Tag: Autoimmune Encephalitis

Cover image with graphic of head with gears in brain. Text reads: PANS and Dyspraxia: What you need to know about this little-known, devastating symptom

PANDAS/PANS and Dyspraxia: Do You Know This Devastating Symptom?

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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?” →

PANS/PANDAS Awareness Day 2021: Top Posts and Resources to Share

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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

How PANS Really Feels

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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Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare

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On this Rare Disease day, for the 1000th time, let me clear something up and then show you how to fix it:

PANS/PANDAS is not rare, and it’s not only kids that have it. So please, stop referring to it as a “rare pediatric disorder.”

Current estimates say that PANS/PANDAS affects 1 in 200 kids. And since nothing magical happens when a person turns eighteen, you can be sure there are thousands and thousands of adults walking around who grew up and never got treated.

I have been advocating for awareness for nearly seven years, ever since I was diagnosed at age nineteen. We have seen much progress in research, but when I can still go to a doctor and hear “rare” and “pediatric,” it feels like I’ve been screaming into a void for all this time. And I realize that I am only one of thousands of advocates who probably feel the same. So if we haven’t been able to achieve major reforms in the treatment of this disorder so far, what are we missing?

Continue reading “Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare” →

When the Normal Is Extraordinary: Recovery from PANS and the Pandemic

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If there’s anything we can all agree on right now, it’s that nothing is normal at the moment.

Maybe you’ve had to work or do school at home for nine months. Your favorite businesses are closing down. Most everyone is wearing masks on the rare occasions when you brave the grocery store. There is a constant sense of impending doom that we have all become accustomed to, for one reason or another. Continue reading “When the Normal Is Extraordinary: Recovery from PANS and the Pandemic” →

Rituxan and the Waiting Game…

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I’ve finished my first two rounds of Rituximab infusions and am happy to report that they went very well! 

To be honest, I was terrified of this IV medicine after reading about the potential side-effects of killing your immune system’s B cells. So let’s just say that after getting through the first five-hour infusion, I felt downright triumphant for facing my fear. Continue reading “Rituxan and the Waiting Game…” →

Done Treading Water: Why I’m Really Doing Rituxan This Time

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I’m starting a year of Rituximab infusions.

This is an IV biologic medication that kills your B cells. Yes, I’m wiping out a chunk of my immune system in the middle of a global pandemic. Yes, I’ve just signed on to do this every three months for at least a year. Rituxan is not a medicine you get prescribed unless you’re seriously ill—and apparently I am.

That last part is not exactly news to me, though it’s something I don’t like to admit. My baseline hasn’t met diagnostic criteria for PANS in over two years, meaning my mind is basically fine, some brain fog notwithstanding. Thus, I’m often able to work part-time and enjoy it, and I’m able to be social with my friends virtually—neither of which were so easy when I had classic PANS.

Continue reading “Done Treading Water: Why I’m Really Doing Rituxan This Time” →

Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick

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Last week, I did something wild: I signed myself up for a multi-week professional development program.

I already have so much going on with finishing my book, but I’d applied a while ago to this selective program. So once they accepted me, how could I say no? Besides, I believe it will also indirectly help me with my book by making me structure my days better.

The fact I’m attempting this program is a big deal to me for a lot of reasons, but largely because of what it says about my mental state. For so many years while fighting PANS, I just didn’t have it in me to invest much in myself or my career. On the outside, my professors would praise my efforts because I was successful between flare-ups. On the inside, it was often half-hearted, and I constantly questioned if I even wanted to be in my field anymore or not.

Continue reading “Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick” →

How I Was Diagnosed with PANS When I Was 19

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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” →

Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life

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Dear 2015 me,

I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.

Continue reading “Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life” →

Why I Don’t Care What You Call Whatever’s Wrong with My Brain

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It was a typical Sunday morning a few weeks ago when it happened. My mom was cooking me an omelet, and dad was reading the paper. I was rummaging through the cupboard to get some honey to drizzle on a banana when I heard it:

“CLAW.” And then there was whispering in a female voice I couldn’t make out, which I somehow knew was about me.

“What’d you say, mom?”

“I didn’t say anything.”

I paused for a moment. “Did you say something, dad?”

He shook his head.

“So neither of you heard it?”

“Heard what?”

A chill ran down my spine as I suddenly realized what just happened: Continue reading “Why I Don’t Care What You Call Whatever’s Wrong with My Brain” →