I watch a lot of YouTube. Too much really. And I get a lot of different types of suggested videos on my home page there. Last night after watching one video, I noticed a thumbnail from ABC 20/20. The title was “Parents fear for young daughter’s safety as her behavior changes dramatically…Part 1.”
I clicked, out of sheer curiosity. I had no idea what it would be about. In that particular video they didn’t even get to what the diagnosis was so I went seeking out part 2. But I’d also read comments under the first video and some people were naming PANDAS as the probable diagnosis.
I had to know more and watched part 2 and 3 hoping to see the whole episode. I finally found a link in the comment section of part 3 to the entire show, which I will link below.
PANDAS stands for Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. The video explains it much better than I do, the way it all works in the body, but essentially when you have an infection/virus like strep throat, the virus can make its way across the blood brain barrier and effect your brain…which means it will effect your behavior.
Some of the illnesses named in the references I’ve found so far are strep throat, rheumatic fever and scarlet fever. I only noticed someone mention scarlet fever in passing, I think it was in the comment section of the article I read. You can find the article here if you’re interested.
The following paragraph from the article is rather interesting:
“The population is split between patients who had never been to a psychiatrist before, and those who had been to one, or many, with less than salutary results. The presenting complaints varied broadly; anxiety, panic, depression, ADHD, sleep difficulties, OCD, tics, Bipolar Disorder, ODD, headaches, fibromyalgia, medication side effects. And many more.”
As I watched the video and read the article, I wondered seriously how many people have been misdiagnosed with borderline personality disorder and other so-called mental disorders but actually have PANDAS.
This requires testing to be absolutely sure and it’s not too probable that I have such testing available to me. In addition to that, it’s not recognized by many doctors. What a fuckin’ surprise righ? Some deny it exists and say that there’s not enough evidence. So even though testing exists to find out, these fucking assholes won’t even order the test let alone acknowledge your concern about it if you mention it to them.
I think about all the psychiatrists I went to see when I was younger, at a time when these doctors still held office hours and talked to their patients. Not one of them ever ordered tests to see if anything was PHYSICALLY wrong. NOT ONE even suggested it.
And later, when I spent time with therapists, nothing like that was suggested either. Now psychiatrists meet with a patient for 15 minutes tops at a time to throw a Rx at people. It never occurred to me either because well, I was indoctrinated, gas lit and brain washed to believe it was my mind.
I mean for fucks sake, is our brain not a physical part of our body anyway??? Seriously!
But I digress.
Some things that stood out to me in my discovery of this disorder was that my father when he was 9 years old came down with rheumatic fever. It would not have even been 1950 yet, so of course, PANDAS was not even named yet. But that doesn’t mean the symptoms and reactions in the body didn’t exist. The infection would’ve changed his DNA despite being treated.
My father as an adult displayed some of the symptoms of PANDAS. Of course I would not know when they started. It would be interesting to know if anything about his personality changed after he recovered. He was bed-ridden for an entire school year. Had to have a tutor come in to the house and the doctor made house calls. As an adult though, my father had mood swings, which was the most prominent I would say of his symptoms, traits or whatever you wanna call them. He also displayed rage to a point.I almost hesitate to say that only because I’ve experienced someone raging at me and I’ve raged at others.
My father never did it like that. His anger would be sudden and his voice would boom. He had a very deep voice and if something set him off suddenly, the unexpected reaction of the angry tone of voice had the same intimidating effect of raging. The end of his rage would be abrupt and he’d turn and walk away. Then later, you’d never even know he’d been angry.
There was a point in time, during my adolescence though that he seemed to be perpetually angry with me. Just gave me the cold shoulder much of the time or spoke abruptly to me.
And finally he also displayed behaviors that I would be considered OCD and last but not least, severe and I mean severe anxiety and control issues.
As for me and my illnesses: When I was a kid, I had scarlet fever TWICE! Once when I was 5 and then again at the age of 9 at the same time that I had chicken pox.
I’ve already mentioned that I have ragey episodes. I am moody for sure and definitely have some OCD behaviors and habits. AND intense anxiety and control issues.
I know that these things add up to other problems, disorders and “mental” illnesses but they ALSO add up to PANDAS. I know I’m an adult. You could just change it to AANDAS. The symptoms still can play out in an adult.
Adults get strep throat and strep infections, particularly if they work in hospitals and doctor offices. And if they’ve had the aforementioned viruses and infections in the past as children, and it went unnoticed or untreated, then it would still be present in an adult body/brain.
Even treating these infections, PANDAS can still take hold as you will see in the video if you watch it.
I want to make it clear though that even though I think this could be a piece of my puzzle, I still understand that it’s not the answer for everyone. It doesn’t mean I’m discounting the effects of traumatic experiences in any way. I have enough of my own. In fact, intense stressful experiences can trigger PANDAS from what I understand so far. And that’s why I say, “a PIECE of my puzzle.”
In addition I also understand that it might NOT be what’s wrong too. I’m just considering it and I was pretty blown away by the correlations that I see.
More of why I think it might be part of what’s going on with me:
I notice a difference in the way I feel (mood swings), my behavior (rage) and even my thought process and perceptions, when I am eating a certain way. The healthier I eat, the better I feel.The more stable I am in my mood. The more awake I feel when I first get up in the morning. The less OCD behavior I display.
These behaviors can manifest as a result of inflammation and I notice inflammation in my body in more physical ways more so now than ever. Inflammation plays a part in auto-immune disorders and in fact pretty much any illness.
When I was a young adult, I ate so much take-out, including fast food. That food by sheer design is inflammatory to the healthiest of humans. But when someone who has a sensitive constitution and/or an accumulation of it in their body over a period of time, the reactions will become more and more intense. A person’s brain can swell and they may not necessarily feel it. And certainly no on on the outside can see it…except in the behaviors that are displayed. And then it’s punished and judged.
Apparently diet is used with some kids who have PANDAS along with probiotics and behavioral therapy. So I can see the correlation with diet. The behavioral therapy? Well I was on the right track there but it’s really useless when the brain is causing the mind to be in a dark place. Not to mention the horrid environment and shitty therapists I got stuck with when I went for it.
It’s frustrating. It seems that I find myself on the right track at times but in the wrong order.
I also tend to self-sabotage because food isn’t a fast fix. It takes time and after about two weeks, I give in to cravings and I get back into a downward spiral and before I know it I’m feeling very out of control again.
Anyway, here’s the video just below. It could be difficult to watch because… well, children are struggling. But the info could also be helpful if you’ve been struggling in some way with your diagnosis and doctors not listening to you.
Another link: PANDASnetwork.org