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Here is a link with more information! http://www.ocfoundation.org/affiliates/massachusetts/lecture_series.aspx I think it is free? Please attend if you live in the area. I think Dr. Jenike will be there. We need our voices to be heard. Spread the word. It would be awesome if a lot of PANDAS parents showed up. 6-7pm Sponsored by the Massachusetts Affiliate of the International OCD Foundation Located at the Lazare Auditorium (S1-607) at UMass Medical Center 55 Lake Avenue North, Worcester, MA 01655

I've even put supps in an almond butter and jelly sandwhich (egg salad sandwhich too)! Probiotics, a bit of C (that has more of a taste), vitamin D drops...

this is what Beth posted on FB: NPR - EXCELLENT NEWS & NEED YOUR HELP I spent an hour on the phone today with an NPR reporter who is researching the possibility of a national documentary about PANDAS/PANS. This story will reach MILLIONS of listeners. He is fascinated by the topic and has already spoken with Dr. Susan Swedo to better understand the disorder. What he is interested in from you are your personal stories of how poorly so many PANDAS/PANS parents have been treated by doctors, and in particular how hospitals collaborate with state departments of children’s services to strip parents of their rights. Will you please contact him directly? So many of you have asked me to share your stories and I gave him the broad strokes. But I want him to hear directly from you. He does NOT need to use your name or your child’s name in the documentary. I’m asking you for two things: #1 If you have a story, please reach out to him; and #2 Whether you do or not, could you please dash off a note to let him know how important this story is? The only thing that will continue to turn this around is the press. He has a meeting scheduled to discuss news ideas tomorrow morning. If he could possibly walk in tomorrow to a few hundred emails, I think that would be excellent. Please circulate this widely. The reporter is Pat Walters pwalters@wnyc.org His phone is (646) 829-4585

here's a link to the archived shows: http://www.blogtalkradio.com/radiopandas

I'll copy here, in case the link isn't available later: PARENTS AND DOCTORS REACT As a pediatrician and a mom, I just want to thank Neil Swidey for his article on PANS/PANDAS (“The Children Who Change Overnight,” October 28). Too often medical professionals are unwilling to acknowledge what we do not know or what does not easily fit into a diagnosis that we have been taught. I have many PANDAS patients in my practice in the Philadelphia suburbs, and I admit to each one of them that I am learning right along with them, being open-minded, as pediatricians need to be. Thank you to Swidey for continuing to spread the word. Dr. Heather Orman-Lubell / Yardley, Pennsylvania I am a physician whose oldest son was diagnosed with PANDAS in January 2009. His case was severe. Thankfully, as a physician, when I would walk in and tell his story, my colleagues would listen. He is now 11 and thriving. Two years ago my second son started showing symptoms and has required both antibiotics and IVIG (intravenous immunoglobulin) to heal. My daughter, age 6, woke up one Saturday six weeks ago with severe anxiety, a tic, and OCD. I took her to the pediatrician, and sure enough she was strep positive. Three for three now. I can’t thank Swidey enough for his interest and thoroughness. This discussion needs to be brought to the attention of all parents and pediatricians. I am convinced, though, that PANDAS is not rare, just rarely diagnosed. Dr. Claire Bowles / Charlotte, North Carolina My daughter was an athletic, smart, well-liked, beautiful 10-year-old who turned overnight. She could not sit down even at school or in the car, would not eat, and was obsessed with exercising. We were told by Children’s Medical Center in Dallas that she was an anorexic and needed inpatient treatment. They would not even entertain any idea that it could be caused by an infection. We did not send her to their inpatient program but spent a year with counselors, doctors, antidepressants. We even took her to a one-week out-of-state eating disorders program. We had heard of PANDAS from her nutritionist and felt sure she had it because she had high blood strep levels, but needed the counseling to help until she was better. Twelve months later, for no apparent reason, our daughter came back. She returned to her friends, her sports, and her life, eating normally, like an 11-year-old should. I took her in for blood work, and her strep levels had returned to normal. She is now a well-adjusted 14-year-old. She will not talk about that year, but I will never forget it. I wish I could do more to get these doctors to believe that this is a real condition. Karen Nichols / Longview, Texas As the mom of a PANDAS kid going on four years, I know what a difficult battle it is. Every doctor who agrees to see you and with the diagnosis is a godsend. Getting this information out to a broader public is essential to prevent misdiagnosis and incorrect treatment, but simply having the public more aware helps all of us living with this health challenge. Deborah C. Penney / Memphis I am a PANDAS mom in Sweden, and Swidey’s article is so well written and informative that I am spreading it to everyone I know. Being a professional in the autism field, I can also say that this PANDAS battleground has many traits in common with the situation regarding autism 30 years ago. It is just that the world wasn’t so connected at that time, so the battles weren’t going on in the open. The professionals were thinking that autism was caused by bad parenting, and for years and years mental health professionals could not see outside this paradigm. At least not until parents pushed and pushed for change, and got some professionals on their side, did we eventually get a new paradigm. That is where PANDAS stands today. With time, more open-minded scientists are moving toward the new paradigm, while others continue to cling to the old. It is a difficult situation for scientists to stand between paradigms. But eventually a scientific revolution takes place and the paradigm shifts. We have seen this happen over and over in science. What is really helpful is that articles such as Swidey’s can make the paradigm shift sooner rather than later. Gunilla Gerland / Stockholm Thank you for your thoughtful article on PANDAS. My 9-year-old son is now doing well as a patient of Dr. Denis Bouboulis after a harrowing ordeal of sudden onset, confused doctors, misdiagnoses, treatments being stopped because they worked (incredible as that may seem), and a year of missed school. We were fortunate enough to find Dr. Bouboulis, and the antibiotic treatment has my son back to about 75-80 percent. IVIG may be next for him; we’ll see at our next visit. I hope that balanced reporting like Swidey’s will help sensible doctors to consider the patient first, not the “controversy’’ that seems too often to get in the way of helping our kids when they need it most. John Egan / Warwick, Rhode Island

