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.)

Some time in the last few months someone posted a link to a video of an interesting academic presentation about cumulative illnesses contributing to autoimmune disease, emphasizing that autoimmune disease is not a one-germ-one-illness phenomenon. I was wrapped up at the time, and neglected to keep track of the link. Can any of you tell me where to find it? Thanks! Tenacity

THANK YOU! Boy, did I ever need this dose of hope this morning! Can't wait to show this beautiful "poem" to my husband when he wakes up! I realize you must have posted about these things in the past, but if you have a chance, would you please tell me your thoughts/observations about the azithromycin? (My son has never tested positive for strep [although he likely had it at times, when he wasn't tested], but was "officially" diagnosed with mycoplasma pneumonia when he was five, and has high IgG antibodies to it.) We are thinking of asking our doctor whether we might switch from high-dose amoxycillin/clavulanic-acid to azithromycin. Also, how many IVIG treatments has your son had over those long six years? I'm deeply happy for you and your son! -- to the point of tears. I pray your healing continues -- and that I'll be able to write my own version of "IVIG -- How do I love thee? Let me count the ways" some day soon! Tenacity

Joan, My heart goes out to you. What grief -- and extra hardship. . . . I know we've communicated a little in the past, and I tried to poke around on the forum and piece together your story, but I guess I only have snippets. I see your son is a teenager who has been sick for a long time. Did you see some positive changes after the IVIG treatments? . . . Of course no one has all the answers, much less a crystal ball to see into the future. But if you trust the doctor, it seems to me it makes sense to go with the recommendation for plasmapheresis. Even if it's not the last treatment your son will need, it could be a step further in the right direction. Here's what I recently wrote to another PANDAS mother about my impressions of immuno-modulatory treatments: Lately, I've been thinking about IVIG and plasmapheresis and post-infectious autoimmune disease of the brain in war terms. (And, come to think of it, maybe "brain" would be a more apt adjective than "neuro-psychiatric" for this illness!) The disease is a terrible host of enemy troops -- the precise number and nature of which are unknown. . . . Plasmapheresis wipes out some of those enemy troops, but you can never manage to get them all, and sometimes more are unexpectedly sent in! . . . And IVIG is the home troops marching into battle. . . . But will there be enough of them? . . . Casualties? . . . Friendly fire? . . . Will they be lucky? . . . Will they win? . . . (My husband compares this ordeal of multiple treatments with progress followed by backsliding, to pushing a boulder up a mountain -- making it up a ways, only to slide back again, but perhaps not all the way back, then making it up a ways further, backsliding a bit again, over and over, til (hopefully!) at last you get that boulder up to the top and it stops slipping back down on you. . . .) I'm beat up, and scared to death that some permanent damage may have been done to my son's brain. However, I have seen distinct improvements following every immuno-modulatory treatment he has received to date. The improvements have not been nearly enough, and each time my son has peaked and then begun to backslide. This is psychologically agonizing to watch -- as I know you know. Still, the fact that any improvements, however limited and short-lived, occurred at all suggests to me that there is still a chance we might win the "war." One of the tiny handful of doctors I actually respect and trust once expressed the unknowns we are facing by means of analogizing the brain to a factory. There is the factory building itself and there are all the workers and the work that goes on inside the factory. We pray that the structure of the building itself has not been compromised, and that if we can only manage to straighten out whatever's wrong with the workers and their work, the factory will run better again -- run as it was meant to. . . . Tenacity

