Nepans Families' Stories
PANS/PANDAS Family Stories
No one can tell the stories of what it is like to live with PANS/PANDAS like those that have experienced it. The list of symptoms and descriptions of various treatment protocols does not bring the condition to life. The family or patient telling their individual story is what illuminates the day-to-day struggles and triumphs our children and families experience.
For families living with PANS/PANDAS, the aim of sharing these stories is to help you not feel so alone in your struggles, to let you know there is a family out there just like you, and ultimately to let you know that there is hope. For those who are just beginning to learn about this autoimmune disease, we hope you begin to understand PANS PANDAS with greater depth.
Our Story of Recovery from PANS/PANDAS/LYME.
STRENGTH HOPE LOVE
Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn’t Sensory Processing Disorder if it didn’t last all day. Our pediatrician said the UTI symptoms of frequency, accidents, and obsessive wiping, might be due to constipation even though I assured them she was perfectly regular. The sudden separation anxiety was a phase. The emotional outbursts that I could not console were typical developmental behaviors. No one knew what to make of it so when the symptoms subsided after a few weeks, we simply moved on.
Melatonin didn’t help. Reward charts brought her crushing disappointment when she couldn’t achieve her goals; dangling a carrot just out of reach is cruel. A psychologist, who couldn’t get my daughter to look at him never mind talk to him, decided it was purely behavioral. I was instructed to tell her that these outbursts were “simply not allowed”. He told me to take away something of great importance every time she didn’t comply. “She will learn” he said, and me, desperate to bring her some relief, tried it. Desperate times. It only took me a few days to come to my senses and realize she could not help herself, but the mama guilt from a few of those nights is raw in my heart when I remember.
This child didn’t need to learn these things; she had already learned all of it. She had hit every one of her developmental milestones on time but had somehow lost these abilities that had once come so naturally to her. This child, tortured from the inside, could not simply comply; she was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences aid our children in making better choices. Now I found myself reaching for straws, tough love, rewards, strong consequences, and some ABA therapy techniques. Nothing helped.
When the dark of night quieted my mind, my heart silently screamed out, “HOW could this have happened? Why? What happened to my child?” There had been no major life changes, no trauma. Nothing to warrant such a change in my child. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past. What could have gone wrong?
Dear Mom (Grab a Tissue.)
This letter from a young boy with PANS to his parents is heart wrenching. What a beautiful little soul he is. Thank you to his parents for allowing us to share it with you.
We need health insurance coverage for PANS PANDAS. We need all insurance companies to create new policy to cover PANS PANDAS. Families should not struggle so hard. PANS is treatable especially if treated correctly and quickly.
The Dreaming Panda Guest Blog
NEPANS is so thrilled that our friend, The Dreaming Panda, has written a guest blog for us. The author, Iris, writes so honestly and eloquently about the struggles and triumphs that are part of dealing with PANS. She is truly an inspiration for everyone. She has had some dark, dark days but always keeps fighting, keeps hoping, and keeps encouraging others to keep going, to keep reaching recovery. Please read her story and share with others. There is hope. And as she says, "Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories."
After eight years of mental illness and symptoms that over a dozen doctors failed to explain, in 2014, I was diagnosed with PANS. My symptoms had come and gone since I developed the disease at age eleven, so I’d successfully completed my first year of college a couple of months before my diagnosis. At nineteen, I’d been sure that my future was full of possibilities, but after what seemed like a mild case of mono, instead, I lost my mind that summer. My whole world shattered.
Out of nowhere one afternoon, I went from being filled with dreams to becoming inexplicably suicidal and terrified at the thought of simply continuing to exist. My entire body was suddenly consumed with wild involuntary movements, and I couldn’t walk. I was delusional and convinced I was going to die, but the indescribable psychiatric torture that had overtaken me was so intense that the delusion was the only thing that gave me peace.
My PANS was so severe that my specialist gave me high-dose IVIG right away, and she said it would start to help in six weeks. I naively assumed that after a few months, I would have my life back, and things would be how they were before. But more than three years later, I’m still fighting.
There are so many things that no one told me about what it takes to beat PANS—far more than I could possibly fit into one post—but for anyone out there beginning the healing process, there are three key pieces of wisdom that I’ve discovered along the way.
