Understanding PANS and PANDAS: Our Experience With Diagnosis and Treatment
Many people come to our clinic wanting to explore PANS/PANDAS diagnosis. As we work through the diagnostic process, there are some initial things to understand about this diagnosis and others that present similarly.
When we speak of people who fall into diagnostic suspicion for PANS/PANDAS, we’re usually speaking of two issues affecting the patient:
Numerous neurological symptoms that can include things like tics and urinary frequency
Symptoms that get worse in the context of illness.
These issues point us to a diagnosis of encephalopathy-- or inflammation of the nervous system.
Per the National Institute of Health (NIH):
"Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure... The hallmark of encephalopathy is an altered mental state. Depending on the type and severity of encephalopathy, common neurological symptoms are progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak."
However, the causes of encephalopathy can be numerous.
Again, per the NIH:
"Encephalopathy may be caused by infectious agent (bacteria, virus, or prion), metabolic or mitochondrial dysfunction, brain tumor or increased pressure in the skull, prolonged exposure to toxic elements (including solvents, drugs, radiation, paints, industrial chemicals, and certain metals), chronic progressive trauma, poor nutrition, or lack of oxygen or blood flow to the brain. Blood tests, spinal fluid examination, imaging studies, electroencephalograms, and similar diagnostic studies may be used to differentiate the various causes of encephalopathy."
Our job at Lighthouse is to sort through the symptoms, perform indicated diagnostic testing, and do our best to discern the cause of the patient’s encephalopathy. Many patients affected by the issues in A) and B) immediately assume PANS/PANDAS to be the cause. However, all of the various types of encephalopathies present with those symptoms and exacerbate in the face of illness. PANS/PANDAS is a diagnosis of exclusion. Here at Lighthouse, we will work with you to distinguish which type of encephalopathy you are facing and whether or not PANS/PANDAS is what is affecting the patient.
PANDAS is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. As of 2010, it is considered a subset of the broader classification, PANS. PANS is the acronym for Pediatric Autoimmune Neuropsychiatric Syndrome. People with PANS have similar symptoms to PANDAS, but laboratory tests indicate they are negative for a group A streptococcal infection.
First described in 1998 by Dr. Susan Swedo of the National Institute of Mental Health, PANDAS occurs when the immune system produces antibodies intended to fight against strep infection. These antibodies mistakenly attack healthy tissue in the person’s brain. The resulting neural inflammation induces a sudden onset of movement disorders, neuropsychiatric symptoms, and abnormal neurologic behaviors (OCD, anxiety, tics), urinary frequency, and sleep disturbances. See below for additional symptoms.
It’s more common in boys and typically the onset is between age four and seven years old, but sometimes it may not be identified for years after onset. It is often characterized by “flares” or symptomatic exacerbations, episodes where the body is experiencing increased inflammation often triggered by infectious exposure. With PANS, even bacteria from loose teeth can cause an increase in difficult behaviors.
The symptoms for PANS/PANDAS can vary greatly. Patients in our practice have multiple combinations of the following symptoms:
PANS and PANDAS are diagnosed based on clinical presentations. Since symptoms overlap with other medical conditions, PANS and PANDAS can be difficult for providers (without the experience) to identify.
There are no tests to definitively diagnose PANS or PANDAS. However, there are specific guidelines that have been established. According to the PANDAS Physician Network the five diagnostic criteria for PANDAS are:
1. Presence of OCD and/or tics, particularly multiple, complex or unusual tics
2. Age Requirement (Symptoms of the disorder first become evident between 3 years of age and puberty)
3. Acute onset and episodic (relapsing-remitting) course
4. Association with Group A Streptococcal (GAS) infection
5. Association with Neurological Abnormalities
The guidelines they suggest for PANS are:
An abrupt, acute, dramatic onset of obsessive-compulsive disorder or severely restricted food intake [Practice Note: When the child is very young at onset, the acute nature of the onset can often be obscured by the length of time the person has had the condition.]
Concurrent presence of additional neuropsychiatric symptoms with similarly severe and acute onset from at least 2 of the following categories: · Anxiety · Emotional Lability and/or Depression · Irritability, Aggression, and/or Severe Oppositional Behaviors · Behavioral (Developmental) Regression · Sudden Deterioration in School Performance · Motor or Sensory Abnormalities · Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency
Symptoms are not better explained by a known neurologic or medical disorder
Age requirement – None
The Cunningham Panel by Moleculera Labs can provide helpful data. However, the test is not necessary for diagnosis. The panel of 5 assays identifies a patient’s specific antibody levels and the antibodies’ capability to stimulate and trigger neurological symptoms.
We also check bacterial and viral titers to see if there are any underlying or latent infections the body may be struggling with that could be contributing to a faulty immune response.
Even when correctly diagnosed, PANS/PANDAS can be hard to treat. A thorough investigation of the immune system’s predisposition to this type of confusion is necessary. However, in many cases, PANS/PANDAS can be successfully treated with significant or complete remission of symptoms.
Unfortunately, many cases of PANS still go unrecognized or are misdiagnosed. Typically, patients have seen multiple doctors in search of an answer. And, all too often, people suffering from PANS or PANDAS are diagnosed with a mental illness and prescribed psychiatric medications without addressing the root medical causes of their behaviors and symptoms.
How We Treat PANS/PANDAS
At Lighthouse Complex Care patients often find us because they are in crisis. Sometimes they already have a diagnosis. Sometimes they are seeking help for difficult symptoms that their pediatrician or other specialists haven’t yet identified as PANS/PANDAS. Our first goal is to get the patient out of crisis and stabilized. We do this by quickly addressing inflammation and identifying and treating infections that may be causing initial symptoms or an exacerbation.
First-line treatment for severe symptoms can include steroids, IVIG, or plasmapheresis. Plasmapheresis has been shown to give patients the greatest improvement in severe symptoms over the shortest period of time. If this is unavailable in your area, IVIG is an alternative although it’s generally used for more moderate cases. Currently, due to COVID-19, we are unable to provide these services in the clinic, but we can try to help you find a facility in your area. Plasmapheresis and IVIG are expensive procedures and often insurance coverage is hard to procure.
Once your child is stable, we help you work towards improving immune system function, increasing quality of life and overall health, and preventing/minimizing future exacerbations. We believe in “Test, Don’t Guess” and will use both the patient’s existing medical history and additional tests to perform a systematic, thorough medical investigation.
People with PANS/PANDAS often have other overlapping conditions like mitochondrial dysfunction, chronic gut issues, and genetic factors that all need to be addressed. We excel at understanding how these pieces affect one another. Our systematic approach helps us to find the things some others might miss. Our blend of allopathic and holistic treatments allows us to take the best of both worlds to help our patients feel better.
Our patients’ health and well being are vitally important to us. As parents of children with complex medical conditions, we understand how hard it can be to get through exacerbations and to find someone who wants to get to the bottom of what’s going on. We don’t want to mask symptoms with medications (although they may be necessary along the way to keep everyone safe). We want to find the root causes of symptoms and resolve them.
Are you or your child experiencing a cluster of the symptoms listed above or do you already have a PANS/PANDAS diagnosis, but feel like you aren’t making the progress you hoped for? We encourage you to fill out our intake paperwork and schedule an initial appointment. You're not alone. We can help.