It’s Halloween! So gather around PANDAS/PANS Moms and Dads, and anybody that has ever loved a PANDAS/PANS child. I’m going to tell you a “hypothetical” Halloween Horror story that is truly frightening. A story that will make you sick and turn your stomach. A story that will make you lose faith in humanity. A story that will make you scream the loudest scream you ever did scream. It’s the Case of the Disappearing PANDAS!!! ::cue creepy music::
This “hypothetical” Halloween Horror story begins in Anytown, USA. It’s a peaceful town. Some call the town the heart of its state. They like Cats. They are not fond of Cardinals. And once a year, Main Street is teeming with zombies…but they are dancing zombies, so everybody is thrilled, and nobody freaks out (and nobody kills Glenn!). Anytown, USA is often cited as the “Best Place to Live!” or the “Best Place to Raise a Family!” or the “Number One Allergy Capital in the World!” That last one is another horror story full of ragweeds and pollens and mold counts–oh my!).
I want you to picture the scene. It’s Sunday morning, and everybody is on Facebook (because where else could any story start these days but on social media?). Folks wake up to see a story about PANDAS in their Facebook News Feed from a local and very reliable source’s web site.
The story explains that PANDAS is a medical condition and stands for Pediatric Autoimmune Disorder Associated with Strep. It says that doctors are advising during strep season for parents to be aware of PANDAS because it may affect 1 in 200 children. There is a list of the sudden onset PANDAS symptoms (OCD, tics, anxiety, etc…). It gives a history of PANDAS, and how Dr. Swedo and her colleagues discovered it during a pediatric OCD study. It gives treatment options, like antibiotics and immune therapies. And the story ends with the advice that if a child’s behavior changes drastically that parents should request a strep test.
WOW! A local story about PANDAS in the news on Facebook and on the Internet in Anytown, USA!!! The reactions are immediate. The folks who know what PANDAS is are excited. The folks who do not know what PANDAS is are curious and understandably worried and want to know more. Nearly a thousand people hit Like on the story. Many people make Comments on the story because they are glad for the coverage and support, and some have questions. Nearly a thousand people hit Share on the story, and it reaches over 130,000 people. Some folks even Email a support group leader to get more information because maybe PANDAS explains why nothing is helping their sick child and s/he has some of the symptoms listed in the PANDAS Story. There is good buzz with the PANDAS article. The writer did a good job, and the piece is informative and helpful.
How I wish the story ended there on a happy note, and they all lived happily ever after. But it does not end there. Something more sinister is about to happen. Something wicked this way comes.
What is that wicked thing? The local Medical Community also reads the PANDAS story. Doctors read it. Nurses read it. They are skeptical. They are worried that many Moms and Dads may wonder if their child has PANDAS. What ever will they do if somebody dares to bring up PANDAS at a doctor’s appointment and asks for a strep test after their child’s behavior drastically changes?!?!?! GASP!!!!!!!!!!!!! They are mad.
Now, hold onto your seats, Folks. This is the scariest thing ever. It will bring you to your knees. It will make you question humanity and lose all faith in it. You will wonder what the Hippocratic Oath is all about. And even if “do no harm” isn’t really in the Oath that doctors take, should they do harm??????? You’ll ask yourself this question and more when you find out what happens next.
The local Medical Community does the only thing they know to do: they call and complain about the story. They say PANDAS is controversial. They start making a huge deal out of it and create a big stink. Where is the evidence they ask? What doctors are urging parents to be alert to PANDAS? Who says that it affects 1 in 200 children? They make threats and say it is a legal issue to offer incorrect medical info. It is all unproven, and PANDAS does NOT exist.
Here’s the scary part. Are you ready? Are you sure? Are you really sure? Are you really, really, sure you are ready? Okay…here it goes….
THE PANDAS STORY DISAPPEARS!!!
Yes. The PANDAS Story disappears! Whoosh! It’s gone. Deleted. Like it never happened. One minute it is there on the Internet and on Facebook…the next minute it vanishes with a click of a button. It’s as if the PANDAS Story never existed and hadn’t explained what PANDAS was and the symptoms and how it was discovered and what the treatments are and what parents should do if they suspect PANDAS after a strep infection. THE PANDAS STORY DISAPPEARS!