Hi, I haven't read all the responses, but if he isn't currently on antibiotics, get a throat culture on your son. Also get throat cultures on family members to check for carriers. Where do you live? maybe somebody can rec a PANDAS doc. He probably needs longer term antibiotics (plus maybe other things, immune workup, IVIG, etc.) if he has ADHD and defiance (which can be a symptom of OCD in kids) when he is off them.

My dd started at 250mg/day (but she was only 43 pounds at the time). She has been on that since 2008. Now she is 12 years old and 99 pounds. She is still on 250mg/day, but we have a rx to up it to 500mg/day if needed. I think 500mg/day would be a better dose for a person who is 130 pounds...then go down to 250mg/day in 2-4 months if things are doing well (if you hit a plateau). But, be ready to increase back to 500mg if there are problems on 250mg.

She had a blood test about 10 days ago. The strep was negative. Never had a throat culture though. The pediatrician never examined her to this date. He just dismissed the tic as a common thing kids do and coupled with the anxiety said to visit a psychiatrist. You need throat cultures...do everyone in the household (including your pandas child). Blood tests (eg aso, anti-dnse b ) only need to be done if throat cultures are neg (or to get a baseline for interests sake). Blood work does not replace the need for a culture (which would tell you if there is a current/active colonization). Also, I would rec. getting a repeat of labs (aso, anti-dnase b ) in 6-8 weeks to see if titers are rising (although it might be a little late). Unfortunately, what you really want is (if you are going to rely on strep titers) is a a baseline blood draw (at onset of symptoms) and then again 6-8 weeks later (to see if there is a rise). A single titer 2 mo. after onset of symptoms doesn't really tell you much. Also, even if your doc was on the ball (and got the 2 titers at the right time) a good percentage of kids with cultureable strep (and PANDAS) never get a titer rise (or if it rises, it still might now rise "enough" to get above the upper limit of normal). Cultures aren't perfect either (could have a bad swab/miss the tonsils, or strep could be in the sinuses or elsewhere). But, really your doc should have done a strep culture when your kid had fevers, although I would still recommend doing them now (to make sure there isn't obvious cultureable strep). Some parents will lie (if your ped refuses to culture) and go to urgent care, say the kid complained of a sore throat, or other symptoms and friends recently had strep...

if anyone has a link, that would be greatly appreciated!

