Tenacity

Yes, I agree, call back and sort out the conference/appointment conflict. I have encountered such confusion before with appointments with Dr. Kovacevic -- not because he and his secretaries aren't attentive, more the opposite. The doctor juggles two different private offices, plus the surgical center where he administers IVIG, plus his own direct e-mail correspondence. And when he tries to help a patient "last-minute," with a scheduling change, sometimes it takes a while for everyone to get "on the same page." Don't even know you, but I'm really thrilled that you're going for this consultation! You are living proof that there must be some mysterious correlation between "smarts" and susceptibility to this illness. Tenacity

I doubt there's a one-size-fits-all answer to your question. I would trust your instincts. And I suspect that, most likely, the imaginary-monster, alligator, and spider sightings will either subside or get worse, which will speak for itself. The fact that these sightings have spiked along with other symptoms, and that it struck you enough to prompt your question on this forum suggests to me that this may be a symptom and not just ordinary kid stuff. My child was older when he "crashed" -- just shy of his 8th birthday. Of course, it's easier with an 8-year-old than it is with a toddler (Did I read that your child is 3? Perhaps I'm behind!) to make the distinction between the imaginary and the symptomatic. Hallucinations were a HUGE and unmistakable symptom of my son's illness. He began hearing voices, although he was pretty calm and composed about it at first, just found it surprising and puzzling -- then, within days, he was seeing blood streaming out of lamp fixtures, feeling hands grab his ankles, etc. Stay vigilant!... Good luck!... Tenacity

Consult with him! It will increase your knowledge and could turn out to be a stepping stone to getting more help -- from him and/or from other doctors. I so admire your intelligence and determination! Good Luck! Tenacity

QUOTE: Its the medical liability insurance which is astronomical for any doc esp peds docs and sue one sue all tendencies rampant in pediatric practice esp. Peds specialists walk a fine line since there aren't a lot of human studies done on little ones . Severely affected children in any branch of medicine usually have parents willing to try a newer approach like us with Pandas and off label use IVIG etc. Thats why there are drug trials and good studies for medications. Medications are widely used because there is some kind of paperwork backing them up as also the pharmaceutical industry which is a behemoth. Peds or any specialist rarely follow old school "take an indepth history and try to diagnose" approach. It more like poke, test and probe the child to death and then arrive at a maybe diagnosis. Thats one thing I love about Dr. K and Dr T- very old school yet very modern in approach to treatment. Psch and neuro used to be a joint discipine. Things went south when the two wee seperated for some reason. Yes, mental illness has an enormous stigma attached but such is the society we live in.. Many docs are indeed unaware but many are just plain afraid of radical perceived approaches and making costly mistakes. I agree- thank God for the exceptions! Thanks for the insights. Now I appreciate my smart and stalwart pediatrician even more. She continues to help us look for answers and seek expert help for my son, even after a long series of specialists at the local hospital she relies on essentially scoffed at our concerns, and suggested we were wasting their time. What a contrast to our former pediatrician, who, when I called her office repeatedly to say that my son had abruptly turned suicidal and was hallucinating, refused even so much as to call me back. The doozie was the time I called in, only to be told by the receptionist, "You've dialed the wrong number. This line is only for sick children." That about says it all, huh?...

I would like to know, whatever happened to the Hippocratic Oath, "to do no harm"? And whatever happened to common compassion and to fundamental scientific curiosity? How is it that so many people become doctors, without having these essential qualities? Peglem hit the nail on the head. Policy is trumping evidence. Furthermore, policy is absurdly inconsistent. Whatever the merits or demerits of so-called "evidence-based practice," there can be no denying that there exists a nearly universal double standard when it comes to the application of this "evidence-based practice." If someone is battling a deadly cancer and there's ample empirical evidence that a particular treatment could save his life, does his doctor really casually send him home to wait for some long-term studies to come out?... And where are the long-term studies on the 15 or so "off-label" psychotropic medications that were prescribed for my child over the three years he was diagnosed with bipolar disorder, before we figured out -- in spite of a very long series of arrogant, stupid, and dismissive doctors -- that he actually has a post-infectious autoimmune disease of the brain? None of the doctors ever expressed the least doubt about the validity of their bipolar diagnosis or about the advisability of piling on the drugs. Since the standards of "proof," diagnosis, and treatment, are not the same, a false psychiatric diagnosis is often what we get, instead of a true neuro-psychiatric diagnosis -- not for any valid scientific reasons, but for cultural ones. Underneath the questions of evidence and policy, what we've got is terrible ignorance and prejudice when it comes to mental illnesses. And most of the pediatric psychiatrists and neurologists we have are just as ignorant and prejudiced as the rest of our society. Thank God for the exceptions!!!...

