Tenacity

A phone consultation could be a BIG help. But if you can recruit your local pediatrician or local specialist to participate -- even better!...

Such a scary -- and humorous -- post/thread! I see a cultural component here. We teach our children not to burp in public, yet in some countries they would be considered rude if they neglected to burp after being served a nice meal.... But there is also a political component here -- (Who's in charge?!) -- and there is a health component. I recall, my father, after my brother and sister-in-law had given him strict instructions not to serve my niece (a baby at the time, but I forget exactly how old) any nuts, defiantly served her a brownie with nuts. ("I know better! My kids ate nuts and they turned out just fine! etc., etc.") She suffered no ill effects. But what if she'd turned out to have a nut allergy?... She could have died.... Germs are abnormally dangerous to people with autoimmune syndromes. Sadly, most folks don't even know what an "autoimmune syndrome" is. But for a parent caring for a kid with an autoimmune syndrome, health concerns trump concerns of etiquette and politics. Good luck with your continuing navigation!!!

I would never presume to know just what it is your son is experiencing. However, weird visual perception is sometimes a symptom of post-infectious neuropsychiatric autoimmune syndromes. And, while the eyes themselves are sometimes affected -- crossing, rolling, locking, etc. -- sometimes the eyes themselves may be functioning normally, while visual perception is not, on account of something else going on in the brain. At various times my son experienced double vision, colored spots, distorted color perception, and distorted depth/spatial perception in which objects' sizes and distances did not appear to him as they should. Some other parents report this same sort of thing (I bet you could dig up some old forum posts on the subject), as does some medical literature. Scary stuff....

Please PM, if you might be interested in communicating locally....

Thank you for the tip, SF Mom! (I may contact you directly to learn more.) Tenacity

My son's treating specialist recommends a year of high-dose IVIG infusions every 4-6 weeks. But after covering one IVIG infusion and one plasmapheresis procedure -- both of which produced clear improvement, but improvement which was limited and unsustainable without further treatment -- our insurance company is denying further coverage. We are now preparing to pay for treatment ourselves and to commence an external appeal. In an honest, fair world (Ha!), and in accordance with the insurance company's written procedural guidelines, we should be able to overturn this decision on external appeal. Our son is severely ill -- mute, unable to read/write, unable to attend school for over 16 months now. Three specialists have diagnosed him. Immunomodulatory treatments have proven helpful, and everything else under the sun has been tried and shown to be ineffective. And we have at least a couple pieces of medical literature supporting the treatment protocol of high-dose IVIG. But we live in Rochester, NY, where "they don't believe in PANDAS." And at this stage in the game we trust no one and nothing. We want to give this appeal our best shot. Does anyone have any good advice for us? (I am poking around previous posts on this subject, but it's tricky sifting through everything.) Is there a useful thread about insurance appeals on the forum? What medical publications are most helpful? What arguments? Has anyone employed a medical advocate and found it helpful? We'd be grateful for any tips! Thanks! Tenacity

QUOTE: I decided to educate myself as much as possible BEFORE even doing the test.... read cure unknown, did some research, found a reputable LLMD- well, we got a positive result. ------------------------------------------------------- What is "the test"?

A tiny statistic is so easy to dismiss -- until it happens to you -- or your child. Say, something happens to one in a hundred people, even "one in a million." Can anyone even know this for sure? How many people in the entire world might be stricken? And does any of this matter in the least, if you are the one who's stricken? . . . Bad doctors (I know this sounds accusatory and extreme, but this is what I've come to, for better or worse. . .) -- bad doctors are under the mistaken impression that everything revolves around them, their training, their algorithms, their connections. . . . If a terrible germ arrived on Earth in an alien space ship, they'd all say, "Nope! Can't be! My text books don't say anything about this! Neither did my professors! And what's more, I never saw such a thing! . . ." Every doctor worth a bean should know better, but must of the doctors I've encountered DO NOT. Of course, the doctor looking at such things from the optimal vantage point is -- generally -- a generalist, and not a specialist (if not by title, then at least in spirit). It's the person who understands that anything and everything might connect with anything and everything, the person who's so used to surprises that he's come to expect them, the person who knows he doesn't know it all -- that's the kind of doctor we need more of! Tenacity

As indicated by the variety of responses here, joint pain is a symptom with more than one possible cause. My child suffered excruciating episodic migratory joint pain -- elbows, knees, knuckles -- when his worst exacerbation hit. But no doctor ever found any swelling or nodules, and acute rheumatic fever was always ruled out. So, it would appear that, although such severe joint pain could be a sign of rheumatic arthritis, it can also be a symptom of PANDAS and Sydenham's chorea, in the absence of acute rheumatic fever. Mysterious stuff! . . .

This scares me too. And I sure don't have all the answers. However, over the several-year-long course of my child's illness, what in the beginning fit a description of "classic PANDAS" has developed into something far worse: Sydenham's chorea and an array of debilitating neuropsychiatric symptoms that closely match the descriptions in the scientific literature of "encephalitis-lethargica-like syndrome" and "anti-NMDA-receptor encephalitis." I don't believe all these discrete diagnostic labels really refer to discrete conditions. Rather, I believe they refer to areas in a complex disease spectrum. The area in the spectrum which is generally referred to as "PANDAS" may include conditions which are treatable and reversible. The question in my mind is, if the disease progresses to the point where it looks like something even worse than "PANDAS," then what? . . .

I recommend that you contact pandasnetwork.org. There is a lot of helpful information on the website. And the advocate speer-heading this organization has communicated with many PANDAS parents and many PANDAS doctors and researchers, on top of having had intimate experience with the illness at home. My child was misdiagnosed when he was stricken by this illness, and became much sicker over time. It's an illness that can be tackled, but it's insidious and dangerous, and can get worse. Do all you can to nip it in the bud. I agree with the folks here who suggest that obsessive-compulsive symptoms are far more subtle and various than generally understood. Any unwanted idea, feeling, impulse that a person simply finds himself uncontrollably stuck on fits the bill. It's like a stereo needle being stuck in the groove of a vinyl record. So what might appear to be odd, stubborn, or "difficult" volitional behavior may simply be a product of a person being "stuck" against his will and without his understanding, while he struggles to cope with being stuck, and struggles to get un-stuck. GOOD LUCK! Tenacity

Thanks, SF Mom!

Here's the link! The gist of the idea presented here: Successive infections create unique multi-microbial environments in individuals' immune systems, which may lead to various types of autoimmune disease. So autoimmune diseases don't neatly follow the old one-pathogen-one-disease paradigm.

I found it myself! But I can't figure out how to "bump" it. The link is included in the following post (copied in)if anyone else wants to track it down. #1 SF Mom Advanced Member Group: Members Posts: 1,998 Joined: 31-August 09 Posted 30 October 2010 - 12:41 PM Here is a very interesting video regarding multiple co-infections or successive infection and how you get multiple symptom overlap from differing disease i.e. 'night sweats' I need to credit Elizabeth for finding video. !

Just happened across this thread tonight -- while hunting for something else. YES, YES, YES! . . . At the worst point, my son could hardly even move his neck. He was hunched over like a 110-year-old. For a while we suspected Lyme disease, because of the unexplained "buffalo hump." I realize the "hump" and the "L" are not identical in appearance, but I suspect they are "variations on a theme." When my son improved, the hunching/hump went away. When he recently relapsed, it returned. (Of course, when the symptom first struck, along with a myriad of others, all the doctors just treated him like he was faker and a weirdo.)