Treating Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) demands a comprehensive approach. It is thus important that we not only address the physical symptoms but also attend to the emotional and psychological well-being of both the affected child and their caregivers.
Dr. Scott Antoine – an expert from The Center for Fully Functional Health and the author of The Comprehensive Physicians' Guide to the Management of PANS and PANDAS – joins us for today’s episode as he shares more about his expertise and evidence-based approach. Throughout our discussion, Dr. Scott generously sheds light on the complexities of diagnosis, treatment, and recovery in the realm of PANS/PANDAS.
Treating PANS and PANDAS with a personal story.
Dr. Scott's journey into the world of PANS/PANDAS began with his daughter's sudden and alarming onset of severe OCD at the age of 12. The once bright and academically successful young girl began displaying behaviors that were completely out of character, such as compulsive hand-washing to the point of bleeding, debilitating insomnia, plummeting grades, and disturbing religious obsessions and contamination fears.
As both medical professionals themselves, Dr. Scott and his wife Ellen turned to their daughter's pediatrician for guidance, only to be met with silence. And so, they took matters into their own hands, delving into research and medical literature in search of a diagnosis until they stumbled upon an article about PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), a condition characterized by sudden onset OCD and other neuropsychiatric symptoms following a streptococcal infection.
They began to realize that their daughter's symptoms fit the profile for PANDAS almost perfectly. However, their attempts to seek help from medical professionals were met with skepticism and dismissal. Undeterred, they continued their quest for answers, eventually finding a physician in New York who confirmed their suspicions and recommended intravenous immunoglobulin (IVIG) therapy for their daughter.
The results were nothing short of miraculous. Within days of receiving IVIG therapy, their daughter's symptoms began to recede, and several months later, she was back to her old self. This life-changing experience ignited a passion within Dr. Scott to help other families facing similar struggles with PANS/PANDAS.
Lack of awareness and understanding as regards PANS/PANDAS.
Families dealing with the complexities of PANS/PANDAS often find themselves experiencing frustration and disbelief as they navigate through the journey of diagnosis and treatment. It’s an overwhelming experience, particularly for those with little prior knowledge of the condition, as they grapple with the sudden and inexplicable changes in their loved one's behavior and well-being.
As physicians themselves, Dr. Scott and his wife Ellen were shocked by the lack of awareness and understanding surrounding this condition, which led to delays in diagnosis and treatment for their daughter. The disparity in awareness and recognition of PANS/PANDAS across different regions and medical institutions further compounds the issue. While it may be more widely recognized in certain areas like the East Coast, there are still many physicians who remain skeptical or uninformed about its existence and treatment options.
Driven by a desire to bridge this gap in understanding and provide comprehensive support to both patients and physicians, Dr. Scott embarked on writing a research-based textbook on PANS/PANDAS. His goal is to equip healthcare professionals with the knowledge and resources needed to accurately diagnose and effectively treat this complex condition. By sharing evidence-based insights and clinical experiences, he aims to dispel misconceptions and ensure that families receive the care and support they desperately need.
However, Dr. Scott also acknowledges the challenges within the medical system, with some healthcare providers dismissing PANS/PANDAS as a psychiatric problem or outright denying its existence. This further emphasizes the importance of raising awareness and advocating for improved recognition and treatment protocols within the medical community.
Nevertheless, Dr. Scott remains committed to his mission, emphasizing the life-changing impact of treatments like IVIG and the need for continued research and education in the field of PANS/PANDAS. Through collaborative efforts and a steadfast dedication to improving patient outcomes, he hopes to bring about positive change and provide hope for families affected by this challenging condition.
Misdiagnosis of chronic Lyme disease and PANS/PANDAS.
Indeed, the journey to understanding and recognizing PANS/PANDAS is long. A 1999 study, as referenced by Dr. Scott, shows the results of children in the placebo group for a year wherein they showed no reduction in symptoms, challenging the notion that PANS/PANDAS resolves quickly. In fact, there are still adults with undiagnosed PANS/PANDAS symptoms that persisted for decades because of misdiagnosis.
A fundamental shift in our understanding and approach to conditions such as PANS/PANDAS is imperative. It is essential to foster open-mindedness and increase awareness not only within the medical community but also in broader society. This shift requires a reevaluation of traditional perspectives on mental health, acknowledging the complex interplay of biological and environmental factors in disease onset and progression.
