CHARACTERISTICS OF PANDAS
PANDAS onset is abrupt. This is a defining feature. The symptoms do not appear gradually, rather will often explode onto the scene and even continue to ramp up over days or even weeks. Some children however, have this abrupt onset when they are extremely young and it can be mistaken or missed.
PANDAS symptoms have a relapsing and remitting course. Symptoms may disappear as suddenly as they came on or they may trickle down slowly over 6-8 weeks, only to return at some future moment. After the first flare or two or three, the child will typically return fully to baseline. However, over time, for some children that remain untreated, they may not return to their pre-PANDAS self due to underlying persistent brain inflammation. This can make diagnosis more confusing.
PANDAS symptoms occur subsequent to an illness or exposure to a strep infection, even with a negative strep test. PANS is when the infection or immune trigger is something other than strep, such as lyme infection, some viruses, mold, and others.
PANDAS symptoms vary child to child, and may even be different each time a child goes through an exacerbation (flare).
The National Institutes of Mental Health defines PANDAS in this way:
1. Sudden onset of obsessive-compulsive disorder (OCD) including severely restricted eating for any reason, and/or motor tics,
2. PLUS, additional neuro-psychiatric symptoms from at least 2 out of the following 7 categories:
Anxiety (particularly and often profound separation anxiety)
Emotional lability (extreme mood swings) and/or depression
Irritability, aggression and/or severely oppositional behaviors
Behavioral regression, loss of developmental milestones, or acting younger than their age (examples, talking baby talk, throwing temper tantrums, loss of toileting, etc)
Deterioration in school performance
Sensory sensitivities or motor abnormalities such as a decline in child's coordination or handwriting
Somatic signs and symptoms, including sleep disturbances, bedwetting or urinary frequency
DOES MY CHILD HAVE PANDAS?
PANDAS and PANS are what is termed "clinical diagnoses".
This means that the primary way your provider can determine whether your child has PANDAS/PANS is through a thorough history, physical exam, and if your child meets the above criteria, rather than relying upon testing.
At this point in time, testing is somewhat nebulous.
Due to the potentially serious nature of any sudden change in a child's neurological status, we often recommend that the child have a full neurological evaluation that may include an EEG, MRI and possibly a lumbar puncture to rule out things like seizures, tumors. Throat and nasal cultures and blood tests (ASO, anti-DNAse B and streptozyme) should always be done to determine a recent strep exposure, however, it can take several weeks for blood antibodies to rise after an exposure, so in the moment they are not always helpful. In addition, some children do not produce blood antibodies even with a known strep infection (positive throat culture, for example). So the tests are not 100% reliable.
Dr. Madelyn Cunningham's lab panel through Moleculera Labs, at the University of Oklahoma, measures four cross-reactive antibodies that have been found in the brains of children with PANDAS, and a signaling protein signifying blood brain barrier disruption. Some insurance companies will pay in part for this test, and during an initial or acute exacerbation is the most useful. Please look on moleculeralabs.com for information about this test and CPT codes you can run by your insurance company to check for coverage ahead of time.
Additional tests are run to determine whether other significant infections are present, to look for auto-immune illness, inflammation, and evaluate the child's overall immune status. We will make this determination based on your child's history and symptoms. Most of it can be run through insurance. This may include testing the family for strep and other infections the child tests positive for, to prevent an infection from continuously being passed back and forth at home, making it impossible for the child to fully recover.
No Stone Unturned
In our office, we may also screen for additional immune triggers such as exposures to chemicals, metals or mold, food allergies, gluten issues, hidden sinus infections or others depending upon your child's history, just to leave no stone unturned.
Integrative Medical Institute of Orange County
The MOST INFORMATIVE gathering of PANDAS related information, including SCHOOL and legislative toolkits, provider information and links to research and journal articles.
PANDAS Physician Network
A growing database of information geared specifically towards educating medical providers.
**For the MOST RECENT ARTICLES about PANDAS Treatment and IVIG, see this:
Access to the JCAP Special Issue on PANDAS, Feb 2015
MY KID IS NOT CRAZY - Emmy Award Winning Documentary about PANDAS
Moleculera (Cunningham panel) Website (extensive educational video library)
Foundation for Children with Neuroimmune Disorders
Northwest PANDAS/PANS Network
New England PANS/PANDAS Association
Southeastern PAN/PANDAS Association
International OCD Foundation
Stanford PANS Clinic
Talk About Curing Autism Now
National Institutes of Mental Health
Dr. Miraslov Kovacevik Website
- Excellent summary of PANDAS by Dr. K, early PANDAS provider, researcher and pioneer
Brief History of PANDAS
Amy’s Blog / Life with Lance and PANDAS