The answer is pretty simple to me. I watched the 20/20 special on PANDAS and Tim Sorel’s excellent documentary on PANDAS, “My Kid is Not Crazy.” When I saw the children in acute stages of PANDAS either screaming and yelling– or completely shut down, I recognized that behavior. I know those moments, more deeply than I can find words to describe. But I am committed to trying to put words to what it is like to have PANDAS.
One of the scenes that was particularly devastating to watch in the 20/20 special was the child who was face-planted on the floor, slowing scooting across the floor for hours at a time. That child and children like him have no idea how to communicate what is going on inside of their brains. While I cannot speak for that child in a literal sense, I want to try to speak for him (and others) in the broader sense. I must advocate for myself and for others suffering with PANDAS. I must advocate for the parents or caregivers of PANDAS patients.
Categories: The story continues