Another relevant posting from a while back: ------------------------------------------------------------------------------------ nevergiveup Posted 12 December 2009 - 11:42 PM I am very concerned about how many docs ,neuro's, psychiat, are now saying they are pandas experts. Who is your PANDAS expert? I am disgusted with the amount of neuro's and hospitals saying they know pandas, and they are just using that diagnosis but still ONLY offerring typical SSRI trmt and clonidine, tenex (Sedatives) for movement disorders. They may give one year of Pen VK at best. I want to post a warning to all parents running to your children's hospital whom say they know PANDAS. If they believe in PANDAS, (the A stands for autoimmune in pandas) then ask if they will treat the autoimmune part??? I understand that they will go conservative at first with PEN VK but ASK ASK if your child gets worse what are the next steps!!!!! Ask what further treatments they offer on relapse. If they don't say steroids, and potential IVIG for very serious cases you are NOT with a pandas expert. Haldrol, clonodine, Prozac are not drugs for autoimmune illness rather tourettes and OCD. Please know whom you are dealing with. I am putting out this notice because docs and peds are taking strep titers, prescribing short term abx and then telling parents it will go away and saying they are PANDAS experts. Of late I am seeing many mothers on this forum whom have been seeing docs whom say they are familiar with PANDAS but yet they have only referred the kids to shrinks. WHY is an autoimmune disease with a psychiatrist?? Ask and insist that you are with an EXPERT. If you need one check the forum list of docs. 7 years ago most docs didn't know the name PANDAS, now all peds have heard of it. And we are making progress, but don't be fooled by the fact that we have a long way to go. I cannot tell all of you how important it is to have a relationship with the right doc from the get go. If, and god forbid, your child relapses then you have someone (doc) by your side that knows what to do. This is not the time to find out your doc doesn't know what to do. ASK THEM, how many have they treated, what is protocol if your child doesn't improve on abx. What immune blood markers should be reviewed. (Not just ASO, like IGG, subclasses, ANA, Components, t cells, Pnemoccocal titers etc...). What studies are they familiar with and what other PANDAS experts do they know and communicate with. How many children have they treated or helped with the autoimmune part? (Not just the psych part). If we all start digging harder and requiring our docs to try harder our grandkids may not need to go through what our children are going through. ------------------------------------------------------------------------------------- The big problem I see is that the narrow parameters of controlled studies are routinely being indiscriminately and inappropriately applied to the process of differential diagnosis in the clinics. And pseudo-PANDAS-experts are cropping up everywhere. Our "local PANDAS expert," a pediatrician who has published on PANDAS, and who has rubbed elbows with PANDAS research celebrities, utterly failed to recognize my son's severe, advanced PANDAS/SC. He claimed, with an air of absolute authority, and without batting an eye, that kids with PANDAS always have documented strep throat, followed a few weeks later by high strep antibody titers and wiggling fingers. Not only is this simply untrue, even if a child's illness starts out in precisely this way, it's unlikely to look like this several years in! So -- what?! -- if you're misdiagnosed and mistreated for years and get even sicker, then you're no longer eligible to be correctly diagnosed and correctly treated? . . . Now that's what I call "sick"! Tenacity

Yes, pandas16, I'd like to know the details of your story too! We need to hear success stories around here! Re. the question of "initial onset": Although the sudden-onset of an array of acute neuro-psychiatric symptoms is considered a hallmark of PANDAS/PITAND, and we tend to equate "the start" of the disease with these dramatic explosions of symptoms, I've come to think that "the start" may be a more complex thing. My son's first huge, unmistakable symptom explosion occurred about four years ago, following a series of infectious illnesses. However, during the two years preceding this "sudden onset," there were a couple occasions when -- seemingly out of the blue, for no identifiable reason -- he suffered severe nighttime anxiety and insomnia and needed to be in his parents' bedroom all night for about 10 days or so. Then the nighttime anxiety would disappear again, and everything would return to normal. I can see now in the medical records that the first time I ever discussed one of these odd stretches of anxiety with the pediatrician, my son was six years old, and that a few months before this he had been diagnosed with mycoplasma pneumonia. I also suspect that the chronic bacterial upper respiratory infections my son suffered as baby and toddler likely played some role in the development of his auto-immune disease. Although it's important that we learn all we can about strep, I think we need to bear in mind that the diseases we're talking about are not infectious, but post-infectious. Autoimmune disease doesn't fit the old one-germ-one-illness paradigm. Even if strep is most often the original precipitant of these diseases, it is not the only possible perpetuator. Re. the plasmapheresis: Yes, the current protocol at Georgetown University Hospital is three rounds of plasmapheresis on three consecutive days -- or in as few days as can be managed safely. (They want to minimize the time the patient is hooked up to the IV in order to minimize the chances of infection. But since anticoagulant is administered during the procedure in order to prevent blood-clotting, they must monitor clotting capacity carefully, and sometimes the patient requires a day off between rounds.) I have heard that elsewhere sometimes more than three rounds of plasmapheresis are administered, and perhaps for certain conditions other than PANDAS/PITAND they administer fewer -- I don't know. I suppose, as with the question of IVIG dosing and timing, there's some guessing and experimenting involved. Re. improvement post-plasmapheresis: Reports vary. But changes can become noticeable within days or weeks, and may continue to occur over many months. However exposure to infection can cause relapse.

