Tenacity

Hello, Buster! My head is spinning, thinking about your survey project and all the interesting responses you are receiving! I can only imagine how yours must be spinning! I've been away for a few days, and have not yet filled out this updated version of the survey -- though I certainly intend to, and hope it won't be too late. But thoughts about your first survey have been percolating in my mind, and it strikes me that the following aspects of PANDAS/PITAND may be worthy of explicit incorporation. 1. psychosis, suicidal thoughts/behaviors. I haven't seen this in the literature I've read so far, but I've sure seen it in my child, and I've seen many other parents' references to it on the forum. I think the literature is behind (surprise, surprise!). 2. dysphagia, dysarthria, anarthria/mutism -- in conjunction with bilateral ballism. This certainly doesn't happen to all victims of PANDAS/PITAND, but it's a key symptom cluster that was noted to occur in this type of disease as far back as Thomas Sydenham. It was when I read the following excerpt from an online medical encyclopedia, that I felt certain my son must be suffering from a neuropsychiatric autoimmune disease. Typically, hemiballism is of acute onset, but it may evolve over several days to weeks. The patient may be awakened by abrupt onset of violent flinging movements of the proximal parts of an arm or leg on 1 side of the body. The movements can cause injury of the involved limbs and exhaustion. There may be involvement of the same side of the face with facial and tongue movements. Distally, choreic or athetotic movements of the fingers may be apparent. The movements are said to disappear during sleep, but hemiballism has been noted to persist during lighter stages of sleep. The involuntary movements may improve with action, but, more frequently, they are worsened by attempts to move. Bilateral ballism is uncommon and may be associated with dysarthria, dysphagia, and rarely, mutism. My son experienced precisely this cluster of symptoms -- which is sometimes associated with various autoimmune disorders, including Sydenham's chorea. When I told the then-treating psychiatrist, he literally laughed in my face.... 3. paresis. This is important! Inability to move is one part of the movement disorder spectrum. My son has experienced it, and it can be terrifying. The treating neuro-ophthalmologist referred to one of my son's "paralyzed" spells as "locked-in syndrome." Again, this may not happen to everyone, but I have seen other parents on the forum describe their children as temporarily unable to move their legs, etc. Here's a relevant excerpt from Dale and Church's chapter in Neuropsychiatric Disorders and Infection (ed. Fatemi): ... Due to the controversy surrounding the concept of PANDAS, some would argue that chorea is the only proven post-streptococcal movement disorder. However, it is not unusual for multiple movement disorder phenotypes to be observed in neurological disease.... Indeed, different movement disorders have been described in patients with 'Sydenham's chorea' throughout the 20th century including tics, myoclonus, and tremor.... Apart from chorea, other 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.... I'm following your project with avid interest! Thanks for all the brain-power and time you are investing in this! More soon, Tenacity

Thank You!

Thanks for the report! Very exciting!...