It might be a long road, it won’t be easy, but you WILL get there.
1.) It might be a long road.
My doctor warned that it could be several months for the full effects of my first IVIG to kick in. Indeed, a year and-a-half passed before I truly went into remission, and recovery was so slow that I often felt like I wasn’t making any progress. Nevertheless, after two high-dose IVIG infusions, months of antibiotics and steroids, a tonsillectomy, and some therapy to eliminate what was left of my OCD, I did finally get better in 2015.
I wish I could say that was the end of my journey, but a few months later, I contracted Lyme disease in 2016 and relapsed. My progress has been just as slow this time around, but the long road to healing is more endurable and less discouraging now that I know what to expect.
Recovery isn’t a straight line—there are lots of ups and downs and twists and turns, but if you keep fighting, the road ends in a beautiful return to health.
The day I was diagnosed, my doctor looked me in the eye and said that nothing would seem hard after I defeated PANS. Truer words were never spoken to me.
Over the last three years, I’ve learned that battling PANS will push your strength and courage to the limit, and then miles beyond. It will break your heart into a million pieces and stomp all over them, but you’ll pick up the battered fragments and go on. It will give you a hundred days when you swear it’s the last you can bear to keep fighting, but you’ll always wake up the next and keep at it, again and again and again.
Nothing could have prepared me for how agonizing and exhausting my journey would be, but PANS proved that I’m stronger and braver than I ever dared to imagine—and that’s why I can keep pressing forward even when I’m sure I can’t.
3) You WILL get there!
During the last few years, I’ve often felt like giving up, because the idea of getting better has seemed impossible. There have been so many setbacks that I still worry, every day that I’ll never be cured for good. Nevertheless, I remember that I did recover in 2015, so I believe that if I beat this disease once, I can do it again. When I think back to how ill I was when I was diagnosed, I find great encouragement in seeing how far I’ve come—and how much farther I know I can keep going.
Although I’m still getting treatment, still struggling, and realizing I have a long way to go until I’m completely better, today, I’m living on my own and finishing my last semester of college—something unimaginable when everything fell apart three years ago. I’ve defied every fear I once had that PANS would irreparably ruin my life, so I truly believe that I will also defy my darkest doubts that I will ever be healthy again.
If you have PANS, you’ll probably be in this for the long haul. There will be a lot of trials along the way, you may feel like quitting, and you may wonder if it’s possible to recover.
Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories.
I Have PANS
but PANS Doesn't Have Me!
I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can’t even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
Convinced we couldn’t find help at home, we bought plane tickets to travel 700 miles to see a PANDAS specialist. He officially diagnosed me with the condition in late-January 2012 and started me on a regimen of Augmentin and steroids. Although my PANDAS symptoms improved, constant headaches, stomachaches, joint pain that made it impossible to walk and fatigue continued to keep me out of school. Without insurance coverage, my parents used their savings to pay for IVIG treatment, which helped with nearly all of my symptoms, but the effects were short lived and only lasted about a year.
Although still sick, I had reduced many of my symptoms to a manageable level and decided to enroll in university on-time. My first semester at college was great, but a concussion in early January put me back to square one. I had a difficult time convincing doctors at the university health center of my diagnosis, as they mostly worked with more mainstream conditions. Convinced I needed immediate help, a friend brought me to a hospital in the middle of a flare, where I was promptly checked into the psychiatric ward due to my depression and OCD tendencies. When I was finally checked in, given some unknown pill I’m sure was some sort of antidepressant, and led to my room, the nurse simply said “watch out for your roommate, she’s violent and might try to kill you in the middle of the night”. I was 19, I wasn’t meant to be there, and I didn’t sleep for most of the 3 days I spent there. Too embarrassed to explain the true nature of my absence to friends and professors, I told them I had an allergic reaction to apples again and was hospitalized for testing.
Splitting my time between being sick, hiding my symptoms from friends, professors, and staff, and doing the things I love, like studying biology and being in band, was exhausting. But I was determined to be normal. Without a path to health and failed treatment after failed treatment, I had decided I would just keep going until I either figured out how to get better or finally couldn’t do it anymore. Day by day, I was slowly getting sicker, but I tried to keep healthy by going to the doctor for antibiotics for every infection, no matter how minor.
