Marianne Martinez
PANS and PANDAS are episodic disorders that typically first appear in childhood, from age 3 to puberty, causing sudden and severe obsessions, compulsions, or both. PANS is caused by any immune-disrupting illness, while PANDAS is specifically caused by a strep infection. Symptoms of PANS and PANDAS can disappear for extended periods and then reappear, with some children experiencing symptoms for months or even years. While there is no specific test to diagnose PANDAS, healthcare providers will evaluate a child's symptoms and perform a physical exam. Treatment for PANS and PANDAS includes antibiotics, cognitive behavioral therapy, selective serotonin reuptake inhibitors (SSRIs), and in some cases, tonsillectomy or intravenous immunoglobulin (IVIG) therapy. While symptoms can go away on their own temporarily, it is important to seek medical advice and treatment to manage the disorder and prevent recurring episodes or chronic symptoms.
| Characteristics | Values |
|---|---|
| Can PANS go away on its own? | PANS is an "episodic illness", meaning symptoms can go away for a while after an infection is treated, but they can come back again, in what is called a flare-up or relapse of the disorder. |
| What causes PANS? | PANS is caused by an immune response that leads to inflammation in the brain. Infections other than strep, immune system disruptions, or environmental factors may cause this reaction. |
| What are the symptoms of PANS? | Symptoms include compulsions (repetitive behaviours a person feels the urge to do) and obsessions (uncontrollable and recurring thoughts). |
| What is the treatment for PANS? | Treatment for PANS includes antibiotics, steroids, immune therapies, and cognitive behavioural therapy. |
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What You'll Learn
PANS/PANDAS is an episodic illness
PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are episodic illnesses. This means that symptoms may disappear for extended periods and then reappear. PANS and PANDAS typically first appear in childhood, from age 3 to puberty, with an average age of onset between 4 and 10 years. Scientists believe that 1 in 200 children suffer from PANS or PANDAS.
PANS and PANDAS are characterised by an abrupt change in behaviour, including the sudden onset of OCD or severely restricted food intake, and the sudden onset of at least two other neuropsychiatric symptoms. These symptoms can include compulsions (repetitive behaviours a person feels the urge to do), obsessions (uncontrollable and recurring thoughts), tics, anxiety, and mood changes.
The episodic nature of PANS and PANDAS means that symptoms can go away for a while after an infection is treated, but they can come back again in what is called a flare-up or relapse of the disorder. These relapses usually occur when a child is exposed to another virus, another case of strep throat, or an environmental substance such as mould or allergens. Symptoms may increase in severity with each episode and can progressively get worse over time.
Treatment for PANS and PANDAS focuses on addressing the underlying cause, managing symptoms, and supporting the immune system. Antibiotics are used to treat current strep infections and can also be used as prophylaxis to prevent new infections while simultaneously calming the autoimmune processes affecting the brain. Cognitive behavioural therapy, selective serotonin reuptake inhibitor (SSRI) medication, or both may be used to help manage OCD, anxiety, tics, or eating issues. Intravenous immunoglobulin (IVIG) therapy is proven to help the majority of children with PANDAS/PANS, but health insurance claims are often denied due to the high cost.
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Symptoms can disappear for extended periods
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus) are episodic disorders, meaning that symptoms may disappear for extended periods and then reappear. PANS and PANDAS typically first appear in childhood, from age 3 to puberty, and are believed to affect 1 in 200 children. The average age of onset is between 4 and 10 years.
PANS is diagnosed when there is a sudden onset of OCD or severely restricted food intake, along with at least two other neuropsychiatric symptoms, such as physical hyperactivity or unusual, jerky movements. PANDAS, a specific type of PANS, is believed to be caused by a strep infection. When the immune system fights the infection, it may mistakenly attack healthy areas of the body, including the brain, leading to the sudden development of OCD, tics, and other symptoms.
The symptoms of PANS and PANDAS can be intense and occur quickly and unexpectedly. They may include compulsions (repetitive behaviors), obsessions (uncontrollable and recurring thoughts), anxiety, mood changes, and tics. In some cases, symptoms may last for months or even years and can progressively worsen over time. However, symptoms do eventually subside for most patients.
Treatment for PANS and PANDAS may include cognitive behavioral therapy, selective serotonin reuptake inhibitor (SSRI) medication, or both, to help manage OCD, anxiety, tics, or eating issues. Antibiotics may also be prescribed to treat active strep infections. In some cases, tonsillectomy has been considered as a treatment option, although the evidence for its effectiveness is inconclusive.
While PANS and PANDAS can be distressing for both children and their parents, early intervention and treatment can lead to full recovery. It is important to work closely with a healthcare provider and seek support from a care team to manage the conditions effectively.
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Treatment options for PANS/PANDAS
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) are episodic disorders, meaning that symptoms may disappear for extended periods and then reappear. While PANS/PANDAS can go away on its own, early treatment is important to minimize relapses, which tend to increase in duration and intensity with each episode.
Antibiotics
Antibiotics are often used to treat PANDAS, especially in cases where there is a history of strep infection. "Beta-lactams" are the most effective antibiotics for GAS (Group A Streptococcal) infections and include penicillin, amoxicillin (including Augmentin), and cephalosporins. Erythromycin, azithromycin, and clindamycin are also effective in treating GAS infections. Antibiotics can help reduce or remit certain symptoms of PANS/PANDAS, and in some cases, they can lead to full or partial remission within 24-48 hours. However, the typical response occurs after a week or two of therapy. Prophylactic antibiotic treatment may also be used to prevent certain symptoms from returning or becoming more severe.
Cognitive Behavioral Therapy (CBT) and Medication
CBT and selective serotonin reuptake inhibitor (SSRI) medication can help manage OCD, anxiety, tics, or eating issues associated with PANS/PANDAS. It is important to work closely with a healthcare provider to manage these conditions and make treatment adjustments as necessary.
Intravenous Immunoglobulin (IVIG)
IVIG is a therapeutic exchange of blood plasma that may be used for children who do not respond to other treatments. While it has shown promise in improving symptoms, it can also cause side effects such as nausea, vomiting, headaches, and dizziness, and there is a risk of infection. Due to these factors, IVIG is typically only considered for severe cases of PANS/PANDAS.
Tonsillectomy
Tonsillectomy is a controversial treatment option for PANS/PANDAS. While some studies suggest that removing the tonsils can lead to a complete resolution of symptoms, other experts believe that more research is needed to determine its effectiveness.
Non-steroidal Anti-inflammatory Drugs (NSAIDs)
NSAIDs like ibuprofen, naproxen, Advil, and Motrin may be beneficial for PANS/PANDAS patients, especially during exacerbations or "mini-flares" that occur after immunotherapy. These drugs can help reduce inflammation, which is believed to play a role in the development of PANS/PANDAS.
Plasmapheresis
Plasmapheresis is an invasive procedure with associated risks and should only be performed in pediatric apheresis centers. It is typically considered for severe or life-threatening symptoms, as it has been shown to provide a quick response.
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PANS/PANDAS diagnosis in children
PANS/PANDAS is a rare disorder that usually affects children between the ages of 3 and 14, with an average age of onset between 4 and 10. It is characterised by a sudden, dramatic onset of neuropsychiatric symptoms, including obsessions/compulsions, food restriction, and various other neurological and neuropsychiatric abnormalities. PANDAS is a subset of PANS and is specifically triggered by a streptococcal infection, such as strep throat, peri-anal strep, or scarlet fever.
The diagnosis of PANS/PANDAS can be challenging due to its rarity and the similarity of its symptoms to other disorders. However, there are some distinct criteria that can help with the diagnosis:
- Abrupt onset of OCD or disabling tics: This is often the most prominent symptom, with children exhibiting intense symptoms of OCD and anxiety.
- Episodic symptom course: Symptoms may come and go, with periods of remission followed by flare-ups or relapses, especially when triggered by another infection or environmental substance.
- Pre-pubertal onset: PANS/PANDAS typically occurs in children before puberty, with the average age of onset between 4 and 10.
