Welcome to Day 7 of the “12 Days of PANDAS Sucks”!
Every day from December 25 – January 5, you can expect to see a blog post from yours truly. You probably won’t be able to sing the days as a song, but I think you’ll still like it. LOL! However, I will be posting a different version of the song “The 12 Days of Christmas” on each blog. For Day 7, click here Twisted Sister’s Heavy Metal Christmas.
On this seventh day of PANDAS Sucks, I give to you SEVEN WORDS YOU CAN’T SAY IN PANDAS.
George Carlin has a famous routine: The 7 Words You Can Never Say on TV. You can take a listen here to find out those words. Ironically, many of those forbidden words we may mutter every day in dealing with PANDAS/PANS. Ha ha! But there are some words that PANDAS/PANS parents might be nervous to use sometimes. Words that not everybody will let us say. Or words that if we say them we are bound to get unsolicited opinions. Or words we may not even want to say because we don’t want to talk about it. Here’s my take on the SEVEN WORDS YOU CAN’T SAY IN PANDAS/PANS.
Just saying the word PANDAS (or PANS) can get you into a heap of trouble. It’s crazy! The myth of PANDAS/PANS being “rare and controversial” is known far and wide by many doctors and other medical professionals. And the idea of the condition being “rare and controversial” is further proliferated by papers and articles that continue to call it rare and controversial!!! “PANDAS is controversial” is likely the first thing a parent will hear when they start trying to talk to their pediatrician about possible causes for their child’s behavior. If you’re lucky, the doctor will also roll his/her eyes. Or doctors will debate if PANDAS even exists? The paper introducing PANDAS was published in 1998 with all the years of research occurring for years before that. And yet…here we are at the cusp of 2016 still discussing the reality of this condition. Instead of helping suffering kids that need help and getting to the root of the problem, an infection that resulted in an autoimmune response (!), it is somehow considered okay to mask the symptoms (OCD, tics, anxiety, etc…) with medications and create a lifelong dependence on psychotropic drugs. Funny how psychiatric illnesses have few real tests but lots of drugs to “fix” them…doctors usually believe in those drugs too. Ugh! JUST CHECK FOR INFECTIONS!!!
And there’s no medical diagnostic code for PANDAS/PANS. Whenever I have to talk to insurance companies about my son’s treatments, I’m scared that I will say something wrong and get a swift denial for coverage. My son has a MEDICAL reason and a real need for his medications and procedures, and the codes used are legitimate. Not having a PANDAS/PANS code is just another hurdle in the struggle for acceptance. We have been lucky insurance-wise (KNOCK ON WOOD!), but others are not so lucky. And not having the codes means many doctors will not take insurance for PANDAS/PANS treatment. I am still very thankful that these doctors treat PANDAS/PANS. (THANK YOU!!!) Not having the codes is unfair for these doctors too.
And it’s not just doctors or insurance companies that might not believe in PANDAS/PANS. Family members, friends, teachers, and even strangers have opinions on the behavior of your child and what they need. No. My child has a MEDICAL condition that is being largely ignored. It’s not my fault YOU have heard of it. I’m glad you haven’t because that means you’re not dealing with the nightmare that is PANDAS/PANS. But now if a child you know suddenly develops OCD, tics, anxiety, rages, insomnia, and a whole host of other symptoms after an illness, you’ll know that it might be PANDAS/PANS and can get that child help. YOU’RE WELCOME!
I really don’t understand how medical professionals who should know better still don’t. And why it’s okay to make it so very difficult to get treatment for a VERY REAL MEDICAL CONDITION. There are instances where PANDAS/PANS kids have been taken from their families, or PANDAS/PANS Parents are accused of Munchausen by Proxy. And the kids that are labeled behavior problems when there is an infection or other medical condition causing the issue but is never addressed?…it’s not hard to figure out what happens to them. THAT’S the stuff that breaks my heart. Well, it ALL breaks my heart. Finding doctors that will accurately diagnose and effectively treat the PANDAS/PANS should not be this difficult. We should be able to talk about PANDAS/PANS the same way parents talk about diabetes or cancer or any other illness. PANDAS/PANS exists. Period. End of story. And recent research is helping to prove PANDAS/PANS is real. Hallelujah! The work we are doing now will eventually result in children getting quicker diagnoses and treatments. There will be less suffering.
[NOTE: I counted PANDAS/PANS as one word. There’s still SIX more to go. 🙂 ]
I have a public PANDAS blog and air a bunch of stuff that I’d rather keep private. I honestly don’t think that my son’s medical condition is anybody else’s business. HOWEVER, by telling my story and giving an outlet for others to tell their stories, I’m helping people learn about a medical condition that they NEED to know about. (And it helps those of us dealing with PANDAS/PANS heal ourselves by telling our stories.)
