Despite its acknowledgement by the National Institute of Mental Health two decades ago and the estimated one in 200 children it impacts, proper recognition, diagnosis, and treatment of PANDAS and PANS continues to be an uphill battle for parents and their suffering children. One third of children see more than five doctors before being correctly diagnosed . Diagnoses of Tourette’s, OCD, generalized anxiety disorder, depression, bipolar, oppositional defiant disorder, mood disorder, conduct disorder, anorexia, autism, and even childhood schizophrenia are the norm. Prompt and accurate diagnosis remains the exception to the rule. More often than not, savvy and determined parents are ultimately responsible for their child’s relief from symptoms.
If you’ve wondered whether or not your child might have PANS but been dismissed by medical professionals or ruled it out in your own mind after researching, here are some myths you should be aware of.
Myth 1: PANDAS/PANS is controversial.
Even the most sound advances in medicine take time to be accepted. Decades passed before physicians bought into the idea that hand washing was a critical piece of preventing illness and death in their patients so it’s no surprise that the average pediatrician is unaware of the substantial body of research related to PANS that has been published in the past decade.
In an effort to move past the controversy and advise medical doctors on proper diagnosis and treatment of PANDAS/PANS, the PANDAS Physician Network (PPN) was established. The PPN consists of experts from Harvard, Yale, Stanford, Columbia, Georgetown, NIH, and NIMH.
In 2012, Lucile Packard Children’s Hospital at Stanford began their PANS Program. Since then, they’ve successfully treated hundreds of children while simultaneously conducting research and hosting an academic site. In February 2015, The Journal of Child and Adolescent Pharmacology (JCAP) dedicated an entire special edition of their journal to the latest research on PANS and PANDAS. Several additional peer-reviewed journal articles demonstrating the link between infection and neurological disorders including PANS are available here. In 2016, professors of pediatrics, otolaryngology, and neurology at Georgetown University hosted the Georgetown PANS Conference which provided continuing medical education to hundreds of physicians from all over the country.
Surely no small town doctor, school nurse, or mother-in-law spouting their personal belief that PANS doesn’t exist would perform well in a debate with the experts at these institutions who have been successfully treating PANS for years.
Myth 2: Labs were normal and ruled out PANDAS/PANS.
PANS is strictly a clinical diagnosis. Expert advisors at the PANDAS Physician Network (PPN) created a simple flow chart to guide doctors on diagnosis of PANDAS and PANS.
Notably missing from the PANS diagnostic flow chart is any laboratory testing whatsoever. Because pinpointing an infectious trigger can be helpful in determining course of action, this is addressed on page two of the flow chart covering treatment. It cannot be stressed enough that lab tests are entirely irrelevant to the actual diagnosis of PANS. Laboratory tests guide treatment, however they do not determine whether or not a child has PANS.
Families commonly are told that their child “tested negative for PANS” based on strep or viral titers. A child cannot test negative for PANS based upon any bacterial or viral titer, nor a negative strep culture. If your doctor tells you this, share the PPN guidelines with him or her and seek care elsewhere if he or she cannot grasp this simple concept.
It is important to note that 10% of children with PANS have co-morbid immunodeficiencies. Many of these children will have little or no antibody production despite being riddled with infection. Negative titers don’t mean they are free from infection. It simply means their immune systems aren’t functioning well enough to fight infection. Like rheumatic fever and Sydenham’s Chorea, both well established as post-strep autoimmune sequelae, PANDAS can occur many months after a strep infection, when evidence of a strep infection is no longer measurable on labs.
When in doubt, ask for a Cunningham Panel. If your doctor is uncomfortable diagnosing or treating PANS without labs to back up the diagnosis, the Cunningham Panel can be incredibly helpful. The Cunningham Panel measures CaM kinase II as well as antibody titers against four neuronal antigens present in the brain and associated with PANS. One positive value on the panel indicates PANS is likely an appropriate diagnosis when combined with behavioral symptoms. The Cunningham Panel is based on solid, peer-reviewed research conducted by Dr. Madeleine Cunningham, an expert in post-strep autoimmune sequelae. More information can be found here.
Myth 3: My child’s onset was not abrupt, so it can’t be PANS.
PANDAS and PANS have been narrowly defined for political reasons and research purposes. The “abrupt onset” requirement for diagnosis has had the unfortunate consequence of allowing countless children with slow declines to fall through the cracks.
