I published my last blog post a year and a half ago, just days after our world turned upside down (again), when we learned that our son, Isaac, has PANS. If you are not familiar, as I wasn’t, PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. It is a devastating, life-altering illness. This post is in honor of PANS Awareness Day and in honor of Isaac.
“Brain on Fire”
You may have heard of the book, Brain on Fire, by Susannah Cahalan (Simon & Schuster, 2012), a #1 New York Times Bestseller. I’d heard of it before but didn’t read it until earlier this year. It is fascinating, especially knowing what I know now.
PANS is basically a childhood cousin of the rare illness Cahalan experienced in her 20s, which left her doctors and family perplexed and made her think she was going mad. Cahalan made a complete recovery. That is my hope for our Isaac and for every child affected by PANS.
Here’s the short version of our story.
Isaac was seriously ill when he was four years old, in the fall of 2012. He spent seven days and seven nights in the hospital with the flu, pneumonia, RSV, and asthma. He appeared to recover completely, but in the weeks and months that followed, his “behavior” and participation at school took a dramatic downward spiral. That version of Isaac became our new normal over the next seven years, with some unexplained periods of reprieve (what we now know is the relapsing/remitting course of PANS).
We already had an underlying diagnosis and assumed, as did our doctors, that all of the symptoms we were seeing were tied to Isaac’s genetic difference, which we identified when he was 15 months old. The connection between the viral illness and the onslaught of neuropsychiatric symptoms was only visible to us in hindsight. Isaac was finally diagnosed with PANS in February of 2020 by a physician versed in PANS/PANDAS/AE after yet another prolonged upper respiratory illness followed by an unmistakable relapse in behavior, volatility, and OCD.
Isaac is still in treatment for PANS, which in our case includes Amantadine (an Rx typically used for Parkinson’s patients that targets the basal ganglia region of the brain), a variety of anti-inflammatory supplements, a very strict diet, and monthly in-hospital IVIG. We had to fight like H-E-double hockey sticks (as Isaac’s 9 year-old sister, Gillian, would say) to get coverage, because insurance, and the medical community as a whole, has not caught up to best practices for what is still a relatively new diagnosis.
Not uncommon; uncommonly diagnosed
PANS is a complex immune-system disorder that too often flies under the radar as “behavior problems” but is actually caused by inflammation of the brain, triggered by a virus or other infection. PANS is not uncommon; it is uncommonly diagnosed. It is estimated that PANS affects one in 200 children/youth, which means there are kids at nearly every school who are suffering from it, whose families and teachers may not even know.
Isaac already had an underlying diagnosis, which made PANS even more challenging to identify, but “typical kids” can develop it, as well. It is a treatable disorder but sadly goes undiagnosed in many cases because it is not broadly understood in the medical community and beyond.
I’d like to help change that.
PANS Awareness Day
October 9 is PANS Awareness Day. Our family has been impacted profoundly by this disorder. This event is just the beginning of my mission to share our story and make PANS a known entity. Please follow my blog and Facebook page to see how you can join me as that mission unfolds over the next few months.
And in the meantime, please learn more about PANS and help me to spread the word. Diagnostic criteria and treatment guidelines for PANS/PANDAS are available through the National Institute of Mental Health (NIMH), and there are some excellent resources online through www.Aspire.care. Thank you, friends, for learning with me, sharing this important information, and being part of the change.