Podcast Summary
Pediatric Disorders: PANDAS and PANS: Recognize PANDAS and PANS as potential causes of sudden onset of obsessive-compulsive or tic symptoms in children and adults, which may be linked to infections, especially streptococcal infections.
PANDAS and PANS are pediatric disorders where rapid onset of obsessive-compulsive or tic symptoms may be caused by infections, particularly streptococcal infections in the case of PANDAS. These disorders, while primarily affecting children, may also occur in adults, but it's less common. Drs. Sarah O'Dore and Kyle Williams, our guests on the podcast, shared their stories of how they became interested in this field, which dates back to their college days. They emphasized the importance of recognizing these conditions and the potential impact of infections on neuropsychiatric symptoms. It's crucial for healthcare professionals and parents to be aware of these disorders and consider the possibility of an underlying infection when dealing with sudden onset of symptoms.
The connection between neuroscience, OCD, Tourette syndrome, and strep infections: Groundbreaking research revealed that cognitive behavioral therapy and SSRIs could alter brain metabolism in individuals with OCD, leading to the discovery of a link between OCD, Tourette syndrome, and strep infections. This discovery led to the concept of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).
The connection between neuroscience, Obsessive Compulsive Disorder (OCD), Tourette syndrome, and strep infections began to unfold through groundbreaking research. A seminal paper by Louis Baxter revealed that both cognitive behavioral therapy and SSRIs could alter brain metabolism in individuals with OCD. This sparked the speaker's interest in neuroscience and psychiatry. Later, they encountered a tennis player with Tourette syndrome whose symptoms seemed linked to strep infections. This discovery led to the concept of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), which was later developed by Sue Swedo and Judy Rappaport. The speaker's research journey continued at the National Institute of Mental Health, where they studied OCD and PANDAS. They then went to Salt Lake City to investigate a family with a high incidence of strep infections and OCD-like symptoms. The discovery of an outbreak of Sydenham's chorea, a post-streptococcal movement disorder, in the region added another layer to the puzzle, suggesting a potential environmental factor contributing to these disorders. Overall, the speaker's experiences highlighted the complex interplay between genetics, neuroscience, and environmental factors in the development of neuropsychiatric disorders.
Dr. Sarah Ballas's research on unique strep clone during medical school: Dr. Sarah Ballas pursued research on a unique strep clone during medical school, but couldn't find definitive answers due to immune system complexities and advancements in research methods.
During her time in medical school, Dr. Sarah Ballas took a two-year break to study a unique clone of group A strep that was causing unusual streptococcal diseases in a specific region. She hoped to find evidence that this clone had more toxins or novel toxins that could contribute to Pediatric Autoimmune Neuropsychiatric Syndromes (PANS) and Pediatric Acute-onset Neuropsychiatric Syndromes (PANDAS). However, she couldn't find definitive answers during her research due to the complexities of the immune system and the development of better research methods since then. Despite this, her tenacity and interest in the field carried her through medical school and led her to connect with Dr. Doerr and their ongoing work on PANS and PANDAS at Mass General. Dr. Sarah Ballas has a background in clinical psychology with a PhD, and her interest in PANS and PANDAS was sparked during her internship at Massachusetts General Hospital when she saw a patient with PANDAS. She now focuses on utilizing neuroimaging, randomized control trials, and neurocognitive assessments in her research.
Understanding complex pediatric conditions with interdisciplinary approaches: Interdisciplinary approaches are vital for managing complex pediatric conditions involving neuroinflammation and neuropsychological symptoms. Psychologists offer support, therapy, and symptom management, while neuropsychological assessments provide insights. Research aims to detect neuroinflammation non-invasively and explore anti-inflammatory treatments.
Interdisciplinary approaches are crucial in understanding and treating complex pediatric conditions, particularly those involving neuroinflammation and neuropsychological symptoms. This was exemplified in a case where a child's psychiatric and medical conditions were closely monitored and treated with medication and therapy. The role of a psychologist was to support the child and family during symptomatic periods and help manage symptoms between flares. Neuropsychological assessment provided insights into the impact of neuroinflammation on fine motor control and cognitive functioning. Research efforts are ongoing to detect neuroinflammation in children non-invasively and explore the potential benefits of anti-inflammatory treatments. The exact nature of the relationship between neuroinflammation and pediatric conditions, such as obsessive-compulsive disorder, remains an open question in the scientific community.
Possible Link Between Strep Infections and OCD: Strep infections may trigger OCD through immune system dysregulation or molecular mimicry, but the diagnosis of PANDAS OCD is challenging due to the variability in symptom onset and controversy surrounding its mechanism.
