Tiffany Haney
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) are rare disorders that are often mistaken for other conditions. PANDAS is triggered by a Streptococcal infection, while the trigger for PANS is unknown. Both disorders are characterised by a sudden onset of neuropsychiatric symptoms, specifically OCD and/or tics, as well as uncontrollable emotions, irritability, anxiety, and poor academic performance. The exact prevalence of these disorders is unknown, but estimates range from 1 in 200 to 1 in 11,765 children.
| Characteristics | Values |
|---|---|
| Overall Incidence | 1 in 11,765 children between 3 and 12 years of age |
| Incidence in OCD patients | 5–10 per 1,000 children |
| Incidence according to a parents' website | 1 in 200 children |
| Prevalence in OCD and tic disorders | 25% |
| Mean Age | 6.0 years |
| Cases related to GAS | 46% |
| Presenting Symptom Complex | OCD |
| Cause | Genetic predisposition triggered by an environmental stressor, often an infection |
| Trigger | Streptococcal infection |
| Symptoms | OCD, tics, anxiety, irritability, uncontrolled emotions, depression, eating disorder, deterioration in handwriting skills, aggression, inappropriate or compulsive behaviors, fear, seizures, problems with balance, speech or vision |
| Prognosis | Good for children diagnosed early and with an identified cause |
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What You'll Learn
- PANS and PANDAS are autoimmune complications of infection or other instigating events
- PANDAS is triggered by a Streptococcal infection
- PANS and PANDAS are often overlooked by doctors
- PANS and PANDAS are rare disorders
- Treatment options for PANS and PANDAS include IVIG therapy, steroids, and tonsillectomy
PANS and PANDAS are autoimmune complications of infection or other instigating events
PANS and PANDAS are rare disorders that are presumed to be autoimmune complications of infection or other instigating events. The true lifetime prevalence of PANDAS/PANS is not known, but estimates suggest that it affects 1 in 200 children, with an annual incidence of 1 in 11,765 children between 3 and 12 years of age. The mean age of onset is 6.0 years, and the most common presenting symptom complex is obsessive-compulsive disorder (OCD).
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection) is believed to be triggered by a Streptococcal infection, most commonly Group A Streptococcus (GAS). In contrast, the trigger for PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) is unknown. However, it is believed that children who develop PANS or PANDAS have a genetic predisposition for these syndromes, which are triggered by an environmental stressor, often an infection.
The symptoms of PANS and PANDAS usually present suddenly and intensely and can include OCD, anxiety, tics or other abnormal movements, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, irritability, aggressive behavior, extreme moodiness or depression, deterioration of motor skills, visual or auditory hallucinations, sleep disturbance or fatigue. The severity of symptoms and the onset of PANS/PANDAS can vary from patient to patient, and episodes tend to get longer and worse after each infectious recurrence.
PANS and PANDAS are often overlooked by medical doctors because of the assumption that there is no underlying medical cause for the patient’s psychiatric symptoms. However, it is important to note that PANS and PANDAS are associated with brain inflammation, which occurs when the body’s immune system mistakenly attacks healthy brain cells, leading to autoimmune processes that affect central nervous system function. Treatment for PANS and PANDAS typically involves the use of antibiotics to cure the underlying infection and prevent new infections, as well as intravenous immunoglobulin (IVIG) therapy, which has been proven to help the majority of children with these disorders.
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PANDAS is triggered by a Streptococcal infection
PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a rare condition that affects children from the age of 3 to puberty. It is considered an autoimmune disease triggered by a Streptococcal infection, specifically Group A beta-hemolytic streptococcus or Group A Strep, which causes a sudden onset of obsessive-compulsive disorder (OCD) and behavioural disorders. The symptoms of OCD or tic disorders worsen dramatically and rapidly, within 24 to 48 hours, after a strep infection.
The mechanism behind PANDAS is not yet fully understood, but researchers believe it is the result of an individual's immune system response to the Group A Strep infection. The onset of PANDAS is often dramatic, with both psychological and physical symptoms. Children with PANDAS may experience obsessive thoughts, compulsive behaviours, motor or vocal tics, mood changes, anxiety, and separation anxiety. The symptoms can be so severe that they affect the healthy outcome of a child's life.
PANDAS is typically diagnosed by a healthcare provider based on clinical features, as there are no laboratory tests available for diagnosis. However, laboratory testing can identify a Group A Strep infection, which precedes PANDAS. A throat culture, for example, can be positive for strep, and antibiotics are usually prescribed to get rid of the infection and alleviate PANDAS symptoms. In some cases, hidden strep infections in the sinuses, anus, vagina, or urethral opening of the penis may trigger PANDAS symptoms and require longer courses of antibiotic treatment.
While the true lifetime prevalence of PANDAS is unknown, it is estimated to affect 1 in 200 children, with males being affected more frequently than females at a ratio of 2:1. A retrospective study in the United States found that the estimated annual incidence of PANDAS was 1 in 11,765 children between the ages of 3 and 12, with 46% of cases related to Group A Streptococcal infections.
To reduce the likelihood of PANDAS, it is important to limit the spread of Group A Strep infections by practising good hygiene, including frequent handwashing with soap and water for at least 20 seconds. Antibiotics are recommended for treating Group A Strep infections, and supplemental treatments for PANDAS may include tonsillectomy to prevent further streptococcal infections.
