Understanding Pandas: A Persistent Data Challenge

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a complex disorder that affects children, causing them to exhibit severe physical, neurological, and psychological symptoms that interfere with their daily lives. The condition is triggered by a streptococcal (strep) infection, such as strep throat or scarlet fever, leading to an abnormal immune response that attacks healthy cells in the brain. While PANDAS is a recognised condition, some doctors are sceptical of it, arguing that it should be treated with classical OCD treatments. So, does PANDAS go away?

What is PANDAS?

PANDAS is a complex disorder with a wide range of symptoms that vary from patient to patient. The acronym stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. This disorder is the result of a Group A Streptococcal bacterial infection, commonly known as "strep throat".

PANDAS is characterised by the sudden onset of obsessive-compulsive disorder (OCD) and/or severe eating restrictions, along with at least two other cognitive, behavioural, or neurological symptoms. These can include anxiety, behavioural or developmental deterioration, emotional distress, irritability, a sudden decrease in school performance, and motor or sensory abnormalities. The changes in personality and behaviour are quick and dramatic, starting abruptly after a strep throat infection.

The underlying cause of PANDAS is believed to be an autoimmune attack on healthy brain tissue following a strep infection. The strep bacteria disguise themselves as normal cells, evading detection by the immune system. When the immune system eventually finds and fights them, it also mistakenly attacks the healthy cells that the bacteria were imitating. This attack on healthy brain cells leads to an autoimmune condition that affects the central nervous system (CNS) function.

PANDAS is typically diagnosed based on specific clinical criteria, as there are no lab tests or blood tests to confirm the disorder. The diagnostic criteria include the presence of OCD or a tic disorder, the onset of symptoms between the ages of 3 and puberty, and a history of a strep infection. Treatment for PANDAS involves medication and therapy, with antibiotics being used to treat the underlying strep infection.

While PANDAS can be a frightening diagnosis for parents, it is important to know that it is treatable and most children will make a full recovery. Symptoms may take time to improve and can come and go, but with proper treatment, they will eventually subside.

PANDAS symptoms

PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is characterised by dramatic and sudden changes in a child's personality and behaviour. These changes can include:

• Obsessive-compulsive disorder (OCD)
• Tics or jerky movements
• Anxiety, depression, or mood swings
• Aggressive or "hyper" behaviour
• Baby talk or clinginess
• Bedwetting
• Sensory problems, such as being very sensitive to light
• Symptoms of ADHD, such as hyperactivity, fidgeting, and trouble paying attention

The symptoms of PANDAS typically appear in childhood, from age 3 to puberty, and are usually triggered by a streptococcal (strep) infection, such as strep throat or scarlet fever. While the exact cause of PANDAS is not fully understood, it is believed to be an autoimmune disorder, where the body's immune system attacks healthy cells in the brain.

The diagnosis of PANDAS is based on clinical criteria, as there are no specific lab tests available. Treatment for PANDAS typically involves a combination of medication and therapy, including antibiotics to treat the underlying strep infection, anti-inflammatories to calm the immune system, and cognitive behavioural therapy to manage OCD symptoms.

PANDAS diagnosis

PANDAS is a complex disorder with a wide range of symptoms unique to each patient. It stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. This childhood disorder is caused by a Group A Streptococcal bacterial infection, commonly known as "strep" or "strep throat".

The diagnosis of PANDAS is a clinical diagnosis, meaning there are no lab tests that can diagnose it. Instead, healthcare providers use diagnostic criteria, which include:

• The presence of Obsessive-Compulsive Disorder (OCD), a tic disorder, or both.
• Pediatric onset of symptoms, typically between the ages of 3 and puberty.
• Episodic course of symptom severity, with dramatic ups and downs.
• Association with Group A Beta-hemolytic strep infection, such as a positive throat culture or history of scarlet fever.
• Association with neurological abnormalities, such as physical hyperactivity or unusual, jerky movements beyond the child's control.
• A very abrupt onset or worsening of symptoms.

If the symptoms have been present for more than a week, blood tests may be done to detect a preceding strep infection. A test for strep bacteria or a history of the bacteria is necessary to confirm PANDAS. If it is not found after a throat swab or antibody test, other areas where strep tends to hide, such as the sinuses, bottom, or genitals, should be checked. A blood test can reveal a recent strep infection even if the child has recovered.

While PANDAS is typically considered a pediatric disorder, it is possible, although rare, for it to occur in adolescents. It is unlikely to be diagnosed in adults, as reactions to strep infections are uncommon after the age of 12.

