Thanks to last week’s post, a lot of people have taken action, but a lot of people are also confused and wanting to know more about what’s really happening.
The Great PANS Scandal of 2026: And Why You Need to Act NOW
This week, one of the biggest scandals in the history of PANS/PANDAS Advocacy is afoot: an effort to re-classify PANDAS/PANS as a rare disease—behind closed doors, without a consortium of researchers, without clear scientific evidence, and as usual, without consulting patients.
Narrowing the definition of PANS would mean thousands of patients could lose treatment possibilities, and thousands more will become much, much less likely to even be diagnosed.
Reclassifying PANDAS/PANS as rare is a terrible idea that needs to be stopped.
If enough of you read this post, share it, and write to the PANDAS-related organizations to oppose defining PANS as “rare,” I think we can stop a looming disaster… But if you don’t, these people could undo two decades of advocacy.
The Background of the 2026 PANDAS/PANS Scandal
I received a tip from an anonymous source that some prominent figures in the PANS community––a couple of researchers and the head of a PANDAS/PANS advocacy organization––are vying to reclassify PANS as a rare disease with the USA’s HHS (Health and Human Services).
Continue reading “The Great PANS Scandal of 2026: And Why You Need to Act NOW”
PANDAS/PANS and Dyspraxia: Do You Know This Devastating Symptom?
After ten months flaring off and on, it’s abundantly clear I’m now in a full-blown PANS relapse. Yes, there’s been OCD, anxiety, tics, depression, and food issues. But they all come and go. What never leaves, and is in fact worsening, is a loss of coordination and motor planning abilities. I’ve never seen an article on PANDAS/PANS and dyspraxia, so it’s time to raise the alarm on this absolute menace of a symptom.
If you feel you can’t do a task you know you’re physically able to do, it could very well be dyspraxia. It isn’t always OCD, depression, or even Pathological Demand Avoidance (PDA).
-The Dreaming PANDA
Had I known this fact, I could have saved myself years of suffering and self-loathing. I ask you to please consider sharing this post to help me help the next person who needs to know about dyspraxia. Now, let’s take a deep dive into what PANDAS/PANS and dyspraxia look like and how to help…
In this article:
Continue reading “PANDAS/PANS and Dyspraxia: Do You Know This Devastating Symptom?”
Yes, Adults Get PANS/PANDAS, Too: 3 Steps to More Effective Advocacy for ALL Patients
A couple of weeks ago was PANDAS/PANS Awareness Day, and I admit I’m disappointed in a lot of people and organizations right now. Yes, I’m proud of the fundraising that happened and glad people are raising awareness of PANS in children. But why, in their advocacy, are so many still ignoring that teens and adults get PANS? Some of you really need to remove “children with PANS” from your lexicon. It’s just “people with PANS,” or “PANS patients,” or “children and adults with PANS.”
The diagnostic criteria for PANS don’t exclude adults. The diagnostic criteria for PANDAS technically requires childhood onset, but case reports of PANDAS in adults abound. There are millions of adults with PANS/PANDAS, most of whom aren’t yet diagnosed. PANS and PANDAS don’t magically disappear on someone’s eighteenth birthday. It’s time to stop acting and talking like they do.
Do the Thing You Think You Cannot Do: Overcoming PANS PTSD Triggers
As promised, I’m once again logging back on to give an update of how I fared with surgery given my post-PANS PTSD.
In case you missed it, make sure you read Part 1. Otherwise, this post won’t be quite as meaningful.
Read: “Life After PANS: How PTSD Makes It Not Really Over.”
The night after I wrote my last post, I must have slept for about twenty minutes. I didn’t get to bed until 1:45, and not even 100 mg of Seroquel was enough to stop the anxiety that kept me awake. All I could think about were all of the PTSD triggers I was about to encounter. I can’t do it, I thought to myself.
Continue reading “Do the Thing You Think You Cannot Do: Overcoming PANS PTSD Triggers”
Life After PANS: When PTSD Makes It Not Really Over
Today, I live my life free from PANS psychiatric shackles and its medical mayhem. At this point, I’ve mostly forgotten where I came from and how sick I used to be. PANS no longer affects me… or so I think.
Years ago, I was able to lock away the feelings of terror and despair that were once my constant companions. I now choose to live in the present and do my best to make the most of this second chance at life I’ve been given. Why think about the horrors of the past when I can make a new and better future for myself?
