What is PANS/PANDAS?
Perhaps you're a professional who has heard of PANS/PANDAS and you're curious what these acronyms mean. Maybe you're a parent, like me, whose world shifted drastically overnight and you're desperately searching for answers. Maybe you're a therapist who specializes in OCD or eating disorders and you're stumped on complex presentations and hoping to find a solution. No matter what brings you here - I am glad you're here to learn about this vicious autoimmune response that does not glean enough attention despite it affecting 1 in 200 children (PANDAS Network). Most importantly, I want you to know that there is hope.
What does it mean?
PANS is Pediatric Acute-Onset Neuropsychiatric Syndrome and PANDAS is Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. PANS/PANDAS, which will be referred to as P/P, often present following infections, like strep throat, but can also present after infections related to lyme disease and mold exposure. P/P, similar to other autoimmune diseases, turns the immune system to attack a healthy brain rather than the illness that has entered the body. This causes an array of symptoms that can show up overnight most frequently obsessive-compulsive behavior and mood swings.
What are the signs and symptoms of PANS/PANDAS?
1. Obsessive-Compulsive Behaviors
Sudden onset of obsessive thoughts and compulsive actions, often intense and disruptive.
Common compulsions include repetitive checking, washing, or ordering rituals.
2. Severe Anxiety
Heightened separation anxiety, especially toward caregivers.
Generalized anxiety and social anxiety that disrupt daily activities.
3. Mood Changes and Emotional Lability
Intense mood swings, often without an apparent reason.
Periods of irritability, aggression, rage, or depression.
4. Behavioral Regression
Reverting to younger behaviors, such as baby talk, clinginess, or needing constant reassurance.
Frequent temper tantrums or emotional outbursts.
5. Sleep Disturbances
Difficulty falling or staying asleep, sometimes accompanied by night terrors.
Unusual sleep patterns or needing significantly more sleep or less sleep.
6. Tics and Motor Abnormalities
Sudden, repetitive movements (motor tics) or vocalizations (vocal tics).
Difficulty with coordination or unusual clumsiness.
7. Decline in Academic Performance and Cognitive Abilities
Difficulty focusing, memory issues, and a noticeable decline in school performance.
Symptoms similar to Attention Deficit Hyperactivity Disorder (ADHD).
8. Sensory Sensitivities
Heightened sensitivity to sounds, textures, lights, or other sensory inputs.
Often results in discomfort or irritation with clothing, loud noises, or bright lights.
9. Urinary Issues
Increased frequency or urgency to urinate.
In younger children, bedwetting or accidents during the day may become more common.
10. Appetite and Eating Changes
Restriction in eating due to fears around contamination or sensory needs.
Potential sudden changes in appetite, often linked to obsessive thoughts about food.
Additional Considerations
These symptoms often have a sudden onset, usually triggered by infections such as strep (in PANDAS) or other infections or stressors (in PANS ) such as mold exposure or lyme disease.
The nature of these symptoms may fluctuate, often worsening during illness or stressful periods.
It’s important to note that many families who have experienced PANS/PANDAS report not experiencing the sudden onset of symptoms, but rather that it felt like a slow build. This list of experiences is by no means complete.
If you suspect your child may have PANS or PANDAS, it’s essential to act quickly to get them the support they need. The first step is to trust your instincts. Sudden changes in behavior, mood, or cognitive abilities aren’t always “just a phase,” especially when they occur without warning. Begin by keeping detailed notes on your child’s symptoms, including the intensity, frequency, and any potential triggers (such as recent illnesses, infections, or stressors). This documentation can be incredibly helpful when consulting with medical professionals.
Reaching out to a healthcare provider experienced in PANS/PANDAS is critical. It’s important to identify a provider who is well versed in and understand PANS/PANDAS. This may be a functional medicine doctor, a neurologist, psychiatrist, or infectious disease expert, who has experience with these conditions. Proper diagnosis often involves a combination of behavioral assessment, medical history, and sometimes laboratory tests to check for underlying infections or autoimmune activity. Early intervention can make a big difference, so don’t hesitate to seek a second opinion if necessary.
Online resources can also offer valuable information, support, and guidance as you navigate the diagnostic and treatment journey. Some helpful websites include:
PANDAS Network (pandasnetwork.org): This nonprofit organization provides detailed information on symptoms, diagnosis, and treatment options. They also offer resources for finding specialists and support groups, as well as educational material for families, schools, and healthcare providers.
Pediatric Research and Advocacy Initiative (PRAI) (praikids.org): PRAI supports families affected by PANS and PANDAS through advocacy, education, and research. Their website offers helpful articles, videos, and tools for understanding the conditions and finding care.
International OCD Foundation (IOCDF) (iocdf.org): While primarily focused on OCD, the IOCDF provides valuable information on PANS/PANDAS, including treatment options, articles, and resources for finding OCD specialists who may also treat PANS/PANDAS cases.
It can also be helpful to connect with parent support groups, both online and locally, to share experiences, resources, and emotional support. Organizations like PANDAS Network and PRAI offer links to online support communities where families can connect, ask questions, and find solidarity. Taking these steps not only helps in pursuing an accurate diagnosis but can also empower you to make informed choices and find community support as you seek the best care for your child.
Joshua Adair is a compassionate trauma therapist, devoted father, and loving husband who believes in the power of words and connection. With a deep love for writing and poetry, Joshua brings warmth and empathy to his work, helping individuals and families find healing through safe and meaningful therapeutic experiences. He is passionate about creating spaces that allow others to explore, grow, and reconnect with themselves and their loved ones.