Dear Buster, I am engaged, excited, even inspired, by this survey project! At the same time, I am reminded why I was never able to finish a multiple-choice test in school, because I was always the one sitting there, when the clock stopped, with an incomplete form, thinking, "None of these choices is right!..." A few thoughts: #5. I believe that the choices here are not comprehensive enough, and also that they are overlapping. Frankly, I wonder whether non-psychiatric phrasiology might help? Who defines what an "obsession" or a "compulsion" is? I think, "intrusive thoughts," and "behaviors you can't stop," are better than "OCD," which promptly conjures up images of people adjusting picture frames, washing their hands too much, and going back to check whether or not they locked the door too many times. I am not at all suggesting that such symptoms are insignificant or easy to deal with. I am suggesting that PANDAS/PITAND is more. Please explain to me the distinctions between "mood issues," "other anxieties," and "depression"... I now know that there were indicators of my son's illness before I was in any position to recognize them as such. E.g., the "nighttime rituals" thing. Yes, I now know there was such a "ritual." But at the time, I didn't know what a terrible omen it was. My son became terrified of his room, of the closet, of the space under the bed -- and he began draping his lower bunk bed with blankets every night. Sure, in retrospect, I know this fits in with the current diagnosis, but at the time, it looked like a creative kid building a fort! For me, choosing 1st, 2nd, 3rd symptoms seems ridiculous. It was a hideous smorgasbord,... If I had to name the three things that "punched me in the nose," and told me we were in big trouble, it would be sudden and SEVERE insomia, hyperactivity, and generalized anxiety.... #6. Same thing as with #5. Sure, the onset was like a bolt of lightening. But, in retrospect, certain things I dismissed at the time seem meaningful now. #7. Worried me most when? Episode one, he was hallucinating. Current episode, over three years later, he can't speak, read, write, or draw. This question should take into account the variety in nature of illness, course of illness, and length of illness. #9. Again, more complicated than the question suggests. What if there is a distinctive episode, but it passes, and is only associated with PANDAS/PITAND after a complete collapse, which comes later?... #13. I believe this is a dangerously incomplete and misleading list of "OCD" symptoms. Too limited, too cliched. Among other things, my child was afraid of a hair comb, saw blood coming out of light fixtures, and screamed and clutched as though his life depended on it when I tried to change his bed sheets. How about a place for these kinds of symptoms?! (Although we reported these symptoms and many more to our doctors, not a single one ever called them "OCD" til we escaped our wrong bipolar disorder diagnosis and figured out we were dealing with post-infectious neuropsychiatric autoimmune disease.) Even "hand washing" is really too limiting. What if the kid showers too much? Or wears baggies over his feet (a new symptom in our house)?... #14. Why is there no choice for "FIASCO"! -- or "undetermined, work in progress"?! #15. My child was prescribed many more drugs than you have on your list, and they were prescribed for bipolar disorder (not for tics or OCD), which we now know was the wrong diagnosis. #17. We have seen many doctors in certain categories. In our case, it was a brilliant local adult neuro-ophthalmologist (a true scientist, humanist, and brain expert!) who made the diagnosis, after dozens of other doctors, including an entire department of child neurologists at our local hospital, had treated us like worse than dirt. One special child psychiatrist helped us find this adult neuro-ophthalmologist. All the other child psychiatrists were just plain awful. I'm the one who figured out it was likely post-infectious neuropsychiatric autoimmune disease, in spite of them. They labeled me as "hysterical," "delusional," and the cause of my son's "psychogenic" symptoms. One doctor even went so far as to speculate that perhaps sexual abuse might be to blame for my son's symptoms.... #18. See #17. #19. Don't know. I'm guessing negative strep or strep antibody titers is the main reason for mistaken "rule-outs." However, I've been looking over my son's hospital records, and I found that the first psychiatrist we met -- the one who screened us in the psychiatric emergency room (and, interestingly enough, the only one who treated us naturally and respectfully) suspected PANDAS. Although at the time I asked, repeatedly, what was being tested for, what was being ruled out, what else this illness might be, not a single doctor ever said a single word to me about PANDAS. Although the anti-strep bloodwork proved to be negative, I can see from the records that the results were not even in when the attending psychiatrist dismissed the possibility of PANDAS. #20. "Onset" was more than three years past before anyone thought of PANDAS/PITAND. Three infectious illnesses preceded "onset," but who could say now just what they were?... #21. Like a number of others, our son was tested shortly following a steroid burst -- also many months after exacerbation of illness kicked in. #24. Again, no choices fit for us, because the illness was not identified until years after onset.... #25. Probably. We'll never know. When my son "fell off a cliff" following what appeared to be three different infectious illnesses in succession, and suddenly became psychotic and suicidal, I called our pediatrician repeatedly and got no response. (Yes, we've since switched!) On one occasion, after I gave a brief description of what was happening, emphasized that it was urgent, and said I needed to speak with the doctor, the receptionist said, "You've dialed the wrong number -- This line is only for sick children"...

