Cody Casey
If your child has suddenly developed severe symptoms of Obsessive-Compulsive Disorder (OCD) and anxiety, it may be a sign of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) or its subset, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections (PANDAS). PANS/PANDAS is a rare condition that causes abrupt and dramatic shifts in a child's ability to function, with symptoms including compulsive behaviours, intense fears, emotional outbursts, tics, and even physical symptoms like joint pain. The exact cause is still under investigation, but the consensus is that it is caused by an abnormal immune response to an infection, which results in inflammation in the basal ganglia region of the brain. If you suspect your child may have PANS/PANDAS, it is important to seek medical guidance as soon as possible, as early diagnosis and treatment are key to helping your child achieve the best possible outcome.
| Characteristics | Values |
|---|---|
| Diagnosis | There is no single test to confirm PANS/PANDAS. |
| Symptoms | Abrupt onset of OCD, food avoidance, anxiety, mood swings, tics, and physical symptoms like joint pain. |
| Treatment | Antibiotics, anti-inflammatory medication, steroids, and cognitive behavioral therapy. |
| Age | Children between the ages of 3 and 13 are most susceptible, with 8 being the age of highest risk. |
| Sex | Boys are more than twice as likely to be affected than girls. |
| Family History | Family history of autoimmune illness, strep-related illness, and psychiatric illness is often present. |
| Triggers | Strep infections, environmental toxins, Lyme disease, influenza, and psychological stress. |
| Prognosis | Early diagnosis and treatment are key to a good outcome. Some children recover completely, while others may experience ongoing challenges. |
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What You'll Learn
PANS/PANDAS symptoms and diagnosis
PANS/PANDAS is an autoimmune disorder that can cause a range of symptoms in children. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, while PANDAS is a subset of PANS associated with streptococcal infections and stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The exact cause of PANS/PANDAS is still under investigation, but it is believed to be caused by an abnormal immune response to an infection, where the immune system mistakenly targets the basal ganglia region of the brain, affecting thoughts, feelings, movement, and behaviours.
Symptoms of PANS/PANDAS typically appear suddenly and can vary from patient to patient. They may include:
- Obsessive-compulsive disorder (OCD) or obsessive-compulsive behaviour: Children may develop intense fears or concerns about things being clean, even, dirty, or a certain way. They may also engage in compulsive rituals such as repetitive handwashing, checking locks, ordering or hoarding.
- Restricted eating or food avoidance: Children may exhibit disinterest in food or develop severely avoidant/restrictive food intake.
- Mood disorders: Children may experience rapid mood swings, depression, irritability, rage, anxiety, or emotional lability.
- Behavioural changes: This can include aggressive behaviour, oppositional behaviour, or developmental regression.
- Sleep disturbances: Children may experience difficulty sleeping or sleep too much, resulting in fatigue.
- Tics and unusual movements: Children may develop tics similar to those seen in Tourette Syndrome, as well as involuntary movements or deterioration of motor skills.
- Sensory abnormalities: Sensitivity to light, sound, and touch may occur.
- Urinary symptoms: Urinary frequency, urgency, and bedwetting (enuresis) can be signs of PANS/PANDAS.
- Deterioration in school performance: Children may experience decreased processing speed, memory issues, difficulty in math, poor concentration, and reduced coordination.
To diagnose PANS/PANDAS, there is no single test, and the condition is often misdiagnosed or underdiagnosed. A clinical diagnosis is made by a doctor based on evaluating active infections, signs, symptoms, medical history, and laboratory findings while ruling out other neurological or medical disorders. The PANDAS Physicians Network (PPN) provides flowcharts to help clinicians determine the appropriate diagnosis and severity-based treatment protocols. Treatment options include antibiotics, anti-inflammatory medications, IVIG, and plasmapheresis, along with cognitive-behavioural therapy.
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Treatment options
If you suspect your child may have PANS or PANDAS, it is important to seek medical advice from your doctor as soon as possible. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are often characterised by the sudden onset of severe OCD symptoms, obsessions, compulsions, tics, or eating restrictions, along with symptoms from other categories. Treatment options typically involve a combination of medication and therapy, with the involvement of child psychologists, psychiatrists, neurologists, and therapists. Here are some detailed treatment options:
Medication
Medications such as antibiotics and anti-inflammatory drugs may be prescribed to address any underlying infections or inflammation. In some cases, selective serotonin reuptake inhibitors (SSRIs) may be recommended to target neurotransmitters linked to anxiety. If there are concerns about immunodeficiency, a referral to immunology may be suggested.
Cognitive Behavioral Therapy (CBT)
CBT is a common treatment approach for PANS/PANDAS. It involves working with a trained mental health therapist to help the child and their family cope with anxiety, behavioural changes, and emotional challenges. CBT often includes exposure response prevention (ERP) techniques to help children gradually face their fears and manage their anxiety during and between flares.
Therapy for OCD
Therapy specifically targeting OCD symptoms is an important component of treatment. This may include exposure and response prevention techniques to reduce ritual behaviours associated with OCD. Habit reversal therapy can also be effective for children with tics. Therapists work closely with parents to guide them in managing their child's symptoms and providing comfort during stressful episodes.
Multi-Disciplinary Approach
Due to the complex nature of PANS/PANDAS, a multi-disciplinary approach may be necessary. This involves careful consideration of the child's medical history and physical examinations to rule out other conditions that could be causing similar symptoms. A range of specialists, including child psychologists, psychiatrists, and neurologists, may be involved in the assessment and treatment process.