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PANS and PANDAS are often overlooked by doctors
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are often overlooked by doctors due to several reasons. Firstly, these disorders are relatively rare and lesser-known, with an estimated annual incidence of 1 in 11,765 children between the ages of 3 and 12 years old. The true lifetime prevalence of PANS/PANDAS is not known, but it is believed to be similar to that of pediatric cancer, pediatric diabetes, and ALS. This rarity can make it challenging for doctors to recognize and diagnose these conditions.
Secondly, PANS and PANDAS can present with a wide range of symptoms that overlap with conventional psychiatric conditions. Children with PANS/PANDAS may initially be diagnosed with OCD, generalized anxiety disorder, Tourette's syndrome, anorexia nervosa, or bipolar disorder. The sudden onset and fluctuating nature of symptoms are what set PANS and PANDAS apart from these other disorders. However, without a comprehensive understanding of these conditions, doctors may overlook the unique characteristics of PANS and PANDAS and attribute the symptoms to more commonly recognized disorders.
Additionally, PANS and PANDAS are often overlooked due to the assumption that there is no underlying medical cause for the patient's psychiatric symptoms. In the past, conventional medicine has tended to separate psychiatry from immunology and infectious disease, leading to a potential underrecognition of the immune-related underpinnings of PANS and PANDAS. However, it is now understood that PANS and PANDAS are likely triggered by environmental stressors, often infections, resulting in an immune-mediated attack on the brain. This new understanding highlights the importance of considering the underlying medical causes of psychiatric symptoms.
Furthermore, the diagnosis of PANS and PANDAS can be challenging due to the lack of validated testing. Currently, there is no single test that can fully confirm the presence of PANS or PANDAS. Instead, the diagnosis is made by evaluating active infections, signs, symptoms, medical history, and laboratory findings while ruling out other known neurological or medical disorders. This complex diagnostic process may contribute to PANS and PANDAS being overlooked or misdiagnosed, especially if the evaluating physician is unfamiliar with these conditions.
To address the issue of PANS and PANDAS being overlooked, several PANS/PANDAS centers have been established at major institutions, including Stanford University and Massachusetts General Hospital. These centers take an integrative and functional medicine approach to provide a broader framework for understanding and treating these often-disabling conditions. Additionally, research is rapidly developing in this field, with efforts focused on understanding the underlying causes, improving diagnostic tools, and identifying effective treatments for PANS and PANDAS.
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PANS and PANDAS are rare disorders
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection) are rare disorders that are often mistaken for other conditions. The true lifetime prevalence of PANDAS/PANS is unknown. However, a retrospective study performed in three geographically and demographically diverse sections of the US showed that the estimated annual incidence of PANDAS/PANS was 1 in 11,765 children between 3 and 12 years of age, with considerable variation across geography and time.
PANS and PANDAS are presumed autoimmune complications of infection or other instigating events. PANDAS is an autoimmune condition that occurs following infection with Group A Streptococcus (strep). PANDAS patients test positive for known triggers, such as strep throat, peri-anal strep, or scarlet fever. PANS, on the other hand, has an unknown trigger. Blood tests conducted on children with PANS may show signs of inflammation.
The symptoms of PANS include the sudden onset of obsessive-compulsive disorder (OCD) or severely restricted food intake, along with other criteria such as mood swings, depression, irritability, aggression, behavioural regression, and sudden deterioration in school performance. PANDAS patients experience similar symptoms, specifically OCD and/or tics (involuntary, purposeless movements). Children with PANS or PANDAS may also become moody, irritable, and anxious, and have difficulty with schoolwork.
The prognosis for children with PANS or PANDAS can be very good if they are diagnosed early and a cause is identified. Treatment options include antibiotics for strep, intravenous immunoglobulin (IVIG) therapy, plasmapheresis or plasma exchange (PEX), steroids, tonsillectomy, adenoidectomy, and cognitive behavioural therapy.
It is important to note that PANS and PANDAS are often overlooked by medical doctors due to the assumption that there is no underlying medical cause for the patient's psychiatric symptoms. However, meeting with a specialist is the best way to obtain an accurate diagnosis.
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Treatment options for PANS and PANDAS include IVIG therapy, steroids, and tonsillectomy
While the true lifetime prevalence of PANDAS/PANS is unknown, it is estimated that PANDAS affects 1 in 200 children. A retrospective study performed in three geographically and demographically diverse sections of the US showed that the estimated annual incidence of PANDAS/PANS was 1 in 11,765 children between 3 and 12 years of age.
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection) are presumed autoimmune complications of infection or other instigating events. PANS is characterised by the abrupt, dramatic onset of obsessive-compulsive disorder (OCD) or eating restriction, accompanied by equally abrupt and severe comorbid neuropsychiatric symptoms. PANDAS is a heterogeneous syndrome identified as post-Streptococcus pyogenes infection complications regarding the central nervous system with specific involvement of neuropsychiatric and behavioural skills.
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Frequently asked questions
PANS/PANDAS is a rare disorder, and the true lifetime prevalence is unknown. A retrospective study performed in three geographically and demographically diverse sections of the US showed that the estimated annual incidence of PANDAS/PANS was 1 in 11,765 children between 3 and 12 years of age. Another source estimates that PANDAS affects 1 in 200 children.
PANS/PANDAS can cause a dramatic onset of OCD, restricted food intake, tics, anxiety, irritability, uncontrolled emotions, and/or depression. Children may also experience deterioration in handwriting skills, school performance, and academic functioning.
Intravenous immunoglobulin (IVIG) therapy has been proven to help the majority of children with PANS/PANDAS. Other treatments include plasmapheresis (Apheresis) or Plasma Exchange (PEX), steroids, tonsillectomy and adenoidectomy, and cognitive behavioral therapy.
