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?”

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”

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…”

A Confession… And Why I Need Your Advice

For the last few months, every time it gets close to the end of the month, I tell myself I’m going to have a post ready before the wee hours of the morning of the final day. I tell myself I need to sit down and come up with something to say so I don’t have to stay up late trying to squeeze out some words.

Yet every month so far, including tonight, it’s gotten to be the last day of the month, and I’m scrambling to post something before midnight so as not to break a seven-year streak of posting on this blog every month.

I could have stopped blogging years ago. When I started writing on here in 2014 around the time I was diagnosed with PANS, it was never supposed to last more than a few months. I figured I would stop writing when I got better, and surely I was going to be better in a few months, and then go on as if nothing had ever happened… Right? Wrong, very wrong. As it turns out, you don’t just undue eight years of brain inflammation with a single round of IVIG. Healing a brain is often a long and complicated process.

But eventually I reached a point where I stopped having serious flare-ups. It only took four years, three rounds of high-dose IVIG, eight rounds of low-dose IVIG, ten rounds of high-dose IV steroids, a tonsillectomy, intensive outpatient therapy, psych meds, and more perseverance than I knew I had!

Now it’s been three years since I had to break out the Prednisone to deal with a flare. I rarely get “micro flares” that cause a few old symptoms, but I manage with Alleve, antibiotics, and/or anti-histamines depending on what set it off. And then I go on as if it never happened. Then I go back to work the next day and carry on with life as usual… Sometimes it’s staggering to think it was only four years ago when I had brain inflammation so intense that I had to do nine rounds of IV steroids to stop the autoimmune attack––and then spent eight months healing from the brain damage.

As I go about my life working in my chosen field now, it all seems like a lifetime ago. I used to wonder if I would ever feel like myself again after my brain healed, and I can finally say that I do. And maybe that’s why it can be so difficult to grasp anymore the perpetual trauma of PANS that I once existed in for all those years.

So what about this blog?

All of this is to say that I’m feeling more and more distance between me and PANS, and that’s a really good thing. Yet here I am, the author of the #1 PANS Blog on the web. I have a platform that helps people. I still get more messages than I can answer efficiently, many from readers thanking me for having this blog. So every month, I log back on to post in the hopes I can come up with something I haven’t already said in the 150,000 words written on this blog so far.

And today, I think I’ve finally failed to have anything new to say. So I’m finally confessing the writer’s block I’ve had for quite some time now.

However, calling it “writer’s block” is ironic when I have a 93,000-word manuscript sitting on the table downstairs, most of which I wrote in the last year. Yes, I recently completed my self-help guide/memoir on succeeding in college with a chronic illness, and the plan is to release it in late spring of 2022! There is no book like it on the market, and I think it will offer some much-needed hope to everyone out there with an illness or disability that makes them question if they can get through college or not.

I won’t say anything else about my book for now, but I mention it because I might only share a few more posts on this blog, unless I can come up with more to say that I haven’t said already. I plan to continue posting on here at least once a month until the book comes out, but then I will probably switch to a different platform after that. I may occasionally post something on here once in a while after that point, though, but it may not be every month like it is now. Basically, this blog may be winding down, but my writing career and advocacy work have only just begun. It’s actually a really exciting time, and I hope this book will help bring neuroimmune disorders more into the mainstream.

In the meantime, I need your input…

With possibly only a few posts remaining on here, I want to make them count. I’d like to know:

What keeps you reading my blog after all these years? And what would you like to see me talk about next?

I want to thank all of you who have been reading my blog over the years for all of your support. It has meant so much and sometimes been the main thing keeping me fighting the good fight. Without you all, this book would never have happened. So thank you, from the bottom of my heart. I hope you will continue with me through the next part of my writing journey both on this blog and in my book!

Be sure to let me know what you want me to write about next in the comments…

Grad School Round 2: Conquering the Ghosts of PANS Past

A few months ago, I made a scary last-minute decision: I was going to re-apply to grad school, this time at “State University,” close to home. And today, I successfully got through my first class!

As many of you know, I did a year of grad school at a competitive program out of state before Myalgic E waltzed into my life and forced me to abandon my education, at least for a while. But this spring, after a lot of improvement due to a round of Rituxan, it started to bother me that I hadn’t finished school. I realized after two years away, it was finally realistic to go back, at least part-time.

But what I didn’t realize was the reality of going back to school. I didn’t realize how different it would feel after being in industry for two years and being three years older than when I started. But even more, I didn’t realize how compromised my brain is in more ways than one.

Like many schools, mine required entrance exams, which were online this year. I petitioned to be exempt since I already had a year of grad school behind me, but the school came back and said they would use a shortened version to determine if one of my classes would transfer or not. So there I was, with a week until the exam deadline, trying to relearn material I hadn’t thought about in four years, since undergrad.

But no sooner had I got out my old class notes from undergrad that the ghosts of PANS past came back to haunt me.

Homework

If you’re new to my blog, then you don’t know the disaster that was the last semester of college. My encephalitis started to come back the week before classes started, and it just got worse and worse from there. My brain was so inflamed that it took multiple weeks of IV steroids to come out of it! Rather than reinvent the wheel, I’ll share a paraphrased excerpt from the book I wrote about succeeding in college with a chronic illness that gives a tiny sense of why that semester was so hard:

Although I had been physically in class every day that semester, it was truly as if I had been gone for the first two months. After I ‘returned,’ I had to re-learn all the material, starting from square one in some areas. My professors had graciously removed all deadlines of assignments for the rest of the semester when I told them what was going on, and that’s the only reason I didn’t outright fail.

