Pans: Understanding The Reality And Impact Of This Disorder

PANS and PANDAS are controversial hypothetical diagnoses for children who exhibit a rapid onset of obsessive-compulsive disorder (OCD) or tic disorders. PANDAS is specifically associated with streptococcal infections, while PANS is a broader category that includes other potential causes. The diagnosis and treatment of these disorders are the subject of ongoing debate in the medical community, with some doctors dismissing PANS and PANDAS as nonexistent or mild conditions. However, research spanning decades demonstrates that these conditions do exist, and advocacy networks have formed to support affected individuals and their families.

PANS/PANDAS is a legitimate diagnosis

PANS/PANDAS is a recently identified syndrome, first described in 1998, that is characterised by the sudden onset of obsessive-compulsive disorder (OCD) or tic disorders. The symptoms are proposed to be caused by group A streptococcal (GAS) infections, specifically group A beta-hemolytic streptococcal (GABHS) infections. The abrupt onset of symptoms, including motor or vocal tics, obsessions, or compulsions, is often preceded by a strep throat infection.

The PANDAS hypothesis was based on observations in clinical case studies and subsequent clinical trials, where children exhibited dramatic and sudden OCD exacerbations and tic disorders following infections. However, the hypothesis was unconfirmed and unsupported by data, leading to the proposal of a broader definition, paediatric acute-onset neuropsychiatric syndrome (PANS), in 2012. PANDAS, PANS, and other related conditions are the focus of ongoing clinical and laboratory research.

While there is no definitive diagnostic test for PANDAS, and the diagnostic criteria are unevenly applied, the condition can be clinically diagnosed based on medical history and symptom presentation. Biological markers, such as blood work and bacterial testing, can support the diagnosis. The PANS/PANDAS diagnosis is a legitimate one, and research spanning decades continues to improve our understanding of these disorders.

The reality of PANS/PANDAS is supported by over two decades of research. Treatments for PANS/PANDAS aim to address both the psychiatric symptoms and immune system dysregulation. Antibiotics are often the first line of defence, targeting the underlying infection. Other treatments include intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, steroids, and tonsillectomy.

In conclusion, PANS/PANDAS is a legitimate diagnosis that describes a subset of children with rapid-onset OCD or tic disorders. The controversy surrounding the diagnosis stems from its newness, the lack of a definitive diagnostic test, and its overlap with other conditions. However, ongoing research and clinical experience support the validity of PANS/PANDAS as a distinct syndrome.

PANS/PANDAS is not a mild condition

• Anxiety: general anxiety, phobias, or separation anxiety
• Behavioral/developmental regression: reverting to "baby talk" or bedwetting
• Emotional lability: depression or sudden changes in emotions
• Oppositional behavior: aggression or irritability
• Sensory or motor abnormalities: sensitivity to stimuli, clumsiness, or hyperactivity
• Somatic symptoms: tics, sleep disturbances, or urinary frequency
• Deterioration of school performance: lack of focus or preoccupation with their new symptoms

The onset of these symptoms is often sudden and dramatic, and they can be severe enough to qualify for diagnoses such as chronic tic disorder, OCD, and TS. The severity of symptoms makes it difficult for children and their families to manage daily life, with many children needing to stay home from school until effective treatment is found.

In addition to the impact on the individual, PANS/PANDAS also carries risks of significant side effects from interventions. Antibiotics are often the first line of defense, but they may be ineffective, especially if the initial infection has subsided. Other treatments such as intravenous immunoglobulin (IVIG), plasmapheresis, and steroids also carry potential side effects.

The misconception that PANS/PANDAS is a mild condition may be due to the fact that it is a relatively new syndrome and is not yet widely recognized or understood by the medical community. However, over two decades of research support the reality of PANS/PANDAS, and it is important to raise awareness and improve understanding among healthcare providers to ensure that children receive proper diagnosis and treatment.

PANS/PANDAS can be diagnosed with a blood test

PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are types of autoimmune disorders that affect the basal ganglia, resulting in neuropsychiatric symptoms including OCD-like behaviours, tics and/or restrictive eating in children and adolescents. PANS and PANDAS are clinical diagnoses based on a patient's symptoms, family history, and laboratory findings. While there is no single definitive test for PANS or PANDAS, there are blood tests that can support a diagnosis. Doctors can use biological markers to assess a patient's condition, including basic blood work such as testing for IgE, IgA, IgM and IgG antibodies, antinuclear antibodies, complete blood count, iron, B12 and vitamin D.