Many of the PANDAS/PANS symptoms appear to be mental illnesses (OCD, tics, anxiety, depression, etc…), and there’s a stigma about mental illness. There’s really a stigma about illness in general. You’re supposed to be healthy, or lie and say that you’re “fine” even when you’re not. And the more we whisper and stay hidden, the less that has to change. I figure I’m on plenty of “lists” already, so why shut up now? I really don’t care what people think about me–obviously, and barely understand the concept of people-pleasing–obviously. Plus, I have the Freedom of Speech. I have this blog by choice because I think it’s important. Nobody is forcing me to tell everything…and believe it or not, I do keep some things private. But I don’t like it that as PANDAS/PANS Parents we do end up having to give more information to schools or day cares or churches or coaches anybody that deals with our kids. HIPAA (Health Insurance Portability and Accountability Act) is there to protect your medical records and other personal health information. But in order for your kid to get to participate in activities and for their own protection, you end up giving out A LOT of information. Many times you’re giving info as a justification to explain why you’re doing what you’re doing as a parent. And every time you’re talking about PANDAS/PANS, you wonder if it will be used against you later. It’s still a difficult choice determining how much you talk about PANDAS/PANS. There is no right or wrong either. We do what we have to do for our kids.
Do what you feel in your heart to be right- for you’ll be criticized anyway. You’ll be damned if you do, and damned if you don’t. ~Eleanor Roosevelt
Ugh. I hate even going here because it’s sooooo loaded. I’m not going to say much. Vaccines are one of those topics that you rarely can have a true logical conversation about with anyone. There is a scary mob mentality that exists against anyone that raises their hand to ask questions about vaccinations. It’s not a huge leap for me to understand that there is not one medicine anywhere that is going to be okay for everybody to take. I get this concept eespecially when the vaccine manufacturers are immune to lawsuits (pun intended). I have seen vaccine reactions in my son. The H1N1 vaccine was administered very shortly before his PANDAS symptoms exploded. But before that, I saw major reactions when he was four-years-old and probably even before that…but I didn’t know what I was seeing. And even if I’d pointed out the reactions, there is a minuscule chance the doctor would have labeled them being caused by the vaccines. Are vaccines safe for PANDAS/PANS kids? Did they play a role in causing the condition? Many of us PANDAS/PANS parents have a lot of questions…we’re unlikely to ever get answers. Ugh. NEXT TOPIC!
Doctors that know PANDAS/PANS exists as a possibility but refuse to diagnose and treat it…what is that? Doctors that know a child likely has PANDAS/PANS but will only give psychotropic drugs…what is that? Doctors that refuse to acknowledge PANDAS/PANS exists…what is that? When we go to doctor after doctor and get misdiagnosed and are given the wrong treatments…what is that? When PANDAS/PANS is a normal diagnosis, will we get apologies? Probably not. I know there are a lot of legal qualifications and mumbo jumbo for true medical malpractice to ever be declared. But you would think that the idea of malpractice would make a doctor overturn all the stones to find the real illnesses. But some would rather refer out and put patients on long waiting lists to see a specialist versus giving immediate help or pretend PANDAS/PANS doesn’t even exist. It seems negligent. It’s definitely ridiculous.
I have Lyme Disease. There. I’ve officially said it. I might have said it before, but I don’t talk about it much. One reason for that is that Lyme Disease is really frightening, and there are tons of horror stories about the possible symptoms and complications of Lyme. I’m still in shock and kinda numb from getting my diagnosis, which happened over a year ago. I am in treatment, and I’m getting ready to kick all of my meds up a notch and am really scared about it too. So many PANDAS/PANS families have found Lyme in themselves and in their kids. Lyme is listed as a possible trigger for PANS. But among mainstream medical professionals, there are doubts that Lyme Disease exists. Or there is the idea that it is easily cured and can’t have chronic Lyme Disease. There’s a huge battle being fought on the Lyme front. I advocate for PANDAS/PANS and should do more on the Lyme side, and I’m sure I will eventually. Right now, I do what I can, which includes calling bullshit on how difficult it is to get effective treatment for Lyme Disease and all of its co-infections. You are lucky if a doctor will listen to you when it comes to Lyme. You are lucky if a doctor will listen to you and test for Lyme. You are lucky if a doctor will listen to you and test and diagnose Lyme. You are lucky if a doctor will listen to you and test and diagnose and effectively treat for Lyme. And you are lucky if a doctor will listen to you and test and diagnose and effectively treat and take insurance for Lyme…in face, if this scenario happens then you, my friend, have found a unicorn–hold onto it and ride it over the rainbow. 🙂
Long-term antibiotics are a treatment for PANDAS/PANS…just like they are for Rheumatic Fever and Sydenham’s Chorea and other medical conditions. My son has been on antibiotics for over five years. You’d think that’s terrible to hear some people talk about it. I recently had a conversation about antibiotics with a family member that knows my son is on long-term antibiotics and needs them to maintain his health and still got a negative attitude about it. Sigh.
