.
Strep Swab Rapid Test and Culture
A throat swab is the easiest and least invasive way to test for strep throat. If the child tests positive, treatment can begin quickly, and the correlation between strep and the onset of symptoms can begin to be investigated.
If an in-office strep swab renders a negative test result, make sure your office also cultures a swab, since there is a 15–20% chance for a false negative rapid test. Some offices will only do this upon request.
If your child or a family member tests positive for strep, schedule a follow-up strep test two weeks after finishing all antibiotics.
Testing Family Members
It is important to swab all family members to be sure no one is asymptomatic when infected or is a possible strep carrier. Carriers will often not show any strep symptoms, but if tested, they will be positive for strep. A carrier will need one or two doses of antibiotics to rid themselves of strep. Testing family members will lower your child’s chances of being reinfected. Also, some PANDAS children even react to exposure to strep.
Normal titers do not always mean strep is not present, and this is not well understood.
Also, according to the Shet et al. (2003) study:
- Only 54% of children with strep showed a significant increase in ASO.
- Only 45% showed an increase in anti–DNase B.
- Only 63% showed an increase in either ASO and/or anti–DNase B.
In short, this means that not all people who have strep will have a rise in titers.
This is a natural process by which the human body is attempting to rid itself of strep bacteria. It is the causative factor for rheumatic fever and other virulent strep illnesses—and probably initially with PANDAS.
Even though strep is the most cited trigger for PANDAS and PANS, other bacteria, viruses and environmental factors can also create a misdirected immune response.
Examples of Non-Strep Infectious Triggers
- Mycoplasma Pneumoniae: Mycoplasma pneumoniae is also known as walking pneumonia.
- Staph Infections: Staph can occur in multiple places in the body: On the skin, in the nose, and it has even been found in the biopsy results on tonsils post-tonsillectomy.
- Lyme Disease: The Traditional Western Blot should be done when Lyme is suspected. The Igenex Lyme test shows antibodies that MAY be present. Approach Igenex testing with a doctor who looks at this from a comprehensive understanding of the immune system and PANDAS/PANS.
- Coxsackie Virus.
- Epstein-Barr Virus.
- Herpes Simplex Virus.
Other Possible Triggers
Once the autoimmune process is in place, other things may worsen or trigger symptoms in PANDAS/PANS children. Not every child will react to non-strep triggers. If your child is experiencing a flare of symptoms and no infection is present, the following are some possible suspects:
- Exposure to Illness: In PANDAS and PANS children, sometimes exposure to an illness can trigger symptoms.
- Allergies: This includes seasonal allergies.
- Diet: Some families find changing the child’s diet helps. This may include clean eating and eliminating certain foods such as gluten, dairy, etc.
- Yeast Overgrowth: Antibiotics run the chance of also killing off the good bacteria in their body. This could result in an overgrowth of yeast or candida, which can occur in multiple places in the body, including the gut. If you suspect yeast overgrowth, discuss this with your provider.
Some children with PANDAS or PANS may have underlying immunodeficiencies. The following tests are used in making that diagnosis. A clinical diagnosis of IgG deficiency may allow for insurance coverage for IVIG.
- CD4: This test measures a generally over-reactive immune response.
- IgG Subclass 1, 2, 3, 4 for total immunoglobulin levels.
- IgA and IgM.
For an explanation of possible deficiencies, please reference IgG Subclass Deficiency and Specific Antibody Deficiency.
A pediatric neurologist requests an MRI. See the following for information on MRI as it relates to these disorders: Brain scan abnormalities found in children with PANS (experimental MRI only, not available for patients).
A few children have been found to have irregular EEGs. This could be PANDAS or some other frontal lobe seizure issue, which can create separate psychological or physical issues.
An EEG is also something to look into if a child experiences sleep abnormalities. A sleep study that results in abnormal findings may expedite receiving treatment.
PET or CT Scan
These are occasionally ordered—especially in the cases of young adults—but are not recommended in most children.
The study, “Basal ganglia inflammation in children with neuropsychiatric symptoms” by Drs. Kumar, Williams, Musik and Chugani, shows a significant difference in brain inflammation patterns between PANDAS.
The Cunningham Panel™ of tests determines the “likelihood of the patient’s condition being autoimmune in nature,” including possible PANDAS and PANS. The test measures five assays and is commercially available by Moleculera Labs.
Dr. Cunningham’s research, which led to this test, measured cross-reactive antibodies that are elevated in a PANDAS child’s brain. Many children get assistance with PANDAS treatment from immunologists if the results of this blood test indicate PANDAS-like antibody levels.
Physicians: To order The Cunningham Panel™ of tests within the U.S., visit www.moleculeralabs.com.
Learn More About PANDAS
PANDAS Signs and Symptoms
Learn more about the signs and symptoms associated with PANDAS and PANS, as well as the scales in which they fall for aligning with the diagnosis of this disorder.
When PANDAS/PANS is treated early and in a timely fashion, it can remit entirely. Treatment involves addressing both the physical and psychiatric symptoms. Early treatment of PANDAS is important when reducing the duration and intensity of a patient’s symptoms.
Frequently Asked Questions
As awareness and research of PANDAS continue to grow, parents, clinicians, caretakers and supporters tend to ask the following questions frequently.
Help us continue to support the children and adults living with PANDAS/PANS.