PANDAS/PANS SYMPTOM SCALE
PANDAS and PANS are clinical diagnoses which is heavily reliant on the symptom presentation.
A clinical diagnosis is a diagnosis not solely based on a diagnostic test such as a blood test. Rather, the diagnosis is based on the collection of signs, symptoms, medical history, and laboratory findings. Currently, there is not a 100% definitive test for PANDAS or PANS.
Showing the severity of symptoms, the duration, and the onset are importants tool in determining a possible diagnosis. The scale below will help parents present their child’s symptomatology.
The following scale is based on the clinical experience of Susan Swedo, M.D., Miroslav Kovacevic, M.D., Beth Latimer, M.D., and James Leckman, M.D., with the help of Diana Pohlman, Keith Moore and many other parents.
The following scale was developed by Tanya Murphy, M.D., and Gail Bernstein, M.D. to quantify frequency and severity of obsessions and compulsions (citation: Predictors and Prospective Course of PANS: A Pilot Study Using Electronic Platforms for Data Collection Elizabeth C. Harris, Christine A. Conelea, Michael T. Shyne, and Gail A. Bernstein. Journal of Child and Adolescent Psychopharmacology. March 2021)
The following scales are what doctors use to measure the severity of OCD and TICs. Review these scales and show them to your doctor and communicate that your child went from normal levels (1-5) to abnormal (10 and above) overnight. OCD may present as severe anxiety. Do not assume your child does not fall into the realm of OCD because they do not show the “stereotypical symptoms” of OCD, such as hand obsessive washing and fear of germs.
CAREGIVER BURDEN SCALE
This caregiver burden scale helps assess perceived burden among caregivers of family members with dementia, however, this same scale can be used to articulate to medical professionals the severity of your situation.
Papers regarding caregiver burden: