Introduction
As a parent, discovering that your child might be experiencing a complex neuropsychiatric disorder can be overwhelming and frightening. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) are two challenging conditions that can dramatically and suddenly change a child’s behavior, cognitive function, and overall well-being.
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This comprehensive guide is designed for parents, caregivers, and educators who want to understand these intricate disorders. We’ll explore their definitions, symptoms, causes, diagnostic processes, treatment options, and provide hope and guidance for those navigating this complex medical landscape.
Early awareness and detection are crucial. By understanding PANDAS and PANS, you can become an informed advocate for your child, helping them receive the specialized care they need to manage and potentially recover from these challenging conditions.
What are PANDAS and PANS?
Definition of PANDAS
PANDAS is a specific type of pediatric disorder characterized by a sudden and dramatic onset of neuropsychiatric symptoms following a Group A Streptococcal (GAS) infection. Unlike typical infections, in PANDAS, the body’s immune response mistakenly attacks the brain’s basal ganglia, leading to a range of neurological and psychiatric symptoms.
The key distinguishing feature of PANDAS is its direct link to streptococcal infections. When a child contracts strep throat or scarlet fever, their immune system produces antibodies to fight the infection. In PANDAS, these antibodies unexpectedly target the brain, causing inflammation and neurological disruptions.
Definition of PANS
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a broader diagnostic category with a similar presentation but a more diverse range of potential triggers. While PANDAS specifically links to strep infections, PANS can be initiated by various infectious agents, environmental factors, or metabolic disturbances.
Potential PANS triggers include:
- Influenza
- Mycoplasma pneumonia
- Lyme disease
- Epstein-Barr virus
- Environmental toxins
- Metabolic disorders
Key Difference Between PANDAS and PANS
The primary distinction lies in the triggering mechanism:
- PANDAS: Strictly linked to Group A Streptococcal infections
- PANS: Can be triggered by a broader range of infections and environmental factors
Both disorders share similar sudden-onset neuropsychiatric symptoms and an autoimmune response that affects brain function.
Symptoms of PANDAS and PANS
Core Symptoms
- Abrupt onset of severe Obsessive-Compulsive Disorder (OCD)
- Dramatic eating restrictions or changes in eating habits
- Significant emotional and behavioral changes
- Neurological disruptions
Comprehensive Symptom List
The symptoms of PANDAS and PANS are complex and can vary widely between individuals:
- Psychological Symptoms
- Intense anxiety
- Depression
- Rapid mood swings
- Emotional lability
- Motor and Neurological Symptoms
- Sudden onset of tics
- Motor abnormalities
- Fine and gross motor skill disruptions
- Sensory Processing
- Hypersensitivity to light
- Sound sensitivities
- Touch aversions
- Tactile defensiveness
- Cognitive and Academic Challenges
- Significant decline in school performance
- Memory problems
- Concentration difficulties
- Handwriting regression
- Decreased academic abilities
- Behavioral Regression
- Developmental setbacks
- Age-inappropriate behaviors
- Separation anxiety
- Emotional immaturity
- Physical Symptoms
- Increased urinary frequency
- Bedwetting
- Sleep disturbances
- Potential somatic complaints
Unique Features of PANDAS
PANDAS is characterized by an episodic course with distinct periods of symptom exacerbation and remission. These “flare-ups” often correlate with new streptococcal or viral infections, creating a cyclical pattern of symptoms.
Causes and Triggers
What Causes PANDAS?
PANDAS occurs when a Group A Streptococcal infection triggers an abnormal autoimmune response. Instead of solely fighting the bacterial infection, the immune system mistakenly attacks healthy brain tissue, specifically the basal ganglia.
Common strep infections that might trigger PANDAS include:
- Strep throat
- Scarlet fever
- Impetigo
What Causes PANS?
PANS has a more complex and varied etiology. Unlike PANDAS’ specific strep connection, PANS can be initiated by multiple infectious, environmental, and potentially genetic factors.
Potential PANS triggers include:
- Viral infections
- Bacterial infections
- Lyme disease
- Environmental toxins
- Metabolic disorders
- Genetic predispositions
How the Immune System Impacts the Brain
In both PANDAS and PANS, the immune system’s misguided response causes neuroinflammation. Autoantibodies attack the basal ganglia, a brain region responsible for motor control, executive functioning, and emotional regulation.
This autoimmune attack can disrupt neurotransmitter function, leading to the sudden and dramatic neuropsychiatric symptoms observed in affected children.