By taking a more comprehensive and inclusive approach, we can empower individuals affected by PANS/PANDAS to actively participate in their own care and recovery journey. This may involve promoting self-management strategies, facilitating peer support networks, and providing access to a range of therapeutic interventions tailored to individual needs.
Mental health, other infections, and treatment options.
It all boils down to proper education and awareness when it comes to understanding and treating conditions like PANS/PANDAS. While mental health professionals may have a solid grasp on psychiatric conditions and neurobiology, there is often a lack of awareness about medical issues such as infections that can contribute to mental health symptoms.
For physicians, there is a need for better education and training regarding PANS/PANDAS diagnosis and treatment. That’s why Dr. Scott’s book is highly recommended as a resource to help physicians understand the condition and provide effective treatment strategies. He emphasizes the integrative nature of his approach, combining elements of both Eastern and Western medicine to tailor treatment plans to each individual's unique needs.
In terms of common infections seen in PANS/PANDAS patients, Dr. Scott identifies mycoplasma as one of the most prevalent culprits, along with other infections like Lyme disease and Bartonella. He explains the challenges posed by biofilm-forming organisms like mycoplasma, which can evade the immune system and traditional antibiotic treatments. Additionally, he discusses the link between certain infections and symptoms like eating restrictions, highlighting the importance of addressing underlying infections to improve overall health outcomes.
Dr. Scott outlines a simplified approach to treatment, focusing on four key components: identifying and treating infections, addressing immune dysregulation, supporting detoxification, and addressing nutrient deficiencies. He stresses the importance of thorough testing to accurately diagnose infections and select appropriate treatment modalities, such as specialized testing for Lyme disease and immunoblot testing for mycoplasma.
Treating children with PANS/PANDAS, Lyme disease and co-infections.
Parents often find themselves grappling with the reality that their once-normal or even neurodivergent children can develop conditions like PANS/PANDAS. They may expect that medical treatments will resolve behavioral issues as well, but Dr. Scott emphasizes the importance of addressing behavioral patterns that develop in the brain.
These behaviors can become ingrained in both the child and the family's routines, leading to a cycle of anxiety and compulsion. Although more physicians are willing to treat PANS/PANDAS, some may overlook crucial aspects like detoxification. That’s why we believe that it’s best to have a holistic approach to treatment and advocate for open-mindedness when considering alternative therapies like low-dose naltrexone.
Dr. Scott adopts a comprehensive approach for severe PANS/PANDAS cases, starting with antibiotics supplemented by herbal remedies to expedited recovery and lessen antibiotic dependence. He also uses biofilm-disrupting agents like serrapeptase syrup or digestive enzymes to combat protective biofilms. Recognizing biofilms' challenge to recovery, he recommends pulsing antibiotics for more effective biofilm breakdown, acknowledging their resilience to prolonged antibiotic use.
Comprehensive testing is essential to identify and manage toxin exposure effectively as toxins like mycotoxins from mold exposure can disrupt the immune system. To regulate the immune system, treatments like low-dose naltrexone and IVIG therapy for severe cases are highly suggested.
Dr. Scott also emphasizes addressing lingering behaviors like anxiety and panic which can stick around even after the toxins or infections are gone. He suggests therapies such as neurofeedback, counseling, and CBT to tackle these behaviors. In line with this, there are at-home therapeutic interventions like exposure-response prevention (ERP), empowering parents to manage their child's symptoms effectively for sustainable long-term treatment.
Treating PANS/PANDAS with a medical professional.
Remember that hope and empowerment in the journey of PANS/PANDAS can go so far. Embrace a mindset that goes beyond labels and limitations and envision a future where your child’s health is not defined by their condition. With perseverance, improvement is not only possible but is also attainable.
Alongside this optimism, it's crucial to seek guidance from qualified and competent medical professionals who understand the complexities of PANS/PANDAS. Consulting with a knowledgeable healthcare provider can provide invaluable support and guidance throughout the treatment process. They can offer tailored treatment plans, monitor progress, and address any concerns or setbacks that may arise.
Check out The Center for Fully Functional Health: https://fullyfunctional.com/
To learn more about PANS/PANDAS, make sure to grab a copy of Dr. Scott Antoine’s book on Amazon: https://www.amazon.com/Comprehensive-Physicians-Guide-Management-PANDAS/dp/163763269X
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