Hi- I read your post on conversion disorders and I was wondering if you could possibly tell me about tetraparesis? Is this something that is often associated with PANDAS or is it different? Does your son have PANDAS only? pandas16 ------------------------------------------------------------------ Hello, pandas16. When my son was first stricken by PANDAS/PITAND four years ago, following three infectious illnesses in close succession, his symptoms were "classic" -- severe, sudden-onset insomnia, hyperactivity, intrusive thoughts, separation anxiety, mood lability, "rituals," episodic incontinence, etc. Nonetheless, he received an incorrect diagnosis of bipolar disorder. Three years later he suffered his worst exacerbation to date following an ordinary flu shot, and was stricken by Sydenham's chorea. The best of the researcher/writers on these diseases and the most expert of the clinicians diagnosing and treating them understand that PANDAS/PITAND and Sydenham's chorea are not perfectly discrete illnesses; rather they constitute parts of a larger spectrum of post-infectious neuro-psychiatric autoimmune disease. Illnesses referred to in the scientific literature by other names, such as "encaphalitis-lethargica-like syndrome," and "anti-NMDA-receptor encephalitis," may also be parts of this spectrum. The doctor who finally identified what was really wrong with my son diagnosed him with "a variant from the Sydenham's-chorea/PANDAS family of illnesses." The specialist currently treating my son has diagnosed him with "PANDAS/Sydenham's-chorea." But, if only the PANDAS/PITAND had been diagnosed and treated back in the beginning, my son might never have developed the Sydenham's chorea. Tetraparesis means loss of muscle tone and strength in all four limbs. It is associated with Sydenham's chorea, as is mutism. Here's a relevant excerpt from Dale and Church's "Post-Streptococcal Neuropsychiatric disease: Sydenham's Chorea and Beyond," a chapter from Neuropsychiatric Disorders and Infection, 2005: Chorea remains the classic movement disorder occurring after streptococcal infections. . . . However, it is not unusual for multiple movement disorder phenotypes to be observed in neurological disease. . . . Apart from chorea, opther extrapyramidal movement disorders have also been described after streptococcal infection including case reports of myoclonus, dystonia, and paroxysmal dystonic choreoathetosis. Whilst other neurological signs are less common, muscular weakness and hypotonia may occur, and may in extremes present as an apparent tetraparesis (without spasticity), termed chorea paralytic or chorea mollis. Dysarthria is also not unusual in SC, and is thought to be extrapyramidal in origin. Other neurological signs would be considered atypical, such as seizures, pyramidal signs, and dementia. . . . Sadly, no, a single plasmapheresis treatment will not necessarily drive these illnesses into remission. The odds of such success are greater when the illness is caught early. I'm so glad for you -- that you have been correctly diagnosed and successfully treated! I hope some day I will be able to say the same for my son. . . . Tenacity

NO. Conversion disorder and post-infectious neuro-psychiatric auto-immune disease are not the same, even if sometimes they might look the same fleetingly and superficially. Conversion disorder emanates from psychology. Post-infectious neuro-psychiatric auto-immune disease emanates from neuro-immunology. And if "something's wrong with your brain," then "something's wrong with your body," since the brain is part of the body -- arguably the most important part of all. My son is mute. It is clearly not "conversion," not "hysteria," not "selective." The neurologist has observed and explained to us that the periaqueductal gray, a tiny little area in the brain which, among other things, mediates vocalization, has been, and is still, under the attack of autoimmune disease. This is a phenomenon Thomas Sydenham observed in the 1600's (though he understood even less than we do today just what was causing the phenomenon). It's not that there's anything wrong with my son's throat or tongue or teeth or lips, it's that the necessary signaling, from deep inside his brain, simply isn't working. Similarly, my son has suffered tetraparesis, also called "chorea mollis." No, he wasn't technically "paralyzed," the way someone who breaks his back can be paralyzed, but at times he was completely unable to move his limbs or to speak a word, and it was terrifying. Finding working reflexes in a patient who cannot move may demonstrate that his spinal cord is intact, may demonstrate that he does not have Guillain-Barre, but it does not rule out something else going wrong in the basal ganglia, periaqueductal gray, or other parts of the brain. "When all you have is a hammer, everything looks like a nail" (or like a knee, as the case may be!). Doctors are regularly approaching these illnesses as they would a badly-written multiple choice test, blindly and slavishly choosing between "a" and "b" when the real answer is neither one, it's "x"! We must not allow "conversion disorder" to be the label for all odd physical symptoms that can't immediately be diagnosed by means of easy things such as testing patients' reflexes. This is dumb and dangerous. The brain is far more complex, and the diagnostic possiblities far more various. Tenacity

