Tillie Doyle
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are autoimmune disorders that can affect children between the ages of 3 and puberty. PANS/PANDAS can cause children to exhibit symptoms such as OCD, food avoidance, anxiety, sensory amplification, and motor abnormalities. The exact cause of PANS/PANDAS is still unknown, but it is believed to be triggered by an autoimmune response to infections such as strep, mycoplasma, influenza, or other viruses. While most children will outgrow PANS/PANDAS by adolescence or young adulthood, the symptoms can last for months or even years and can progressively get worse. If you suspect your child has PANS/PANDAS, it is important to seek medical help as early diagnosis and treatment can make a significant difference.
| Characteristics | Values |
|---|---|
| Diagnosis | PANS/PANDAS diagnosis is not widely recognised and can be difficult to diagnose. |
| Symptoms | Abrupt onset of OCD or food avoidance, along with neuropsychiatric symptoms such as sleep disturbances, urinary accidents, and more. |
| Treatment | Antibiotics are the primary treatment. Steroids can help ease inflammation and reduce symptoms. Cognitive Behaviour Therapy (CBT) can also help children cope with psychological symptoms. |
| Age | PANS can occur in children from ages 3 to puberty. PANDAS requires symptom onset prior to puberty. |
| Causes | PANS is caused by an autoimmune response to infection. PANDAS is triggered by Group A Streptococcal infections. |
| Recurrence | Symptoms can go away after an infection is treated but can come back, usually when the child is exposed to another virus or environmental substance. |
| Severity | PANS has three severity levels: Mild, Moderate, and Severe. |
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What You'll Learn
PANS/PANDAS diagnosis and symptoms
PANS (Paediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are rare autoimmune disorders that can cause severe and acute behavioural changes in children. PANDAS is a subset of PANS that is associated with strep infections.
PANS/PANDAS can be difficult to diagnose because not every child has the same symptoms, and there is no single test to confirm the diagnosis. The diagnosis should be considered when symptoms of OCD, eating restrictions, or tics start suddenly and are accompanied by other emotional and behavioural changes, frequent urination, motor abnormalities, and/or handwriting changes. The symptoms of PANS/PANDAS can be so extreme that parents may report that their child seemed to "'change overnight".
To diagnose PANS/PANDAS, doctors will evaluate the child's medical history, perform a physical examination, and rule out other conditions that could be causing the symptoms. This may include ordering a strep test, urine test, and blood work to check for infections or other issues. The child may also need to be evaluated by a behavioural health specialist as part of the assessment.
The symptoms of PANS/PANDAS can include:
- Obsessive-compulsive disorder (OCD): This may present as a sudden onset of severe obsessions, compulsions, or both. Children with PANS/PANDAS may engage in constant handwashing, have intense fears or concerns about things being clean or dirty, or perform rituals such as walking in and out of a doorway repeatedly.
- Eating restrictions: Children with PANS/PANDAS may severely restrict their food intake due to fears of contamination, choking, or vomiting. This can lead to extreme weight loss and may require hospitalization and the use of a feeding tube.
- Anxiety: Separation anxiety can appear suddenly and be overwhelming, with children needing to sleep with their parents. Panic attacks are also common.
- Sensory amplification: Children may become intensely bothered by smells, tastes, sounds, and textures, causing difficulties with daily routines such as brushing teeth, eating, and dressing.
- Motor abnormalities: Children may exhibit motor and vocal tics, handwriting changes, and/or clumsiness.
- Irritability or aggressive behaviour: Children with PANS/PANDAS may display extreme moodiness, depression, or aggressive behaviour.
- Sleep disturbances: Children may experience difficulty sleeping or bedwetting.
- Tics and unusual movements: PANS/PANDAS can cause tics and unusual movements, such as involuntary movements.
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Treatment options
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections) are severe forms of OCD (obsessive-compulsive disorder) that appear suddenly in young children, accompanied by other distressing symptoms. PANDAS is a subset of PANS, triggered by Group A Streptococcal infections.
- Antibiotics: Antibiotics are the primary treatment for PANS and PANDAS. They are used to treat the illness and reduce or control symptoms. Beta-lactams are the most effective antibiotics for GAS (Group A Streptococcal) infections and include penicillin, amoxicillin, and cephalosporins. Erythromycin, azithromycin, and clindamycin are also effective in treating GAS infections. Antibiotics may not be the best option if the infection has already passed.
- Anti-inflammatories: Non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, naproxen, Advil, and Motrin can help with inflammation-related symptoms or the inflammatory side effects of other treatments. Natural anti-inflammatories like curcumin (found in turmeric) may also help.
- Corticosteroids: Corticosteroid therapy has shown positive results in some children with PANS/PANDAS. However, corticosteroids can trigger aggression and mania, so they may not be suitable for all children.
- Intravenous immunoglobulin (IVIG): IVIG is a therapeutic exchange of blood plasma administered to children who get no relief from other treatments. It is costly, and most insurance plans do not cover it.
- Plasmapheresis: Plasmapheresis is the removal, filtering, and return of blood plasma. It is an invasive procedure with associated risks, so it should only be done in pediatric apheresis centers. It has been shown to significantly improve symptoms, with some children experiencing near-complete symptom resolution.
- Tonsillectomy: Tonsillectomy is a controversial treatment option for PANS and PANDAS. Some studies have shown that removing the tonsils can eliminate symptoms completely, but more research is needed to determine its effectiveness.
