PANS/PANDAS Awareness Day snuck up on me this year. I’ve been immersed in momming and onboarding for a new position, quiet on the PANS/PANDAS book project while the manuscript is under medical review. But that’s what PANS does. It sneaks up on you, unsuspecting. It can take your life by storm in a matter of days, and you won’t even see it coming.

Isaac is doing well, thank God, and thanks to doctors who learn how to recognize and treat the disorder, to the nonprofit organizations and parent-advocates who do so much to spread awareness and educate and make connections, and to our sheer determination to help our child.

On this very important day, what I want our friends to understand is this: While Isaac is now thriving, he (and we) have suffered terribly due to the lack of awareness around this disorder. I advocate for PANS awareness because no other family should have to go through what we have.

Isaac suffered from the age of four to age eleven without proper diagnosis or treatment. He started taking psychotropic meds at the age of six. We learned a behavior modification approach, radically altered his diet, went through mold remediation, tried high dose fish oil and a variety of other supplements, and saw a magnitude of medical specialists. We changed schools three times.

When we learned about PANS—seven years after onset—and confirmed the diagnosis through a pediatric neurologist, we finally began targeted treatment. This included an antiviral/antiparkinson medication (which Isaac has now been taking for over five years), 23 rounds of in-hospitial IVIG infusions over the course of three years, Exosomes (a regenerative medical treatment similar to stem cells), Tonsillectomy & Adenoidectomy surgery (frequently recommended for PANS patients), long-term antibiotics and herbal treatment for Bartonella/Lyme coinfection, frequent use of NSAIDs for neural inflammation, pulse steroids during flares, and Hyperbaric Oxygen Therapy. (Some of these treatments may seem foreign, but when your child is sick for over a decade, you do what you have to do.)

For me, Awareness Day is a time to celebrate how far Isaac has come but also to remember how much more work there is to do to spread awareness about this treatable disorder that too often goes untreated in kids who are suffering. If you want to know more about PANS/PANDAS, please ask. I’m happy to share our story.