Why Ignoring Adults with PANS Hurts Everybody

After twenty years in and out of group homes, psychiatric hospitals, and residential treatment centers, at twenty-nine, Jo* has never been stable enough to have a job. Jo lives with his parents between hospitalizations. Despite being incredibly smart, Jo barely finished high school due to several learning disabilities. Jo’s frequent panic attacks render him unable to drive. Jo almost died of cardiac arrest from anorexia and has attempted suicide multiple times.

Twenty-four years of psychiatrists have yet to result in a combination of medications to control Jo’s severe mental illnesses, and therapy has little effect despite his wanting to recover and get on with life more than anything else. Doctors have decided that it’s okay to label Jo “treatment-resistant” and resign him to a lifetime of repeated hospitalizations that never have lasting results.

And doctors have also decided that Jo’s never-ending stream of Strep, viruses, and sinus infections couldn’t possibly have anything at all to do with his debilitating mental health problems.

Jo is not an isolated tragedy—Jo is a classic case of severe adult PANS/PANDAS that never got diagnosed or treated. There are multiple “Jo’s” in any mental health ward at any given time, and countless others like him struggling through their years as they face life-altering, yet less extreme symptoms.

With PANS/PANDAS Awareness Day upon us, instead of writing an inspiring, feel-good post, this year, I want everyone to openly proclaim an uncomfortable truth:

PANS doesn’t end in childhood.

This post is not directed at any organization or individual in particular. Rather, it is a call for every single one of us to reconsider how we talk about PANS/PANDAS and how we include or exclude those of us who no longer qualify as “pediatric.”

I’m proud that there’s more awareness of teens and adults with this condition than when I was diagnosed five years ago, but for the sake of people with PANS of all ages, we must continue to do better. And this is why I want everyone reading this to understand that ignoring adults with PANS and focusing on children is a lose-lose situation for everyone. Think I’m biased because I’m an adult with PANS? Let’s consider the facts…

Pediatric illnesses get less funding than those that affect adults.

Take a look at childhood cancer, a deadly illness that strikes fear and pity in the hearts of all who encounter it. Cancer affects around ~1 in 285 kids by the time they’re twenty—a similar rate to the 1 in 200 kids estimated for PANS. Guess what percent of NIH’s cancer funding goes to pediatric cancer?

An utterly pathetic 4%. 

If skeletal, bald kids obviously suffering from a life-threatening condition cannot spark enough sympathy and alarm for more research for a cure, then why do we think that unruly, screaming kids with PANS will—kids whose behavior is mistakenly blamed on bad parenting and something they could control if they tried harder?

It is misguided if people are focusing their awareness efforts on kids with PANS in the hopes of sparking sympathy to gain more funding. If other pediatric diseases with well-established mechanisms that clearly aren’t anyone’s fault can’t generate enough funding, then we can’t possibly expect a condition that others perceive as a parenting problem to do any better.

If you want funding for PANS, you must raise the stakes for not funding it. You must shine a light on the thousands of Jo’s in the world who are losing their entire lives to PANS and can’t contribute their gifts to society.  You must show that it could be anyone—whether a child, teen, or adult—who could find their whole world turned upside down by PANS someday.

Continuing to couch PANS as a pediatric illness makes it seem less serious and urgent.

If kids outgrow PANS at puberty, why look for a cure? Why put them through invasive immune-based treatments? Why not just give them some psych meds and cart them off to therapy until they grow up, and call it good? (I’m discounting severe cases for the sake of the argument.)

If you want to help kids with PANS, you need to acknowledge that they might become adults with PANS without proper intervention. Put pressure on doctors to take action. Acknowledge it as the public health crisis it is. Scare the insurance companies with the possibility of years and years of psych meds and expensive hospitalizations if they don’t cover treatments like IVIG and Rituxan and Plasmapheresis.

No insurance company will ever pay to treat PANS with such therapies if they think time alone will be a cheaper alternative. It’s a given in America that the insurance companies focus on their bottom lines, so threaten them with the prospect of a kid becoming a teen and then an adult with debilitating, treatment-resistant mental illness.

We need to stop calling PANS a “childhood neuropsychiatric disorder” if we truly want it to stay that way for the kids who get it.

There’s no scientific evidence that PANS only affects kids.

Before PANS, it was called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus). PANDAS got classified as pediatric because most people are immune to Strep by the time they’re twelve. Thus, if people couldn’t get Strep past twelve, then they couldn’t get PANDAS.

The problem is there are always a few teens and adults who get Strep, and I would argue that a person whose immune system can’t deal with Strep effectively is a person who is more likely to have Strep trigger an autoimmune reaction.

And there’s precedence to my hypothesis because there were outbreaks of Rheumatic Fever (another post-infectious complication of Strep) among military recruits in the twentieth century—and these were men typically in their late teens to late twenties. If adults can get Rheumatic fever, they can absolutely get PANDAS.

Moreover, since PANDAS was first described in 1998, doctors have come to realize that any infection can cause the illness—not just Strep. Thus, the age requirement is now moot, and PANDAS is considered a subset of PANS.

And if anyone bothers to read the PANS diagnostic guidelines established by experts in the condition, they would see that it specifically says it’s not restricted to any age group.

PANS is only considered pediatric for research purposes.

When conducting a study, scientists need to have the most homogenous patient populations possible, so they have to restrict the age group they study. The immune systems of an eight year-old and a thirty-eight year-old are completely different, and grouping them together in the same study on PANS could compromise the validity of the results in determining treatment outcomes.

I do not fault researchers for focusing on kids in the beginning since the condition does most often start in childhood. However, I find it disappointing there still hasn’t been a single double-blind, placebo-controlled study of treating PANS in adults. The lack of studies on adults is interpreted by some rigid-thinking doctors as evidence that it doesn’t exist—but in reality, it proves only that no one has bothered to study it systematically.

I suspect that part of the reluctance within the PANS community in embracing adults also has to do with this same paucity of research. I respect not jumping to unfounded conclusions, but do we really need an official study before we can say that nothing medical magically happens on a person’s eighteenth birthday?

Adults with PANS exist because the real world isn’t a well-designed research study. So why are we all pretending that it is?

Lastly, we need to stop referring to PANS as pediatric because it prevents adults from getting the treatment they need.

If you think it’s hard to find help for a pre-pubescent kid with PANS, try being an adult who has it. Try finding doctors who will take you seriously when seeking help for an illness that has the word “Pediatric” in its name. Try convincing said doctor that it’s not too late to try to treat it. Try even finding a “PANS Specialist” who will treat you—many won’t see you if you’re over eighteen.

It took 15 doctors, 10 misdiagnoses, and 8 years before I was diagnosed with PANS.

It wasn’t until I was seventeen that my family ever came across the term “PANDAS.” By this point, I’d been sick for six years. I’d bounced from doctor to doctor all through adolescence and tried all sorts of medications to little avail. Unfortunately, none of the doctors we asked about PANDAS knew what to do about it, and some said seventeen was probably too late to treat it anyway.

In the end, it wasn’t until two years later that I finally got the help I needed from an out-of-state, out-of-network doctor who specialized in PANS. As sad as it sounds that it took eight years for me to get treated, I consider myself one of the lucky ones—not everyone can find or afford a doctor who will help.

Although practitioners who treat kids with PANS/PANDAS are overbooked everywhere, at this time, I know of only a few doctors in the entire USA who treat adults with PANS with the recommended antibiotic, IVIG, and Rituxan therapies. People who get PANS at the wrong age deserve better—and the kids who grow up without a diagnosis do, too.

Unfortunately, with the “P” for Pediatric in PANS/PANDAS, no matter how much awareness we try to spread, adults and teens will still face obstacles in getting a proper diagnosis. There will still be that knee-jerk reaction when they ask a doctor for help for it. There will still be doctors who can’t get past the “P” to see that a person fulfills all other criteria.

Ultimately, we’re going to have to banish the “pediatric” qualifier altogether if we want better awareness for everyone whom PANS can affect.

In conclusion, I don’t want you to only share this post and say you agree—I want you to stop talking only about “children” who suffer from PANS. Stop claiming it’s a childhood disorder. Stop pretending there aren’t adults who fell through the cracks as kids. Stop ignoring that PANS can happen to anyone of any age.

And most of all, please stop propagating the myth that everyone grows out of PANS when they hit puberty or turn eighteen—there is absolutely no scientific basis for such claims. I know all of the parents of young kids with PANS would like to believe this, and perhaps it is true for a few.  Nevertheless, in the long-run, perpetuating a myth based in wishful thinking is harmful to all of us.

Today, we must light a fire under the public’s and legislator’s feet with the awareness that thousands of adults are too sick with PANS to work and live productive lives. We need to make everyone understand that there are people with PANS and Lyme and autoimmune encephalitis taking up mental health resources who only marginally benefit and will never get better without medical treatments—and remind everyone of the thousands of veterans and homeless people and others not getting help because of how overburdened the mental health system is.

If we acknowledged and treated every adult with PANS, imagine how many mental health resources we could free up for so many other people who desperately need them!

A fraction of my 8 years of misdiagnosis, unsuccessful treatments, and misused resources that could’ve helped others more. Now multiply this by hundreds of thousands of people with PANS…

As a twenty-four year-old still healing from PANS, believe me when I say I want every single kid with this horrible illness to get all of the attention and treatment they need to get better. Believe me when I say it shatters my heart every time I see a child with that unmistakable look of utter despair in their eyes because I’ve felt the same pain. Believe me when I say I hope I’m the last generation of adults who will evade proper diagnosis until we’re no longer pediatric.

But please acknowledge that adults like Jo and me matter just as much as every single child with PANS; he and I and thousands of others were also once kids with PANS. Please raise awareness of PANS as the life-stealer—not just childhood stealer—that it is. Raise awareness that PANS is a monster that may grow bigger and stronger just as the kid who has it does.

Because only when we admit that PANS can strike at any age and continue through adulthood, and only then, will we possibly earn enough recognition and urgency for the changes in medical paradigm that will allow people with PANS of all ages to get the life-saving care they need.

 


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*”Jo” does not refer to any particular person—it’s an amalgamation of many adults with PANS whom I’ve met who have similar stories.

Why These Myths About Suicide Are So Harmful

[Trigger warning: this post contains discussions of personal experiences with suicidal thoughts and misconceptions. If you’re in an emergency, please call the National Suicide Lifeline at 800-273-8255 or dial 911.]

 

No one needs to know, I told myself as I sat frozen, staring at my phone. I don’t need to call him, I tried to convince myself. I remembered how I promised I would if the thoughts came back, yet as soon as I pulled up my doctor’s number, I set my phone back down and started talking myself out of the call once more. Continue reading “Why These Myths About Suicide Are So Harmful”

Could This Antibody Be Stealing My Life?

Why would this happen? How could I get worse while getting treatment?

Years ago when I started this blog, every time I had a symptom flare-up, I’d ask myself these questions over and over again sure that if I thought about them hard enough it would all make sense.

Unfortunately, when you have an illness which science has only recently begun to understand, you rarely get the satisfaction of knowing why you’ve gotten sick and what exactly will work to get you better. Sure, well-established, proven guidelines for diagnosing and treating PANS exist (though they didn’t when I started), but all too often, I relapsed without knowing why and had no objective test to prove how sick I was; I’d lose my entire personality, but the autoimmune markers you might expect in someone suffering from brain inflammation never showed up.

Continue reading “Could This Antibody Be Stealing My Life?”

To Anyone Whose Illness or Disability Makes School a Struggle…

It was two weeks until the start of middle school when my mom and I walked into the building and knew right away that something wasn’t right.  The walls were freshly painted, the windows cleaned, and the floors polished, but something neither of us could put a finger on said to look a little closer.  With inexplicable conviction, as soon as we’d dropped off my paperwork and gotten back into the car, we reached the same conclusion: I couldn’t go there.

Two weeks later, I began my first day of homeschool. 

Watching the bus drive by my house without me was a strange feeling.  I was sad to no longer see my best friend every day, and I wondered if I was making a huge mistake after all.  But thinking about impossibly long school days spent with my bullies and long homework assignments every evening at home made me grateful for the choice my family had made. 

Thanks to homeschool, I’d be able to get a solid education without being overlooked or bullied, and I’d have more time to continue my training schedule as a competitive athlete.  I had always enjoyed learning, and I couldn’t wait to get started with homeschool—I was so pleased to be skipping an entire grade.

Little did I know, I had (most likely) contracted Lyme and/or had a bout of Strep that summer.  I soon traded sports for doctor appointments.  The infections not only led to profound exhaustion and swollen joints a few weeks into the school year, but months later, I suddenly developed multiple mental illnesses and learning disabilities that had never affected me before.  And it would be eight years before we figured out what happened.

“Mommy, I can’t read this,” I said one day early on, pushing my history textbook away from me.  I—the one who blasted through the entire Harry Potter series within a few months and once plowed through astronomy texts for fun—I suddenly felt like books were in a foreign language I barely knew.

“What do you mean?” She came and sat next to me as my eyes began to tear up.

“It’s taking too long.  Look, I’ve only read a page the whole time you were downstairs.”

“Would it help if we read this together?”

“Shouldn’t I do this by myself?”

“It’s okay,” she said, patting my back.  “I know you’ve been feeling poorly lately,” She picked up the textbook and began to read it out-loud.

Indeed, for much of my homeschool journey, I had to have all of my textbooks read aloud (or in audio book format), and someone had to sit near me all day to keep me on task.  And ironically, anytime my homeschool curriculum called for an essay assignment, I would have a meltdown because I couldn’t focus my thoughts and put them onto paper.  Plus, every day it had already taken me two or three hours to get up and walk into the “school room” next to my bedroom due to fatigue, OCD, and ADD. 

Suffice it to say that college seemed utterly unattainable when I was in middle school and so sick with PANS and Lyme and all the resulting mental health problems.

But eleven years later, somehow, I graduated from college with a Bachelor’s of Science and a 3.95 GPA.  I turned what I once considered my weaknesses into my strengths, and I earned recognition in my field during my undergraduate career.

With a new school year upon us, there’s something I want to tell anyone whose illness or disability has made you pursue an education in a non-traditional way:

You’re not inferior just because you have to do school differently from an arbitrary norm. 

Just because you have to take a road less-traveled doesn’t mean you won’t get to your educational destination.

Before college, I spent too much of my adolescence feeling less-than because I couldn’t get on the bus and go to a full day of school like everyone else.  I felt like I was defective because I struggled with everyday tasks that others took for granted.  I was in awe of my friends who took multiple AP and Honor’s classes at the same time in high school—why was it so hard for me to take only two easy classes at community college with almost no other schoolwork?

Indeed, eight and a half years passed from the time I took my first class at that junior college to the time I had my bachelor’s degree.  But guess what?  I got the same degree as everyone else in my program, and no one cares that it took me longer to get it.

So how did I do it?

People often ask how in the world I did college with the challenges I’ve faced, and a huge part of it was transferring those credits from community college, which meant I could take fewer classes at once at my university than the typical student. Also important was having supportive parents and friends who were there for me, and having professors who believed in me and worked with me in the tough times.

Another part was finding strategies that let me learn material quickly and spend minimal time studying—strategies that came from years of experience and experimentation to get around brain fog and other cognitive problemsAlso critical was learning the fine art of giving professors exactly what they asked for on assignments and papers and nothing the slightest bit more. 

There’s so much to say about how I did it that I’m writing a guidebook/memoir on doing college with chronic illness and disability, which covers everything I figured out, from studying through brain fog, to managing symptom flare-ups away from home, to having a social life with chronic illness, to not being “that roommate.”

If I keep writing at my current pace, my manuscript should be finished by this Christmas.  (Some of this post may or may not have been lifted from it. 😁)

But there’s one big lesson I’ve learned the hard way:  Don’t sacrifice your health in order to do an education in a certain way—and don’t sacrifice it in order to get straight A’s like I sometimes did. (As the saying goes, C’s and D’s make degrees!) It’s good to stay as engaged with life as possible while sick, but it’s not good to overdo it.  I say all of this not as flippant platitudes, but as products of a lot of self-reflection and my recent decision:

I’ve dropped out of grad school.

Just like watching the bus leave without me on my first day of homeschool, it’s an unnerving feeling seeing all my friends posting back-to-school pictures on social media right now.  There are moments when I wonder if I’ve made a mistake, and moments when I chide myself for leaving without at least the master’s degree to show.

