My Story

I was four and a half when it started. In all honesty, I don’t remember a lot from that first flare, only a few shards of memories reflecting back at me. I remember standing at drop off for preschool, crying and screaming and begging my mom not to leave me. I didn’t know why, only this sense that some nameless terror lurked just outside the safety net of her presence. I remember getting so, so mad, and not knowing why. I remember lashing out and feeling as if something else was in control of me. Being scared of my own temper, and saying “I didn’t mean it! I didn’t mean it!” again and again and again as I was unable to control myself. I remember coloring in pictures of princesses time and again in too many different waiting rooms to count. I remember smiling doctors and frowning doctors, x-rays and paper gowns. I remember so many hours spent curled in a ball in pain. And I remember my teeth rotting out of my mouth—nine cavities, a root canal, and three crowns by age six. I remember eating only ice cream the night before I had an endoscope.

But I don’t remember when or how it started; I don’t remember what it was like before. I don’t remember what I was like before. All I know, is that I was one girl, and then, all of the sudden, I was someone else. Before PANS, I was an easy child. I was fearless, would go to anyone, eat anything. And then I wasn’t.

The first instance any of us can remember came in June of 2007. My mom and I were making fresh-squeezed lemonade, and I was drinking it by the cupful, when my mom said, offhand, “Be careful not to drink too much and make yourself sick!” I froze, fixing her with an expression of absolute terror, as if I had only just realized that was possible, as if that was the worst thing in the world.  After that, I was constantly asking, “Will this make me sick?” or, “Have I eaten too much of this?” After we heard of PANS and went looking through my old medical files, we realized this occurred within a few months of my having two consecutive infections. The trigger.

Not long after that, the pain started. Pain isn’t one of the most common symptoms of PANS, but in that flare up, it was my worst. For over year, I was in nearly constant pain. Every time I’d eat, it would flare to a new high. It felt as if my stomach was filled with lava, burning through me. And since another of my main symptoms was emetaphobia—the fear of throwing up—every time the pain stole my breath away, I would spiral into fear that this time it was different, this time it would make me throw up.

We went to doctor after doctor, specialist after specialist, but they told us nothing. The only thing they offered us was a referral to another specialist, if even that.

It was getting to the point where we were running out of ideas. We’d done so many types of x-rays and tests and seen so many doctors, yet only gotten the same answers—no answers. We didn’t know what the next step would be when I took an allergy test through a naturopath. Dairy came back off the charts. I went off it, and within days, I was better. The pain was gone. However, now that we know about PANS, we found out that during that same time frame, I had taken a course of antibiotics. We don’t know why I got better, whether it was the antibiotics fighting some lingering infection or if the dairy allergy had been the trigger. Either way, I got better.

By the time I’d started the first grade, the pain was gone. But I wasn’t quite back to the girl I’d once been. I was still a picky eater—more so than is to be expected of a little kid, I was still short tempered and volatile, I still tired much faster than my classmates, and I was still deathly afraid of throwing up, but I was better. I was going to school and I wasn’t in pain. I was a close to healthy as I’ve ever been in the years I can remember. That was all that mattered. We thought that the daily explosions and pain and tears were behind us.

And they were, for the next few years. I went to school every day, not quite like the rest of them but not as removed as I was, as I am now. Until one day, in the fifth grade, when it all came crashing down around me.

In math class, a kid threw up on my desk. I remember complete silence, broken only when I screamed, slammed my chair out of my desk, and took off running for the back of the room. In the chaos that followed, no one saw how petrified I was. After the poor kid had stumbled to the nurse’s office, we left the room, single file, and gathered in a little space that had a few tables and chairs. I remember I was shaking, the girl sitting next to me kept shooting me annoyed looks because I was shaking the table as she tried to do her homework. I spent the rest of that day a mess of nerves and anxiety, but I refused to go home—because that would mean going to the nurse’s office, facing more contamination. So, I stayed.

The following Friday, I came home early from school, crying, convinced I was about to throw up. I didn’t, but I spent the whole weekend feeling sick from a lesser version of whatever the boy had. That Monday, I returned to school, but I only lasted an hour before I called home sick once again. After that I want to school off and on, becoming more sporadic until I didn’t go at all. The noise and crowds and stimuli and potential triggers bombarded me when I went, driving me into a cocoon of fear and anxiety until I didn’t leave the house at all anymore.

I don’t know how long I stayed like that, not moving except to go from my bed to the couch. Barely eating, only enough to get by. Barely talking, except to lash out if my mom, dad, or brother tried to talk to me. At some point, my mom started taking me to see a psychologist. I fought and screamed the whole way there, for a long time, but slowly I made progress. My psychologist referred me to a psychiatrist who diagnosed me with General Anxiety Disorder and put me on two types of anti-anxiety medication–one that was long term and wouldn’t take effect for a little while, and the other to act in the place of the first until it kicked in. The medication helped immensely, and within a couple of months I began tutoring to make up for the school I’d missed. I never returned to school in fifth grade, though I occasionally would go to SAGE, the gifted program I was in.