No answer. We are in the same boat! Three and a half months post-IVIG, and what a roller-coaster! Several times I've thought, "This is it, we're done for," only to see something entirely different happen next -- and yes, sometimes a really good thing! I'm not knowledgeable enough to say just where the line is, but I think you'd really have to go for at least a few weeks of stasis or progressive deterioration before you could say with any confidence that the roller-coaster ride was over. This past week my son(11) has been stricken by terrible contamination fears -- to a degree we have never seen before. I found him one morning before dawn, sitting on the edge of his bed wearing baggies on his feet, rubber gloves on his hands, an apron, a towel mask on his face, and clutching a bottle of household cleaner in his hands. His room is horribly stuffy, but he can't bear to have the window opened, for fear of germs coming in to attack him. (Kind of ironic, given the etiology of this illness!) On the other hand, yesterday I heard a few faint syllables of laughter (when his younger brother(9) came home from camp, with a big bug bite smack in the middle of one buttock) -- after 9 months of total mutism! So I'm not giving up! Tenacity

Hello, purple66p (a.k.a. CJ)! I've had my eye out for folks like you! My son, who was suddenly stricken by a bunch of horrible symptoms just shy of his eighth birthday, was, like yours, diagnosed with bipolar disorder, and treated with Lithium. I hope to learn more about your story down the line -- and perhaps to tell you more about ours. Of course, no two cases are identical. But I do have a little advice now, for what it might be worth. Your new doctor is quite right to check the anti-strep titers and observe how they change over time. However, be aware that this, in and of itself, cannot rule PANDAS/PITAND in or out. And it's much more likely to serve as a helpful diagnostic clue when the disease process has just begun. You really need an expert to look at the whole -- and in your case, very long -- clinical story. It's possible that strep precipitated your son's illness, but that after so many years, the out-of-whack anti-neuronal antibodies have taken on a life of their own, flaring up in response to things other than strep. It's also possible that a germ other than strep started the whole autoimmune disease process in the first place. Thorough exploration and evaluation of the presence and absence of various symptoms, and the overall course of illness are currently more essential to diagnosis of this disease category than any blood tests. Lithium can be a life-saver, if what you have is really bipolar disorder. But it can do harm, if what you have is really a post-infectious neuropsychatric autoimmune disease. Not only is it of no help in restoring health to the immune/autoimmune system, but it can be toxic to neurons, it compromises kidney function, and has been known, on occasion, to trigger autoimmune disease. Some of its side effects even resemble PANDAS/PITAND symptoms and may worsen or mask them -- e.g. clumsiness, and urinary frequency. Ironically, when my son finally got his PANDAS/PITAND diagnosis and we abruptly took him off the Lithium, some of his worst psychiatric symptoms actually subsided.... Dr. S. sounds great -- but I recommend working with him to connect with one of the PANDAS/PITAND experts, so you can be confident in your process of differential diagnosis. Good Luck! Tenacity

Hello! I strongly recommend that you consult with a "real" PANDAS expert, so that you can rule PANDAS in or out with some confidence. The fact is most doctors -- even those who are essentially unprejudiced and responsible at heart -- DO NOT CURRENTLY HAVE AN ACCURATE AND UP-TO-DATE UNDERSTANDING OF PANDAS/PITAND! My child suffered for years before we were fortunate enough to be referred to a brilliant adult neurologist, who is a true brain scientist, who really looked at the big picture (as opposed to looking at a measly few minutes in an examining room), and who thereby readily arrived at a PANDAS/PITAND diagnosis. However, when we then consulted our local purported "PANDAS expert" pediatrician, we were dismissed out of hand. It wasn't until we got in to see one of the national PANDAS experts that our brilliant adult neurologist's diagnosis was heartily confirmed, and we were able to move forward with treatment. Keep looking for answers! (And remember, doctors can be wrong sometimes, just like the rest of us!) Good luck! Tenacity