Role of Genetic Predisposition
Research suggests a potential genetic component in PANDAS and PANS susceptibility. Some children might have a genetic predisposition that makes them more vulnerable to these autoimmune responses.
Schedule Your Child's PANDAS/PANS Assessment
Schedule an assessment with our experienced PANDAS/PANS specialists to get answers and develop a personalized treatment plan.
Diagnosis of PANDAS and PANS
Clinical Criteria for PANS
To diagnose PANS, healthcare professionals look for:
- Sudden onset of OCD or severe eating restrictions
- At least two additional neuropsychiatric symptoms
- Symptoms not better explained by another neurological or medical condition
What are PANDAS and PANS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) are terms that describe acute neuropsychiatric conditions, primarily affecting children. In these cases, children experience a sudden onset of OCD-like symptoms, along with a host of other psychiatric and physical symptoms, following an infection.
PANDAS is specifically associated with streptococcal infections, while PANS can occur after various infections or even without a clear infection. These conditions are thought to be autoimmune in nature, where the body’s immune response inadvertently attacks parts of the brain, particularly the basal ganglia, resulting in rapid and severe behavioral and emotional changes.
How Does PANDAS/PANS Show Up?
Symptoms of PANDAS/PANS often appear suddenly, seemingly overnight, and can include:
- Obsessive-compulsive symptoms: Intrusive thoughts, repetitive behaviors, or rituals that disrupt daily life.
- Tics or involuntary movements: This can include sudden, uncontrollable movements or vocalizations.
- Mood and behavioral changes: Children may experience sudden rage, irritability, anxiety, or depression.
- Regression in skills: This can mean a loss of previously acquired skills, such as handwriting or toileting.
- Sleep disturbances: Difficulty falling asleep, staying asleep, or waking up multiple times during the night.
- Sensory sensitivities: Heightened responses to sounds, textures, or lights.
- Decline in academic performance: Children might suddenly struggle with schoolwork they previously found easy.
- Food Restriction Food restriction in these cases often stems from both sensory and psychological components. Regression and selective eating is also common:
- Some children may regress to “safe” foods that they previously preferred in early childhood, especially during symptom flare-ups. This regression often includes only a few types of foods, such as bland, soft items like crackers or pasta, which can be tolerated better than new or mixed food textures.
- A specific fear of choking or gagging while eating is also common among children with PANDAS/PANS, often part of a broader anxiety disorder. This fear can prevent children from eating certain foods or textures and lead to avoidance of eating altogether if not properly managed.
- Persistent food restriction may result in weight loss, which can exacerbate cognitive and physical symptoms. Nutritional deficiencies are also a concern, particularly if the child limits themselves to foods lacking essential vitamins, minerals, and macronutrients. Addressing nutritional needs is essential for overall health and symptom management.
- Somatic issues: Many children with PANDAS/PANS experience gastrointestinal issues like nausea, abdominal pain, or changes in appetite. These somatic symptoms can drive food avoidance, as children may associate eating with discomfort or fear of physical symptoms worsening. This connection can quickly evolve into more entrenched food restriction patterns.
- Attention Issues: ADHD symptoms can often be a significant component of PANDAS/PANS presentations, though the way they appear may differ from traditional ADHD due to the underlying autoimmune and neuroinflammatory processes of PANDAS/PANS. Here’s how ADHD-like symptoms might manifest in PANDAS/PANS cases:
- Sudden Onset of Inattention and Impulsivity: Children with PANDAS/PANS may experience a sudden or acute onset of ADHD-like symptoms, such as difficulties in sustaining attention, impulsivity, and distractibility. This sudden appearance often distinguishes PANDAS/PANS from classic ADHD, where symptoms typically develop gradually.
- Executive Function Impairments: Many children with PANDAS/PANS show impairments in executive functioning, which can present as trouble with organizing, planning, and completing tasks. These deficits may mimic ADHD but are often compounded by emotional dysregulation and obsessive-compulsive symptoms typical in PANDAS/PANS.
- Hyperactivity Linked to Anxiety and Obsessions: The hyperactivity in PANDAS/PANS may sometimes be driven by heightened anxiety or intrusive thoughts rather than classic ADHD hyperactivity. This could look like restlessness, pacing, or fidgeting driven by underlying compulsions or fears rather than a straightforward inability to sit still.