Ughh...did anybody read the comments (only 4 online). Not talking about Malia O.'s...the others. Here's the link http://www.boston.com/lifestyle/health/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/F5NHpuY8KYELolBOxQil4O/story.html?comments=all#readerComm stupid person #1 Lessismore 10/28/2012 09:51 AM This article is too funny. People reading this a century from now will get a chuckle from it. Kind of like us reading about phrenology. and stupid person #2 LitChic 10/28/2012 04:11 PM That's right parents, keep dosing your kids with various antibiotics of varying strenghts instead of admitting all of their behavioral issues point to a BEHAVIORAL diagnosis. That way, you can sleep better at night, instead of admitting that your precious child may have deep emotional issues that need to be addressed. Hopefully, your child will not develop an ACTUAL confirmed infection and require antibiotics, as they will likely be antibiotic resistant by that time. QUACK QUACK QUACK

Here's the article if anybody is having trouble with the link: THE MEDICAL ISSUE: MYSTERIES WITHIN The PANDAS puzzle: Can a common infection cause OCD in kids? A medical mystery that has families in crisis. By Neil Swidey | OCTOBER 28, 2012 ANDY MARTINIMAGINE THAT ONE NIGHT you put your bright, athletic, well-adjusted 8-year-old son to bed, a kid who loves playing baseball and cracking jokes and scarfing down chocolate chip cookies. The next morning, he wakes up as someone entirely different, and in subsequent days turns into someone unrecognizable. He’s manic, spending hours doing sit-ups or running laps on the driveway — unwilling to sit down even for a minute. He alternates between tears of soul-crushing sadness and tantrums of rage directed at you and your spouse. He’s obsessed with the unhealthiness of food, refusing to eat or drink much of anything. More than anything, though, all the comforting touchstones of his life — home, school, even sleep — have suddenly been transformed into dangers. He seems trapped in a horror movie, his fear unmistakable in the way his pupils have overtaken the irises of both his eyes. As this bizarre behavior continues, you find yourself staring at your formerly normal, healthy son and you can’t help but wonder, Where did my boy go? You ask yourself: Is this what children of Alzheimer’s patients mean when they talk about looking at a loved one who’s no longer there? You take your son to your pediatrician, a sympathetic and smart woman who is nonetheless flummoxed. Because some of your son’s symptoms appear to be compulsions, she refers you to a psychologist. Actually, because the need for pediatric mental health treatment dwarfs the supply of mental health professionals, your pediatrician turns to a state referral service called MCPAP, or Massachusetts Child Psychiatry Access Project. By phone, the consulting psychiatrist instructs your pediatrician to treat your son for obsessive-compulsive disorder, prescribing a Prozac-like antidepressant and recommending that you find a therapist who can guide him through cognitive behavioral therapy to help him “unlearn’’ his new behaviors. The diagnosis doesn’t sound right to you. Compulsive behavior seems to describe just one strain of his symptoms. And the fact that he literally changed overnight doesn’t compute with what you’ve read about the typical OCD patient, whose behavior changes gradually. Then again, you’re not the expert, and you desperately want your son — your family life — back. So you defer to the professionals. One day, you find yourself rushing your son to the emergency room. After weeks of unsuccessfully battling with him to eat and drink, he is dehydrated and dangerously underweight. The attending physician comes to talk with you. Peering over his shoulder, you are startled to see the words on your son’s chart: anorexia nervosa. The doctor recommends a book on adolescent anorexia. “Adolescent?” you ask incredulously. “But my son just celebrated his ninth birthday.” Yes, the doctor agrees. But you won’t find any books on anorexia for elementary school kids. When little about your son’s condition improves over the next couple of months, the doctors continue to bump up the dosage of the antidepressant. Because you’ve read enough to know that there are serious questions about the long-term effects of these drugs on the rapidly developing brain of a child, this course of treatment deeply troubles you, especially because it isn’t working. And the cognitive behavioral therapy seems to be equally ineffectual. As you wait for your son outside the therapist’s office during one appointment, you flip through a copy of Parents magazine and stumble across an article about an obscure condition called Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, or PANDAS. It feels as though it were written about your son. There’s a chart listing seven symptoms of PANDAS, and in your head you can check off every one of them. You ask the therapist about the disorder. Despite the impressive degrees hanging on her wall, she admits she’s never heard of it. The hypothesis behind PANDAS, you learn, is that it is an autoimmune disorder caused when the antibodies that form to fight a common strep throat