Hi, Joan. My son is gravely ill with some version of this hideous post-infectious neuro-psychiatric autoimmune disease, which started at least four years ago, and may even have started as long as six years ago (following a mycoplasma pneumonia infection). Among other things, he is currently mute, cannot read, write or draw, and cannot be touched without having reactive abnormal movements. He had plasmapheresis in Georgetown in mid-October. Within the first two weeks the abnormal touch-reactive movements stopped. (One of the plasmapheresis nurses had predicted that this might be the first change we would see.) It was quite dramatic and unmistakable. By about two months post-plasmapheresis, he had become noticeably more relaxed and socially interactive, and he used a pen for the first time in over a year -- though not to write or draw exactly, just to cross out some pictures on a list. It was exciting to see these positive changes indicating healing, and, of course, we hoped and prayed the healing would continue. But just before Christmas my younger son came down with a head cold, my husband and I had some sort of low-grade virus, and a neighborhood playmate had strep throat. Shortly thereafter, although he never had any temperature or congestion as his little brother had had, my PANDAS/PITAND/SC son abruptly worsened, with nasty old neuro-psychiatric symptoms returning or ramping up again. The doctor now recommends IVIG, which we are trying to schedule. Our pre-plasmapheresis consultation was a terrible ordeal. My son has a long, incorrect psychiatric record indicating that he has bipolar disorder and conversion disorder; he's on the brink of puberty (a physically mature 12-year-old); and he's been so sick for so long that now he's long-haired, pale, can't speak or even write in order to express himself (even though his essential intelligence is still there and he understands everything going on around him very well). All these things make it harder to get past all the prejudice and suspicion. We were told the meeting would take about an hour to an hour and half. We were there for five and a half hours. We were interrogated like criminal suspects. Even had a medical student scold me for failing to bring test results for illicit drug use. When my son first fell seriously ill about four years ago he was a star of his second-grade class and not yet even eight years old. Illicit drug use?! . . . It was bad. I fought -- as politely and firmly as I could -- and somehow we prevailed. In the end, my son was given the O.K. to receive plasmapheresis. The procedure itself went very well. The sedation team, the unit nurses, and the plasmapheresis nurses were all first-rate -- professional, respectful, gentle and kind. Of course, it's no fun for anyone to be in the hospital, and harder for a child suffering an array of debilitating neuro-psychiatric symptoms than for the average person with a healthy brain. But my son was brave and cooperative. He made it through just fine, and we were proud of him. Traveling with a child sick with PANDAS/PITAND is always tough. I have no particular tips to make it easier, except to say both parents should be there (or a parent and another adult close to the child), so that they can help each other, spell each other, and so that at least one adult can stay with the child at all times. With Hope for Healing, Tenacity

Thanks to RNmom and PhillyPA for your encouragement, information, tips... We had actually scheduled an appointment with Dr. Corson -- then cancelled it, after we got the PANDAS diagnosis. We were expecting when our son went into the hospital for plasmapheresis that there would be a CSF draw to test for various things, including Lyme disease and anti-NMDA-receptor antibodies, but either the doctor decided not to do it at this juncture, or somehow the ball was dropped. When we see the doctor again in a few weeks, we will ask about this and figure out what our next step should be. In the meantime, THANKS for the moral support! Tenacity