Obsessive Compulsive Disorder (OCD) is a complex condition with both genetic and environmental factors contributing to its development. While the specific genes have not been identified, there is evidence of heritability. PANDAS is a hypothesis suggesting that strep infections could be a cause of OCD through molecular mimicry or immune system dysregulation. Symptoms of OCD, such as handwashing, intrusive thoughts, and checking rituals, can be similar regardless of the cause. The diagnosis of PANDAS OCD can be challenging due to the variability in the time frame between the infection and the onset of symptoms, which is often around 6 weeks after the infection has cleared. The immune response to the strep infection, rather than the bacteria itself, is believed to be the culprit. However, the controversy surrounding PANDAS lies in the uncertainty of its mechanism and the difficulty in making a definitive diagnosis.
Identifying PANDAS in children with OCD: Recognizing PANDAS in young children with OCD can be challenging due to variable symptom onset and delay in seeking treatment, but advancements in research and awareness have led to earlier diagnosis and imaging studies. Parents should seek professional help if they suspect their child may have OCD or PANDAS.
Identifying PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) in children, particularly those with Obsessive-Compulsive Disorder (OCD), can be challenging due to the variable onset of symptoms and the delay in seeking specialized treatment. The average delay between the onset of symptoms and receiving treatment is around 4 years. However, advancements in research and awareness have led to earlier diagnosis and imaging studies on young children with OCD, some as young as 1 month into their symptoms. Parents of young children with OCD may notice fixations on routines or behaviors, but recognizing the difference between OCD and PANDAS can be difficult, especially for those with long-term symptoms. It's crucial for parents to seek professional help if they suspect their child may have OCD or PANDAS.
Recognizing OCD in Children with PANDAS: Parents of children with PANDAS should be aware of severe anxiety and distress, frequent reassurance seeking, and intrusive thoughts as potential signs of OCD, even if behaviors aren't obviously repetitive.
Obsessive-Compulsive Disorder (OCD) in children, particularly those with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), can manifest in various ways that may not be easily recognizable. While it's common for people to associate OCD with repetitive behaviors like washing hands or hoarding, children with OCD related to PANDAS might exhibit severe anxiety and distress, affecting their school attendance and social interactions. These children may seek frequent reassurance from parents, confessing their intrusive thoughts, which can perpetuate the anxiety cycle. Parents should be aware that these compulsions can include confessing thoughts to parents for reassurance, and the distress doesn't get alleviated until the child has conveyed their thoughts. OCD symptoms in young children don't look drastically different from those in adults, and it's crucial to recognize that the severity and frequency of these symptoms can be indicative of OCD.
Children's behavior changes after infections: PANS and PANDAS are conditions causing behavioral changes in children following bacterial or viral infections. Symptoms include perfectionism, bedtime issues, confessing behaviors, fears, hoarding, and extended washing routines. Seek professional help if concerned.
PANS and PANDAS are conditions that can significantly impact young children's behavior and development, often following a bacterial or viral infection. Symptoms may include perfectionism, bedtime issues, confessing behaviors, fears, hoarding, and extended washing routines. Parents often report rapid and dramatic changes in their child's behavior, which can disrupt family life. Doctors may ask about recent infections, focusing on verified group A strep infections, as these are easier to test for. Other infections, such as Mycoplasma pneumonia, may also be associated with these conditions but can be harder to diagnose. It's essential to recognize these symptoms and seek professional help if concerned.
Recognizing the Signs of PANS and PANDAS: Parents and healthcare professionals should be aware of the sudden onset of obsessive-compulsive symptoms, mood swings, and neurological issues in children, including difficulties with handwriting, sleep, executive functioning, and urinary changes, as they may indicate PANS or PANDAS.
PANS and PANDAS are distinct conditions characterized by a rapid onset of obsessive-compulsive symptoms, mood swings, and other neurological issues. These conditions can develop within a week and significantly impact a child's daily life. Parents and healthcare professionals should be aware of the potential for these additional symptoms, including difficulties with handwriting, sleep, executive functioning, and urinary changes, as they may indicate the presence of PANS or PANDAS. The presence of these symptoms, even without a documented infection, should prompt further investigation. The rapid onset and range of symptoms suggest a systemic brain dysfunction, akin to a light delirium, that warrants specialized attention.
