Pediatric Acute-Onset of Neuropsychiatric Syndrome (PANS) disease is reported to affect one in 200 children or adolescents. While no age requirement exists for PANS, most symptoms appear in children between 3 and 13. There have been adult cases of PANS, but they are rare.
It helps to break down the various parts that comprise the disorder to understand it completely.
PANS Defined
Pediatric Acute-Onset of Neuropsychiatric Syndrome can be broken down into crucial parts:
- The “P” in PANS signifies it is a disorder among the pediatric population. Most cases occur in children under 13.
- The “A” in PANS refers to acute onset because emotional and behavioral symptoms appear out of nowhere and overnight. Most report that their child’s symptoms began within 48 hours.
- The “N” in PANS is neuropsychiatric, meaning the disorder affects the mind and the nervous system.
- The “S” in PANS references that it is a syndrome, meaning a set group of signs and symptoms are associated with the disorder.
PANS is sometimes mistaken for PANDAS, a similar syndrome.
PANS Versus PANDAS
PANS and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) appear suddenly as severe obsessive-compulsive behaviors and other disturbances. Symptoms typically appear after an infection of some kind.
PANDAS are classified as a sub-group of PANS.
Symptoms of PANS
Imagine if, one day, your child’s behavior was completely different than the day before. Not a slight behavior change but an extreme switch with negative symptoms. You can imagine the fear and confusion parents must feel when this happens. Below are additional symptoms that may appear with PANS:
- Obsessive-compulsive behaviors
- Anxiety or depression
- Changes in handwriting
- Tics
- Restrictive eating
- Oppositional defiant behaviors
- Mental and behavioral regression
- Mood swings
- Tantrums
- Reversal in academic skills
- Seizures
- Self-harm behaviors
However, not all the symptoms are needed for a diagnosis, and they may come and go in increments of a few hours.
Diagnostic Criteria of PANS
According to the PANDAS Physicians Network, a person must meet specific criteria for diagnosing PANS. The symptoms that must be present include the following:
- A sudden, drastic onset of obsessive-compulsive disorder or severe restrictive eating. OCD behaviors may consist of the following:
- Fear of contamination
- Obsessive thoughts that harm will come to someone if they do not follow through with compulsions
- Repeating behaviors
- Obsession with order, symmetry, counting, checking, etc.
- Compulsion to touch or tap something
- Ritualized behaviors, including eating
- At least two of the following additional symptoms appear soon after the initial symptoms
- Anxiety
- Depression
- Regression behaviors
- Aggression, irritability, or oppositional behaviors
- Academic performance deterioration
- Motor and sensory abnormalities
- Sleep disturbances
- Urinary infrequencies
- Another disorder cannot explain the symptoms
Doctors must also determine if the PANS is mild, moderate, or severe. A mild case occurs for several hours a day, while moderate cases occur 50% to 70% of waking hours, and severe cases interfere between 71% and 100% of the time.
The Cunningham Panel is a test for diagnosing neuropsychiatric disorders triggered by an infection. It tests whether antibodies increase dopamine receptors, tubulin, CaM kinase, or lysoganglioside GM1.
What Causes PANS?
Most researchers agree that PANS is associated with an infection, usually strep throat, but not always. The body’s immune system reacts to the infection but in the wrong way. Instead of attacking the bacteria or pathogens, it attacks the basal ganglia part of the brain. Doctors classify it as a form of encephalitis, which causes severe brain and nervous system inflammation, leading to psychiatric and neurological symptoms.
Strep is not the only infection that triggers PANS. Others include the following:
- Epstein Barr
- Herpes
- The Flu
- Walking pneumonia
- Varicella
- Coxsackie virus
- COVID19
- Lyme disease
Non-infectious factors, including mold, heavy metals, and stress, can also trigger PANS.
PANS and Lyme Disease
Lyme disease is an infection involving Borrelia burgdorferi bacteria transmitted from a deer tick into a human’s bloodstream. Once in the body, Lyme bacteria begin reproducing and traveling to joints, muscles, cells, and tissues. Like strep throat bacteria, Lyme bacteria develop clever ways of hiding from the immune system.
A typical response to an infection is the immune system’s release of inflammation that seeks bacteria and destroys it. Bacteria create biofilms that act as tiny shields to avoid destruction, hiding and protecting them from the immune system’s tactics. Lyme bacteria can also go inactive at any time and can hide within cell and tissue linings.
When inflammation is released but can’t find the bacteria, it doesn’t stop. The inflammation continues traveling around your body, looking for foreign invaders. The result is pain, swelling, and other uncomfortable symptoms. These actions trigger PANS.
Treatment for PANS Disease
Several treatment strategies exist for PANS, and scientists are working on more. The same treatments apply to other autoimmune disorders and reactions. The following are recommended:
- Immunotherapy
Immunotherapies use substances the body makes to improve the immune system and fight infections. Examples include dendritic cell vaccines, activating macrophage therapy, intravenous immunoglobin therapy, and low-dose immunotherapy.
- Antibiotics
Antibiotics are a first-line treatment for most bacterial infections. Some doctors may prescribe oral antibiotics, but specialists often recommend intravenous antibiotic therapies.
- Alternative Treatments
Rare disease specialists can provide alternative treatments that general practitioners can’t. Examples include therapeutic apheresis, which replaces unhealthy blood or plasma with donated, healthy blood or plasma. Other alternative treatments include:
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- Anti-inflammatory therapies
- Intravenous vitamin treatments
- Dietary changes to reduce inflammation
- Dietary changes to heal the gut
- Anti-parasitic protocols
- Cognitive Behavioral Therapy (CBT)
CBT effectively treats obsessive-compulsive behaviors, anxiety, depression, and other mental health symptoms.
- Anti-depressant medications
Selective serotonin reuptake inhibitors (SSRIs) are anti-depressants to effectively treat anxiety, depression, and other symptoms of mood-related issues.
Getting Started
The more you learn about PANS, the better. No one can tell you more about the disorder than a rare disease specialist, sometimes a Lyme-literate doctor. They have many years of education and training in treating PANS and can create a treatment plan to meet your unique needs.
Don’t be afraid to search outside the United States and Canada for the best doctor. You can spend months and years visiting different doctors in your area, spending more money than necessary. Or you can seek treatment from a renowned clinic, like Lyme Mexico, and get back to living the life you deserve.
Check Out the Latest From Dr. Morales!
Dr. Morales’ presentation from ILADS 2022 is now available! Watch as he explains mold mycotoxins and their role in neurological problems: https://www.youtube.com/watch?v=X_89lZkcc1Y
