Welcome to Day 2 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 2, check out John Denver & The Muppets singing the song.
On this second day of PANDAS Sucks, I have TWO PANDA PUZZLES for you to check out. One of them has a twist.
From your PC/laptop, you can access the first PANDA PUZZLE by clicking here. It’s not that difficult. Put the puzzle pieces together to create a picture of a panda. It’s not like piecing together the puzzle of PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder (or PANS: Pediatric Acute-onset Neuropsychiatric Syndrome).
The second PANDA PUZZLE is a bit trickier. It’s been taking the Internet by storm these last few weeks. You are asked to find the panda in a sea of snowmen. The puzzling cartoon was drawn by Danish artist, Gergely Dudás, and right now, it’s been shared over 179,000 times on Facebook. I’ve seen it in the Facebook Groups, and on Timelines of many of my friends. I even posted it on the PANDAS Sucks Facebook Page earlier this week with the comment “It took me a little while to find the panda in this puzzle…kinda like finding a PANDAS doctor.”
How about you? Can you find the lone panda amongst the snowmen?
Did you find the panda? How long did it take you? Fun, huh?
Okay…now for the twist. Let’s look at this puzzle and try to guess how many PANDAS (and PANS) might be in the picture. It gets a little trickier.
I counted and there are 183 figures in the cartoon: 182 snowmen and 1 panda. We know we have at least 1 PANDAS, eh? Ha ha. But let’s think about the picture from a few different angles.
If you are at a PANDAS/PANS Conference, ALL of the 183 figures in the picture would be affected children or at least suspected for the condition. You’d have a lot of anxious parents listening for any glimmer of hope from the speakers. They’d be looking for reasons why their snowkids had to have their buttons positioned just so. Why their snowbaby has a tic that makes her touch her carrot nose hundreds of times a day. Why their snowkid’s eyes had to be made out of two pieces of coal that are EXACTLY the same. Why their snowchild couldn’t sit still and suddenly developed attention issues at school after several years of successful classroom behavior. Why their snowkid would not sleep at night. The list of symptoms could go on and on. (And if it’s like the St Louis PANS/PANDAS Conference, you’d get the pleasure of listening to a doctor give an interesting talk about Tourette’s until you realize he’s a PANDAS non-believer that has co-authored articles against the condition. Ahhhh!!! That was fun. Good times. Ugh.)
Using the PANDAS Network statistics, there would still be up to 1 PANDAS/PANS in the picture. On their web site, PANDAS Network has conservatively figured that 1 in 200 kids could have PANDAS/PANS. Their statistics are based on figures of kids diagnosed with OCD, Tourette’s, and Anxiety/Etc…. It also takes into consideration that Dr Swedo has stated that up to 25% of children diagnosed with OCD and tic disorders could actually have PANDAS. PANDAS Network states, “The statistical relevance is equal to Pediatric Cancer¹, Pediatric Diabetes I and II², and ALS³. The healthy outcome of a child’s life can be seriously affected, but research and treatment for PANDAS/PANS is scarce.” Yup. Sigh. We are living that snowmen/panda cartoon, eh?
There’s yet another way to look at it. Check out this information about “Any [Mental] Disorder Among Children” I found on the NIMH web site:
“Mental disorders are common among children in the United States, and can be particularly difficult for the children themselves and their caregivers. While mental disorders are widespread, the main burden of illness is concentrated among those suffering from a seriously debilitating mental illness. Just over 20 percent (or 1 in 5) children, either currently or at some point during their life, have had a seriously debilitating mental disorder.”
OMG! That statement boggles my mind! Why are mental disorders common in children? And 1 in 5 children have had a seriously debilitating mental disorder?! OMG!!! And if this is the case, why aren’t more doctors freaking familiar with PANDAS/PANS as a potential cause of these “mental disorders,” right??? Most of the PANDAS/PANS symptoms present as mental disorders. OMG! Tell me that I’m not the only one that finds this statement and the corresponding charts on the NIMH web site to be shocking. The NIMH figures are based on children aged 13-18 with charts showing prevalence. On the same page another CDC chart depicts the prevalence in kids from ages 8-15 with the statistic that 13% of children ages 8 to 15 had a diagnosable mental disorder within the previous year. NOTE: OCD and Tic Disorders are not specifically mentioned, but “OCD causes severe anxiety in those [children] affected” per the International OCD Foundation. Tic Disorders and ADHD carry a certain amount of anxiety too.
