Children and young adults need resources for treatment of PANS, PANDAS
One of my children was a patient of the program at Mass General Brigham for Children for the treatment of pediatric acute-onset neuropsychiatric syndrome and pediatric autoimmune neuropsychiatric disorder associated with streptococcus. His amazing therapist raised concerns that our child had PANDAS, and his wonderful pediatrician reached out to Dr. Mark Pasternack and followed his protocol for treatment until we got in to see Pasternack himself at MGB.
Two years since our child was initially diagnosed, the treatment not only worked but he is healthy, academically successful, and happy. The life-altering difference that getting him help made is something I can barely describe. Now children suffering from this horrific illness will not have the same resources he had and may not get the same help (“ ‘The treatment saved me’: Families stunned by MGB decision to end program for controversial pediatric condition,” Oct. 25). That is a failure of medicine and of our society.
Children and their families should be able to get the medical, psychological, and societal support they need. I hope our politicians and policy makers take note and create a pathway so that more PANS/PANDAS treatment programs can open. Thank you to Globe reporter Allyson Chiu for bringing to light this struggle that many families are now facing.
Laura Horowitz
Newton
Why is MGB redirecting a complex medical condition to a psychiatry team?
“The treatment saved me.” That young adult’s words in Allyson Chiu’s article captured what Mass General Brigham’s PANS/PANDAS program has meant to families and patients: children emerging from debilitating illness, regaining the ability to function, and reclaiming their lives through care that addresses the underlying medical causes, not just psychiatric symptoms. Now families face losing the care that brought their children back.
Headlines that refer to PANS/PANDAS as “controversial” or mysterious discount the research the article describes. While we appreciate the Globe’s investigation into the MGB closure, the real controversy is why a medical condition is being redirected and treated solely from a psychiatric perspective and why Boston hospitals are not providing the needed specialists to heal these children.
PANS/PANDAS can be life-threatening. Families cannot be left searching for a doctor during a crisis.
We must protect both established patients and the next family seeking help. Securing a workable plan before withdrawing care is critical. MGB has many questions to answer.
Jennifer Vitelli
Executive Director
Look. Foundation
Scituate
