Ella Walter
PANS and PANDAS are severe forms of obsessive-compulsive disorder (OCD) that appear suddenly in young children, accompanied by other distressing symptoms. While there is no conclusive treatment for PANS/PANDAS, the PANS/PANDAS Research Consortium (PRC) has published treatment guidelines in the Journal of Child and Adolescent Psychopharmacology. Treatment typically involves a three-pronged approach targeting symptoms, infections, inflammation, and the immune system. Antibiotics are often prescribed to treat underlying infections, and steroids or anti-inflammatory drugs may also be used. For more severe cases, psychiatric treatment, including cognitive behavioral therapy and medication, may be necessary.
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What You'll Learn
- Antibiotics and steroids are used to treat acute, short-term infections
- Behavioural therapy, education, and psychiatric medications may be needed for severe symptoms
- Treatments must be adjusted periodically as symptoms can change
- The Autoimmune Brain Panel™ is a tool to help doctors identify the immune response in the nervous system
- Provide psychological and emotional support for children and their families
Antibiotics and steroids are used to treat acute, short-term infections
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 emerge abruptly in young children, accompanied by other confusing and distressing symptoms.
Steroids are another conventional treatment option for PANS/PANDAS. A short course of steroids, such as a 5-day steroid burst, can be used to manage acute symptoms and inflammation. While these conventional treatments can be effective in the short term, many children experience repeated flare-ups of psychiatric symptoms and require a longer-term management approach.
The treatment approach for PANS/PANDAS involves a three-pronged strategy: treating symptoms, addressing inflammation, and regulating the immune system. Psychiatric medications are used with caution and in low doses, while behavioural therapy and psychological support are also integral components of care. Treating PANS/PANDAS often requires a comprehensive and individualized approach, addressing the underlying causes of the condition to prevent relapses and improve long-term outcomes.
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Behavioural therapy, education, and psychiatric medications may be needed for severe symptoms
PANS and PANDAS are severe forms of obsessive-compulsive disorder (OCD) that can appear suddenly in young children, accompanied by other distressing symptoms. The treatment approach for PANS and PANDAS involves a three-pronged strategy: treating symptoms, inflammation, and the immune system.
Behavioural therapy is an important aspect of treating PANS/PANDAS. Cognitive behavioural therapy (CBT), specifically exposure and response prevention (ERP), is recommended to address the OCD and severe anxiety symptoms associated with these conditions. CBT can help patients manage their fears and rituals that develop as a result of OCD. ERP involves gradually exposing individuals to the sources of their anxiety and teaching them healthy ways to respond, reducing the need for rituals.
Education is also a critical component of treating PANS/PANDAS. This includes educating patients and their families about the condition, its causes, and available treatment options. Families may need support to navigate the various treatment options and understand the recommended treatments. Educating patients and their families can empower them to make informed decisions about their care and improve their ability to manage the condition.
Psychiatric medications may be necessary for severe symptoms of PANS/PANDAS. These medications are typically started at low doses and gradually increased, following a "start low and go slow" approach. Selective serotonin reuptake inhibitors (SSRIs) are a type of anti-depressant or anti-obsessional medication that can be used to treat OCD and severe anxiety. Other psychiatric medications may also be prescribed, depending on the specific needs of the patient. It is important to note that the use of psychiatric medications should be carefully monitored and periodically reviewed by a licensed healthcare provider.
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Treatments must be adjusted periodically as symptoms can change
PANS/PANDAS treatment is a complex process that requires a careful and considered approach. It is a three-pronged strategy that involves treating symptoms, inflammation, and the immune system. Due to the varying presentation of symptoms, treatments must be adjusted periodically and tailored to each individual child. This is because the severity and nature of symptoms can change, and PANS/PANDAS can be relapsing-remitting, chronic-static, or chronic-progressive.
Infection is a key trigger for PANS/PANDAS flares, so treating the underlying infection is vital. While GAS is the most studied inciting infection, other infections like upper respiratory tract infections, Mycoplasma pneumoniae, and influenza can also trigger flares. Antibiotics are often the first line of treatment, and they can dramatically improve neuropsychiatric symptoms. However, some children may not respond as well and will require a longer course of antibiotics, or alternative treatments such as anti-inflammatory drugs, steroids, or psychiatric interventions.
The PANDAS Physicians Network (PPN) provides flowcharts and guidelines to help clinicians evaluate patients and determine the best treatment approach. For those with moderate or severe symptoms, a multidisciplinary team of specialists may be required. Psychiatric medications should be introduced with caution and at lower doses, and behavioural therapy may also be beneficial for some patients.