infection instead begin to attack the brain. The first step in treatment is to do a throat culture and specific type of blood test. If the results come back positive, the patient’s treatment begins with high doses of antibiotics. Meanwhile, when you do more Googling, you find a scary warning about some PANDAS patients having bad reactions to an anti-anxiety medication called Ativan, which just so happens to be something the consulting psychiatrist also recommended for your son. In fury and desperation, you call the office of Dr. Denis Bouboulis, an immunologist in Darien, Connecticut, who has developed a reputation within the PANDAS community for providing aggressive, effective treatment. You beg for an appointment. In the waiting room, you find patients from all over the country — even some from overseas. Sitting in another room, after a thorough examination, Bouboulis tells you he’s sure your boy has a “raging” case of the disorder. Then he tells you this: “You will get your son back.” It’s the first time you have felt hope since the nightmare began. You want to spring out of your chair and hug the man for his determination to rescue you and your boy from this frightening wilderness. I know this case intimately because that boy is my nephew. *** ONE OF THE SCARIEST PARTS about PANDAS is also what makes the diagnosis so controversial. Its trigger is the common strep infection, which is as reliable a part of the grade school experience as recess. Dr. Robert Fuhlbrigge, a pediatric rheumatologist at Boston Children’s Hospital and associate professor at Harvard Medical School, puts it this way: “Virtually every child of school age gets strep every year.” If that seems impossible, consider that he’s including the many kids whose reaction to strep is mild enough that it is mistaken for the common cold. And he’s including the estimated 12 percent of schoolchildren who are carriers, meaning they aren’t bothered by streptococcal bacteria, yet can spread it to susceptible kids when they sneeze or cough. Only those children who produce a positive throat culture are actually treated for strep. And the penicillin they get isn’t even for the fever and sore throat, which will usually go away in a few days. The antibiotic, Fuhlbrigge says, is primarily to guard against the very small risk that the strep infection will develop into rheumatic fever, and then rheumatic heart disease. Though relatively uncommon in this country, rheumatic heart disease is rampant in the developing world. What causes it? Basically, the immune system gets confused. In trying to fight the strep bacteria, it mistakes a protein on the surface of heart valves for a similar looking protein on the surface of a strain of strep. Then it begins attacking the heart valves. The idea behind PANDAS is that it works like rheumatic fever, except that rather than attacking the heart, the immune system goes after the brain. In the early 1990s, researchers at the National Institutes of Mental Health (NIMH) began studying whether infections could be behind acute-onset OCD in children. They focused on strep because it was the same bacteria behind an established neurological disorder called Syndenham chorea, where a portion of those who develop rheumatic fever begin to make involuntary, jerky movements. In 1998, a NIMH team led by Dr. Susan Swedo published clinical descriptions of 50 children whose sudden OCD and tic symptoms had been preceded by a strep infection. Many researchers, including rheumatologists like Fuhlbrigge, saw promise in the hypothesis, because it followed the logic of rheumatic fever. Others, particularly neurologists, were dubious. Strep is so common that you’ll find it any classroom. Why not just argue that recess causes OCD? The sniping in the medical field persisted for more than a decade, with subsequent studies unable to produce clear answers. Even Fuhlbrigge began to wonder whether Swedo had it right — the scientific evidence that strep causes OCD-like symptoms just wasn’t there. Childhood OCD, with its gradual onset, is fairly common — an estimated 1 percent to 3 percent of children have it. Fuhlbrigge and others came to suspect that PANDAS cases may simply be OCD children on the extreme end of the spectrum who respond particularly poorly to certain stressors, such as the stress caused by an infection. Caught in the crossfire, meanwhile, were the families whose lives had been upended by the disorder, whatever its cause. In 2010, like some Cold War summit, the two sides convened at the National Institutes of Health. Swedo, by then chief of the NIMH’s pediatrics and developmental neuroscience branch, offered a major concession. She agreed to drop her exclusive focus on strep and accept that any number of infections — strep, flu, Lyme disease, or mycoplasma pneumonia (“walking pneumonia”) — could trigger the autoimmune response that, in turn, triggered the OCD. The disorder was given a new, more encompassing handle, Pediatric Acute-onset Neuropsychiatric Syndrome, or PANS, with the sudden onset of symptoms being the distinguishing characteristic. (Mycoplasma, rather than strep, is believed to have been the trigger for my nephew’s PANS, based on the high levels of