Pediatric encephalopathy following infections can mimic OCD symptoms but last longer: Pediatric encephalopathy can present with OCD-like symptoms after infections, but its chronic nature distinguishes it from typical OCD. Assess developmental history and observe symptom onset for diagnosis, as antibiotic treatment is usually not necessary once referred to a specialist clinic.
Pediatric encephalopathy, following infections, can present with symptoms similar to obsessive-compulsive disorder (OCD), but the chronic nature of the symptoms distinguishes it from typical OCD. This condition, which can affect children as young as 7 or 8, often involves mood swings, poor focus, irritability, urinary accidents, and severe OCD symptoms. While the initial onset may include some fluctuation, the symptoms can last for months or even years. Distinguishing this condition from autism involves assessing the child's developmental history and observing the onset of symptoms in conjunction with an infection. Although there may be a waxing and waning of symptoms, antibiotic treatment is typically not necessary once the child has been referred to a specialist clinic. Providers should be aware of the potential for encephalopathy in children following infections and consider this diagnosis when faced with cases of seemingly chronic OCD symptoms.
Testing immune function for PANDAS children: Anti-inflammatory treatments like Azifamycin 2 are beneficial for reducing inflammation in PANDAS children before considering antibiotics.
For children with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), testing for immune function is crucial to determine if they require prophylactic antibiotics. While antibiotics can have beneficial effects for some children, such as amoxicillin and cephalosporins, which have glutamate modulating functions, the initial focus should be on anti-inflammatory treatments. Anti-inflammatory medications, like Azifamycin 2, which has a known anti-inflammatory effect, can be used to reduce systemic inflammation in children with PANDAS. Steroids have been tried previously, but their side effects and behavioral activation make them problematic for many patients. A clinical trial led by Doctor Doris is currently underway to further explore the use of antibiotics in the treatment of PANDAS.
Naproxen sodium shows promise in treating PANDAS symptoms in children: Naproxen sodium, a twice-daily NSAID, may help reduce PANDAS symptoms in children, but more research is needed.
Non-steroidal anti-inflammatory drugs (NSAIDs), specifically naproxen sodium (Aleve), have shown promising results in treating PANDAS symptoms in children, particularly those who are newly diagnosed. Naproxen sodium only needs to be dosed twice a day, making it a more realistic option for parents compared to other NSAIDs that require three doses a day. A clinical trial is currently underway to further investigate the effectiveness of naproxen sodium in treating PANDAS symptoms. However, it's important to note that while anecdotal evidence suggests that some children have responded positively, there is no preliminary data from the trial yet. Providers and families should continue to seek gold standard treatments through randomized controlled trials to ensure effectiveness and confidence in treatment options. It's also crucial to avoid feeling isolated or defeated by the confusion surrounding various treatments for PANDAS and PANS. Restriction or elimination diets have not been proven effective based on current scientific evidence.
Exploring Alternative Treatments for OCD: While some alternative treatments like elimination diets and CBD oil may not be effective for OCD, IVIG (intravenous immunoglobulin) has shown promise as a safe and potentially effective treatment due to its anti-inflammatory effects.
While some parents have found relief for their children's OCD symptoms through eliminating gluten or dairy, elimination diets are generally not effective and can make kids miserable. Other interventions like CBD oil, CBD treatments, and high doses of turmeric or curcumin have not shown consistent results. Parents are often left to explore alternative treatments due to a lack of welcoming responses from medical professionals and the controversy surrounding OCD as a disorder. However, there is evidence that IVIG (intravenous immunoglobulin) can be an effective treatment for OCD, although the exact mechanisms are still being researched. IVIG is a safe and relatively common treatment for autoimmune conditions, and its anti-inflammatory effects make it a promising option for some OCD cases.
Comparing IVIG and Plasma Exchange for Pediatric Autoimmune Disorders: Two trials explored using IVIG and plasma exchange for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANDAS), but their high cost, invasiveness, and limited evidence of efficacy have hindered their widespread use.
The use of autoimmune treatments like IVIG (Intravenous Immunoglobulin) and plasma exchange for children with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANS) and Pediatric Acute-onset Neuropsychiatric Syndrome (PANDAS) was initially explored due to the possibility that these conditions might be autoimmune or inflammatory. Two blinded trials were conducted to compare IVIG to plasma exchange and sham IVIG. The first trial, conducted in 1999, showed significant improvement in OCD and tick symptoms for children receiving either IVIG or plasma exchange, while those receiving sham IVIG did not improve. However, the use of these treatments did not become widespread due to the high cost, invasiveness, and limited understanding among mental health professionals. The second trial, conducted in 2016, focused only on IVIG and found that while there was some improvement in the IVIG group compared to placebo, it was not statistically significant. There was also significant variance in response to treatment between individuals. The study's open-label phase allowed some placebo recipients to receive IVIG, leading to improvement for some. Overall, while these treatments showed some promise, their high cost, invasiveness, and limited evidence of efficacy have hindered their widespread use.