Family Support
The impact of PANS/PANDAS on both the child and their family can be significant. Doctors and mental health experts provide guidance and support to help families navigate challenging times. This includes educating families about the disorder, offering strategies for managing symptoms, and addressing any concerns or questions they may have.
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Triggers and causes
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is characterised by the sudden onset of obsessive-compulsive symptoms (OCD) or eating restrictions, along with acute behavioural deterioration in at least two designated domains. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subset of PANS, triggered specifically by a strep infection.
PANS and PANDAS can be caused by a problem with the immune system's response to an infection. Instead of attacking the germs, the immune system targets the basal ganglia, a part of the brain that affects thoughts, feelings, movement, and other behaviours. This irritation in the basal ganglia is believed to lead to the symptoms of PANS/PANDAS.
PANS can be triggered by viruses, bacteria, mold, allergies, and even emotional trauma and stress. PANDAS is specifically triggered by strep infections, including strep throat, perianal strep infections, and strep in the nasal cavity. PANDAS has also been associated with a history of exposure to Group A Streptococcus (GAS) infections.
PANS and PANDAS can also be triggered by poor indoor air quality (IAQ), which can be influenced by various chemicals, pollutants, and contaminants within the home, such as mold, household cleaner chemicals, fire retardants, volatile compounds in rugs, and smoke.
There is no single test to confirm PANS/PANDAS, and it is a newly recognised condition, so not all doctors are knowledgeable about it. Recurrences of PANS symptoms may be triggered by viral illnesses, and existing cases can be triggered into relapse or exacerbated by poor indoor air quality.
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Impact on family
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) can have a significant impact on the lives of children and their families. The conditions can cause a sudden onset of severe OCD symptoms, including obsessions, compulsions, or both. Children with PANS/PANDAS may develop new and intense fears or concerns about things being even, clean, or dirty. They may also exhibit compulsive behaviours such as repetitive handwashing, checking locks, ordering/symmetry, hoarding, restrictive eating, and repetitive questioning. These symptoms can be extremely distressing for parents to witness and can lead to feelings of guilt, worry, and helplessness.
The impact of PANS/PANDAS on a child's development can be profound, affecting their emotional, social, cognitive, and academic growth. Parents may notice a deterioration in their child's school performance, including decreased processing speed, memory issues, and difficulty with mathematics. The conditions can also cause mood disorders, with children experiencing rapid shifts from happiness to sadness to anger. These mood changes can be confusing and distressing for both the child and their family members.
Treating PANS/PANDAS can be challenging and often requires a multidisciplinary approach. While antibiotics and anti-inflammatory medications can be effective in treating the underlying infection, residual OCD symptoms may persist despite treatment. Cognitive-behavioural therapy (CBT) is often recommended to help children manage their obsessions and compulsions. However, finding a qualified therapist who specialises in treating OCD in children can be difficult. The financial burden of treatment can also be significant, especially if multiple therapies or medications are required.
The stress and uncertainty of dealing with PANS/PANDAS can take a toll on the entire family. Parents may struggle to balance their child's medical needs with the demands of daily life, work, and caring for other family members. Siblings may feel confused, neglected, or resentful as attention shifts to the child with PANS/PANDAS. Family dynamics and relationships can become strained, and parents may experience increased stress, anxiety, or depression.
It is important for families affected by PANS/PANDAS to seek support and guidance from medical professionals, therapists, and support groups. Early diagnosis and intervention are crucial for improving outcomes and helping children and their families manage the impact of these conditions.
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Outlook and recovery
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are autoimmune disorders that can cause a sudden onset of severe OCD symptoms in children. PANDAS is a subset of PANS, but its symptoms are triggered by a streptococcus infection, such as strep throat.
If you suspect your child may have PANS or PANDAS, it is important to seek medical advice as soon as possible. While there is currently no single test to confirm these disorders, early diagnosis and treatment are key to recovery. Treatment with antibiotics and/or anti-inflammatory medication may be sufficient if the diagnosis is recognised early. However, due to the newness of these conditions, not all doctors are knowledgeable about them, and a multi-disciplinary approach may be required.
Once diagnosed, children with PANS or PANDAS can be treated with medicines and therapy. Cognitive behavioural therapy (CBT) is often recommended, and in some cases, aggressive immunomodulatory treatment has been shown to improve symptoms. While there is no "quick fix", early intervention and ongoing treatment can help manage symptoms and improve outlook.
The outlook for children with PANS or PANDAS can vary. In some cases, residual OCD symptoms may persist despite treatment. However, early diagnosis and intervention are associated with better outcomes. Recurrences of symptoms are common, and parents should be prepared for the possibility of relapses.
Overall, the prognosis for PANS and PANDAS is positive with proper treatment and support. It is important to work closely with medical professionals and therapists to ensure the best possible outcome for your child.
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Frequently asked questions
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is a clinical diagnosis characterised by the sudden onset of severe changes in a child's mental health and behaviour. It is believed to be caused by an immune system response that affects the brain.
The main symptom of PANS is abrupt-onset OCD. Other symptoms include anxiety, emotional outbursts, physical symptoms like motor tics or joint pain, food avoidance, sleep disturbances, and urinary accidents.
Antibiotics are the primary treatment for PANS. Cognitive Behaviour Therapy (CBT) can also help children cope with the psychological symptoms of PANS.
