Welcome to Clinicians and Professionals
EXPAND thanks you for taking the time and for having the interest to visit our website. It is within the our mission to increase awareness, provide knowledge and make it easier for clinicians and other professionals to help those suffering from PANS/PANDAS/BGE.
As a new organization, this section of our website is a work in progress as we continue our initiatives and develop our resources in cooperation with our Scientific and Medical Advisory Board. You can meet them here. We hope you will return regularly and sign up for our newsletter to receive quarterly updates.
We also suggest you connect with the patient advocacy organization in your country, which you can find here. In addition to learning from them, they will appreciate knowing you are interested to help those suffering from PANS/PANDAS/BGE. They will value you as a resource for their members. If you do not see a patient organization listed for your country, please contact us at: firstname.lastname@example.org.
Medical and Mental Health Practitioners: General Overview
EXPAND’s vision includes consistent care for patients, regardless of the country in which they live. A crucial step is to develop a European perspective on diagnostic criteria and treatment guidelines for PANS/PANDAS/BGE. This responsibility falls to the newly established EXPAND Scientific and Medical Advisory Board, which will first identify a process and method to establish a systemic clinical approach based on state of the art scientific research and best clinical practices. Their recommendations will be reported on our Diagnosing & Treating website page and regularly reviewed and refined to provide insight and elucidation into the underlying biological mechanisms causing this disease. Such research may include the identification of novel genetic and other biological markers that could help diagnose patients, as well as the development of new targeted therapies for molecularly stratified patients.
You can already find the current, published diagnostic criteria and treatment guidelines in use by following this link to our Diagnosing & Treating page. We have listed the guidelines developed by the US PANS/PANDAS Research Consortium (PRC), which were published in a special issue of the Journal of Child and Adolescent Psychopharmacology (JCAP Vol. 27 #7, 2017) and the guidelines published in the United Kingdom.
These guidelines were developed by experts in the fields of child psychiatry, pediatrics, infectious disease, microbiology, neurology, neuroimmunology, immunology and rheumatology.
You will also find recently developed guidelines by the ASPIRE Professional Advisory Board that address diagnosing PANS/PANDAS/BGE in children with autism. These guidelines are provided to help clinicians discern immune-mediated symptoms from a child’s autism-related symptoms in order to provide appropriate care.
What is stated in the published guidelines, and will be reinforced in clinician webinars hosted by the EXPAND Scientific and Medical Advisory Board starting this fall, is the benefit of forming a trans-disciplinary team of specialists to most effectively treat your patients. If you are not working in a formally organized trans-disciplinary team, it is recommended that you obtain permission to make contact with the other practitioners involved in the patient’s/client’s care. Working together will optimize treatment and create a supportive network that helps lift the burden of the responsibility for treatment from the family.
Complementary Practitioners (Occupational therapists, Chiropractors, Osteopaths, etc.)
PANS/PANDAS/BGE can disrupt development and cause physical complaints. Complementary care modalities can help bring relief and help your client gain skills and/or abilities missed or regain ones that were lost. The extent to which a child or adolescent with PANS/ PANDAS/BGE is able to participate in their treatment fluctuates depending on whether they are experiencing a “flare” (an increase in symptoms) or not.
Michelle Newby BHSc(OT), MSc, is the director of Stepping Stones Therapy for Children in Newcastle, NSW, Australia. She presented her research on the relationship between PANS and occupational performance at the 2019 SANE-Sweden International PANS Conference, which is linked below.
Other Professionals: Educators, School Nurses, School Counselors, Support Staff, Social workers
In addition to the information you find here, please contact your national patient advocacy organization for resources tailored to your country. You can find our member organizations here. If you do not find an advocacy organization listed for your country, contact us at email@example.com.
PANS/PANDAS/BGE has a tremendous impact on the child or adolescent’s education and their experience within the school setting. Even before it is recognized that the child/adolescent has PANS/PANDAS/BGE, these signs and symptoms might become noticeable:
How Schools Can Support Afflicted Students and Their Families