Current situation: It is a bit ironic that I am hiding in a corner of my house while I attempt to convey feelings I don’t fully understand. I wanted to write a blog post about PANDAS, because today is PANDAS awareness day, but the day is coming to a close and, well, I still haven’t had the time to finish this.
You see, my son has a condition (or a disease or a disorder); I’m honestly not sure what the politically correct term for it is, because so many people denounce its very existence. My son suffers from PANDAS. Do you know what comes up when you google PANDAS? Pictures of Panda Bears. Most people have never heard of PANDAS, which is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections- try saying that fast. From a fellow PANDA mom, “I wish we had known years ago that PANS/PANDAS existed…We researched PANS/PANDAS thanks to an article in Discover magazine.” I, too, share her sentiments.
Perspective: Statistically, 1 in 200 children is robbed of his/her childhood, many of whom go undiagnosed. I won’t pretend for one second that I am a medical expert on the matter, but in a nutshell, PANDAS is an autoimmune disease triggered by Strep. Instead of antibodies attacking the Strep, they attack the brain. To my moms reading this- Charlie’s persistent diaper rash was perianal strep. I didn’t even know this existed, much like most of the world doesn’t know that PANDAS exists. This message, however, is not about medical statistics. It is about grace and forgiveness.
Grace: It is of vital importance to spread knowledge and make the world aware of the symptoms, causes, and medical aspect of PANS/PANDAS, but that is not my job. I am not a PANDAS expert- I’m just a mom to a PANDA who hopes to impart a few words of wisdom from myself and the members of my club- a club I never wanted to be part of but am damn sure glad I found. To the newbies- join ALL the support groups. Staying silent only hurts you. My friend summed it up perfectly saying it is here she found a wealth of support from other parents who bravely face PANS/PANDAS. There exists a whole network of parents like me, many of whom are in far more desperate situations than us.
These are my people. These people understand what its like to go to the grocery store only to leave when your child tries to climb the shelves or won’t stop screaming. These people understand the judgmental looks from strangers who speak with their eyes. These people feel the burn on their faces and the sweat running down their bodies as they drag their child out of said grocery store. And these people need grace. This is their life; and every day is different.
And the worst part? Most insurance doesn’t cover treatments and most providers don’t accept insurance. Every day families spend hundreds and thousands of dollars flying across the country to pay out of pocket in the hopes of seeing one of the very few specialists here in the United States. And these people deserve grace—physically, emotionally, and financially, the families of children suffering with PANDAS need so many things, but they do not need judgmental eyes gawking at them as they attempt to stuff Ibuprofen in little pandas mouth. Next time you see a parent struggling, please just hold the door.
Forgiveness: These words are intended for anyone parenting a child who battles any mental health issue. As much as you don’t need the gawking eyes in public, you need to forgive yourself in private. I remember April 27th, 2018 vividly; our first meeting with our PANDAS specialist. I remember asking with tears in my eyes if Charlie was “normal,” or if his behavior was the result of bad parenting. I remember the relief I felt as she affirmed that this was not the case. After months of waiting, wondering, struggling, blaming, the dots finally connected. It wasn’t our fault; and it isn’t yours, either.
But even though PANS/PANDAS isn’t your fault, you carry the burden every single day. You punish yourself for not having the patience to deal with yet another tantrum. You punish yourself for not having figured this out sooner. And you punish yourself for not having the time to spend with your other children, or the time to get your work done, or the time to make the fancy ass cupcakes Zoey’s mom homemade the halloween party.
Collectively, we need to stop doing this. I need to stop doing this. When someone asks me what Charlie “has,” I genuinely don’t know how to answer- do they really want to know the extremely long complicated answer? Because the short answer is Charlie has PANDAS. Almost always this is immediately followed by a baffled wtf look. I haven’t come up with the right way to explain what PANDAS is, but if I had to sum it up, I would say PANDAS is a thief of time. The time spent not knowing what was wrong. The time spent searching for answers. The time spent hiding at home because going out in public is just to damn hard. The time lost with friends and family who just don’t understand. The time you miss all of the events for your other children. The time a child gets to be just that- a child. And the time spent blaming yourself for all the things you could have or should have done to prevent this from happening or making it worse. To all the parents in this club, you are rock stars. You are the best thing in your pandas’ life, and your voice is the best weapon you have. It took me an entire year to tell anyone what was going on. Please speak out. Please don’t give up. Please spread awareness. And please do something for yourself. Know that (in the words of a fellow PANS mom) you have more patience, perseverance, strength, and compassion because of this very thing.
To those who speculate: Doctors may debate whether PANDAS and PANS are real, but the parents who live it don’t. They fight; one flare at a time. PANS and PANDAS have many faces and the images featured throughout are some of them—those who battle and those who support.
Lastly, this is me punching PANDAS in the face and taking back my time—even if I have to do it hiding in the corner of my closet while one of my children screams about…nothing.
If you made it this far, thank you. Please do 1 in 200 children a favor and share this with everyone you know.