- Mood-Related ADHD Symptoms: Children with PANDAS/PANS may experience rapid mood swings, irritability, and frustration, which can exacerbate impulsive behaviors and make it difficult for them to regulate their attention and focus. These behaviors can sometimes be mistaken for ADHD, though they may stem from the underlying neuroinflammatory response associated with PANDAS/PANS.
- Variable Attention and Cognitive Slowing: Unlike the consistent attention deficits in ADHD, attention in PANDAS/PANS can vary throughout the day or from day to day, often worsening with symptom flare-ups. Cognitive slowing or “brain fog” can make it seem as if the child is inattentive or struggling to process information, resembling ADHD but with a fluctuating pattern.
- Sensory Sensitivities and Overload: Many children with PANDAS/PANS have sensory processing issues that may lead to hyperactivity or distractibility in overstimulating environments. Sensory sensitivities can mimic ADHD symptoms but tend to be more closely related to the inflammatory response and are often accompanied by other PANDAS/PANS symptoms like motor tics or compulsive behaviors.
These symptoms can be overwhelming and confusing for both families and professionals. At Level Up Wellness Group, we often see how dramatically PANDAS/PANS affects family life, as children may become virtually unrecognizable due to these sudden changes.
Misconceptions About PANDAS/PANS
Despite growing awareness, PANDAS/PANS remains widely misunderstood. Here are a few common misconceptions:
- Misconception 1: PANDAS/PANS is rare. Research suggests that PANDAS/PANS may be underdiagnosed, with many cases unrecognized or misattributed to other mental health conditions.
- Misconception 2: Only children are affected. While PANDAS/PANS typically presents in childhood, untreated cases may lead to lifelong symptoms. We’ve seen young adults who went undiagnosed as children continue to experience debilitating symptoms.
- Misconception 3: It’s “just OCD” or “just anxiety.” While OCD and anxiety are prominent symptoms, they don’t tell the whole story. PANDAS/PANS affects various aspects of mental and physical health, making comprehensive treatment essential.
- Misconception 4: Symptoms will fade on their own. Unfortunately, without intervention, many children continue to struggle, often experiencing cyclical flare-ups of symptoms.
Why Physicians May Disagree on Treatment Approaches
PANDAS/PANS is a controversial diagnosis, and while many families find relief through specific treatments, not all physicians agree on the best approach. Here’s why:
- Lack of standard diagnostic criteria: PANDAS/PANS lacks universally accepted diagnostic criteria, making it challenging for physicians to confidently diagnose and treat.
- Autoimmune mechanism skepticism: Not all doctors agree that PANDAS/PANS symptoms are caused by an autoimmune response. Without conclusive research, some physicians hesitate to embrace the autoimmune theory.
- Antibiotic treatment concerns: One common treatment for PANDAS involves antibiotics to address the underlying infection. However, due to concerns about antibiotic resistance and effectiveness, some doctors are reluctant to prescribe antibiotics.
- Need for extensive clinical workup: PANDAS/PANS requires a comprehensive assessment, which can be time-consuming and complex. Many healthcare providers may not feel equipped to provide the necessary level of care and monitoring.
At Level Up Wellness Group, we approach PANDAS/PANS with the understanding that each case is unique. Our diagnostic process involves a clinical interview and a close collaboration between our psychologists and nurse practitioners. After assessing a child’s medical history, we might recommend a combination of therapies that could include behavioral support, medications when appropriate, and nutritional guidance to support healing. Each case is carefully monitored to ensure treatments are adapted as the child progresses.
Schedule Your Child's PANDAS/PANS Assessment
Schedule an assessment with our experienced PANDAS/PANS specialists to get answers and develop a personalized treatment plan.
Moving Forward with Hope and Compassion
For families dealing with PANDAS/PANS, it can be incredibly validating to have a professional who understands what they’re experiencing. At Level Up Wellness Group, we are committed to supporting these families with individualized care, careful diagnostic evaluation, and a multi-disciplinary approach that aligns with current best practices.
Our nurse practitioner works collaboratively with Naturopaths across Alberta and Ontario to support patients in those provinces. Our dietitians, nurse practitioners, and OCD specialist support patients across Alberta to work towards wellness.
If you’re interested in learning more or think your child may be affected by PANDAS/PANS, feel free to reach out to our team at Level Up Wellness Group. We’re here to provide guidance and support every step of the way.
Written by Dr. Melody Morin
Read more about Dr. Melody
