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:

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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. 

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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?

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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?

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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.

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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.

Expectations vs. Reality: Why “Different” Doesn’t Mean Worse

A few weeks ago, I became the last of the adult kids in the house. And now it’s just me and my parents. Just me, the disabled and sick 26 year-old, and my parents, whose almost-retirement years I can’t help but feel guilty for fifth-wheeling sometimes.

My friends are getting married and having babies. My friends are working jobs full-time, some of which are dream jobs and some of which they hate. My friends can do “normal” things, like maintain their own apartments, go to the store, and go on hikes in their free time. And then there’s me. I live with family and haven’t been able to go on a proper walk in over two years. I just lost an entire week of work because I was in another ME crash that left me too sick and weak to sit up. I might like to find a partner someday, but if I’m honest, I worry no one will want me if I stay this sick.

Every time I have a bad ME crash, all of my worst fears about my future and deepest insecurities about the present come rushing back. In the hours when I’m in pain all over my body, completely exhausted, and hooked up to an IV, I start to think maybe this is all my life will ever be. I forget everything I’ve accomplished and everything I am apart from my illness––and I am so many things besides sick.

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My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient

Ever since the beginning of the pandemic and the first mention of vaccine development, there has never once been a doubt in my mind about whether or not I would take it when available to me––of course I would get the shot to protect myself and those around me.

That decision may not seem noteworthy to most, but for me, as someone with a neuroimmune condition that can be triggered by vaccines, many people would say I had every reason not to get vaccinated. But considering only the theoretical risk of a vaccine without considering the benefits is short-sighted and irrational.

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When What You Fear Most Is the Right Decision…

I’ve done something scary: I re-applied to grad school. 

Two years ago, I left grad school not completely by choice, but out of necessity when I was diagnosed with Myalgic Encephalomyelitis. I’d spent that year in grad school living in a completely new part of the country by myself. I’d had a great assistantship. It was all very hard at times, but I learned so much in that year.

So that summer, to become so ill was shocking and devastating. It didn’t compute that I could no longer drive, put away groceries, walk to the mailbox, or even load the dishwasher by myself anymore. There are no words to describe how devastating it feels to become fully dependent on your family at age 24, after having lived by yourself for five years. 

In the physical and emotional state M.E. put me in, there was absolutely no way I could have safely resumed school.

While in the thick of PANS, I had always pushed myself to go back to college every semester even in the worst of times, even when a lot of me thought I couldn’t possibly make it. I had always powered through, consoling myself by knowing that staying in school meant I was still moving forward in life. College had been my anchor to reality and normalcy when I couldn’t otherwise recognize myself or my life due to the brain inflammation. The structured nature of college kept me going.

But this time, it was different. 

While in the worst of PANS in college (except when it showed up as anorexia), I had retained my physical stamina. In fact, I could run ten miles at times when I struggled to put together a sentence. But now that I had Myalgic E. instead, I was so frail that I couldn’t even do five sit-ups without getting ill for a week afterwards. 

My doctor warned that I would permanently worsen my condition if I tried to go back to grad school. I hadn’t wanted to hear it because I thought I could hang onto grad school the way I hung onto college. 

But one morning, it finally all came to a head when it took me four hours to get out of bed because all I could think about was how overwhelming and impossible it seemed to go back to grad school in three weeks. My mom finally came and dragged me downstairs, but I just started sobbing.

“I can’t go back,” I moaned. “I don’t think I can do it.”

“Then don’t.”

I paused, contemplating such a profound statement. But how could I not go back after I’d aced college even with brain inflammation? How could I give up now? And yet I knew she was right, and I knew how relieved I was to think about not going back.

“Maybe I should just transfer to [state university] next semester so I can keep living here,” I said, almost joking.

“That’s actually a good idea.”

I paused, realizing that transferring in grad school, though unorthodox, was a real possibility. “But how could I go there after I’ve gone to [first grad school]?” I countered. “It won’t be the same.”