I remember the day I walked into my university’s heath center for maybe the 15th time in two years. I sat waiting in the exam room with yet another infection that had been traveling around my dorm. The doctor entered the room, took one look at me and exclaimed, “You again?!” To him, I was fine. Why couldn’t I just suck it up and take something from CVS like all the other students? This time, he decided, he would fix me for good. I tried to explain again that I have an autoimmune condition for which I hadn’t found a cure, but instead I walked out of his office 5 minutes later with multiple prescriptions in hand. Being a good patient, I gave them a try, but in his attempt to throw the most robust medicines my way, he had prescribed a cocktail of drugs I couldn’t handle. After going to class, I laid down for a nap and woke up gasping for air — I had overdosed. I had seen this doctor routinely for each cold, flu, stomach bug or headache for two years and if he had taken a moment to hear my story and research my condition, I wouldn’t have called my best friend to come help me up and wouldn’t have gone to class high on something. After that, the university decided I was too risky of a case and generally sent me straight to the ER for everything from a cold to a stomach bug, costing my family thousands of dollars in medical bills. In one semester, I generally saw the inside of a hospital or urgent care 6-10 times.
When you’re a kid, your parents can help you if you’re sick or if you make a mistake, but as you get older the sense of protection fades, even if it’s still there. In college, you’re increasingly focused on your future and begin to realize how each decision you make and each aspect about you either prepares you for a career or makes it more difficult for you to succeed in your dream job. For this reason, I kept all aspects of my condition private. I never requested academic accommodations due to the fear of discrimination. I never told a professor about my condition until I was a senior, and even then only when absolutely necessary. I was determined to succeed, and without a viable treatment option, I assumed that I’d never have a better quality of life. This stubbornness was both a gift and a curse. While I was going to college and earning a degree, I wasn’t doing well in classes and was unable to maintain relationships with friends because I was constantly sick. I was depressed and sometimes suicidal because I could never find the light at the end of the tunnel no matter how hard I tried.
That all changed the summer after my junior year. I had been researching different treatments and nothing really felt right until I found a naturopath doctor who promised he could make me feel at least 70% better. I had given up a lot of hope but my first appointment with him felt different and somehow I knew this would be my ticket out of the dark place I’d been in for so many years. His approach was different than most doctors in that he focused on making my body strong enough to naturally fight infections and other triggers instead of using antibiotics my failing system couldn’t handle. I felt empowered because this was a long-term solution, not temporary relief.
As a biology major, I researched every supplement I was given and learned about why it was working for me and how to keep myself from relapsing. It wasn’t always easy and I had to go through a terrible detoxification period before I started seeing improvements, but slowly I started to improve. I even had to drop out of school in my final semester of senior year and watch my friends graduate while I put my life on hold to heal. A couple months in, I called my mom and told her “I never knew it was possible to feel this good,” and that’s when I knew this treatment had finally worked.
More than a year later, I feel 20 times better than that first day I saw relief, and an occasional bad day would’ve been the best day in years not that long ago. I feel incredible and, to most people, I’m like any other young adult starting her career; however, I still need to watch out for my health. I take more pills per day than my 80-year old grandfather, have a strict diet, and usually have to go to bed early to ensure I can be my best the next day. I still miss out on things to protect my health, but I know it’s for the best and I never let my health get in the way of my dreams like it once did. Recently, I completed a 47 day solo travel adventure to Europe and never got sick abroad. I won a competitive international scholarship to China for a business bootcamp and internship in January and I’m enjoying all the adventures I get to experience now that I’m healthy.
PANS or PANDAS isn’t a one size fits all. The immune system is a complex machine that helps our bodies run efficiently and even tiny problems can cause serious health complications. I’ve now learned what makes me take a few steps backwards, how to avoid those triggers and how to cure myself, but my methods might not work for someone else. I’ve learned to care for myself and to always put my health first or risk going back to where I was just a couple years ago. I’m a success story, but I know for many people this light at the end of the tunnel can feel nonexistent.
I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.