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PANS & Encephalitis (Advocacy & Education) for Kids in SC

PANS and Encephalitis resources & support

Treatment Guidelines for PANS and PANDAS

JCAP PANS/PANDAS Treatment Guidelines

PPN

PANDAS PHYSICIANS NETWORK:

Medical Providers are encouraged to join PPN to keep up to date on the latest guidelines and treatment protocols. 


Treatment guidelines developed by the PANS/PANDAS Research Consortium are now available in the Journal of Child and Adolescent Psychopharmacology. The guidelines address:


Psychiatric medications and behavioral interventions

Antimicrobials

Anti-inflammatory and immunomodulating therapies.

Along with JCAP’s 2015 publication of the Consensus Statement and diagnostic guidelines, physicians and medical professionals  have the tools needed to evaluate and treat their PANDAS and PANS patients.

For Treatment in South Carolina

As part of PAE KIDS SC efforts to bring awareness to SC, we worked with our local collaborative and legislators for a point of clinical access for our children.

The SC PANDAS workgroup consisted of 4 physicians from the 3 main children's hospitals and included a developmental/behavioral pediatrician, a pediatric neurologist, a pediatric psychiatrist, and a pediatric infectious disease specialist.

For SC the protocol is currently:

1. Children can continue to be referred by their primary care providers to the children's hospital or to a pediatric specialist as appropriate for treatment of any symptoms.

2.  Families who feel strongly that their child should be specifically evaluated for Post Infectious Autoimmune Encephalitis (PANS/PANDAS) should seek a physician knowledgeable in this disorder:

Pandas Physician's Network maintains the most up to date clinical guidelines for PANS and PANDAS. Guidelines will always be based on published information and further refined and explained by the Guidelines & Therapeutics Committee. https://www.pandasppn.org/ 
https://www.pandasppn.org/practitioners/ to locate a practitioner near you. 
OTHER:
Undiagnosed Disease Network https://undiagnosed.hms.harvard.edu/apply/
NIMH https://www.nimh.nih.gov/news/science-news/2017/guidelines-published-for-treating-pans-pandas.shtml
Video Learning:
Free CME Provider (and parent) information from Stanford: https://med.stanford.edu/cme/courses/online/pans.html
Support Groups:
NAMI Piedmont Tri-County - Monthly parent support groups for children struggling with mental health challenges (including  PANS/PANDAS). Free classes and RAP sessions aimed at education and helping parents navigate the road they are on. https://www.namipiedmont.org/  
Brain Restoration Academy Support Group Free Seminar and support group meeting First Monday of each month alternating PM/AM groups.  
2/4/19 - 5:00 pm
3/4/19 - 10 am 
4/1/19 - 5 pm
5/6/19 -10 am 
Presentation and open discussion with parents and families hosted by Neurologist Dr Jean Ronel Corbier and Internist Dr Paul Corbier. Open to all. Email practice@brainrestorationclinic.com or call 704-541-9117 to reserve a spot. 
Brain Restoration Clinic - Treatment for all neurological conditions.

From the Brain Restoration Clinic website: "your brain health is our priority and our passion. That’s why we provide a broad range of therapeutic services – combining innovative, evidence-based neurological and nutritional care at various levels – to better meet the needs of our patients and their families. The breadth and depth of therapeutic options allows us to fully customize a treatment program that is both safe and effective for patients. We utilize both traditional and integrative therapeutic approaches with the goal of restoring maximal neurological function and improving the overall health and well-being of every patient we serve. New patient consults are one hour."  


For Appointments Call : (704) 541-9117 

Hours:  9 am to 5 pm Monday – Thursday. Closed from noon to 1:30 p.m. for lunch. Closed on Fridays 

Location : 1040 Edgewater Corporate Parkway Suite 106

Indian Land, SC 29707


Southeast Psych, Inaugural PANS/PANDAS Support Group 
Allan Howe LCSW and Mary Conlon Feb 13th, 2019 10:30 am. Southpark Office 6060 Piedmont Row Drive South Suite 120, Charlotte NC 28287
FACEBOOK GROUPS: 
Carolina PANDAS Parents Support Group https://www.facebook.com/groups/196042083811437/
SC PANDAS/PANS Families https://www.facebook.com/groups/2099964403604160/
PANDAS -Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Strep https://www.facebook.com/groups/P.A.N.D.A.S.International/
PARENTS of CHILDREN with PANDAS/PANS/LYME/TICK-BORNE DISEASES https://www.facebook.com/groups/189241844607935/ 

More Resources

Please visit our  "Organizations page" where there are links to resources and other local opportunities to learn more about treating post infectious autoimmune encephalitis.