“Do you want it to be the same? Do you want to be so depressed about going back that it takes you four hours to get out of bed?”

“But,” I started, staring at the floor. “I worked so hard to get there. For years, I tried to do everything right so I could get in.”

“I know, and you earned it. But [state university] is a great school, too,” Mom reminded me. “I think you know you’d have a great experience there––after you’re well enough.”

That afternoon, I finally accepted my circumstances and informed my university that I would not be returning due to my illness.

The thought of transferring to the state school someday and having more family support during school buoyed me. The idea helped me see that my original grad school didn’t hold the only keys to my future.

After I left grad school, I learned that sometimes the thing you fear and dread the most is exactly what you need to do. 

Over the last two years, there have definitely been plenty of times when I’ve felt sad about leaving grad school unexpectedly and not finishing my degree. However, not being in school opened up lots of professional opportunities I would have had to turn down if I had stayed in grad school. In my time away from school, I feel like I’ve found myself like never before. I work with a start-up part-time and freelance on the side as well, and I love being in industry as opposed to academia.

So why go back?

The way I see it, if I want to make the year of grad school I already did count the most, then I need to finish the master’s degree. I worked my butt off that year, so I want to earn that degree. 

Half a master’s degree doesn’t earn you much. I happened to be in the right place at the right time (and with the right expertise due to undergrad) to get in with this company, but usually, the top people in my field have graduate degrees. Every day, I’m working with people who all have more degrees than I do. I have wonderful colleagues who value me despite my lack of graduate degrees, but down the road, I will have more options with at least a master’s degree.

Moreover, there are some additional training and research opportunities that are unique to academia. It will be great to have the chance to learn more and get even better at what I do.

Why do I think I’m well enough for grad school?

I decided against applying for 2020-21 because I felt like my health wasn’t where I wanted it to be yet. But I’m optimistic about 2021-22 (and beyond).

Recently, I’ve made a lot of progress in my health. My resting heart rate has dropped to the low 70s compared to the 100s a year ago. The other day, I walked a quarter mile and didn’t crash, whereas the same walk a year ago caused a crash for three weeks. Mentally, I’m 70-100% every day. I regularly work for three or four hours without triggering a flare up. I’ve even been able to dramatically reduce two of my three psychotropic medications! 

I am feeling hopeful and starting to dare to imagine being able to do things like go for a walk every day or do my own housework. I believe I can go to grad school part-time without causing harm.

This time will also be different because I can keep living at home. Continuing to have my family’s support will make a huge difference. 

Taking my own advice to heart…

Something I advise in my upcoming self-help memoir on college and chronic illness is that there’s no such thing as the best school in the country. The best school is where you can thrive both as a person and academically. And for any given person, that usually won’t be whatever school U.S. News has ranked the highest this year. 

So now I’m practicing what I preach in realizing that this school really is a better place for me to be at this time.

I struggled at my old school sometimes because everyone was just as good or better than me. On the one hand, it was stimulating to be surrounded by such smart people, but on the other, I would often compare myself and beat myself up for not being the best—and I never was the best.

But this new school has great faculty and is well-respected within my field, even though the name is not as flashy as where I was before. I will always be taken seriously with a degree from there, and I think I may get more attention in the new program. 

Final words of wisdom

April is often when people find out which colleges or grad schools they were accepted to. If you read my blog, you probably have a chronic illness or know someone who does. So I would like to encourage all of you to not be afraid to choose the school where you can be your best self, including health-wise and as a whole person. And also don’t be afraid to go to community college for a year or two so you can have some support from your family and minimize debt (I went myself!).

Don’t go somewhere only because it seems impressive if there’s somewhere else that will be a better fit for you. School is what you make out of it––the opportunities you find and create, the people you meet, and how you spend your time at school. What others think about the name of the school is far less important.

It might seem really scary to take some time off school to work on your health or turn down admission to a particular school, but sometimes it really is the scariest thing that ends up being the right decision…

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?

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