I spent the entire summer enrolled in mini plays, preparing to return to school come fall, though I’d be starting at a tiny private school instead of returning to public schooling. In the beginning of the year, my mom spent her days in the office of my school, since I was too nervous to let her leave the campus. I think the school I went to was a big help in getting better again. The entire place was low-stress and very accommodating towards my anxiety. That first year, I was in class with only eight other students, sixth through eighth grade. There were three other girls in my grade, one in the grade ahead, and another girl and three boys in the graduating class. Like I said, the school was tiny. For the first time in my life I wasn’t hiding what I’d been through, what I was going through. For the first time in my life I didn’t feel stressed out because I was trying to fit into the mold of the “normal girl”, trying to bend and break myself into a person who didn’t exist.

Slowly but surely, my anxiety reduced, my eating picked up, and I was brought back to myself. Still more anxious than I had been at ten, but better. This time, however, we never stopped working at getting to one hundred percent. By the start of eighth grade, my anxiety was almost non-existent and I was better than I had been in a long time. But of course, good things never last, do they?

I’d just finished applying to high schools when the pain returned with a vengeance. All of the sudden my stomach hurt too much to get off the couch. Once again, I wasn’t making it to school. Once again, I was watching everything I’d built back up crumble to dust beneath my feet. Once again I was being plagued by some illness that no one could name, and I was just so sick of it. The appointments started back up. Doctor after doctor, more and more vials of crimson being carted off only to bring back normal results. Pill after pill after pill that did nothing, or maybe took the edge off, but only just. Day after day went by, and I did my homework, so that I could graduate with my classmates, and I gave them my arm, so that maybe this time they could find something.

I made it to graduation. I put on a smile; I laughed and gave my speech along with my fellow graduates–now five of us, since one girl had rejoined our ranks after spending a year at another school. I stole frosting from other people’s cakes since I’m gluten free and couldn’t have my own slice. I ran through the tunnel that the little kids and the teachers made with their hands, heralding the new start of our lives, pretending that I could be just like the other girls, that I could go off to high school, go to dances, get A’s, get F’s. And I smiled and smiled as we slung our arms around each others’ shoulders for the camera. I mingled with the younger kids, with the alumni from my first year at the school who’d shown up, gave thanks to the well wishing parents. I promised my friend I’d join her at the high school we both chose. I might have even believed it. Maybe i would have, if it weren’t for the fact that by the time we were halfway home the pain was back, a piercing, burning punch in the gut. A promise that any future I planned for myself would be brought low at its feet. Because you can’t cure, or even treat, something that you can’t even name.

The week before I started high school, I tried out for volleyball. I made it through the third day before I dropped out, but I wasn’t deterred. Volleyball’s a sport, more physically exerting. School would be easier. I made it two weeks before I dropped out. the stimuli had been too much for me, every class had twenty students who whispered, squeaked their chairs, breathed, wore too much perfume or not enough deodorant. After just one day I was so fried, mentally, that I couldn’t think. I couldn’t even string a full thought together. My vocabulary reduced itself to that of a five year old’s, my mannerisms not far behind.

Once again, I’d crashed and burned, but this time, I didn’t let myself wallow. I started school at a homeschool co-op, taking only biology and geometry, so as not to wear myself out. It worked. I stayed mostly caught up, I went to classes on Fridays and worked through textbooks on the other days. Meanwhile, the search for answers still raged on.

At that point, we’d gone to so many doctors. A GI specialist at Children’s diagnosed me with visceral hypersensitivity, told me to try biofeedback. I started seeing an occupational therapist for my “sensory overload”, visited an endocrinologist, then another specialist at Children’s. Nothing, nothing, nothing, and more nothing. Every single one of the doctors I was seeing had told us not to come back, they didn’t know what to do, didn’t have a clue, and that they didn’t want us to waist our money. We’d officially reached a dead end. All we had left to do was pray. And God answered.

My primary care doctor had been sitting in a conference, when the word “emetaphobia” caught her ear. The speaker then went on to explain more symptoms I had–severely restricted eating, sensory abnormalities, OCD, and more. This mystery disorder that sounded exactly like what I had, was PANS/PANDAS. After that, everything just fell into place. We’d already been on a waiting list for a specialist on the gut-brain connection, who also happened to be a PANS specialist. At the specialist, I took the Cunningham Panel and came back positive. For the first time in my life, I had a diagnosis that explained everything, not just one aspect.

Now that I was diagnosed, I was flung headfirst into a twenty-one day course of antibiotics, which left me feeling groggy and fuzzy headed. The antibiotics helped, but only fractionally, so I went on a course of different antibiotics indefinitely. These antibiotics didn’t effect me quite as badly, but they still left me in sort of a brain fog, as if they shut off the part of my brain that did computations. I could no longer do school work, but I was improving. Maybe not drastically and all at once, but little by little, I was getting better.

Now I’m off of the antibiotics, the fog is gone, and I’m enrolled in homeschooling. Since I’ve been diagnosed with PANS and begun a treatment, I’ve improved immeasurably. I still have bad days, an I’m no where near cured. PANS isn’t the type of thing you cure, but I know I’ll get better, until I’m back to myself, fully. And if it ever comes back, I know how to fight it. Being chronically ill sucks. There’s no other way to spin it, but it’s taught me things I never would have learned otherwise–to look beneath the surface, that there is hope even in the most hopeless of situations–and it’s made me into the person I am today, scarred and shattered, but pieced back together into something beautiful and strong.