What is PANS/PANDAS and What Does it Mean?
Your child gets sick with strep throat or another viral illness. It seems like a normal childhood illness, but after recovering, they started experiencing sudden behavioral and psychiatric symptoms. They have OCD-like behaviors, tics, anxiety, aggression, difficulty in school, and fine motor skill problems. It sounds like they have PANS or PANDAS.
What is PANS? What is PANDAS? (No, unfortunately, we are not talking about the cute animals!) What is the difference between the two? And how can you improve your children’s health and well-being with PANS or PANDAS?
What Is PANS/PANDAS?
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are conditions that cause sudden, severe psychiatric symptoms in children. Both of these disorders are believed to be triggered by infections or immune system responses, most commonly a strep infection, leading to a rapid onset of symptoms that affect the child’s behavior, mood, and cognitive abilities.
In these conditions, brain inflammation develops due to an infection or immune response, causing the body’s immune system to mistakenly attack itself, more specifically, its own brain cells. This can result in autoimmune processes disrupting central nervous system function. As a result, the child may display a variety of sudden neurological symptoms, including dramatic personality changes, obsessive-compulsive disorder (OCD)-like symptoms, tics, other abnormal movements, anxiety, sensory issues, and more (1, 2, 3).
Key Differences Between PANS and PANDAS
PANS and PANDAS are related but not the same—PANS can be triggered by various infections or immune responses, while PANDAS is specifically linked to streptococcal (strep) infections. PANDAS is a subset of PANS, meaning all cases of PANDAS are PANS, but not all PANS cases are PANDAS.
PANS
PANS is a clinical diagnosis given to children who experience a sudden onset of OCD symptoms or eating restriction with other acute behavioral deterioration. PANS symptoms may also include sensory issues, motor abnormalities, anxiety, mood disorders, behavioral regression, urinary troubles, sleep disturbances, and a decline in school performance.
PANS encompasses a broader range of triggers compared to PANDAS, including infections, environmental factors, or even stress, causing similar neuropsychiatric symptoms but not necessarily linked to strep. Diagnosis doesn’t require a known trigger, though scientists believe that symptoms are attributed to one or two pathogens (2).
PANDAS
PANDAS is a specific subset of PANS, which was first reported in 1998 by the National Institute of Mental Health. PANDAS has strict diagnostic criteria. The criteria include “abrupt “overnight” OCD or dramatic, disabling tics; a relapsing-remitting, episodic symptom course; young age at onset (average of 6–7 years); the presence of neurologic abnormalities; and temporal association between symptom onset and Group A strep (GAS) infection” (2). Unlike PANS, PANDAS is specifically associated with a streptococcal infection, such as strep throat, which triggers an autoimmune response that affects the brain.
Symptoms of PANS/PANDAS
PANS and PANDAS share many of the same symptoms, including abrupt-onset OCD, tics, sensory abnormalities, anxiety, mood swings, irritability, sleep disturbances, and behavioral regression. However, PANDAS is more specifically associated with strep-triggered symptoms, which may include motor tics, urinary symptoms, and worsening symptoms after strep infections, while PANS can have a broader range of triggers and symptoms depending on the underlying cause.
Here’s a more detailed look at some of the shared symptoms PANDAS and PANS patients may experience:
Behavioral Changes
Children with PANS or PANDAS may experience some sudden-onset behavior changes. These may include an abrupt shift in mood, sudden mood swings, sudden increase in irritability, becoming more aggressive, or being overly emotional.
Anxiety may be severe enough that children experience panic attacks, extreme clinginess, or social withdrawal. They may also experience depression, uncontrollable crying or laughter, or other signs of emotional lability. Symptoms occur suddenly, without an apparent trigger, and without the explanation of another mental or physical illness (4, 5).
Motor and Tics
Children with PANS or PANDAS may also experience uncontrolled movements or vocalizations (tics). These involuntary movements or tics may include jerking, blinking, grimacing, shoulder-shrugging, or nose-twitching. They tend to appear suddenly, often along with vocal tics or repetitive sounds.
Vocal tics may include throat clearing, humming, coughing, grunting, or repeating words or phrases. The severity or frequency of tics can change based on stress levels. In some cases, tics and motor movements can affect coordination or handwriting (4, 5).
