What is the cost of not treating PANS/ PANDAS promptly & appropriately?
We recently sat down with Susan Swedo, MD, to discuss a critical topic: the cost of inaction when PANS/PANDAS is not diagnosed and treated promptly. In a previous video, we explored the importance of early recognition and appropriate treatment. This time, we dive into the far-reaching consequences of delayed intervention—how patients needlessly suffer, how families are impacted, and how parents may be forced to reduce work hours or even leave their jobs to care for a child too unwell to attend school. The emotional and financial toll can be devastating, underscoring the urgent need for timely care.
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Gabriella True
2 comments to The Cost of Inaction –
Tracy Jackson
October 9, 2024We need a Susan Swedo in CANADA
Please help educate our Canadian physicians that Pans/Pandas is a Real Disease.
My daughter has been ill for almost 9 years because she has not been treated appropriately. Being overmedicated in an eating disorder unit at BCCH is not acceptable.
Further More… Has anyone followed up with my daughter, my family, to see how she is managing today? Was the treatment successful?
These past 9 years have ripped my daughter’s life right from under her feet.
BCCH diagnosed her with OCD (with a Pans presentation) but she was treatment resistant to medications and also CBT.
Go Figure. Can someone please in form our Canadian Institutions?
We still need help. I only this week have said Enough is Enough and ordered an “autoimmune Brain Panel” from Molecular Bioscience Lab. When my daughter was discharged from BCCH in 2017, we were told not to talk about Pans/Pandas ever again.
I was told (as a mother) to shut up about this uncharted territory.
HELP, Dr Swedo. We are happy to come to the States.
Monique McLaughlin,Rn
February 22, 2025So sad. I am an IVIG infusion nurse currently administering IVIG to a young boy from Ontario who was denied proper diagnosis and treatment for over four years. He is ten and his symptoms were severe when we first met.!His family has paid cash, thousands of dollars for the IVIG, after four monthly cycles, he is already a different child.
If you have thousands of dollars for IVIG come to the states- Boston, NY, PA- our healthcare system will take your dollars..
I don’t know what to do about Canadian coverage- we are still fighting for insurance to pay for treatment here, but at least it is available, which it is not in Canada..I am so sorry..