The Ups and Downs of Life with PANS

February 3, 2016

Screaming, red-faced with panic in her eyes, like a wild animal caged and in fear of losing its life if it didn’t escape. This is what my daughter looked like as she tried to jump out of our vehicle traveling 70 mph down the highway only nine months ago. Today, this same child scored 18 points in her basketball game. She smiled and made eye contact with her cheering section multiple times. She thanked her coaches and her cheerleaders. She ran through the victory tunnel. And right now she is outside playing with her siblings and cousins — living a pretty normal life. The stark contrast between these two events is caused by PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).

In the months since the attempted jumping, we’ve had many more lows than highs, but with a dose of steroids and an antiviral, the month of June in 2015 was a gift of reprieve to us. We saw our daughter for the first time in nearly five years. We recognized the same little girl we used to know before a vaccine stole her childhood. We were so happy, yet so very cautious in our celebration. I remembered thinking that healing her couldn’t possibly be this easy. But I tried to enjoy the moments and soak up every day with my child. Life was so good it made me question my sanity.

When her symptoms disappeared that month as quickly as they had set in so many years ago, I began to wonder if things were really as bad as I had thought they were. Maybe I made a mountain out of a molehill, I thought. The last five years merged together in my head, and I put a mental band-aid over the wound those years left. This was my brain’s way of trying to start healing from the PTSD that often plagues family members of afflicted children. I remember telling my husband, “It all almost seems like a dream,” but then I corrected myself, “well, really I guess I mean a nightmare.”

My husband nodded in agreement. When things are so good and easy and “normal” feeling, you begin to erase the bad stuff. In the interest of self-preservation our minds were essentially telling us to forget about the hell the last five years had been because we were now going to enjoy the life our daughter and our family were meant to live. It was incredibly surreal, and I can only assume that’s why we were so cautious with allowing ourselves to believe we were on a new path. A path that was directed by normalcy and landed us in happy land.

K was pulled off of her antivirals for a number of reasons in early July, and shortly thereafter, we left the life we enjoyed that happy summer month. Like a tornado that drops out of the sky and suddenly ravages everything in its path, we were once again thrown into the hell of PANS. Debilitating anxiety reintroduced us to the daughter who resembled that fearful caged animal as opposed to a thriving eight-year-old girl. Moving from her bed was a Herculean task. Asking her to move from her bed was the same for us. The mere mention of school could send this child into such a rage that we wouldn’t see her without tears and red streaks for eight hours. We were held hostage day in and day out by PANS. Even worse, our daughter was held hostage yet again, and she continued to get worse with each passing week.

I remember getting her grade card at the first nine-week mark and not wanting to open it. Not because I would be unhappy with her efforts in school, but because I would see how many days she was absent. When the numbers are in black and white in front of your face, you have to confront the truth. When you’re in the thick of PANS, there’s not much time or desire for reflecting on your existence. The thoughts you have feel like a burden, and the last thing you want to do is mull them over. Seeing how often she was absent sure has a way of pulling you out of that blurred existence. It’s like cold, hard facts smacking you in the face when all you want to do is ignore the extent of the damage PANS is causing.

As the semester progressed, she continued to miss more school. She was suffering. Anxiety had such a stranglehold on her that she stopped sleeping in her bed. She was already sharing with a sister, but that was suddenly not enough “protection.” It didn’t stop her from seeing shadows and feeling paranoid about people watching her. She knew these symptoms were attributed to her condition, but that didn’t make them feel less real. When sleep finally would come for her, it was in our bed or at the side of our bed and it was never enough. She had insomnia, and the consequences of that only compounded all the other symptoms and hardships she was facing. Now it was extremely difficult to even wake her up for school —  let alone actually get her there.

As we entered the gray days of winter, we warned the school that the worst was coming. It’s the time of year everybody gets sick, and not only do viruses spread among school children like wildfire, but our daughter has an immune deficiency that makes it even easier for her to catch viruses. And for those not well versed in PANS, a virus for K doesn’t mean fever, headache, sore throat and the like. It means, anxiety, enuresis, rages, sleeplessness, and something that can only be described as “fight or flight syndrome.”

At the start of 2016, we introduced a new supplement that serves as an antiviral. We didn’t place much hope in it because we’ve come to not expect much — and even when we are pleasantly surprised, it isn’t long before we wind up back in PANS hell. But, being desperate to heal her, we welcomed this addition to her treatment — especially since it can knock viruses to the ground. It took a few days for it to start doing the dirty work, but before long, we had a child we could once again work with. We had a child who, despite having some anxiety about school, would at least be willing to talk to us and come up with solutions.

With the help of her teacher, we’ve been able to get K to school every single day for three weeks straight! This is a huge VICTORY! Even better, all of these days she took the bus to school. I can’t remember the last time a streak like this occurred. Even in the weeks where she was making it to school, it wouldn’t be until later in the day, after she had finally slept and her father could somehow convince her to go.

These last three weeks we’ve seen her giggle, show empathy, care for those she loves, enjoy playdates and parties, play with siblings, cuddle us, do her homework, and — what takes the cake — I blow dried and brushed her hair. Her hair is usually untouchable. Needless to say, the changes are noticeable. The gains are huge. And yet, there’s a voice in my head saying “don’t get too excited,” while I still pray this is the turnaround we’ve been waiting for.