The abrupt onset criteria was important for pushing PANDAS and PANS past its controversial history. Similarly, narrowly defining a homogeneous group of patients has been important for research purposes. This does not mean that children with a chronic or static presentation will not find dramatic relief from their symptoms with the same treatments successfully used in abrupt onset cases. Stanford, a leader in research and treatment of PANS, reported that only 40% of patients they treated had abrupt onset. The remaining 60% had a sub acute/insidious onset.
Myth 4: My child only has a few symptoms of PANS, not every one, so it must not be PANS.
Diagnosis of PANS requires either OCD or avoidant/restrictive food intake, paired with only two of the following symptoms: anxiety, depression, emotional lability, irritability, aggression, oppositional behaviors, behavioral/developmental regression, deterioration in school performance, sensory or motor abnormalities, sleep disturbances, enuresis, or urinary frequency .
For political reasons, tics were removed from the official PANS diagnostic criteria. Tics, paired with any two of the above symptoms, are widely regarded as diagnostic by the majority of PANS experts in the field.
Myth 5: My child was under age three or beyond puberty when their symptoms began, so it can’t be PANS.
From the PANDAS Physician Network: “PANS has no age limitation. The age cap was based upon studies that indicated that 98% of 12-year-olds have immunity against strep infections and therefore could not develop post-streptococcal sequelae, such as PANDAS. However, the intent of the criteria was to define a homogeneous group of patients for research and not to preclude post-pubescent patients from receiving a PANDAS diagnosis, if all other criteria were met.”
Myth 6: My child has many of these symptoms but it’s just because he has autism.
Autism and PANS can be indistinguishable, especially when symptoms begin before age three. Soon to be published research has revealed that many children with autism have the same elevated anti-neuronal antibodies measured by the Cunningham Panel as children with PANS. PANS should always be considered in the presence of regressive autism. Obsessive-compulsive, repetitive, and anxious behaviors seen so often in autism may result from PANS. Treatment for PANS can result in relief for these children. Child and adolescent psychiatrist Dr. Susan Daily presents a school-aged boy diagnosed with ADD and autism treated for PANS with dramatic improvement here.
Myth 7: My child isn’t concerned with germs or obsessed with hand washing so he doesn’t meet the OCD criteria for PANS.
OCD encompasses much more than just concern over cleanliness or germs. The Yale Brown Obsessive Compulsive Scale checklist that notes various OCD behaviors can be found here.
Some of the symptoms listed above as well as on the PPN indicative of OCD include:
- Aggressive obsessions of harm to oneself or others
- Sexual or religious obsessions (fear they’ve done something morally wrong)
- Repeating compulsions (examples: going in and out of a doorway; switching on/off appliances or light switches; re-reading pages over and over)
- Symmetry and exactness obsessions (examples: books and papers must be properly aligned; every action has to be done exactly the same on the right and left side; the child has to walk exactly in the center of a hallway)
- Ordering / arranging compulsions (example: suddenly placing bathroom items in a particular order and extreme anxiety if they are moved)
- Counting compulsions (examples: having to count ceiling tiles, books, or words spoken)
- Checking compulsions and requests for reassurance (examples: repeatedly asking a parent “is this okay?” or “did I do that right?”)
- Need to touch, tap, or rub (examples: rubbing the back of one’s hand across the table in a certain way, urge to touch rough surfaces)
- Intrusive images, words, music or nonsense sounds (examples: unwanted images, words, or music appear in the mind that do not stop)
- Need to tell, ask, or confess (examples: child needs to tell parent every perceived mistake or sin that day in school; excessive guilt)
- Colors, numbers, or words with special significance (examples: the color black is equated with death and anything black triggers obsessional fears; the number 3 is “lucky” and things have to be repeated three times or 3X3X3 times
- Ritualized eating behaviors (examples: eating according to a strict ritual; not being able to eat until an exact time)
- Hoarding behaviors (Obsessional concerns about losing something important generalize to the point where nothing can be thrown away, or useless items take on special significance and cannot be discarded.)
For a list of doctors familiar with PANDAS and PANS, see the PANDAS Physician Network practitioner tab. Above all, if you think your child may have PANS, trust your intuition and keep searching for answers. We live in a time where many children are finding relief from their neuropsychiatric symptoms and a return to normalcy only because of a parent who refuses to give up.
- 2013 Survey New England PANS/PANDAS Association
- PANDAS Physician Network