In addition to basic blood work, viral or bacterial testing can be carried out, including strep throat culture, antistreptolysin O, Lyme disease, and coinfections. Further testing can include viral/bacterial testing for streptococcal infections, mycoplasma pneumoniae, Epstein-Barr virus panel, coxsackie A & B titers, and the Cunningham Panel, which tests for autoimmune autoantibody levels.

The Autoimmune Brain Panel (also known as the Cunningham Panel) can support a clinician's diagnosis by measuring the levels of circulating autoantibodies associated with specific neuropsychiatric symptoms reported in PANS and PANDAS. The panel identifies the presence of elevated autoantibodies against brain proteins and neurologic targets, indicating that a patient's symptoms may be due to an infection-induced autoimmune basal ganglia encephalitis, such as PANS and PANDAS.

While there is no single definitive test for PANS or PANDAS, these blood tests can help support a clinical diagnosis by providing laboratory evidence and assisting in determining an appropriate treatment regimen.

PANS/PANDAS is an autoimmune and a mental health condition

PANS/PANDAS is indeed a real condition, first described in 1998, that affects children worldwide. PANS/PANDAS is a controversial hypothetical diagnosis for a subset of children with a rapid onset of obsessive-compulsive disorder (OCD) or tic disorders. The symptoms are dramatic and sudden, and can include motor or vocal tics, obsessions, compulsions, or a combination of these symptoms. Children may also experience other symptoms such as emotional lability, enuresis, anxiety, and deterioration in handwriting.

PANS/PANDAS is thought to be an autoimmune disorder resulting from a post-streptococcal autoimmune process. The proposed link between infection and these disorders is that an autoimmune reaction to infection produces antibodies that interfere with basal ganglia function, causing symptom exacerbations. This autoimmune response results in a broad range of neuropsychiatric symptoms.

The PANDAS hypothesis was based on observations in clinical case studies by Susan Swedo et al. at the US National Institute of Mental Health. The hypothesis is that PANDAS is a subset of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). OCD and tic disorders are hypothesized to arise in a subset of children as a result of this post-streptococcal autoimmune process.

The cause of PANDAS is thought to be similar to that of Sydenham's chorea (SC), which is known to result from childhood group A streptococcal (GAS) infection leading to the autoimmune disorder rheumatic fever, of which SC is one manifestation. Like SC, PANDAS is thought to involve autoimmunity to the brain's basal ganglia.

There is no diagnostic test to accurately confirm PANDAS. The diagnosis of PANDAS is based on clinical features and diagnostic criteria, which include the presence of OCD, a tic disorder, or both; pediatric onset of symptoms; an episodic course of symptom severity; and an association with group A Beta-hemolytic strep infection.

Treatment for children suspected of PANDAS generally follows the standard treatments for Tourette syndrome (TS) and OCD, including cognitive behavioral therapy and medications such as selective serotonin reuptake inhibitors (SSRIs). There is insufficient evidence or consensus to support treatment, and adverse effects from unproven treatments are expected.

PANS/PANDAS treatment

PANS/PANDAS is a rare and lesser-known disorder that is commonly misunderstood and stigmatised in the medical community. It is important to start treatment early as this is one of the most effective ways to manage symptoms and put the disease into remission.

Diagnosis

PANS/PANDAS is often mistaken for other conditions, so meeting with a specialist is the best way to get a diagnosis. A clinical diagnosis will be made by a doctor based on testing for active infections, evaluating signs and symptoms, and ruling out other known neurological or medical disorders.

Treatment options

• Antibiotics can be used to treat and prevent strep or other bacterial infections. They can also help control or reduce symptoms of PANDAS/PANS, such as OCD, anxiety, depression and tics.
• Antivirals can be used if viral infections are persistent.
• Intravenous immunoglobulin treatments (IVIG) address the underlying infection and autoimmune reaction that causes PANDAS/PANS.
• Over-the-counter anti-inflammatory drugs can help control the inflammation caused by the autoimmune response.
• Plasmapheresis (Apheresis) or Plasma Exchange (PEX) is a process during which harmful autoantibodies are removed from the blood system.
• Steroids can reduce the inflammation occurring in the child’s brain.
• Tonsillectomy and adenoidectomy can be used where the chronic infection is reoccurring.
• Cognitive behavioural therapy and/or exposure and response prevention can be used to treat psychiatric symptoms.

Other considerations

If symptoms persist despite treatment, or if no infection can be found, then comprehensive evaluation by a specialist service is recommended.

It is important to eradicate strep infections as well as any other repeat infections, which can cause serious problems. Exposure to illnesses from family and friends should be avoided while the child is healing.

Frequently asked questions