I met another PANDAS mom last week. I was wearing an old awareness shirt that had my son’s name listed on the back along with hundreds of other kids suffering. She asked about it and when I confirmed I was parenting a P/P child, I saw her physically untense a little. She knew I could understand. When she said “..he used to throw fits all night..” we have an unspoken knowledge that she doesn’t mean what other parents mean when they say the same sentence. Meeting a new parent is always bittersweet. We are happy that we are not alone, but we also know the pain that is standing in front of us.
This community is full of some of the most hopeful, strong willed, graceful people I have ever known. They have listened to my cries in the late nights when I have felt alone. They have sent virtual hugs and well wishes that feel so genuine because they actually know. Once, while on a very limited diet, I couldn’t find a specific type of marshmallow so my son could participate in a smores outing. I vented in a Facebook group about the lack of alternatives in my town and a woman I didn’t know, have never spoken to, mailed me a couple of packs of these special marshmallows. She refused to take my money. I can never forget such a small goodness in our deep cloud of darkness. I never asked to be in this community, but it has been the strongest I have ever come across.
If you are in the trenches, reach out to these parent groups. P.A.N.D.A.S NETWORK has also set up some zoom meets. No one should be trying to manage this on their own- please don’t let it isolate you!
Today, I learned something new. I had no clue what the acronym stood for and learned, “PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, and PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. PANDAS is a type of PANS, and both conditions can be triggered by infections.”
My heart goes out to you. You are extremely strong parent and glad you found another strong parent in the community.