those antibodies in his blood.) Swedo’s concessions were not enough. A couple of the neurologists at the conference insisted that PANDAS was a failed hypothesis and that the strep idea needed to be scrapped. Like Reagan and Gorbachev in Iceland, the two sides left this summit with long faces and pointed fingers. One neurologist, Dr. Harvey Singer from Johns Hopkins, agreed to work with Swedo and other researchers on a PANS paper. But after Singer’s name appeared as the lead author with other neurologists on an anti-PANDAS paper published in the influential Journal of Pediatrics,Swedo dropped him from hers. She alleges that the neurologists downplayed the needs of parents and children in crisis, all so they can protect their standing as the only experts on the brain. She put aside her research for a while  — it was too hard to “fight the naysayers,” she says — but the desperation of parents “pulled me back in.” Singer, meanwhile, faults Swedo for suggesting that there is an easy answer to explain and treat OCD and tics when, he argues, there is no good science to show that strep-triggered autoimmune PANDAS even exists. Dr. Michele Casoli-Reardon is a child psychiatrist at North Shore Medical Center and an on-call specialist for MCPAP, the state’s referral service. With more than a decade of experience in treating PANDAS patients, she has tried to educate her fellow on-call psychiatrists as well as the front-line pediatricians. In her experience, some doctors steer clear of the diagnosis because of the contradictory medical literature. But many more, she argues, simply know nothing about it. For Casoli-Reardon, PANDAS became even less of an abstraction when one of her sons developed it several years ago. She can identify with parents who find themselves completely unhinged by it. As for the critics from neurology, she says, “If you’ve ever had a child with PANDAS, you would never, ever say that it doesn’t exist.” *** THAT DISTINCTION may turn out to explain a lot about the battle. Dr. James Leckman, a professor of child psychiatry at Yale and specialist in Tourette’s syndrome, was the lead author on what is perhaps the most persuasive study challenging the PANDAS hypothesis. That long-term study, published in 2011, found no compelling evidence linking the exacerbation of tic and OCD symptoms to new strep infections. JAMES JELIN Beth Maloney, an attorney in Maine, wrote a book about her son’s odyssey with PANDAS.Yet Leckman tells me that in late 2008, well after all the patients had been enrolled in the study, he came to an astonishing realization: He and his coauthors had been studying the wrong children. Most of the kids in the study resembled those he regularly sees in his clinic — children with “garden-variety” Tourette’s and OCD. But after working with more physicians treating PANDAS patients, he had come to see firsthand that there was a distinct group of kids who literally had changed overnight, with dramatic onslaughts of OCD and other symptoms. And these “true” PANDAS/PANS cases weren’t represented in his study in any meaningful way. Leckman says he lobbied his coauthors, who included Harvey Singer, to admit to this failing in their paper. But they refused, insisting they had followed the published PANDAS criteria in selecting their subjects. Leckman had to concede they were right — the children all met the criteria Swedo’s team had established. It’s just that he now believed those criteria were far too broad. So Leckman’s name was listed first on an influential paper that he felt was technically accurate but missed the larger point. Nonetheless, Leckman had already become a changed man. Shortly after his epiphany, he says, “I picked up the phone and called Sue Swedo and told her that I had become a convert.” Leckman says he understands the resistance on the part of the neurologists. “True” overnight-onset OCD patients are rare and are far more likely to be seen by pediatricians, ER doctors, and psychiatrists than neurologists. Yet the neurologists are likely to have to deal with the fallout from PANDAS, seeing parents of kids with well-established conventional OCD who, after surfing the Web, appear in their office demanding antibiotics. This intensifying standoff between traditional medicine and desperate parents has created what Harvard’s Fuhlbrigge calls “a public health crisis.” More than a year ago, Fuhlbrigge stopped accepting referrals of PANDAS patients to the rheumatology clinic at Boston Children’s Hospital. Given the lack of evidence for autoimmune disease in the patients he had seen and the confusion in the scientific literature, he felt he couldn’t do much for them and he needed to return his focus to rheumatology. Yet instead of adopting the nuanced approach he had taken earlier, others at Children’s Hospital have apparently pushed a much harder line against PANDAS. Things came to a head this summer when parents of an 11-year-old girl who was being treated for PANS took her to Children’s because she was no longer eating. Maine lawyer and PANDAS activist Beth Maloney got involved in the case at the request of the parents. She alleges that specialists at Children’s insisted to the parents that PANDAS doesn’t exist and