But what good is a degree if pursuing it will make you too sick to use it? 

PANS mostly seems like a thing of the past by now, but unfortunately, this summer, I relapsed terribly with my ME/CFS (or is it Lyme?).  My doctors said if I tried to push through another year of school right now, I’d prolong my recovery, if not get permanently worse.  I’ve improved an unbelievable amount from a month ago, but it’s not worth risking my entire future just to finish my degree “on-time.”

To be honest, I’m so incredibly relieved and maybe even happy about my decision to take some time off from grad school.  I hope all of you can give yourselves permission to do what’s best for your health this school year.

As it is, my college degree has helped me obtain a remote job in my field, so master’s degree or no master’s, I consider where I am a victory—while in the thick of PANS and my various psychiatric issues, it wasn’t always clear something like this would be possible. I plan to resume grad school when I get a little stronger, but just like middle school, high school, and college, it’s going to be on my own timetable in my own way.  No one will care if I finish this degree a year or two later because I got sick.

So readers, I hope that by sharing about my unconventional educational journey, any one of you in similar circumstances will realize there’s no shame in doing school in your own way at your own pace.  Lots of people (not just people with illnesses or disabilities) are up against various obstacles that impact their education—we’re far from the only ones who have to take our time or forge our own paths to reach our destinations.

So to anyone feeling bad about taking a break from school or doing it differently from others, you are not a failure.  You are not broken.  You are not incapable.  You are wise and brave for putting your wellbeing above others’ expectations. 

Hang in there.

5 Things I Would’ve Told Myself When Diagnosed with PANS

After eight years of a mysterious illness no one could figure out, one July morning in 2014, a neurologist finally cracked the code: I had PANS.  My body was attacking part of my brain, leading to all sorts of bizarre symptoms.

But at the same time that she shed a light onto my case, the new diagnosis plunged my whole family into a darkness we couldn’t have imagined.

Yes, we had an answer, but we’d also just opened a pandora’s box of questions without knowing it. 

Continue reading “5 Things I Would’ve Told Myself When Diagnosed with PANS”

My 5-Year Blogversary… And What Might Be Next

Five years ago today, I made a decision that would change my life: I published my first post on this blog.

I didn’t tell anyone—not even my best friend or my family.  It was my little secret project that I never intended to keep up for more than a few months—and yet, here we are in 2019.

Back then, I was a castaway on a desert island of illness, tossing out that first post like a message in a bottle—I didn’t know if anyone would ever see it, but nonetheless I felt compelled to write.  After all, it was one of the few things that brought me peace from the depression that was engulfing me.

Continue reading “My 5-Year Blogversary… And What Might Be Next”

What Mental Health Awareness Means When Chronically Ill

As someone with a chronic illness that was once misdiagnosed as a psychiatric disorder, but who also does have mental health issues, it’s a constant balancing act trying to understand my brain while convincing doctors that mental illness is only one of my problems.

For eight years, the conclusion was that I was sick because I was depressed.  (Since when did depression cause visible joint inflammation?) Even as a kid, I knew better than to believe that.

I was only thirteen the first time a doctor misattributed my physical illness to my poor mental health, but I knew that I knew myself and my body better than a doctor who’d just met me:

“I’m not sick because I’m depressed,” I growled.  “I’m depressed because I’m sick.”

Continue reading “What Mental Health Awareness Means When Chronically Ill”

The One Thing That May Never Recover After My Chronic Illness

With Easter Week and Passover upon us, I’ve found myself face to face with the very thing my chronic illness has changed the most: my faith.

For years, I would’ve told you it was the most important thing in my life.  All through high school, I was a leader in my youth group and involved in several ministries.  I used to read scriptures daily because I wanted to learn more about God.  I used to pray often because I wanted to be closer to Him.  I even used to be enthralled by dense theological tomes, started to teach myself biblical Greek, and at one point considered going into ministry full-time.

But then I got ill.

At seventeen, I suddenly developed an extreme case of OCD. I’d already had OCD smoldering in the background of my mind for six years, which I’d concealed from numerous therapists due to shame, but out of nowhere it became incapacitating and all-consuming.

Continue reading “The One Thing That May Never Recover After My Chronic Illness”