Today is also World Rare Disease Day. There are over 6,000 Rare Diseases, and PANDAS/PANS is considered rare (even if many of us believe that PANDAS/PANS is just rarely diagnosed). You can see a list of Rare Diseases here (and PANDAS is on the list).
On this Leap Day, I have a special invitation for all the Dissenters, Disputers, Doubters, Deniers, and everybody else that acts as if PANDAS/PANS doesn’t exist. Congratulations! You’re invited to Make the Leap to PANDAS/PANS!
Dear Dissenters, Disputers, Doubters, Deniers…You’re Invited to Make the Leap to PANDAS/PANS!
This is really exciting, eh? You get to put down all of that hassle of saying that PANDAS and PANS don’t exist. You get to stop fighting the clinical diagnoses of PANDAS or PANS when they happen and actually can begin making the diagnoses of PANDAS or PANS for very sick children. You actually get to treat the patients that come into your office appropriately for PANDAS/PANS and watch them recover and go into remission. You get to take a whole dish off the very full plate of PANDAS/PANS Parents everywhere who are tired of having to prove that their child’s MEDICAL condition is real.
What do you say? Are you ready to Make the Leap to PANDAS/PANS?
“But wait! Where’s the proof? I need proof!”
<Sigh.> Of course.
It makes sense that you want proof since you are the Dissenters, Disputers, Doubters and/or Deniers. And you are in luck!!!
There are articles dating back to February 1998 link a temporal streptococcus infection to neuropsychiatric symptoms (click here). You can find a white paper from 2012 that describes PANS and PANDAS criteria and symptoms and treatments (click here). There’s an exciting article that was published in December 2015 that that showed how immune cells/auto-antibodies triggered by recurrent Strep A infections enter the brain by traveling along odor-sensing neurons in the nasal cavity (click here or watch this video). There’s even an entire Journal of Child and Adolescent Psychopharmacology (JCAP) from February 2015 is filled to the brim with article dealing only with PANDAS and PANS (click here for the JCAP articles).
“But wait! I want even more proof than that!,” you say.
<Sigh.> Of course you do.
Simply click here or here or here or here or just do a search for PANDAS on any computer or research article service, like PubMed, near you. You can even visit PANDAS Physicians Network (PPN), which is an entire organization “dedicated to helping medical professionals better understand PANS and PANDAS. If you are a doctor, you can even get a free membership to PPN and always be up-to-date on the latest information and participate in the forums. Or check out the Moleculera Labs web site. Or pop over to the My Kid Is Not Crazy web site, which is a PANDAS/PANS documentary that’s in the works. Or you can read more of my PANDAS Sucks Blog…especially the PANDAS In YOUR WORDS series where PANDAS/PANS Parents talk about the condition in their own words.
Isn’t it amazing that there are so many articles and resources and organizations devoted to PANDAS/PANS? It’s especially amazing since this is a MEDICAL condition that so many Dissenters, Disputers, Doubters say doesn’t exist. It’s mind-boggling the amount of work that would be going into proving a medical condition if it didn’t exist, eh?
So, how about now? What do you say? Are you ready to Make the Leap to PANDAS/PANS? It’s even Leap Day!
“But wait! What about those bigwig doctors that say PANDAS/PANS is “controversial” in their published papers and insurance companies that won’t pay for experimental treatments and government officials that won’t make doctors or insurance companies cover it and medical organizations that keep the controversy alive and teachers and/or school officials that refuse to understand that it’s medical versus behavioral and disapproving in-laws and know-it-all siblings with their perfect children and all the friends that just say “bless your heart” and everybody else that says that PANDAS/PANS isn’t real? I’m not going to be the only one that Makes the Leap to PANDAS/PANS.”
Today’s invitation to Make the Leap to PANDAS/PANS is for EVERYONE that is a Dissenter, Disputer, Doubter or Denier. Every Non-believer is invited. You are ALL invited to Make the Leap to PANDAS/PANS on Leap Day. <affects Oprah’s Favorite Things show voice> You’re invited to Make the Leap to PANDAS/PANS! YOU’RE invited to make the Leap to PANDAS/PANS! EVERYBODY IS INVITED TO MAKE THE LEAP TO PANDA/PANS!!!!!!!!!!!!!
Does that help? We all promise to think you’re still super cool. Are you ready to Make the Leap to PANDAS/PANS?
“But wait! What is all this going to cost me?,” you ask.
<Sigh.> Seriously?! OMG! What’s it going to cost you? <Sigh.>
It doesn’t cost a thing to Make the Leap to PANDAS/PANS. Maybe an ounce of pride (or a pound) if you are one of the bigwig doctors that actively Dissent and Dispute and Doubt and Deny the existence of PANDAS/PANS. (Psst…I could name names but won’t because I’m a lady…but I’m not much of a lady because I say fuck a lot and sometimes it’s because of y’all…and I’m irritated by all this stupid, IMAGINARY controversy that costs PANDAS/PANS kids precious healing time that their brains really don’t have. We know who you are though, and you know we know. The Internet’s funny that way…just click a button and the information is there. Plus, PANDAS/PANS Parents talk. If Emily Post didn’t exist….)
For everybody else that’s a Dissenter, Disputer, Doubter, and/or Denier, it’s only a gain. It might cost you a little bit of your time to learn about PANDAS/PANS because you’re now saying it exists instead of saying it’s imaginary. Yes. But for the families and the children that are dealing with this condition 24/7/365…and that’s 366 this year!…they had to learn about PANDAS/PANS the hard way. Let them help you learn. (Unless you are a doctor and have freakin’ access to all the publications yourself…you can get your own articles and do your job and help these kids and families!)
So how about it? All of you Dissenters, Disputers, and Doubters…are you ready? Will you Make the Leap to PANDAS/PANS? We’re waiting. We’re hoping it happens. It should have never been an issue, but it is an issue. An illogical issue because PANDAS/PANS is a thing. Just saying PANDAS/PANS isn’t a thing doesn’t make it not a thing. It puts up roadbloacks. Sure. And we keep busting them down. PANDAS/PANS exists. Period.
Okay…Dissenters, Disputers, Doubters…that’s all I’ve got. Are you ready to Make the Leap to PANDAS/PANS?
It really seems like Leap Day is the perfect day to do it. But I will let you in on a little secret…you can Make the Leap to PANDAS/PANS any day. It doesn’t have to be February 29th. You could do it tomorrow. Or the day after that. Sooner rather than later would be great. And if you could just go ahead and Make the Leap to PANDAS/PANS today then all the kids could get the help they need now. Tick tock, tick tock.
I hope you have a lovely Leap Day. My PANDAS son Jesse’s OCD is ramped up today because Leap Day only comes every four years, and he wants the day to be perfect. Me too. So far the extra 24 hours of PANDAS has not been perfect, but I know something that could really put a smile on my face.
Hey you Dissenters, Disputers, Doubters, and Deniers…MAKE THE LEAP TO PANDAS/PANS.
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Want to send a message to Sarah? Click here.
Sarah 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. See also 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.