So…OMG…let’s consider 20% of the 183 cartoon figures from the puzzle have a debilitating mental illness. That’s 37 of them (36.6). 37!!! If we use the 13% cited in the CDC chart, that’s 24 with mental disorders (23.79). 24!!! These are kids that actually get a diagnosis too. And not all of those kids are going to have PANDAS/PANS. But…couldn’t you at least say that those 24-36 kids should possibly be screened for possible PANDAS/PANS? Did the mental illness have an abrupt onset? What are all the symptoms? Do they have strep? Do they have other infections like Lyme Disease (which is so much more prevalent than anybody even knows) or Mycoplasma Pneumonia/Walking Pneumonia. Do they have a virus like Mononucleosis/Epstein Barr Virus? Have they had the flu? Do they have allergies? Have they come into contact with any environmental irritants? What about metabolic conditions that could be causing the issues? These snowmen look healthy, but are they??? Faulty immune systems can cause asymptomatic illnesses.
Another NIMH chart, “Use of Mental Illness Services and Treatment Among Children,” pulls data from a certain CDC report. It cites that “approximately half (50.6 percent) of children with mental disorders had received treatment for their disorder within the past year. There were some differences between treatment rates depending on the category of mental disorder. Children with anxiety disorders were the least likely (32.2 percent) to have received treatment in the past year.” It also says “females are 50 percent less likely than males to use [mental health] services” and that older kids were more likely to receive services.
So going by the NIMH numbers (OMG!), it could be anywhere from 24 up to 36 snowmen that could/should possibly screened for PANDAS/PANS. Of course, not all of them will have PANDAS/PANS. Everything isn’t PANDAS/PANS even if we parents feel like we see it everywhere. But even if it’s not PANDAS/PANS, these kids will be diagnosed with a DEBILITATING MENTAL ILLNESS, which apparently we’re calling common in kids these days. But there might be mild cases of “mental disorders” that still cause major issues, discomfort, and lifestyle changes for the children and their families. And how many of these kids are actually PANDAS/PANS but are receiving treatment for a misdiagnosed mental disorder that is not treating the real underlying cause? It makes me very sad. So much suffering inside the four walls of so many homes. And these NIMH and CDC numbers are for the United States only…PANDAS/PANS is worldwide. Sigh.
It’s quite a twist to look at the fun “find the panda” puzzle with PANDAS/PANS in mind, eh? The very awful truth is that we don’t know how many kids are affected by PANDAS/PANS. We don’t have a diagnostic code yet, so we can’t track patients. Heck, there are still doctors that don’t believe it exists. And just because you can get a doctor to say it might be PANDAS/PANS, that doesn’t mean that they will adequately treat your child. More likely, they will refer you out to a specialist who may or may not appropriately test for infections and give effective treatment. And insurance companies barely want to pay for anything to do with PANDAS/PANS.
It’s all so frustrating. It’s also why we do what we all do to raise Awareness and Understanding of PANDAS/PANS. We advocate like crazy for our own PANDAS/PANS kids, which also helps all the other unknown and future cases out there. Our experiences will collectively drive the medical professionals and the educators to take PANDAS/PANS seriously. The nonsense surrounding this MEDICAL condition needs to stop. Sigh
I hope you’re having a good December 26th. I think I need to go eat some chocolate after crunching those numbers. I’ll make it dark chocolate so it’s good for me. Who knows…I might even add a glass of red wine and be doubly healthy. LOL!
Until tomorrow…12/27…the 3rd Day of PANDAS Sucks. Oh, and if you liked the snowmen/panda picture, Dudolf has a new puzzle: find the cat amongst the owls. Meow. 🙂
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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.