Continue reading “Life After PANS: When PTSD Makes It Not Really Over”
Guest Post: How Illness Made Me an Artist
By Lauren Watt
Six-and-a-half years ago, when I was 14, I got sick… I got sick, and I never got better.
It began with a sudden onset of Mast Cell Activation Syndrome that led to me carrying an EpiPen everywhere. Everyday foods, smells, and chemicals caused me to flush, break out in hives, become nauseous and fatigued, have tachycardia, and in more serious episodes experience throat tightness and lightheadedness. Then five months after the severe MCAS began, I contracted a Urinary Tract Infection. I recovered from the UTI, but I was left permanently worse. We didn’t know it then, but the UTI had awakened my immune system to latent infections of Babesia and Bartonella.
Continue reading “Guest Post: How Illness Made Me an Artist”
The Bad Guys Are After Me: PANS-Related PTSD in Pandemic Times
It was 2:30 in the morning when I awoke to a knock on my door and opened my eyes to see a man in black standing over me. My heart pounding, my sheets drenched in sweat, I tried to scream, but all that came out was barely a mumble.
And then he was gone.
It wasn’t real… Or was it? I sat up and shone a flashlight all around my bed, and in my closet and bathroom looking for the intruder. How could I be sure it was a hallucination when I really did see a person in my room? How was I supposed to get back to sleep when I wasn’t 100% sure the whole thing didn’t happen?
Continue reading “The Bad Guys Are After Me: PANS-Related PTSD in Pandemic Times”
I’m Having a PANS Flare. Here’s What It’s Like…
SPLAT. Suddenly, I hit the floor.
Without warning, my legs completely gave out, as if they forgot how to listen to my brain for a split second.
Had this been the first time this ever happened, it would be disturbing enough. But this has happened thousands of times over the years, and that’s what makes it even more disturbing. It’s never quite been settled if I’m having atonic seizures or some kind of autoimmune neuropathy or something else. But one thing is for sure: I only get drop attacks when my brain is inflamed.
I got back up right away, and tried to brush off the experience. Sure, I’d also had some mood issues recently, which are one of my first signs of a PANS flare. But a higher dose of Lamictal had taken care of the moods, so maybe it was something else. I actually thought the drop attack from a couple of days ago was just a fluke… Until today.
Continue reading “I’m Having a PANS Flare. Here’s What It’s Like…”
PANS/PANDAS Awareness Day 2021: Top Posts and Resources to Share
Tomorrow, October 9th, is PANDAS Awareness Day.
Each year, it seems like parents lead the conversation. Some of this is because many who live with PANS are too young or too incapacitated to do it themselves. And I am so grateful for parents’ incredible efforts in raising awareness for this devastating illness––please keep it up. However, in order to be most effective, the conversation on awareness needs to center on what it’s like for the patients who actually live with the condition. We, the patients, are the ones who need the cures, so our voices should be amplified when possible.
I encourage all of you to not only post stories from parents’ perspectives tomorrow, but to also share stories from people who have lived with this condition themselves. I have compiled a list of what I think are my best advocacy essays and top posts on what PANS/PANDAS is a like, a guest post by another adult with PANS, and the Neuroimmune Foundation’s collection of patient stories. Please consider sharing at least one of these on your social media:
Why Ignoring Adults with PANS Hurts Everybody
Dear Sick, Scared 2015 Me: A Letter to Someone Whose Illness Uprooted Their Life
Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators
Why Autoimmune Encephalitis Doctors Need to Stop Ignoring PANS
These 3 Myths About PANS Are Ruining Lives
Why PANS Awareness Saves Lives
Why Therapy Isn’t Enough When You Have OCD and PANS/PANDAS
I Woke Up in a Body I Didn’t Recognize: Living with Involuntary Movements
Special Guest Interview with Author and PANS Survivor Madeline Dyer
Neuroimmune Foundation Blog: In Our Own Words
Additional Info on PANS/PANDAS
ASPIRE: What Are PANS & PANDAS?
ASPIRE: Diagnosing PANS & PANDAS (Scroll down for suggested labs)
Neuroimmune Foundation: Resources to Share with Your Doctor
The Dreaming Panda Blog: Resources, Support Groups, and Organizations
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- Twitter: @dreamingpanda1