In the few hours since I started this cathartic writing session, the chaos that is PANS has played out once again. Not two hours ago, K was happily playing in our backyard. Within minutes her cousins and siblings had tears. Little hearts were temporarily broken by the harsh words that come flying with abandon out of the mouth of our sweet girl fighting her PANS. Words, that in other non-flare moments, she would never dream of uttering. Words that sting and can shatter the fragile heart of a young child. My oldest daughter ran inside to tell me that K was saying unkind things to others. She also uttered the sentence I dread and have only heard two other times in the last nine months, “Mom, she said ‘I want to die, and I mean it.'”

Hearing this news coming from my 10-year-old truly represents the horridness that is this condition. My visceral reaction was something I wished I could’ve prevented from happening in front of my daughter, just like I wished she wasn’t the one hearing this first-hand from K. It breaks my heart to live this life in so many ways. I am not the same person I once was — and sometimes I think that’s a good thing. I want to think I’ve evolved beyond some of my worst traits, but sometimes it seems this stupid PANS only reinforces what a horrible human being I can be. I felt so guilty that my oldest girl, just a young babe really, was comforting me through something she doesn’t even fully understand. I tried to gain composure so I didn’t terrify her, and at that moment K walked in from outside.

She had the familiar look of rage in her eyes. She was upset and not herself. It was clear she needed a break from everything, so my mom, who had just arrived, offered to take her out somewhere. Under my breath I suggested it be somewhere not noisy or crowded, and as she nodded in agreement, off they went.

After some hugs and “I love you’s” I sent my oldest off to continue playing outside, reassuring her that I was okay. I don’t know how good an actor I am, but I know I’m not good enough to mask the fact that my soul was deeply hurting and consumed by worry. Still, she gave me a smile and went out to play. I didn’t do much for the next several minutes except think about what had just transpired. I didn’t even think I would go back to writing this note — a note that originally was just briefly going to touch on the contrast between last spring and now. My thoughts were interrupted by the back door opening and little voices calling me to the backyard. “Come see what we’ve made K,” they exclaimed with looks of sheer joy on their faces.

I made my way outside and saw one of our old mattress pads held up by sticks in the shape of a tipi with notes all around set up in my back yard. “Look what we made for K,” one little voice shrieked. I smiled.

My nine-year-old proceeded to tell me there was a stuffed squirrel that K has coveted for quite some time sitting inside the tipi, and it sat by a chalkboard sign that read “G is giving this to KK.”

The coveted squirrel

Other signs adorned the tiny structure — all telling K just how loved and adored she is. It was then that I realized how blessed I am — how blessed my family is. These amazing kids were all showing amazing grace. The compassion they wanted to show her blew me out of the water. They couldn’t wait until she got home because, not only did they plan to gift her this love-note-decorated tipi, they also had a performance to her favorite song (Taylor Swift’s “Bad Blood“) to show her, as well as a performance of a song her sister P wrote for her.

“There is a piece of love in all of us. We give it all to KK. She is so lovable and joyful.”

Soon thereafter, K and my mom came home. I showed them to the back where all the surprises waited. K was smiling from ear to ear when she saw that tipi. She walked up to it and inspected the inside and outside. She found the notes and smiled even more. Her cousins and siblings performed “Bad Blood” as she sat by a makeshift campfire they created for her. Next, we gathered around my oldest as she began singing the song she wrote for K. To the tune of “Fight Song,” she sang, “This is our love song, our I’m sorry song,” and my mom, K, and I started tearing up. K, immediately upon hearing these words, turned into me for a hug. She felt the love. She felt the grace. She felt supported. I just stood in amazement that my tiny people — the very ones I constantly worry I’m yelling at too much, too insensitive with, too impatient with, too all-the-bad-things-moms-hope-they-aren’t-doing-but-fear-they-are-doing with — were expressing these raw, real, human emotions and characteristics. Inside, my jaw was dropping and sitting on the floor, but on the outside I think it was mostly tears, smiles, and hugs.

This morning the best part of my day was seeing my baby score 18 points in her basketball game. And while this makes me proud, I can’t even begin to compare it to how it felt to witness such love and grace from her cousins and siblings.

PANS isn’t something I’d ever wish on somebody. It isn’t a walk in the park by any stretch of the imagination. It is, quite often, uncharted territory, full of questions that even the “experts” can’t help you answer. It’s learning by trial and error. It’s late nights spent connecting with a mom in New Jersey who has a child that suddenly started clicking his tongue and claims he can’t stop. It’s full of tears of joy and sorrow. It feels like prison. It makes you hate yourself for ever thinking this was anything but PANS. It makes you fearful for what’s around the corner. It’s knowing you’ve lost sleep right along with some of your ability to hear. It’s knowing where you can and can’t go because of bathrooms. It’s using words like trigger, research, neuroimmune, CBT, OT, sensory, and supplements on a daily basis. And most importantly, it’s getting up every morning to continue fighting for your child.

It’s exhausting to battle something on a daily basis. Doctors unfamiliar with the newest research fight you. Other parents, friends, and family members don’t believe your child can’t control themselves. People blame your parenting, your “bad genes,” or something even more ridiculous. Knowing that the very trigger for your child’s encephalopathy could be mandated by the government makes you live in constant fear. The threat that your child will be misunderstood, mistreated, or harmed again isn’t a load anybody should carry. But due to the lack of knowledge about PANS, these very things can happen. So my answer is to educate and advocate. If more people understand this condition, my child and others like her will be shown the same things her young siblings and cousins showed her today.

~ Annie

Annie worked in education for 13 years, has authored one book, and now works at a publishing company. She has six children — four who have suffered from vaccine injury. She and her husband have worked tirelessly alongside their doctors for the past five years to heal their children. Their entire family looks forward to the day they rid their K of PANS.