PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) are conditions that not only affect the patients but extend their impact to the entire family. The journey of navigating through these disorders is often laden with challenges, emotional upheaval, and the relentless quest for proper treatment and understanding. This blog delves into the authentic experiences of families, shared in their own words, shedding light on the multifaceted challenges and triumphs encountered on this journey.
1. Video: https://www.youtube.com/watch?v=jazSuQI0HYo
Summary:
Rebecca, a vibrant and intelligent child, underwent a drastic behavioral and functional transformation following multiple strep infections in 2009 at the age of six. She began displaying symptoms such as anxiety, incessant crying, and a dependency on help for basic tasks. The family’s pediatrician suspected PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections), a condition characterized by the immune system erroneously attacking body cells, causing brain inflammation and leading to neuropsychiatric symptoms like tics, severe OCD, and hallucinations. Through the PANDAS network, Rebecca’s family was connected to a neurologist who initiated a treatment regimen involving a tapering dose of prednisone. Remarkable improvement was observed within four weeks, as Rebecca gradually regained her speaking ability, with her condition ameliorating each subsequent week, providing a beacon of hope to her family. This ordeal highlighted the vital necessity for awareness, accurate diagnosis, and proper treatment of PANDAS to prevent misdiagnoses and inappropriate treatments, emphasizing the critical role of support networks and well-informed medical professionals in managing this condition.
2. Video: https://www.youtube.com/watch?v=05QJVHS4EBI
Summary:
The family of Makayla discusses their struggles with PANS. PANS, or Pediatric Acute Onset Neuropsychiatric Syndrome, is a newly identified condition characterized by a sudden and severe alteration in a child’s behavior, likely triggered by an infection causing an autoimmune reaction. This reaction leads to antibodies attacking certain parts of the brain, affecting the child’s demeanor drastically. The story exemplifies this through the experience of young Makayla, who underwent a dramatic behavioral change overnight after being medicated for a cough in 2015. The struggle to find a diagnosis left her parents in distress, with numerous doctor visits and hospital stays until 2022 when they came across PANS information. The reality of PANS, illustrated by Makayla’s unpredictable episodes and the high medical costs due to lack of insurance coverage for treatments, underscores the importance of raising awareness and supporting affected families in their pursuit of adequate treatment and understanding.
3. Video: https://www.youtube.com/watch?v=7ACvBYpPMYk
Summary:
The mother of a young daughter describes her family’s struggles with PANDAS. PANDAS, short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a rare condition that may arise in children post a strep throat infection, leading to noticeable behavioral alterations such as sudden anxiety or aggressiveness. This is thought to occur when antibodies, produced to combat the strep infection, inadvertently target parts of the brain, affecting neurotransmitters and thus, altering behavior. The lack of awareness and understanding of PANDAS often makes diagnosis and treatment challenging for families, necessitating substantial financial investments, and underscoring the necessity for enhanced awareness and support from both the medical community and broader society.
4. Video: https://www.youtube.com/watch?v=-S_8fnzUIDg
Summary:
On March 23, 2016, the Byers family noticed a significant change when Erin began displaying tics, which led them on a journey to discovering a condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) following a series of doctor visits and tests. Initially misdiagnosed with sudden Tourette’s, Erin’s further symptoms revealed that she had PANDAS, exhibiting a range of symptoms including OCD, sensory issues, handwriting difficulties, fears of swallowing, and anxiety among others. As they sought specialized care, they found a supportive community through a PANDAS Facebook group which led them to treatment. Erin saw significant improvement when she began the proper antibiotic treatment, however, recurrent strep infections posed challenges. A pivotal change came when Erin had her tonsils removed, revealing a strep infection despite ongoing antibiotic treatment. The Byers family observed further improvements in Erin’s condition following a medication change, cognitive behavioral therapy, and the initiation of CBD oil treatment, enabling Erin to better function in her daily activities like attending school and engaging in sports, although she continues to experience some symptoms.
Conclusion:
These authentic narratives underscore the quintessence of community, awareness, and the indomitable spirit of families. They also magnify the imperative for a robust support system, further research, and a broader societal understanding to ameliorate the journey for families dealing with PANS and PANDAS.
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