Clinicians & Professionals

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: communications@expand.care.

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.

https://sane.nu/wp-https://sane.nu/wp-content/uploads/2019/10/MNewby_PANS_Occupational_Performance_2019.pdf

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 communications@expand.care.

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:

Frequent complaints of headaches, stomach aches and/or joint pain
Fatigue
Frequent visits to the school nurse
Memory issues
Inability to focus
Cognitive changes
Anxiety
Obsessions and compulsions
Decreased processing speed
Severe separation anxiety
Increased visits to the restroom
Difficulty making it to school on time and/or increased absences
Handwriting changes and changes in artwork
Difficulty in math

How Schools Can Support Afflicted Students and Their Families

Implement an awareness program so staff are alert that potential changes in mood, behavior and cognitive functioning could be caused by PANS/PANDAS/BGE.
Notify the parent(s)/caregiver of observed concerns.
A point-person at the school (ie: the nurse or counselor) can coordinate with the parent to keep the school staff up to date on what educational support the student needs and what services the school can offer to augment care being received outside of the school (ie: occupational therapy and/or speech therapy).
Be flexible and accommodating. Find ways to allow the student to remain connected to their learning, to their school, to their friends, and to their activities.
Provide extra support to the siblings of the student who is ill. They are also severely impacted with a range of emotions from fear, concern, grief, anger, resentment, guilt, protectiveness, confusion and general stress. The focus of the parent(s)/caregiver(s) shifts to the ill child and their intensive needs. Because of this, the sibling may benefit from extra support that they previously did not need. For example: to complete homework or special projects. They may need accommodations themselves. For example, they may arrive late due to their sibling’s difficulties attending school. They may be more distracted during class and they may become more socially withdrawn in light of what is going on at home. Sometimes assignments are given where the student should, for example, report on activities their family does together for fun, which becomes difficult when a family is in survival mode. Perhaps offer another option for a topic that does not focus on the family.
If strep is the known trigger, please notify the family when there is a case of strep in the classroom. PANDAS children can worsen with exposure to strep, even if they do not become infected themselves. PANS parents appreciate hearing when there are any major infectious illness circulating.