People act like you can get antibiotics as easily as you buy aspirin, and that is not true. If a doctor cannot tell a patient they don’t need antibiotics for an ailment, then they need to grow a pair…and I don’t want that guy/gal as my doctor. Is there antibiotic overuse? I don’t know. Maybe. But…when antibiotics ARE recommended for certain conditions, shut up about the dangers. There’s a lot of antibiotic abuse in the meat industry that we should be more worried about than when the medications are needed for humans.
And don’t think this just happens with people outside of PANDAS/PANS. There are plenty of folks inside the PANDAS/PANS Community that espouse the dangers of long-term antibiotics and rely on more natural cures. They talk about homeopathy, essential oils, certain supplements, going gluten-free and using special diets, and all kids of crunchy stuff like that. And you know what happens when they talk about alternative treatment options? People act like they’re crazy. LOL!
Most treatments plans for PANDAS/PANS get some criticism. Oh you used IVIG?…that’s DANGEROUS!!! Your kid takes daily antibiotics?…that LEADS TO RESISTANCE!!! Your kid took steroids…they’re HARMFUL!!! Your kid goes to a chiropractor?…they’re QUACKS!!! You’re gluten-free?…that’s a MARKETING GIMMICK!!! You use essential oils?…that’s SNAKE OIL!!! You rely on homeopathy?…that’s A BUNCH OF BUNK!!! You give your child supplements?…those will NEVER WORK!!! People have opinions on everything, and they love to tell you about them. Shame and guilt could be Olympic sports. It’s amazing.
I think my point here is…shut up. If you are not in on the decision making for a treatment plan being created by a doctor for my child…then SHUT UP. I don’t care if the treatment plan is for PANDAS/PANS or for a hangnail…shut up. I do my research and would never do anything to harm my son. If I had my way, my son would not have PANDAS/PANS. I didn’t choose this. Walk a mile in my shoes and then talk to me. But even if you have a size 7 foot and can wear my shoes, I still probably won’t want to hear it. Not interested. My son’s treatment plan is between his doctors and me. But here…let me give you all of my opinions about all the things you do that have nothing to do with me. What? You don’t want to hear what I have to say? That’s so weird.
P.S. Know what else uses long-term antibiotics for treatment? Lyme Disease. FML. Oh, but you have acne? A dermatologist will give you all the antibiotics you need for as long as you need them. SMDH. And I’m not knocking acne here. It’s awful. Just the perspective on antibiotics is definitely skewed.
Is PANDAS/PANS curable? I don’t know for sure. I started this journey thinking I would go get treatment and RECOVER my son. Wham. Bam. Thank you ma’am. Then I planned to save the world from PANDAS/PANS. That was over five years ago, and I’ve realized that I’m on an odyssey. PANDAS/PANS is auto-immune. Can I even expect full recovery? Does it go away? Can all I hope for is remission? Will my son deal with PANDAS forever? Or will he age out of it? I don’t know. Nobody knows! That’s scary. Yes, Dr. Swedo has said that the majority of the patients from the first PANDAS study done back in the 90’s are without symptoms now. But nobody knows the future for our PANDAS/PANS kids (and what about our kids’ kids???). We don’t even know exactly what is the CAUSE of PANDAS/PANS…that’s scary too. We can say CAUSE is another word we don’t talk about much either but we sure do wonder, eh?
Those are my picks for SEVEN WORDS YOU CAN’T SAY IN PANDAS/PANS. PANDAS/PANS. Privacy. Vaccines. Malpractice. Lyme. Antibiotics. Cure. (Bonus word: Cause.)
Do you agree with these SEVEN WORDS? Can you think of any other forbidden words? I’m sure there are more. Let me know, and we’ll add them to the list. I did have a few other words…but they’re more along the line of George Carlin’s list. LOL!
It’s December 31st. Here’s to saying good riddance to 2015, which was definitely not my best year on record. I’m setting the bar so low for 2016 that if there are 24 hours in each of its 366 days in this leap year, then it will meet my expectations. But I do hope that the next year will surprise me with all kinds of goodness and delights. And I truly wish each of you a Sensational 2016.
HAPPY NEW YEAR!
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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.