FIX IT!

FIX IT!

Or as I wrote in a message to my friend this morning after reading some horribly sad stuff on Facebook: “Somebody needs to FIX PANDAS RIGHT NOW!!!!!!!!!!!!!!!!“

I also said: “I want to DO SOMETHING!!!!!! There is nothing I can do. Blog. That’s it. And I will.” 

FIX IT! Fix PANDAS. That’s really all I wanna say today. It’s not all I’ll say. But it is the main idea. I suppose it’s the only idea. Fix PANDAS, and do it NOW! FIX IT! Thanks.

Fix all the pain that families are going through. And it’s the entire family that suffers. The PANDAS child(ren). The mom. The dad. The siblings (if there are any). The grandparents. The aunts. The uncles. The cousins. EVERYBODY in a family is affected and feels the pain…that’s emotional pain and sometimes physical pain too. And friends of PANDAS folks feel the pain too. Fix the pain PANDAS causes.

Fix the fact that it is so hard to get diagnosed and treated. Fix that doctors are hesitant/scared to make the diagnosis because it’s a clinical diagnosis so there’s no PANDAS “test”, so they refer patients to specialists with appointments X months from now. Fix that even many of the specialists are hesitant to diagnose PANDAS, which delays treatment even longer. (My real advice to non-diagnosing/non-treating doctors? “Grow a pair!” But I don’t want to say that because I’m trying to be polite.) Fix that 15 minutes in a doctor’s office is not enough time to communicate everything that’s going on with your child. But then the doctor says whatever s/he says (probably “let’s wait and see” or give a referral or treats as a common problem versus a complicated one) and moves on to her/his next patient. Meanwhile, you go home to spend the other 23 hours and 45 minutes of that day with your sick child without getting any help. And even when your child is diagnosed, has received treatment, and is doing well, you worry about needing help in the future. As I said to my friend this morning: “You trust a doctor to help your kid. Help your family. And they don’t. Because they can’t or won’t. Not sure. But they sure aren’t figuring out why it’s happening.” Fix getting PANDAS diagnosed and getting treatment.

Fix that there is no instruction on how to even treat possible PANDAS. Hell, there’s not even really a standard treatment once PANDAS is diagnosed for that matter. A lot of advice for treating PANDAS gets passed through anecdotal evidence via the very strong PANDAS Parents network. (We share things like “psst…a loose tooth can cause a PANDAS flare”.) Fix that “let’s wait and see what happens” approach that a lot of doctors tend to take because it just worsens PANDAS, and “psst…subsequent exacerbations can possibly get worse and worse”. (HEY DOCTOR! GIVE THAT KID SOME ANTIBIOTICS! WHAT IS THE BIG DEAL?! And don’t cite antibiotic resistance unless you’re willing to admit that our food supply is also an issue with unregulated medications given to livestock. You have a sick kid in your office, so three more words: Do No Harm. Ugh.) Fix that even some of the recommendations out there cite treatments that aren’t really enough to help, but that’s what the doctors see. Fix that there is no standard of care or checklist that can be used with PANDAS. The book “Childhood Interrupted: The Complete Guide to PANDAS and PANS” by Beth Alison Maloney is about as close to a checklist you can get. It has a ton of information. Buy it for yourself and for your doctor. This book is follow up to her book “Saving Sammy: Curing the Boy Who Caught OCD”, which details her own son’s PANDAS. (Beth’s an awesome advocate…thanks for the new book!) And yes, treatments are difficult to develop because each PANDAS child presents differently with their own set of symptoms. I get that…sure. But just because it can be complicated to treat PANDAS doesn’t mean that it’s not an issue. Fix that there needs to be a standard of care for PANDAS that covers multiple scenarios.

Fix that the word “controversial” was ever used with this condition. PANDAS exists!!! Kids get better with correct treatment!!! All the word “controversial” does is cast doubt on the condition so doctors don’t want to diagnose nor treat PANDAS. And it being “controversial” gives health insurance companies a reason not to cover PANDAS treatments. And if insurance does happen to cover it, you can’t say the word PANDAS because there’s no code. But of course, PANDAS causes so many other issues (or is caused by so many other issues…who knows? oh yeah…nobody knows yet!) that there can be immune issues that will be covered. You have to be sure your kid gets sick enough to actually get treatment though. So buckle up Boys, it’s gonna be a bumpy ride while your kid’s health does a major downslide. Fix it so PANDAS isn’t controversial anymore.

Fix the all the school shit that comes along with PANDAS. I really am at a loss to even explain how fucked up school gets for the PANDAS kids. Seriously, it’s ridiculous. Special accommodations that aren’t honored. Homebound education that sometimes helps or sometimes doesn’t. Medical issues that are treated as behavioral issues. How parents can have a meeting and explain PANDAS only to repeatedly have to explain it again and again to teachers. To be honest, the schools should be vocal about getting PANDAS fixed as we parents need to be. Fix how PANDAS kids and their parents are treated in the schools.

I read stories online of the pain caused by PANDAS every single day. Even if I don’t (or can’t) go into one of the Facebook support groups, the posts hit my News Feed. I read the struggles of my friends and fellow PANDAS Parents and my heart goes out to everyone dealing with this disorder. The families that have the PANDAS diagnosis and are in treatment that is or isn’t working. The families that are beginning to suspect PANDAS. The families that have no idea that PANDAS even exists and just know something is happening to their kid. (I haven’t met those parents…yet.) I truly can’t absorb most of the PANDAS stories I read. I sit and experience a cavalcade of emotions, including a deep, deep sadness. There is a hopelessness and helplessness that goes along with being a fellow PANDAS Parent. You can listen. You can sympathize and empathize. But you can’t fix it…but you really wanna FIX IT.

Fix it. Fix PANDAS. FIX PANDAS NOW!

Let 2014 be the year that PANDAS finally does hit mainstream and people won’t have to feel so much pain and be so sad and stressed out. They won’t have to wait to get their kids diagnosed and treated. They won’t have to worry about how they’re going to pay for treatment. They will have a standard of care to treat their PANDAS kid(s). They won’t have to deal with awful school meetings. They won’t have to read the PANDAS stories of their friends and cry and feel so helpless.

And who is supposed to fix it? That’s where it gets tricky. Somebody needs to do it. But who can? We all can. We’re all Somebody. We just have to figure out how to fix all the issues inside of PANDAS. And we need to do it NOW! (Piece o’ cake. Ha Ha.)

Here’s what I told my friend this morning since neither of us know how to Fix It…yet: “We will figure out something. By WE I mean mankind. Hoping the KIND part kicks in soon. Everyone could use more of that.”

 Love,

Tell us why YOU think PANDAS Sucks. Click here. We post these reasons in a blog series.

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 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, 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. 

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