- Cognitive-behavior therapy (CBT): CBT can help children cope with the psychological symptoms of PANS, teaching them to face their fears and calm their minds and bodies.
- Supplements: Certain supplements, such as Omega 3 fish oil, may help reduce inflammation in children with PANS.
- Support and education: Support groups for parents, caregivers, and family members of children with PANS or PANDAS can help reduce feelings of isolation and provide access to new coping strategies. Family education and support are critical, especially in the early stages of the illness.
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Triggers and causes
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is characterised by the abrupt onset of obsessive-compulsive symptoms (OCD) or eating restrictions, along with acute behavioural deterioration in at least two designated domains. While the criteria for diagnosing PANS do not specify a trigger, the syndrome is thought to be an immune reaction to one or more pathogens, or physiological stressors, including:
- Group A Streptococcal infection (the most common trigger)
- Mycoplasma pneumonia infection
- Influenza
- Upper respiratory infections
- Sinusitis
- Psychosocial stresses
- Lyme disease
- Indoor air quality (IAQ)
- Mold
- Allergies
- Emotional trauma and stress
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subset of PANS. PANDAS is triggered by Group A Streptococcal infections, which can be caused by a number of chemicals, pollutants, and contaminants within the home. PANDAS has been reported to occur in association with perianal strep infections and strep in the nasal cavity.
Symptoms of PANS and PANDAS can range from mild to severe and may include a large number of possible combinations. Once a child has experienced PANS/PANDAS, they may experience flare-ups or "exacerbations", especially if exposed to the same offending bacteria or viral agent.
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Impact on child's life
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a rare disorder that causes a dramatic onset of symptoms like obsessions and compulsions, extreme irritability, or sensory issues. The symptoms can come on quickly, sometimes overnight, and last for weeks, months, or even longer. PANS is often misdiagnosed or undiagnosed, and it can be difficult to distinguish it from the onset of other mental health conditions.
The impact of PANS on a child's life can be significant and far-reaching. Children with PANS may experience extreme behavioral changes, including sudden and intense mood swings, anxiety, aggression, and irritability. They may develop obsessions and compulsions, such as restrictive eating or constant handwashing, which can lead to anorexia and extreme weight loss requiring hospitalization. The child may also experience panic attacks and constant feelings of panic, with parents reporting that their child is in a state of near-constant panic in the initial days.
Separation anxiety is another common symptom, with older children suddenly needing to sleep with their parents due to overwhelming anxiety. Children with PANS may also exhibit motor and vocal tics, clumsiness, and handwriting changes. They can become intensely bothered by sensory stimuli such as smells, tastes, sounds, and textures, which can cause difficulties with daily routines like brushing teeth, eating, and dressing. Schoolwork and academic performance are often affected, and the child may experience deterioration in their handwriting skills.
The impact of PANS extends beyond the child, as it also takes a toll on the parents and caregivers. Parents may feel traumatized by the experience and struggle with their own mental health and relationships. They may also face stigma and judgment from others, who might attribute the child's behavior to poor parenting or a lack of acknowledgment of mental health issues.
The episodic nature of PANS can make it challenging for parents to identify the initial signs, and they may question their recollection of their child's behavior. The symptoms of PANS can be debilitating and baffling, requiring careful medical history, physical examinations, and a multidisciplinary approach to ensure proper diagnosis and treatment.
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Support for parents
Parenting a child with PANS or PANDAS can be a lonely and challenging experience. It is important to remember that PANS/PANDAS is a physical illness and should be treated as such. Children with PANS/PANDAS are not acting out or being defiant; they are terrified and need your support.
As a parent, you may experience unpleasant feelings as a result of your child's extreme behavioural changes. It is common for parents to feel guilt and loneliness, as friends and family may become scarce. It is important to remember that you are not alone, and there is support available.
The first step in getting support is to seek a diagnosis from a qualified medical professional. PANS/PANDAS can be difficult to diagnose, and a multi-disciplinary approach may be required. Your child's doctor will take a detailed medical history, perform a physical examination, and may order tests to rule out other conditions. They may refer you to a specialist for further evaluation.
Once a diagnosis is made, treatment options include medication and therapy. Cognitive behavioural therapy (CBT) is often recommended for OCD symptoms, and can help to reduce ritual behaviours and improve other behavioural and mood symptoms. Therapists will also work closely with parents to provide guidance and support, and to coach them on how to manage their child's symptoms.
In addition to professional support, there are also resources and support groups specifically for parents of children with PANS/PANDAS. These can provide an opportunity to connect with other parents who are going through similar experiences and can offer advice and guidance.
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Frequently asked questions
PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. It is an autoimmune disorder that causes a sudden onset of OCD or severely restricted food intake.
Symptoms of PANS include anxiety, sensory amplification, motor abnormalities, and vocal and physical tics. Children with PANS may also experience sleep disturbances and urinary accidents.
Antibiotics are the primary treatment for PANS. If a child has a strep infection, antibiotics are necessary to treat the illness. Steroids can also be used to ease inflammation in the brain and reduce symptoms.
Yes, it is possible for PANS to last for over a year. Symptoms of PANS can come and go, with flare-ups or relapses occurring after exposure to another virus or infection. In some cases, symptoms can progressively get worse over time. However, studies suggest that about 95% of children will outgrow PANS by adolescence or young adulthood when their immune systems fully mature.