Open-label IVIG trial for PANDAS shows better response than blinded trial: Open-label trials, where participants know they receive treatment, can yield better results for complex conditions like PANDAS, despite smaller sample sizes and higher costs.
In a study on IVIG treatment for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), an open-label trial showed a much better response compared to a blinded trial. The open-label trial, where participants knew they were receiving IVIG, had an 80% improvement rate. However, the blinded trial did not show significant separation. The study was expensive and small, with a large variance in responses, making it challenging to achieve statistical significance. Researchers are now examining MRIs, inflammatory molecules, and using mouse models to further understand the differences between responders and non-responders. This study's findings highlight the complexity of diagnosing PANDAS and the importance of considering individual responses in clinical trials.
New antibody identified in PANDAS that binds to cholinergic interneurons: Research identifies an antibody linked to PANDAS, detectable via fluorescent microscopy, whose levels decrease with IVIG treatment and correlate with OCD symptom improvement.
Recent research has identified a specific antibody that binds to cholinergic interneurons in both mouse and human brains in children with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). This antibody, which is present in the serum of affected children, can be detected using fluorescent antibodies under a microscope. Importantly, the levels of this antibody decrease after IVIG treatment, and this decrease correlates with improvements in OCD symptoms. This finding could help identify which children are likely to benefit from IVIG therapy, potentially improving the success rate of clinical trials. Additionally, larger trials and big data approaches are being pursued to better understand PANDAS and related disorders, with more resources becoming available.
Listening to parents' concerns about PANS and PANDAS: Healthcare providers should listen to parents' concerns about their children's symptoms related to PANS and PANDAS, seek resources and guidance, and be open-minded to non-textbook presentations.
Listening to parents' concerns about their children's symptoms, especially those related to PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), is crucial. These conditions, which can present with a range of neuropsychiatric symptoms, are still not well understood, and many families have felt dismissed by healthcare providers. Providers should not feel pressured to use specific treatments, such as antibiotics or NSAIDs, unless they are comfortable with them. Instead, they can look for resources and guidance through organizations like the PANDAS Physicians Network and the PANDAS Network, or the International Obsessive Compulsive Disorder Foundation. It's essential to be open-minded and consider that these conditions may not always present as textbook cases, and collaboration and communication between healthcare professionals and families can lead to valuable insights and progress in research and treatment.
Challenges in diagnosing and treating PANS and PANDAS: Active listening and connecting patients with resources are key for providers. Families may face significant financial burden. Underprivileged populations face unique challenges. Research on inflammation, microbiome, and psychiatric conditions continues.
Effective diagnosis and treatment of PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) can be a challenge due to their rarity and poor diagnostic abilities. However, active listening and connecting patients with appropriate resources and specialists are crucial steps for providers. Many families face significant financial burden in their search for diagnosis and treatment, with some spending up to $1,000,000 out-of-pocket. The importance of listening extends to underprivileged populations who may not have the resources to access necessary information or treatments. As research continues to uncover the potential links between inflammation, microbiome, and psychiatric conditions, mental health professionals must adapt and expand their knowledge to better serve their patients. Organizations like the Pandas Physician Network and the International OCD Foundation provide valuable resources for both professionals and families. Stay tuned for further discussions on this topic as research progresses. You can find more information and resources on psychiatrypodcast.com and pandasppn.org. Additionally, consider following the organizations on Twitter for updates.
Research and Funding in Pediatric Neuropsychiatry and Immunology: The MassGeneral Hospital for Children's Pediatric Neuropsychiatry and Immunology department is conducting research with funding from organizations like Pandas Network, Pandas Physicians Network, IOCDF, and Octapharma. They value open communication and invite future discussions.
The MassGeneral Hospital for Children's Pediatric Neuropsychiatry and Immunology department is actively involved in research and keeps their website updated with information on ongoing research opportunities and published results. They have received grants from various nonprofit organizations, including Pandas Network, Pandas Physicians Network, and IOCDF, and are currently seeking funding from Octapharma for an IVIG trial. Conflicts of interest include research funding from these organizations. For more information, visit their website at massgeneral.org/children/departments/neuropsychiatry-immunology. The department values open communication and enjoys engaging in informative discussions, and they hope to have future conversations with the audience.