|Posted:||June 14, 2018 04:11 PM|
|From:||Senator Judith L. Schwank|
|To:||All Senate members|
|Subject:||PANDAS / PANS advisory council|
| I will shortly introduce legislation to establish within the Department of Health an advisory council on research, diagnosis, treatment, and education relating to Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (PANDAS).
PANS and PANDAS are rare auto-immune diseases in children, hypothesized by the National Institutes of Health to be triggered by environmental factors, infections, or other circumstances that lead to brain inflammation and the swift onset of specific criteria. The National Institute of Mental Health has defined diagnostic symptoms to include obsessive-compulsive behavior; co-occurring psychiatric symptoms such as aggression, anxiety and tics; mood changes, including irritability and sadness; trouble sleeping; bed-wetting and changes in motor skills such as handwriting. PANDAS specifically applies to cases where a streptococcal infection is linked to the symptoms’ emergence. In both types of cases, symptoms apparently cannot be explained by other neurological or medical disorders, but diagnosis still is often hindered because key symptoms are psychiatric in nature.
The tremendous emotional burden placed on parents and other family members in dealing with the conditions is compounded by the reality that because the diagnoses have existed only since the 1990s, they have yet to win full acceptance within the medical community. Families commonly are challenged not only to find providers familiar with and capable of treating their children, but also must personally bear the costs of treatment that can easily run into tens of thousands of dollars if insurers will not cover it.
A number of states recently have begun to move to address this problem. I hope you will join the effort to make Pennsylvania one of them.
Introduced as SB1220