Cognitive Difficulties
Children with PANS or PANDAS may experience abrupt cognitive difficulties. These may include a sudden decline in academic performance, difficulty concentrating, or learning challenges. They may experience difficulties with memory, information processing, attention, organizing their thoughts, following directions, or finishing assignments.
Their academic performance may drop suddenly. Children may find themselves unusually overwhelmed by schools, which can cause frustration and avoidance. These changes are sudden and cannot be explained by other learning disabilities or mental health challenges (4, 5).
Obsessive-Compulsive Behavior (OCD)
Children with PANS or PANDAS may also experience sudden OCD and tic disorders, anxiety, and compulsive behaviors. Compulsions may include excessive hand-washing, counting, or checking. This often comes with severe anxiety.
Children may also experience irritational fears and intrusive thoughts. These obsessive-compulsive thoughts and behaviors can cause serious distress. It can impact their daily life. They can lead to avoidance of certain situations and social difficulties (4, 5).
Restrictive Eating and Sensory Sensitivities
Children with PANS or PANDAS may also experience severely restricted food intake or sensory sensitivities. They may develop sudden selective eating patterns or food refusal. This may be due to sudden sensory sensitivities, fear of contamination, fear of trouble swallowing, fear of weight gain, fear of vomiting, or other issues. These restrictive behaviors can lead to nutritional imbalances and weight loss.
Additionally, some children with PANS or PANDAS may become overly sensitive to touch, sound, or noise. For example, they may have difficulty tolerating certain textures, such as how a sweater or blanket feels, the temperature of certain foods, or simple touches from others. These sensory sensitivities are not explained by other issues but can make daily life more difficult and lead to anxiety, distress, and avoidance (4, 5).
Other Symptoms
Children with PANS or PANDAS may experience other symptoms besides these aforementioned four areas. They may have some somatic signs, including increased urinary frequency, bed-wetting, or sleeping difficulties.
Some may experience hyperactivity, severe separation anxiety, a fight or flight response even to events that shouldn’t be frightening, and dilated pupils during emotional outbursts. Some children may experience choreiform movements, which are involuntary, irregular, and jerky movements that appear to flow from one part of the body to another. Finally, rheumatic and joint pain may also occur (4, 5).
Symptom severity can vary widely, ranging from mild and manageable to severe and debilitating. In mild cases, children may experience occasional obsessive compulsive symptoms, mild anxiety, or slight mood changes that don’t significantly impact daily life. Severe can be debilitating and some children may struggle with school, social interactions, or even basic self-care.
Potential Triggers of PANS/PANDAS
PANS can be triggered by various infections (like flu, mycoplasma, or Lyme disease), environmental factors, or immune dysfunction, while PANDAS is specifically triggered by a strep infection. Other potential triggers include autoimmune responses, stress, toxins, and metabolic disturbances, all of which can cause sudden-onset neuropsychiatric symptoms.
Infections
Infections, including bacterial and viral illnesses, are a common potential trigger for PANS and PANDAS. PANDAS develops after strep throat bacterial infection. PANS may develop after a strep throat infection but may also develop from viral illnesses, including the Epstein-Barr virus, influenza, or mycoplasma pneumonia, or from bacterial infections like Lyme disease.
These infections can result in a severe immune response that mistakenly affects the brain, which can result in sudden neuropsychiatric symptoms. The infections don’t need to be severe. In some cases, mild or severe infections can result in symptoms or flare-ups.
Immune Response
In both PANS and PANDAS, we often see a dysregulated immune system that mistakenly attacks the brain tissue, leading to inflammation that disrupts normal neurological functioning. This is an autoimmune reaction that can result in inflammation of the basal ganglia.
This is the area of the brain that’s responsible for motor control and mood regulation. Thus, it can affect movement, emotions, and behavior and lead to sudden onset OCD behaviors, tics, anxiety, cognitive difficulties, and other symptoms.
Environmental Stressors
While PANDAS is specifically linked to strep throat infections, PANS may develop from other factors besides infections, including environmental factors, stress, and trauma. High levels of stress, trauma, and, in some cases, even changes in routine may trigger or worsen symptoms of PANS.
Physical exhaustion, emotional stress, and dietary factors may also play a role in immune dysfunction that may increase symptoms and the risk of flare-ups. These events may be normal life events, including changing school, moving, divorce of the parents, or other life changes that are significant in the child’s life.
Diagnosis of PANS/PANDAS
At this point, there is no one 100% definitive test for PANS or PANDAS. Diagnosis is largely clinical, based on the sudden onset of psychiatric signs and symptoms, medical history, possible triggering infections, and laboratory findings. It’s important that signs and symptoms cannot be explained by any other neurological or medical disorders (3).
Blood tests, throat cultures (for strep), and sometimes imaging are often part of the diagnostic process, ruling out other conditions and identifying PANS or PANDAS (3). If you are looking for diagnosis and treatment, functional medicine Atlanta specialists at our office may conduct further investigations to look at immune system function and potential triggers.
Treatment Options for PANS/PANDAS
There are a number of treatment options for PANS and PANDAS you may consider.
Antibiotic Treatment
In cases of PANDAS where strep is the trigger, antibiotics may be prescribed to treat the infection and prevent further immune system attacks. In some cases of PANS, streptococcal infection may play a role, too, making antibiotics a potentially helpful option. Considering that antibiotics can destroy healthy gut bacteria, cause microbiome imbalance, and increase the risk of antibiotic resistance, antibiotics should only be used when warranted and should not be overused. Talk to your doctor to see if antibiotics are appropriate for your child (7, 8, 9).
Immunomodulatory Therapies
Medications like steroids, intravenous immunoglobulin (IVIG), or plasmapheresis may help reduce inflammation in the brain. Steroids may help to reduce inflammation in the brain and, as a result, may decrease the severity of symptoms (10, 11). However, for some children, side effects may increase tics or aggression, so working with your doctor is critical.
IVIG is an intravenous pooled blood made up of immunoglobins that may help to improve immune deficiencies, encephalitis, and other health issues (8, 12, 13). Plasmapheresis (apheresis) or plasma exchange (PEX) may both help to remove harmful auto-antibodies from the blood and, as a result, reduce symptoms (14, 15). These procedures have to be done in the hospital setting.
Psychiatric Interventions
Psychiatric intervention may also help to improve behavioral and emotional symptoms of PANS and PANDAS. Cognitive behavioral therapy (CBT) and Exposure and Ritual Prevention (ERP) therapy may both be helpful (16, 17, 18).
Selective serotonin reuptake inhibitor (SSRI) medicines can also be effective, especially for OCD behaviors (19). However, some children with PANDAS may be sensitive to the behavioral side effects of the medication and may experience increased aggression, hyperactivity, sleep issues, and even suicidal thinking as a result. Starting at a lower dose may help, but for some children, SSRIs are not appropriate. It is important that you talk to your doctor to see if SSRIs are right for your child.
Additionally, working with an occupational therapist may help to improve fine motor skills, including coordination skills and handwriting, if that’s impacted. Working with your child’s school to seek appropriate accommodations for OCD, fine motor skills symptoms, hyperactivity, or other symptoms of PANS/PANDAS (7).
How to Select the Right Treatment for PANS/PANDAS
The most important thing is that you work with a doctor who is experienced with PANS/PANDAS and understands the best treatment options. Visiting our Functional Health Clinic and working with one of our naturopathic doctors in Atlanta can provide additional integrative care options for managing neuropsychiatric symptoms.
Long-Term Outlook for PANS/PANDAS
With early intervention and appropriate treatment, children with PANS/PANDAS can experience significant improvement, sometimes even full recovery. The severity and duration of the symptoms can significantly impact treatment and long-term outlook.
Some children may require long-term care and management, including antibiotics, immune-modulating therapies, and behavioral support. Flare-ups may also occur, especially if new infections or stressors trigger an immune response.
Ongoing medical care, therapy, and lifestyle adjustments can all play a role in reducing the frequency and intensity of symptoms, lowering the risk of flare-ups, and improving the child’s overall quality of life. Early detection and personalized treatment plans from clinics specializing in functional medicine Atlanta can offer hope for better management of the condition.
Work With an Experienced PANS/PANDAS Doctor in Atlanta
PANS and PANDAS are complex conditions with a sudden and significant impact on a child’s physical and mental well-being. Understanding these disorders, their symptoms, potential triggers, and available treatments is crucial for parents and healthcare providers to manage and alleviate these disorders effectively.
Consultation with a functional medicine doctor in Atlanta is key in determining the most appropriate treatment options for affected children. We invite you to set up an appointment with our office here.