discontinued her antibiotics, arguing that the girl’s problems were entirely psychiatric. As relations worsened, she says, the hospital stationed security guards outside the girl’s room, presumably to prevent the parents from interfering with their daughter’s care. The 11-year-old girl was eventually released, but, Maloney says, the pattern was repeated in early October. This time, the lawyer received a panicked call from a father who had learned that child protective services was going to court seeking temporary custody of his 16-year-old daughter. The girl had arrived at Children’s with a PANS diagnosis, which the attorney claims the Children’s doctors rejected. The next day, Maloney found herself standing before a Suffolk County judge. “What we have is an argument within the medical community about whether infection can cause behavioral disorders and mental health issues,” Maloney recalls saying. “And Boston Children’s Hospital is going to work that out on the backs of parents in your courtroom.” MAGGIE GORDON/DARIEN NEWS, HEARTS CT MEDIA GROUP Connecticut’s Dr. Denis Bouboulis has developed a reputation for aggressively and effectively treating children with PANDAS.The judge, she says, granted the state temporary custody, although the parents have continued to have access to their daughter. Maloney, who wrote a book about her own son’s odyssey with PANDAS, acknowledges that this most recent patient does not fit the standard diagnostic requirement that symptoms show up before puberty. But she alleges the case reflects a wider hostility to the disorder at Children’s. In a statement, the hospital rejected that allegation and similar complaints from parents about Children’s that have been lighting up PANS Internet message boards. “Boston Children’s treats hundreds of children a year displaying tics or obsessive or compulsive behaviors and other neuropsychiatric symptoms and always considers PANDAS/PANS as a potential diagnosis and provides care accordingly,” the statement read. “Among those patients, Boston Children’s has diagnosed and/or treated dozens of patients in the past year with PANS/PANDAS.” Even for those kids whose doctors accept PANS and who respond well to antibiotic treatment, that’s often not enough. While antibiotics can kill off a live infection and help prevent future ones, many patients have trouble getting back to base line. A more escalated form of treatment is called intravenous immunoglobulin, or IVIG, which is a blood product made up of filtered antibodies from a mix of more than a thousand adult blood donors. The idea behind giving it to PANS kids is that it can help “reset” the child’s immune system so that it stops attacking phantom threats in the brain. IVIG has shown some promising results in PANS patients, but there has been no rigorous trial. It also comes with side effects such as nausea and headaches and a hefty price tag — about $10,000 a course — which many insurers refuse to pay. Yale’s Leckman is running arandomized trial of IVIG in conjunction with the NIMH. To avoid repeating his earlier mistake, Leckman is being exceedingly careful to enroll only “true” PANS patients. After screening more than 500 children, he and his colleagues have qualified fewer than 30. Leckman expects to report results next year and hopes the study will help remove some of the murkiness around the disorder. The early signs have been encouraging, he says. But if the final results show that IVIG is ineffective, he will have no problem accepting that they need to look for a different treatment. Still, that won’t change his belief that PANS is real. “I am convinced these cases exist,” he says. My nephew and his parents certainly agree. This past summer, six months after his troubles began and not long after he’d been put on a heavy dose of the antibiotic clarithromycin, his condition improved markedly. By now, many of his OCD behaviors have departed, and much of his old self has returned. His parents are hoping a course of IVIG treatment will bring him all the way back. They shudder to think what might have happened had they heeded the early advice to treat their son’s diagnosed anorexia with the tough-love, forced-eating approach recommended for an illness typically afflicting high school girls, rather than seeing it as a sign that their third-grade boy’s brain was under attack. The neurologist critics are probably right: A good number of the parents who insist their kids have PANS might simply be seeking a socially acceptable antibiotic answer to what is more likely traditional (often inherited) OCD. But after witnessing my nephew’s ordeal and wading through the research, I’ve come to believe the neurologist critics are probably also wrong. There’s a subset of children who are truly affected overnight and genuinely different — the kind of kids who critic-turned-convert Leckman was big enough to admit he had previously missed. I recognize I have a bias. But to me, shoehorning these particular kids into traditional treatment that is clearly failing them seems more than just insensitive. It seems indefensible. Neil Swidey is a Globe Magazine staff writer. E-mail him at swidey@globe.com and follow him on Twitter @neilswidey.