Holy Smokes!... I was busy feeling sorry for my kid and myself, and your post interrupted!... A very good thing!... How courageous and committed you are! I wish your daughter continued improvement with all my heart. Lord knows, she and you deserve it!

The bartender story! Wonderful! Right up there with "bacterial tics" on the PEPSI security sign-in. Definitely "Twilight-Zone"! (Come to think of it, the last four years of my life have been "Twilight-Zone"!...)

Just signed off, and saw CandKRich/Karen's comment. My child is also looking more pale over recent days, and has black circles under his eyes again. Weird. Maybe this too is a flare-up of an old symptom....

Don't despair! The terrible flare-ups of old symptoms are tough to go through -- for the child and for the parents -- but we were told that they are typical -- apparently an inherent part of the healing process -- and that we should be prepared for them. In fact, as we've gone through the flare-ups, my husband has frequently remarked that he'd be more worried if nothing were happening at all, because that might mean that the treatment was not having any significant effect on our son's immune system. We are 9 1/2 weeks post-IVIG. Our first 7 weeks were full of a series of such flare-ups. Then in the eighth week we could see something good happening -- though it's still far from good enough, and we're still really, really nervous and scared... Let's hope we can all survive the "flipping back" through all the bad "pages," and get to some GOOD ones at long last! Tenacity

JAG10! How right you are! I love that word, "spectrum"! The word -- and the concept -- are important beyond any brief explanation! Of course, I don't have a tidy answer. (If I did, my kid would be healthy, I'd be rich, and there would be no such online forum as this one!) However, I feel confident saying that lots of illnesses deemed to be "bipolar disorder" or "ADHD" or "OCD," etc., etc., etc.... MAY VERY WELL BE CLUSTERS OF SYMPTOMS RESULTING FROM ORGANIC DISEASE (quite likely post-infectious autoimmune disease!) NOT YET FULLY SCIENTIFICALLY UNDERSTOOD.... My own child went for three years with a mistaken diagnosis of "bipolar disorder," before he was diagnosed with "PANDAS." Frankly, both terms may be clumsy and inadequate labels for myriad mysterious disease processes going on in our kids. When patients are used to serve diagnostic labels, instead of the other way around, what you get is politics, not science -- and not medicine -- and not healing.... In a few generations, the terms "bipolar disorder" and "PANDAS" may well be obsolete, and seem every bit as ridiculous as the label of "witch" for some unusual or brain-sick person who happened to live in Salem, MA, before the American Revolution. "Bipolar disorder" is a label for a cluster of symptoms without an identifiable organic cause. This does not mean that there IS no organic cause, it just means we don't yet know what it is (or what THEY are -- probably multiple factors!). It might even turn out someday that the conditions we now call "bipolar disorder" and "PANDAS" overlap.... What matters most is not which diagnosis our children get, but whether it's even remotely correct -- and whether it can help us help our kids! Knowledge is painful, but also powerful!...

There's a terrible shortage of child psychiatrists. But, what's worse than that is the excessive self-importance and myopia of so many of the few child psychiatrists we have! The attitude you describe in this doctor is quite familiar to me, and it's offensive, stupid, and downright dangerous. A doctor with no humility, no real scientific curiosity, no willingness to learn new things and work with other specialists, will not be able to help a child with a complicated, mysterious post-infectious autoimmune disease of the brain -- in fact, the doctor might do harm. Forgive the amateur psychoanalysis, but overconfidence on the outside can be a manifestation of underconfidence (even incompetence?) on the inside. Our duty as parents is to help our sick children any way we possibly can, not to cater to the whims of professional egos preoccupied with professional politics. When a doctor is too proprietary and claims to know it all, RUN!...

How Twilight-Zone-ish, indeed! Let's hope this is a good omen! Time for some poetic justice in the PANDAS/PITAND Wars!