The integrative approach is gaining recognition as it addresses the underlying causes of repeated flare-ups and offers safer, better-tolerated treatments for long-term management. This approach considers the whole body and aims to reduce inflammation and regulate the immune system, preventing it from mistakenly attacking the brain.
Overall, the treatment journey for PANS/PANDAS can be lengthy and challenging, requiring multiple adjustments along the way. Close monitoring of symptoms and their severity is crucial to guide treatment decisions and modifications.
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The Autoimmune Brain Panel™ is a tool to help doctors identify the immune response in the nervous system
The Autoimmune Brain Panel™ is a unique testing tool that helps doctors identify whether neurological or psychiatric symptoms are linked to an underlying autoimmune disorder. It is a series of advanced blood tests that measure the levels of circulating autoantibodies directed against neuronal targets in the brain. These targets include Dopamine D1 and D2 receptors, Lysoganglioside, and Tubulin. The presence of autoantibodies can disrupt the normal functioning of receptors and cells, leading to neurologic and psychiatric symptoms.
The Autoimmune Brain Panel™ is especially useful when patients do not respond to standard treatments or medications. In such cases, identifying an autoimmune process is crucial as it allows doctors to target the underlying infections and regulate the immune system, rather than relying solely on psychotropic medications. By using the Panel, doctors can determine if a patient's symptoms are due to a treatable autoimmune dysfunction or a primary neurological or psychiatric disorder. This is important as studies indicate that a subset of patients with neurological and psychiatric manifestations may have a treatable autoimmune dysfunction.
The fifth test in the series, the CaMKII, is a cell stimulation assay. This test measures the ability of the patient’s autoantibodies to stimulate the CaMKII enzyme, which is responsible for regulating the production of brain neurotransmitters. Elevated levels of stimulation indicate that a patient’s symptoms may be due to a treatable autoimmune dysfunction.
The Autoimmune Brain Panel™ has been utilised by over 2,500 healthcare providers worldwide, with positive outcomes reported. It is a valuable tool in the identification of the immune response in the nervous system and can help guide appropriate treatment plans for patients with treatment-resistant neuropsychiatric symptoms.
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Provide psychological and emotional support for children and their families
PANS and PANDAS can be traumatic for families, especially the primary caregiver. Parents often feel neglected by the medical community while their child continues to suffer. Caregivers of children with PANS or PANDAS often face an extreme burden and are more likely to experience high levels of anxiety. This burden of caregiving can take a heavy toll on the mental, emotional, and physical health of the caregiver, and can even lead to burnout. Therefore, it is crucial to take steps to ease the burden and prevent caregiver burnout.
To provide psychological and emotional support for children with PANS or PANDAS and their families, it is important to address the psychological symptoms of the disorder. Cognitive Behavioral Therapy (CBT) can help children cope with these symptoms, face their fears, and calm and relax their minds and bodies. Therapy can also address other behavioral and mood symptoms that may be part of PANS or PANDAS, such as tics, which can be treated with a therapy called habit reversal. Therapists work closely with parents to coach them on ways to help their child's symptoms improve and manage their child's stressful symptoms.
Psychiatric and behavioral interventions should begin as soon as PANS or PANDAS is identified. These interventions should be tailored to each child's specific needs, as symptom presentations differ. Mildly distressed children may not require pharmacological intervention, while more severe cases may require symptom-specific behavioral and pharmacological interventions.
In addition to therapy and psychiatric interventions, support groups can provide psychological and emotional support for families. Talking to others who are experiencing the same issues can help caregivers feel less isolated and enable them to access new coping strategies. Journaling can also be a positive and cathartic way for caregivers to release pent-up frustrations and emotions.
It is important to note that PANS and PANDAS are often treated with medicines and therapy, and doctors and mental health experts can provide guidance and support to families to help them through challenging times.
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Frequently asked questions
Treatment options include antibiotics, steroids, anti-inflammatory drugs, psychiatric treatment (medication and/or psychotherapy), and an integrative approach that addresses the underlying cause of repeated episodes.
The integrative approach takes a whole-body perspective to address the hidden damage that makes children vulnerable to repeated episodes. It is well-tolerated over long periods and has shown promising results in small-scale clinical trials and parent surveys.
The three-pronged strategy involves treating symptoms, inflammation, and the immune system. Treatment must be individualized and periodically reviewed and adjusted according to symptom severity.