I wonder how much this child being sick all the time is contributing to his autistic symptoms?

I suppose a carrier could swab neg if they are carrying the strep in their sinuses, not their throat. Or if it is a bad swab. But, in general a carrier should swab positive. They are contagious, but LESS contagious than someone who is actually ill/symptomatic with strep. And, it is possible to clear a carrier (usually Azith or Clindamycin is recommended). But once you clear that carrier, it is possible they might "carry" strep again in the future. if they get exposed to strep again.

I don't think strep carrier is well defined, but generally I think it would be someone who swabs positive but does not have symptoms. When doctors were trying to avoid treating my daughter they would bring up strep carrier and ask if she's ever had neg results. She has, and I could predict by her behavior whether she would test positive or not. It gets all confused when there are not typical symptoms, but only neuro-psychiatric ones. I mean they DO have symptoms w/ strep, but not a great immune response (immune response is what causes typical symptoms). Agreed...I think docs have conflicting definitions of what a "carrier" is. Swedo says a "carrier" is somebody that has no immune response to strep (so no sore throat, or fever). She says PANDAS kids can not be considered carriers b/c they do have an immune response (neuropsych. symptoms)to strep . Not sure if a carrier would have elevated titers. 1 paper I read said they don't have elevated titers (immune response). Another paper said something like "carriers are known for protractedly elevated titers". Neither paper had a reference. When dh asked Kaplan about this, he said it wasn't studied. But, if you take Swedo's word, then carriers shouldn't have high titers (b/c that is a type of immune response, right?). I think when certain docs are checking strep titers (eg in family members) to see if they are "carriers", perhaps what they are REALLY checking for are occult infections.

Hi, have you listened to this podcast with Dr. Bhakta? http://www.blogtalkradio.com/radiopandas/2012/10/18/triggers-treatments-and-triumph Did your dd have any throat cultures done during these illnesses? fevers/vomiting times? I ask b/c my dd never had throat cultures done (until we demanded them--positive, sister was positive too)...all fevers/vomiting were presumed viral. It turns out they were likely undiagnosed strep. She also had low ASO/anti-dnase b strep titers despite positive cultures. I would also rec strep throat culturing family members (check for carriers) and getting a current throat culture on your dd (if one not done recently). I think your dd sounds like PANDAS. Ours first presented as rages/tantrums (OCD developed later, or I didn't know what OCD was in a 7 year old, not the usual handwashing). Some of her OCD was defiance/demanding behavior, things had to be a certain way, rages/tantrums ensued. We felt like we were walking on eggshells those first couple of months (before we learned of PANDAS) b/c I never knew what would set her off. She also had a lot of anxiety. Also, her sensory issues greatly increased. I also wonder if the september illnesses were 1 long strep infection that never cleared? The oct stuffy nose coughing sounds like something else, but she may still have strep (get a culture) that never cleared on top of that.

Ideally, you would want to run the test when in a flare. That said, we went ahead and tested when NOT in a flare, and dd was still in the "high PANDAS range". In a flare (after H1N1) a few months later, she was in the high SC range (the highest Dr. C. had ever seen 253). Anti-biotics shouldn't affect results, but steroids and IVIG can. So, it is best to hold off on steroids/IVIG if you want to run the test. Also, I understand recent strep infections (but technodad says no throat infections since last nov) and Lyme can affect results.

My son is 6. He had a lot of sore throats over last 2-3 years. He tested positive once out of four times he was tested for strep. He had a t&a last Nov and has not had a sore throat since. However we have ts or at least tics that run in our family, as i was diagnosed with mild ts as a kid and i have a cousin who has tics, also his mom has had off and on minor twitching. Also, he get's worse when he eats and is excited (same times I get worse) such as when he is opening birthday presents and going to soccer games. Also, he has slowly gotten worse for about a year. It did not suddenly happen. It did get a lot worse first couple weeks of school which included a lot of big noticeable twitching of head/neck/jaw/arms/chest/whole body. However now it is mainly vocal throat clearing and pig like grunting with a little jerking of chest/shoulders when he is clearing his throat. It sure seems like the same kind of TS I have but a little worse. How many days should I try magnesium to give fair shot to see if it will help? After a teaspoon last Sunday he seemed worse, but maybe he was worse for some other reason and not the magnesium. We have an appointment this week with a Pediatric Neurologist at a Children's Hospital who also is an Assistant Professor of Pediatrics at a nearby University? I talked to the nurse and she said they have treated a couple kids in their practice for PANDAS with antibiotics and other meds. I asked on the phone how do they determine whether kids have PANDAS or TS and she said mostly doctor will ask questions about symptoms and maybe do lab work. Are Pediatric Neurologist's good doctors to make the PANDAS diagnosis? What kind of questions should I bring to the appointment? Hi Technodad, When it becomes available in early 2013, I would encourage you to run something called "the Cunningham test". One of this tests big benefits is that is (somewhat--there is a grey zone) able to differentiate PANDAS vs. non-pandas tics/tourettes. http://pandasnetwork.org/2011/05/pandas-and-autoimmunity-summary-of-dr-cunninghams-autismone-presentation/ I would also encourage you to get throat cultures on everyone in the family (asap, b-4 you see this specialist). It seems like some docs like to do blood, but not bother with throat cultures. It's really important to know if you have any carriers (culture positive)in the family/house. Culture your 6 year old too. Does your son have any urinary symptoms (frequency, bedwetting etc)? Even if the labs the neurologist runs are negative (these tests often are, there currently isn't a 'test' for pandas) hopefully this doc will be open to a 1mo. trial of Augmentin or Azith to see if tics/behaviors are affected. ALso, not all PANDAS kids have the clear cut "overnight" presentation of PANDAS. Your son's history of strep/infections is suspicious. As far as your question, are ped neuros good to diagnose PANDAS....I would say it is totally dependent on the individual! The ped neuro we saw had only diagnosed 2 cases when we saw her (2008), we were the 2nd. Well, actually she didn't diagnose us. She just agreed with the PANDAS diagnosis we came to her with. I think the majority of ped neuros are out there misdiagnosing PANDAS kids as TS. One the other hand, 2 of the top PANDAS docs in the country are ped neuros (Latimer and Trifiletti).