Err on the side of caution. Post-infectious autoimmune disease of the brain is a vast, complex, mysterious frontier, which even the best of our contemporary experts are only beginning to explore and understand. It's not just about strep throat and tics. Beware any doctor who claims to know it all. Your child (every child!) deserves the most objective and thorough process of differential diagnosis possible. Delayed treatment, absence of treatment, or wrong treatment can have devastating consquences. By all means, keep exploring! Tenacity

Yes, my son received IVIG administered by Dr. K about 7 weeks ago. So far lots of flare-ups of old symptoms, but no breakthrough yet. We're still hoping!... I've learned a great deal from Dr. K during the handful of meetings we have had so far, but we never had any extensive discussion about the mutism. I believe he suspects it might be an OCD-type symptom, but our local neurologist -- an extremely smart specialist, for whom we also have the utmost respect -- believes that Stevie's periaqueductal gray has been injured by the autoimmune disease, not just his basal ganglia, and that some permanent neurological damage may have occurred to cause the mutism. We're really scared... Do you know anything more about how Dr. K's mute patients have fared after receiving treatment? Thanks, SF Mom! Tenacity

I so agree, Meg's Mom, with the gist of what you say. But remember, the bacteria and viruses come and go, while the anti-neuronal antibodies continue to do their dirty work. Where does that leave the child, who is psychotic because of an exacerbation of autoimmune disease of the brain? Let's face it, the average doctor says, "Titers are all normal.... There's nothing organically wrong with you... Go home.... See a therapist...." PANDAS and its relatives on the disease spectrum are not infectious, but POST-INFECTIOUS. Sadly, the concept of post-infectious disease seems to be beyond the ken of most medical professionals. Very wrong, and very dangerous....

Boy, does this sound familiar! I wish I had a quick fix -- and, of course, I don't! My advice, as a fellow parent of a kid very sick with post-infectious neuro-psychiatric autoimmune disease: stay brave; be confident that this horrific episode will pass; yes, let Dr. K know that, should there be a cancellation, you want the open slot; and, yes, ask Dr. K whether there's anything you can do (such as a short administration of steroids?) to tide you over til you can get more help. GOOD LUCK! -- AND NEVER GIVE UP! (I give myself the same trite, and nonetheless IMPORTANT, advice every day!) Tenacity

Thank you for your report! How frightening, fascinating, and revealing it is! Just think what we might do to help our sick kids, if every doctor would really listen to our reports and treat them as the goldmines of essential empirical data that they are! We are the "soldiers" in the trees and in the trenches, hour after hour, day after day. Woe to the "general" who refuses to listen!... Tenacity

Thanks for this information! YES, this is absolutely relevant to PANDAS/PITAND/SC..., and extremely important. Autoimmune disease is insidious and dangerous. Psychiatric symptoms may be followed even many years later by motor, heart, or joint symptoms -- and vice versa. This casts real doubt on the absolute diagnostic lines currently drawn between various categories of post-infectious autoimmune disease. In fact, I think it's pretty ridiculous to rely on these absolute lines, when the most expert experts in the whole world would have to admit, in all honesty, that they don't begin to have a thorough scientific understanding of these illnesses. For one thing, if it takes years for a patient to get a correct diagnosis of autoimmune disease, the original infectious agent that set the illness in motion may well be long gone. It may not be possible to say with any certainty what the original agent was. Furthermore, the autoimmune response to a single infectious agent may cause various symptoms and in various combinations and sequences in various people. Then there are the questions of combinations of infectious agents ... and genetics ... My son has had episodes of terrible and frightening heart pain, and has indicated a sensation of erratic activity in the area of his heart. He has received an EKG and an echocardiogram, both with normal results. Naturally, I'm glad they didn't find anything wrong. But who knows what might show up tomorrow, or next year, or in 5 or 10 years?... His MRI was also "normal," and yet the latest vaccination-triggered exacerbation of his disease has rendered him mute, unable to read or write even his own name, and housebound with terrible OCD and movement disorder symptoms. Do I think he's doing just fine -- or that all his problems must be psychological -- simply because he received a "normal" MRI reading? NOT ON YOUR LIFE!!! The medical community needs to understand these post-infectious autoimmune diseases better -- and the first thing they need to understand, is that they don't yet understand very much! "Real" doctors have a healthy respect for patient and family, for interdisciplinary medicine, and for the scientific UNKNOWN. Kids suffering from these illnesses need intensive, objective, cooperative medical detective work -- not a brush-off and a trip to the counselor.