- Neurologic and neuropsychiatric abnormalities: These can include irritability, aggression, emotional lability, deterioration of motor skills, visual or auditory hallucinations, sleep disturbances, and more.
- Occurrence of a strep infection: A history of a recent streptococcal infection, such as a positive throat culture for strep, is often present in PANDAS patients.
It is important to note that PANS/PANDAS should be diagnosed by a qualified healthcare provider based on a comprehensive evaluation of the child's symptoms, medical history, and laboratory findings. Early treatment is crucial to reduce the duration and intensity of symptoms and prevent potential long-term psychological and neurological issues. Treatment options may include antibiotics, cognitive behavioural therapy, selective serotonin reuptake inhibitor (SSRI) medication, intravenous immunoglobulin (IVIG) therapy, and non-steroidal anti-inflammatory drugs (NSAIDs).
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PANS/PANDAS impact on parents
PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are severe forms of obsessive-compulsive disorder (OCD) that appear suddenly in young children, typically between the ages of 3 and puberty. PANDAS is a subtype of PANS and is specifically associated with a streptococcal (strep) infection. The symptoms of PANS and PANDAS can be intense and distressing, and they can include compulsions, obsessions, restricted eating, anger, depression, tics, anxiety, and mood changes.
The impact of PANS/PANDAS on parents can be significant. Many parents feel neglected by the medical community and experience high levels of anxiety as they care for their child with PANS/PANDAS. The burden of caregiving can take a toll on the mental, emotional, and physical health of parents, and it can lead to burnout if left unchecked. Parents may feel distressed as they witness their child suffer from the symptoms of PANS/PANDAS, which can come and go over time, with symptoms worsening during relapses or flare-ups.
The process of obtaining a diagnosis for PANS/PANDAS can also be challenging for parents. PANS/PANDAS can be difficult to diagnose, and doctors may be skeptical of a parental rush to diagnosis, assuming that parents may have missed earlier, less severe symptoms. This can lead to feelings of frustration and helplessness for parents who are trying to advocate for their child's health.
Additionally, the treatment options for PANS/PANDAS can be limited and costly. While treatments such as antibiotics, intravenous immunoglobulin (IVIG), plasmapheresis, and non-steroidal anti-inflammatory drugs (NSAIDs) can help minimize the severity of symptoms, they may not be covered by insurance. This can place a financial burden on parents, adding to the stress and challenges they face.
It is important for parents of children with PANS/PANDAS to prioritize their own self-care and well-being. Taking breaks, finding time for themselves, and seeking support from other parents or caregivers can help ease the burden of caregiving and prevent burnout. Additionally, working closely with healthcare providers and staying informed about the latest research and treatment options can empower parents to make informed decisions about their child's care.
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Frequently asked questions
PANS is an "episodic illness", meaning that symptoms can disappear for extended periods and then reappear. Symptoms can go away for a while after an infection is treated, but they can come back again in what is called a flare-up or relapse of the disorder. These relapses usually occur when exposed to another virus, strep throat, or an environmental substance such as mold or allergens.
Children with PANS may experience sudden and severe obsessions, compulsions, or both. Obsessions may manifest as new and intense fears or concerns about things being even, clean, dirty, or a set way. Compulsions may manifest as rituals, such as repeatedly walking in and out of a doorway in an attempt to do it "right". Other symptoms include mood changes, such as irritability, sadness, or a tendency to laugh or cry unexpectedly and inappropriately, and sudden onset of nighttime bed-wetting and/or frequent daytime urination.
Treatment for PANS includes cognitive behavioural therapy (CBT), selective serotonin reuptake inhibitor (SSRI) medication, or both to help manage OCD, anxiety, tics, or eating issues. Tonsillectomy is a controversial treatment option for PANS, as some experts consider the evidence for its effectiveness too incomplete. Intravenous immunoglobulin (IVIG) may be used for children who do not respond to other treatments. Non-steroidal anti-inflammatory drugs (NSAIDs) are often given to patients due to their anti-inflammatory properties.
If you think your child may have PANS, contact your child's doctor right away. It is recommended to start therapy as soon as possible and your doctor can help you find a mental health therapist.