Hi, Joan. I too am worried and impatient, waiting for IVIG to heal my son. He is 11, physically big and physically mature for his age, has been ill for at least three and a half years (perhaps longer) and is now about 15 weeks post-IVIG. We've seen lots of "flipping-back-pages" flare-ups, and some significant but modest improvements, but we're still in terrible trouble. Psychotropic drugs are tricky, since what helps one person may well harm another, and vice versa. I know the atypical antipsychotics are often prescribed for severe symptoms, because, for one thing, they work faster than lots of other drugs. I have no doubt that they can help certain patients in certain situations. However they were bad news for our son. He was incorrectly diagnosed with bipolar disorder just after his eighth birthday. Then came a long series of failed medication trials, which included Zyprexa, Risperdal, Seroquel, Geodon, and Abilify. All these drugs proved to be of no help to him, and in fact gave him more nasty symptoms. I'm a firm believer in the value of maternal instincts, and if you sense that a drug helped your son in the past and might help again, that counts for something. But I suggest that, when you talk with Dr. K., you ask him what he thinks about the idea. I believe none of these drugs would have any direct effect on the immunological/autoimmunological storm going on inside our sons' bodies. And if you administer a medication that has some negative effect, you'll just wind up inadvertently adding insult to injury. Here's hoping we both see some good things happen for our boys soon! Tenacity

A quick note: Several parents on this thread have expressed concerns about "live" vaccines. Be aware that "killed" vaccines can also trigger PANDAS/PITAND exacerbations. This happened to my son. Dr. K. indicated to us that he has seen a number of such cases, and that it may have something to do with immune complexes -- as opposed to regular antibodies.

Vickie -- and Company! Don't have an opinion, but I do have the same question! -- so I decided to throw my story into this mix. My sons are now 11 and 9, so most of the mandatory vaccinations are behind us. However, I will not allow either boy to receive another vaccination without careful consultation with an expert doctor or doctors whom we truly know and trust. (I plan to ask Dr. K. and Dr. L. about this, but at the moment I'm still waiting to hear back about precisely which Tetanus shot my PANDAS-stricken son should receive, since I've been advised that all vaccinations other than Tetanus are out for him, at least until adulthood). My 11-year-old was stricken in January 2007 (@ his 8th birthday) by what I now know should have been readily recognized as PANDAS, but was not. He suffered a series of infectious illnesses in the fall or 2006 (which were nasty, but came and went, so no blood tests were done) -- then come January, it was like a lightning bolt from @#$%&*! (hallucinations, suicidal ideation, etc.). He was promptly misdiagnosed with early-onset bipolar disorder, struggled for three years (yes, a saw-tooth pattern -- always attributed to bipolar disorder), and finally seemed to be getting better. Then, at his well-child annual check-up in September 2009, he received a flu vaccination, and once again all @#$%&*! broke loose -- even worse this time. He has been incapacitated for nearly a year now. Movement disorders, can't speak, read, write, draw.... It took months and months to find a doctor to listen to us, to look at the overall health history, and to "connect the dots." Ironically, the bipolar diagnosis, which -- considered in context -- should have served as a neurological and immunological clue -- was used by a long series of awful doctors as an excuse to dismiss every word that came out of our mouths, including our suggestions that the flu shot had done something to our child. Why on earth would you listen to anything a family full of crazy, hysterical people has to say?... PANDAS and the immune system and neuroscience in general are all so complex and so incompletely understood, even by the experts. Nevertheless, I figure the "real" experts must be in a better position to answer questions such as this one, so I plan to rely on them to help me make good decision(s). Tenacity

Agreed, but getting anyone in the institution of medicine to "eat crow" is tricky business. Which explains, in part, why the name change seems so important to the institution. The docs who never believed need to save face by not having to now diagnose something they had denied for so long. And the mental health professionals are really going to struggle as they have denied any microbiological source to mental illness symptoms for so long. How many of their former and current patients have been misdiagnosed/ineffectively medicated? I know they were doing the best they could with the information they had at the time but it is time to see the new information for what it is and help children and families rather than wallow in their own self-righteous pride. Mary from Michigan Hurray for Mary!!! That's hitting the nail on the head!!!

I had the same problem, finally gave up, then tried again later, and it worked. Some kind of glitch?...

Do you know how/where this "White Paper" will be published?

Voting!...