My thoughts exactly!

have you tried pepcid?

pain makes me think "lyme" more than "PANDAS" (not that there couldn't be both) but I think any PANDAS kids with fatigue/joint pain/pain should also be evaluated for Lyme

I got strep in 2009. My doctor was surprised (my lymph nodes were so big you could see them, and the joint of my ring finger swelled up so much I was worried I would have to cut my ring off). I don't remember if I ever had strep as a kid. I have a distant memory of being tested once and that time it was neg. But, the other times when my kids cultured positive for strep, I didn't get it. Anyway, what I've heard is that it can get better a few years AFTER puberty.

He does still have them, but he doesn't ever really get sick either. He is never strep positive. I don't know if I would just yank the out just because, unless I saw him always testing positive or being sick a lot. I am trying to weight treatments and reasons for treatments. It has not been suggested by Dr. B at all. So I don't know that it would be a viable option for us right now. At the IOCDF conf. Dr. L. said she is culturing a lot of antibiotic resistant staph from PANDAS tonsils. Also, both Dr. L. and Dr. T. appear to be in the camp of recommending T/A b4 IVIG is tried.

Well, we just saw a rheumatologist (our dd has had 3 HD IVIG's over the years, and has been on Azith for 4 years). Dd is overall pretty good, probably at 80-90%, but PANDAS is definitely still there. Anyway, to make a long story short, one of the things she recommended was a low allergen diet. She recommended going gluten free/dairy free/soy free (since people may have multiple allergies). She said it may take up to 3mo. to see an improvment. Anyway, something to consider.

http://www.blogtalkradio.com/radiopandas/2012/10/18/triggers-treatments-and-triumph The show should be archived if you miss the live call in time. **NEW TIME** 9PM (ET)/8PM (CT)/6PM (PT)- Dr. Chitra Bhakta, M.D. is our special guest this coming Wednesday, Oct. 17th. Dr. Bhakta works in the Los Angeles area and has more than 25 years experience treating patients with PANDAS, CFIDS, Lyme Disease, Fibromyalgia, Methylation Dysfunction and auto-immune disorders using an integrative medical approach. Dr. Bhakta is currently working with the UC Irvine Micro Biology Department ( Molecular Mimicry) researching PANDAS and other auto-immune disorders and the genetic, environmental, and pathogenic impact on these chronic conditions. Dr. Bhakta appeared on a special Lyme Disease segment of the Dr. Phil show in April of this year.

Hi, You might be interested in this (the doc being interviewed tonight is in the LA area) **NEW TIME** 9PM (ET)/8PM (CT)/6PM (PT) Dr. Chitra Bhakta, M.D. is our special guest this coming Wednesday, Oct. 17th. Dr. Bhakta works in the Los Angeles area and has more than 25 years experience treating patients with PANDAS, CFIDS, Lyme Disease, Fibromyalgia, Methylation Dysfunction and auto-immune disorders using an integrative medical approach. Dr. Bhakta is currently working with the UC Irvine Micro Biology Department ( Molecular Mimicry) researching PANDAS and other auto-immune disorders and the genetic, environmental, and pathogenic impact on these chronic conditions. Dr. Bhakta appeared on a special Lyme Disease segment of the Dr. Phil show in April of this year. Here's the link: http://www.blogtalkradio.com/radiopandas/2012/10/18/triggers-treatments-and-triumph If you can't listen live, the show will be archived. PS yes, my dd had low strep titers despite positive cultures and PANDAS severe enough to require hospitaliation.