However, my ability to read, stay focused, and figure out how to break down tasks into smaller, manageable steps were always some of the last aspects to improve after an encephalitis relapse. Getting through the rest of that semester would mean scaling a mountain with two broken legs and two badly sprained arms.

To this day, I have nightmares that I didn’t finish catching up on all of the assignments I missed in that last semester. I have dreams where a professor informs me that I didn’t actually graduate, and I have to go back and take the hardest class of my major again. For a long time, I couldn’t believe I had really pulled it off, but I also did my very best to forget what that semester was like as soon as I finished writing my (yet to be published) book.

But the other week as I studied, it was impossible to forget. There in the lines of my class notebook from that semester, you could see plainly the decline in my handwriting from the first day of class to right before I got steroids. (A decline in handwriting abilities is a hallmark symptom of Basal Ganglia Encephalits, aka PANS.) And then you could tell when I got the steroids, because then my handwriting was neater than ever. It was eerie in an intimate way that re-reading my blog never has been.

Again, I tried not to dwell on that semester too much as I studied the material in the notebook. But a couple of days later, when I went to take the exam, it came back to me yet again.

Before I even started the test, I was shaking all over, and my heart was starting to pound. I told myself I would do fine because of how hard I had studied, but it was no use. As soon as I opened the test, I completely choked and couldn’t remember anything. Then I was in a true panic attack, having a meltdown all over again, just like I might have when my brain was inflamed.

Test-taking anxiety (at least to that degree) has never been something I struggled with. This was a trauma response. This was my body remembering all of the pent up fight-or-flight that I constantly lived in while facing PANS and trying to get through college. This was remembering the times when I was fighting to use every once of strength just to show up to class. This was feeling the pressure again of being in one of the hardest majors of the university while also horribly ill.

Time and time again, even three years on from the last time I felt like a PANS patient, I realize how traumatic the whole thing really was. I didn’t realize that at the time because I was just trying to get through, and my brain was too inflamed to understand. It was after I started to improve that I realized something very terrible had happened to me, and now I was going to be spending who knows how long trying to get back all of my “self.” PANS is an invisible trauma that’s impossible to understand until you live it.

It’s no wonder that so many things related to that time in my life will still evoke a panic attack.

Nevertheless, I was able to calm down enough to get through the test. And I did well enough for them to accept my credits!

Understandably, I was nervous about what other school-related triggers I might have, but I showed up to class this morning and didn’t panic. Actually, I enjoyed being in class again. Showing up on Zoom isn’t something I ever had to do in college, so maybe it is different enough not to trigger me. Maybe if I get through this semester, I’ll be able to go in-person eventually without panicking, either. It’s okay if you have to slowly work up to doing whatever it is you want to do. It’s okay that I have to go only online and take only one class at once.

There’s a lot messed up in the world right now, but I just wanted to share this victory of coming back to grad school after M.E. tried to stop me, and despite my PTSD. I don’t want to say “if I can do it, anyone can,” because we’re all unique and that’s not true. You can do things I can’t and vice versa. But I hope that maybe knowing that I have been able to go back to school after all that I’ve been through can be a ray of hope for anyone struggling or worrying about doing so themselves right now.

Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring

It was a Saturday morning when something in me snapped. I had no strength to get out of bed, and even if I did, it seemed like nothing I would do today would matter. The massive weight of the numbness pinned me to the sheets, and tears began to flow. But what was I upset about? I had no idea. All I knew was that I couldn’t stop, and this meant the all-too-familiar brain inflammation-induced depression was back.

In hindsight, there were signs all week that this was coming. I’d had a hard time staying on task with my work despite how much I enjoyed it. I’d had more difficulty than usual getting started on anything. Yesterday, it had gotten to the point where I realized it would be better to take a day off from productivity rather than slog my way through hours of frustration.

And yesterday, something else had happened: my seasonal allergies returned in full force.

Continue reading “Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring”

The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS

As an adult with a neuroimmune condition that most doctors don’t know how to diagnose, let alone treat, all too often, I’ve felt like there was nothing I could do to change their minds. I would bring papers and mention the many fine hospitals that are researching PANS only to be dismissed and gaslighted. Why? Partly due to arrogance or wanting to maintain the status quo. But these behaviors have their root in the “P” being for pediatric, the fact none of the research studies mention adults, and the lack of enough large-scale studies in general.

Have you ever felt alone and frustrated by how little help is available while you watch your life waste away?

Now what if I told you that you could do something tangible that could change the situation? What if I told you there was a way for you to help bring PANS out of the grey area of medicine into which many providers place it? Continue reading “The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS”

How I Was Diagnosed with PANS When I Was 19

After weeks of waiting and hoping and worrying, the time had finally come for my appointment with the mysterious expert neurologist. My parents and I arrived half an hour early to a spartan waiting room with an almost-eery quiet. A single tub of building blocks and several stuffed panda bears made me wonder if the staff really understood that they had allowed an appointment for an adult.

Forty-five minutes later, this concern was allayed when the doctor emerged to call me back without batting an eye when she saw my nineteen-year-old self. But all at once, I felt my stomach do a somersault as it occurred to me that she could be my last hope. Eight years of misdiagnoses had led here. Could this surprisingly soft-spoken woman finally be the one to help?

Continue reading “How I Was Diagnosed with PANS When I Was 19”