The diagnostic criteria for PANDAS/PANS (pediatric acute-onset neuropsychiatric syndrome) are specific and consist of the following:

• The sudden, dramatic onset of obsessive-compulsive disorder or extremely restricted food intake.
• The simultaneous appearance of additional neuropsychiatric symptoms with an acute, severe onset from at least two of the following seven categories: irritability, aggression, motor or sensory abnormalities, emotional lability or depression, behavioural regression, a decline in school performance, and somatic symptoms such as sleep disturbances or increased urinary frequency.

These symptoms must not be better explained by another general medical or neurological disorder. Using various tests, including strep cultures, allergy tests, immunological tests, brain scans, and the Cunningham panel, healthcare providers can help identify PANDAS/PANS symptoms and rule out other psychological, neurological, and medical conditions.

PANDAS treatment

PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a rare disease that occurs when a child develops obsessive-compulsive disorder (OCD), a tic disorder, or both, following a streptococcal (strep) infection. The symptoms of PANDAS typically appear suddenly and can be quite dramatic, including motor or vocal tics, obsessions, compulsions, mood swings, irritability, anxiety attacks, and separation concerns.

While PANDAS can be a frightening experience for both children and their parents, it is important to remember that it is treatable, and most children make a full recovery with early and timely intervention. Here are some of the common treatment options for PANDAS:

Antibiotics

The primary goal of antibiotic treatment in PANDAS is to eradicate the underlying strep infection causing the symptoms. Antibiotics such as penicillin, amoxicillin, and cephalosporins are typically used, and the response to treatment usually occurs within a week or two. However, it is important to note that antibiotics do not "cure" PANDAS but help manage the symptoms associated with brain inflammation.

Anti-Inflammatories

Anti-inflammatory drugs, including steroids and non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, can be used to calm the immune system and reduce inflammation. These medications can be beneficial in controlling the OCD and anxiety symptoms associated with PANDAS.

Cognitive Behavioral Therapy (CBT)

CBT is a form of psychotherapy that helps children with PANDAS manage their OCD thoughts and fears. It provides them with strategies to cope with their obsessions and compulsions. Parents are also encouraged to learn about CBT techniques to support their children in applying them at home.

Intravenous Immunoglobulin (IVIG) Therapy

IVIG therapy is an immunoglobulin solution administered intravenously to treat immune deficiencies and encephalitis. While it does not correct the underlying deficiency, it replaces the missing immunoglobulin in the bloodstream. Research has shown that IVIG therapy can reduce PANDAS symptoms by up to 60%, but it may require multiple rounds of treatment.

Plasmapheresis (Plasma Exchange)

Plasmapheresis is an invasive procedure where harmful autoimmune antibodies are removed from the blood. It is considered a more aggressive treatment option and is typically reserved for severe cases of PANDAS or when other treatments have not been effective. It should only be performed in pediatric apheresis centers due to the associated risks.

Antidepressants

Selective serotonin reuptake inhibitors (SSRIs) are a type of medication that can be used to manage OCD symptoms in children with PANDAS. However, it is important to closely monitor the dosage and side effects, as children with PANDAS may be more sensitive to these medications.

It is important to note that the treatment for PANDAS may vary depending on the individual case, and a combination of these treatments may be recommended. Additionally, early diagnosis and treatment are crucial in managing PANDAS effectively and preventing relapses. Seeking medical advice from a qualified healthcare professional is essential to determine the most appropriate treatment plan for your child.

PANDAS prognosis

PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a rare condition that affects approximately one in 200 children. While most children recover completely from PANDAS with treatment, the prognosis can vary depending on the severity of the illness.

Mild cases of PANDAS may cause impairments in certain situations or settings, such as a child needing a parent to stay with them while falling asleep but still being able to attend school or visit friends. Treatment for mild cases may include antibiotics, corticosteroids, anti-inflammatories, and cognitive-behavioural therapy (CBT).

Moderate cases of PANDAS can interfere with daily activities, occupying 50-70% of a child's waking hours. Treatment for moderate cases may include a longer course of antibiotics, corticosteroids, non-steroidal anti-inflammatory drugs (NSAIDs), and immunomodulatory therapy such as intravenous immunoglobulin (IVIG).

Severe cases of PANDAS are defined by symptoms that are incapacitating, life-threatening, or occupy 71-100% of waking hours. Treatment for severe cases may include more aggressive approaches, such as plasmapheresis, IVIG, or a therapeutic dose of antibiotics.

In some cases, PANDAS can become a chronic autoimmune condition, requiring more aggressive treatment. While there have been no long-term studies of PANDAS patients, clinicians have reported that treated patients are highly functioning and, in many cases, no longer exhibit significant symptoms in young adulthood.

It is important to note that PANDAS is typically a paediatric disorder, with onset from age 3 to puberty, and reactions to strep infections are rare after age 12. However, researchers acknowledge that PANDAS could occur, albeit rarely, in adolescents.

Frequently asked questions