Don't know yet! We're still fumbling our way through the tunnel!... (Some good things are happening, but they're still nowhere near good enough.... I too am terrified, but I do have hope!... ) So glad you found this forum. I am relatively new to it myself, since we only got the PANDAS diagnosis this past winter, although my son had been seriously sick for over three years. But I've learned a lot and taken a lot of comfort from the things I've read and the exchanges I've had. Bear in mind that no one -- not even the most knowledgeable and experienced of the specialists -- fully understands this disease spectrum, the complicated underlying pathogeneses, and the complicated immunomodulatory treatments. So no one can tell you with absolute certainty exactly what the right course is or predict exactly what the outcome will be. But M.K. is a special doctor, indeed! Smart, kind and respectful, experienced, dedicated, no-nonsense.... Consulting with him is a big step in the right direction! The true clinical PANDAS specialists are few and far between (you can find their names on this forum), and yes, their schedules are full, and there may be a wait to see them or to receive treatments. (If the wait is terribly long, you might express interest in coming sooner, if there should be a cancellation.) Good Luck! Looking forward to hearing more from you! Tenacity

Thank you for this inspiring update! It gives me hope that maybe someday my child too can make it out of the pit.... Tenacity

Your woes are familiar to me. As if the illness itself weren't awful enough, we are forced to deal with a barrage of medical and educational system professionals pushing us around and treating us like pesky flies -- or worse -- like criminal suspects. It's absurd, unjust, destructive, counterproductive.... But you must not throw in the towel! One thing to bear in mind: Sound reason and piles of evidence may simply "roll off" the bureaucrats like water rolls off the back of a duck. Unfortunately, my experience has been that being honest and being right are often useless in dealing with these people and with these bureaucratic systems. You need to "twist their arms" with the kind of "muscle" recognized within their backward culture -- e.g., doctors' oral and written testimony, attorneys' oral and written assertions.... No matter how wounded, frightened, or justifiably enraged you might be, stay (on the outside, at least!) as calm, cool, collected, confident, determined, and ever-polite as you possibly can. The message is, not only are you right, but you're going to do whatever it takes to get them to do what's right, and you're not giving up until they do.... At our first Committee on Special Education meeting, my husband and I naively went in on our own with three medical letters and a prepared presentation, and the committee smiled, condescended, and ignored all of it -- didn't even include the things we said in the minutes to the meeting. It was as if we were invisible. When we went back to the CSE to try again, we brought a doctor, an education attorney, and an old tape recorder with us. (When the CSE chairperson saw the tape recorder, his oily veneer disappeared for a moment, and he really looked as though he'd like to strangle me!) We ultimately got the things we needed out of this meeting. But I truly believe it was not because the Committee finally "saw the light" (although they put on a good act) -- but because we had the doctor, the attorney, and the tape recorder, and, I suspect, someone "higher-up" had instructed the chair to be careful and not to leave the Committee vulnerable to a law suit. Stay strong! Good Luck! Tenacity

Hello! Naturally, there's no "one-size-fits-all," but, in case it might be of any help: We are 3 months post-IVIG with Dr. K. We stayed at La Quinta (upon the helpful advice of another PANDAS mom on the forum). No frills, but comfortable, friendly, inexpensive, lobby breakfast, and very close to the Oakbrook Surgical Center where IVIG is administered. (There are lots of other choices, which you can explore through the AAA website. If you do pick La Quinta, be aware that it is set back behind other commercial buildings, so you have to watch the addresses and look out for a small roadside sign.) Our son did suffer headache and vomiting the morning after he completed his two-day IVIG. Per Dr. K's advance instructions, we phoned him to report what was happening, then administered a steroid prescription the doctor had asked us to fill and have on hand. We weren't sure we would be able to fly home that day, but in the end we pulled it off. The steroids helped, my son was brave, and we carried bags with us in case there might be more vomiting (although, thankfully, there wasn't). You could wait an extra day to fly out -- but what if the second day-after is worse than the first? Follow your best instincts, be prepared to make adjustments if you have to, and GOOD LUCK!... Tenacity

Interesting! In the fall of 2006, my son suffered what appeared to be a series of three different infectious illnesses: (1) upper respiratory, (2) joints/muscles/"can't-walk," (3) nausea, "can't eat." Then January 1, 2007 all @*! broke loose. The joints/muscles/"can't walk" bug was nasty, but we just assumed it was a passing weird germ (like one my husband and I both caught years ago, that prevented us from lifting our arms for a few days). Hm....

