PANS Research & Advocacy Initiative Makes a Difference for Kids & Families by Ann Marie Patitucci
Never underestimate what a group of passionate moms can do in order to help their kids! Pans Research and Advocacy Initiative (PRAI) is a non-profit organization making a difference by “advocating on behalf of Virginia families [whose children] suffer from pediatric autoimmune neuropsychiatric syndromes by providing emotional and social support, investing in data-driven research and education, and raising awareness in the community.” PRAI aims to “connect doctors with PANS/PANDAS medical experts ... [and] network and engage people throughout the mid-Atlantic to raise money for PANS/PANDAS research projects ... [Its founding members] have come together in a grass-roots effort to advocate for [their] children who cannot advocate for themselves.” (PansAdvocacy.org)
PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, is a clinical disorder characterized by the sudden onset of obsessive-compulsive disorder symptoms or eating restrictions. It is accompanied by acute behavioral deterioration. While there is no known trigger for PANS, it is believed to be triggered by one or more pathogens. PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections, is a subset of PANS. PANDAS has five distinguishing criteria for diagnosis, including:
- pediatric onset (average 6-7 years)
- sudden (“overnight”) OCD symptoms or dramatic tics
- episodic course of symptoms
- presence of neurologic abnormalities
- association between symptom onset and Group A Strep (GAS) infection (Pandasppn.org)
Children with PANS/PANDAS are often misdiagnosed or undiagnosed. If your child has any of the aforementioned symptoms, educate yourself on PANS/PANDAS. Make an appointment with your pediatrician and advocate for a detailed PANS workup.
For more information visit PansAdvocacy.org and learn more about the PRAI 5K & Fun Run. (This is Ann Marie Gardinier Halstead's 100th tip!)
Pans/Pandas is a scary world but the love and generosity we have found from everyone is beautiful and inspiring! Thank you again for shining a light on such a dark world and letting people know they are not alone!