So…ummm…okay…the PANDAS Story disappears because the publisher does not want to deal with the heat it is getting. The writer of the PANDAS Story has sources to back up the facts, but the story is deleted anyway. Okay.
Now I want to tell this “hypothetical” local Medical Community in Anytown, USA a little secret. Please get close, and let me whisper in your ear. Come closer…closer…even closer. There. That’s close enough.
PANDAS IS REAL! PANDAS EXISTS! PANDAS IS OUT THERE! PANDAS DOES AFFECT 1 IN 200 CHILDREN! And that 1 in 200 affected is an estimate based on the idea that a certain percentage of kids with OCD and Tourette’s and ADHD are misdiagnosed. IT IS PROBABLY MORE THAN 1 IN 200 CHILDREN AFFECTED!
It makes no sense that we are still debating the existence of PANDAS, and I am livid that is happening in this “hypothetical” Anytown, USA. The NIMH does NOT make stuff up. There are caring doctors and researchers that are willing to work with families to help heal kids with PANDAS. Medical Journals have special editions devoted to PANDAS/PANS. There are even blogs devoted to PANDAS/PANS (ahem), and many other parent-run PANDAS/PANS organizations (that may or may not be in the same state as Anytown, USA). So maybe no doctors in Anytown, USA have the guts to work with these very sick kids and would rather let them suffer, which in my mind, is the scariest and saddest and most tragic thing about all of this. But making the PANDAS Story disappear because of your complaining does NOT really make it go away.
So here’s what I’m going to say in response to this “hypothetical” Halloween Horror story. You’ll notice I’m borrowing a bit from Liam Neeson here:
I don’t know who you are or what you want…or why you are so hell-bent on denying that PANDAS exists. If you are looking for ransom, I can tell you I don’t have money…because my child has PANDAS and all my money goes to helping my son get better and is spent on treatments that insurance won’t cover. But what I do have are a very particular set of skills; skills I have acquired over a very long career…of doing my own medical research so I could help heal my son when doubting doctors were telling me that he didn’t have PANDAS and to put him on SSRIs when he was only 6 years old. Skills that make me a nightmare for people like you…because I refuse to listen to what doctors say just because they are doctors. If you drop all of this now…and embrace the existence of PANDAS and start treating kids for the real underlying medical issue that is causing their symptoms…that’ll be the end of it. I will not look for you, I will not pursue you…because I won’t have to since you’ll be doing your job as a doctor. But if you don’t, I will look for you, I will find you, and I will…make you believe in PANDAS by making it my personal mission to get this very real medical condition recognized the way it should have been years ago, so all of the unnecessary suffering families go through will stop and stop NOW!
This Mama Bear is pissed. All of us Mama and Papa Bears should be pissed. PANDAS EXISTS! I’m tired of fighting this fight! I’m doubling down, and it IS going to be my mission to make sure that this VERY REAL MEDICAL CONDITION CALLED PANDAS gets recognized. Are you with me? All those in favor of storming the ivory towers the Medical Community holes themselves up in to hide from us say “BOO!!!”
And just one more thing…this IS going to happen whether I make it my mission or not. PANDAS EXISTS. Period. Doctors need to stop saying that it doesn’t, and they need to start treating PANDAS versus shoving a sick kid into whatever box they are used to treating. I’ve been at this for over 6 years and will go as long as it takes…but it’s not going to take much longer because we have made real progress over these past years.
Dear “Hypothetical” Local Medical Community, I know that PANDAS and PANS messes up everything you’ve been taught and told about how you should treat your patients. Oh my goodness, how inconvenient that is for you. ::eyeroll:: But when it comes to PANDAS/PANS, these are children’s inflamed brains. Stop playing Dr. Frankenstein with the psych meds that turn children into zombies, and start working to make them healthy again. NOW!
And THAT my dear PANDAS/PANS Community is your Scary Halloween Horror Story for today. I told you it would make you sick, and you would lose faith in humanity. There are few things scarier than PANDAS/PANS, but this “hypothetical” Anytown, USA story ranks right up there, eh? Sigh.
P.S. I want bonus points for not cursing in this article. Y’all know I wanted to curse. You know I did. <3
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Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.