Interesting thread! I'm a beginning student of brain science, so I sure don't have all the answers. However, I have a couple things to add to this discussion: (1) Yes, other parts of the brain besides the basal ganglia can be affected by post-infectious autoimmune disease. It is known that injury to the periaqueductal gray plays a role in encephalitis lethargica -- another subcategory of post-streptococcal disease. The neurologist who recognized my son was suffering from a variant of PANDAS based his diagnosis, in part, on symptoms he attributed to injury to the periaqueductal gray. (2) There's zero doubt in my mind that many kids with PANDAS/PITAND spectrum illnesses are misdiagnosed, mistreated, languishing in institutions that won't/can't really help them (God only knows, how many!). My son was one of them for a while. The psycho-analytical/criminal-justice bias in the way our entire society views mental illness is so HUGE. From the moment my child fell ill, I was treated more like a suspect than like a source of information -- by school personel, by doctors.... What happened to my child was so bad, that when I reported it everyone assumed it to be more likely that either I was making it all up or I had somehow caused the problems myself. Yet, it was obvious to me from the beginning that some terrible neurological accident had occurred. It took me three years to find a doctor who really listened to me, believed me, and understood this. Then we got the long-overdue correct diagnosis.... Now the fight to climb out of the pit.... Tenacity

Thank you, Buster, Meg's Mom, and LLM, for posting about your experiences attending the PANDAS talks at the IOCDF conference. I so wished I could be there, but my son is too ill right now -- on a post-IVIG roller-coaster ride -- and I couldn't leave him. It was wonderful to get a few glimpses of what transpired. And, boy, would I ever love to know what's happening at the NIMH!... I pray it's something good and meaningful!... High time!... Tenacity

Thanks, Vickie. I will continue to vote this month -- for the folks who helped us win our research grant. Tenacity

Brandy, I wouldn't worry too much about precisely what to expect. Keep an open mind. And watch, compare, keep a record... I'm no expert, but from what I've gleaned so far from my own experience and from others' is that many factors (not all of them fully understood!), including age, size, type and severity of illness, how long the child has had the illness, etc. may play a role in how kids respond to the steroid burst. I'm new enough to the forum, so that I'm not yet familiar with your story and the stories of the other parents who have responded to your question so far. I'm guessing my child might be older. My child is 11, and was very sick, but not correctly diagnosed, for a long time, then had a terrible reaction to a flu shot, developed violent movement disorders, lost the ability to read/write/draw, and became mute. I've read many stories of fast, dramatic transformations following steroid administration, and I believe them and am inspired by them -- but it appears, in most instances, these are patients younger than my son, who are fortunate enough to get a correct diagnosis earlier on in the course of their illnesses. Nevertheless, my son did have a "positive" response to his steroid burst, even though it was really just enough to whet our appetites for more, and not a complete "conversion." I do not offer my son's steroid experience as "typical," by any means, but as one example in the spectrum of possible meaningful responses. In a nutshell, @ three weeks post-steroid-burst, he was nasty-acting, felt hideous, nauseous, could not eat, and could not even get out of bed. Then this passed, and he began to look and act more healthy than he had in months, though he remained mute, and at about 5-6 weeks post-steroid he drew a couple crude stick figures, after 5 months of no drawing at all (and he loves drawing, in fact he was unusually good at it before he fell ill). Then the positive effects disappeared. Each child is unique. But changes -- of any kind -- can be important diagnostic clues. (Wish all the doctors understood this!...) Tenacity

THANK YOU, Vickie, Kelly -- and other fellow PANDAS parents! I think this is bigger than itself -- like the proverbial pebble in the water, that sends out ripples to far shores.... I'm excited that Cunningham's brain research is going to receive this injection of funds to keep it going. And I'm proud that it's happening because of us.... Tenacity

Expect a supremely intelligent, understanding, and experienced PANDAS expert -- with a strong Slavic accent! Good Luck! Tenacity