My son was fine until he had the regular flu mis nasal spray. Three days after the nasal mist he started with ticks,ocd, aggressive behavior. I wish I could find other prents who have similar stories. My son went for 3 years with a mistaken diagnosis of bipolar disorder. Then in September he received an ordinary killed-virus flu shot at his annual check-up, after which he came down with a bunch of terrible neurological symptoms, and it became evident that he is actually suffering from a post-infectious neuro-psychiatric autoimmune disease. Dr. K told me he has had a number of patients who suffered PANDAS/PITAND exacerbations triggered by vaccinations -- and that it has become apparent that "killed" as well as "live" vaccines pose a threat to children with these illnesses. Tenacity

Small potatoes! But I want to let you know that, although I am honoring the no-proxy-vote rule, I decided my conscience can live with my serving as family secretary! I am casting 5 votes each day for people in our very sick son's immediate family. And the 9 out of 10 extra votes for each person, I cast for whatever list you have posted (I always check first). I'm in the process of trying to make contact with all the folks I thought would be on my proxy-vote list, to tell them we need them to vote for themselves. (Easier said than done!) Next on my to-do list is a call to PEPSI to complain about their prohibitively malfunctional website! THANK YOU, VICKIE & HELPERS for all your hard work! I sure hope we can do it this month! Tenacity

Dear Patti, Just read your most recent post -- then looked up and read your previous posts. I am so sorry for your son's and you and your family's suffering. It is a suffering deeply familiar to me. I'm pretty new to the PANDAS diagnosis myself, and my son (11 years old) has been through ###### for several years, and is extremely ill right now, so I'm in no position to offer a promise of a happy ending. I'm beat-up and frightened out of my mind, just like you. However, I am GRATEFUL, finally, to have a diagnosis of post-infectious autoimmune disease of the brain (late as it is!) -- not because I want my son to be sick (although there have been times when some prejudiced and arrogant medical professionals have acted as though that was the case!), but because I believe the diagnosis is correct; and I am GRATEFUL for the tiny handful of wonderful doctors I now have working to help my son. (They were not easy to find!) Knowledge is power. How can you wage effective battle against something, when you have no idea what it is, you have no one to help you -- or, what's worse, perhaps you have the wrong idea of what it is, and perhaps the people trying to help are actually doing the wrong thing! Harking back to the things you described in your previous posts.... It sure sounds to me as though your son is sick with an autoimmune disease. Bacteria, viruses, allergies, and vaccinations affect immune systems, not psyches. And behavioral modification programs and psychotropic drugs do not rein in autoimmune disease. Aggressively pursue expert medical PANDAS/PITAND help for your son, even if it means going out of town, and even if it means stepping on the toes of professionals who don't have the intellectual or moral wherewithal to understand and support you. Yes, although I'm terrified, I do believe there is hope. But we have to be brave and scientific -- even when (especially when!) most of the doctors around us are not. Tenacity

I'm finding it nearly impossible now to place comments or to cast votes on pages for specific causes -- though I can still vote from profile pages or list pages. (I don't think it's just my computer, because it's working fine in all other respects.) Have we asked the Pepsi Refresh Project people to do something about this? If I recruit any more voters, I'm afraid they won't be able to get their votes to register. Thanks, campaigners!

For my fellow PANDAS/PITAND parent/scholars! (Perhaps someone already posted this on the forum, but I didn't spot it.) "Anti-N-Methyl-D-Aspartate Receptor (NMDAR) Encephalitis in Children and Adolescents" Florance, et al. July 2009. http://www.ncbi.nlm.nih.gov/pmc/articles/P...ihms-173684.pdf

To the Folks Heading Up the "Refresh the PANDAS Research" Campaign: The last several times I've tried to do things on the PANDAS page of the Pepsi Refresh Project contest, the site has been prohibitively slow -- and often freezes up entirely. I'm able to cast votes from a profile page easily, but can't do a thing on the PANDAS page. I'm afraid potential new votes will be lost when people get on our page to vote -- perhaps for the first time -- and find the site non-functional. Can we ask the Pepsi people for a tune up? If removing some of the thousands of comments that have accumulated would solve the problem, it would be worth it to allow more votes to come in! Tenacity P.S. Thanks for all your hard work!

Dear Buster, I too admire your factual, forthright, pointed, lucid, accessible, and concise article. And I plan to pass it along to a number of people I hope to enlighten. However, when I do, I will be providing my own addendum. I wish you might have placed the role of strep in PANDAS in a broader context. A kid who's been sick with PANDAS for years and been misdiagnosed may turn up with a terrible PANDAS exacerbation caused by some agent other than strep, and, in fact, show no signs whatsoever of strep. I know you know this, but most people don't. Yes, we should test for strep, and get rid of it when we find it, in order to protect kids from post-infectious autoimmune disease. But as long as there are doctors who mistakenly believe that the absence of strep (or anti-strep antibodies) precludes the presence of PANDAS, some of the kids who are the very sickest -- and have been sick the longest -- will be stuck with misdiagnoses, inappropriate and sometimes harmful medical treatments, and no treatment whatsoever for the autoimmune disease that's attacking their brains. Tenacity