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Update on the Le Roy tics

March 9, 2012

Hi Reader. As you know, I like to keep you updated on science in the media, and I have stumbled across a really excellent article on a subject about which we’ve chatted in the past. Susan Dominus has just published an outstanding synthesis of the Le Roy tics phenomenon in the New York Times. The article is somewhat lengthy but if you’ve followed the story at all, it’s well worth reading to the end. Dominus is somehow able to convey this multifaceted story in a captivating but not exploitative manner. This sets her apart from many of the vultures who have descended upon Le Roy to push a specific agenda. After you read the story, don’t neglect the comments section, either, because it’s exemplary of the insanity that has surrounded this story.

There are quite a few interesting issues discussed in Dominus’ piece and the subsequent comments, and some that jumped out at me are going to be discussed herein. First, I found it fascinating that among the affected youths and their families, they immediately separated themselves into the “real” cases vs. those who were “faking it”. This occurred to such a degree that the mother of a young woman with tics accused another ill young lady of manufacturing her own symptoms. Another aspect of the story, threaded throughout, was the persistent notion in the community that a conversion disorder is just a synonym for faking a condition, which as Dominus points out is not at all accurate.  A further noteworthy point was that one of the affected young women seemed to believe that it couldn’t be a stress-related conversion disorder, because one of the more popular teens–a cheerleader and excellent artist with “an amazing boyfriend” –had the condition. How could a young lady who seems to have it all possibly be experiencing stress? This comment is ripe for further discussion; however for now I must go on to what I found to be the most compelling drama of the story.

Of all of the information presented in the article the most riveting aspect to me was the discussion of Dr. Rosario Trifiletti, who has been mentioned previously here at SkewedD. Dr. Trifiletti burst onto the scene in late January, when he stated the following of the diagnosis of conversion disorder:

 “It’s absolute garbage. I don’t believe it one bit.”

This struck me as interesting, because Dr. Trifiletti made the comment prior to having seen any of the patients. It struck me as even more interesting when I discovered that Trifiletti  bills himself on his practice’s webpage as having a special interest in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).  His comment was in direct opposition to the fact that PANDAS was ruled out by physicians who actually were treating the teenagers at the time.  In addition, when Dr. Trifiletti finally did see the young women, he apparently only consulted with each for 45 minutes and failed to take a comprehensive medical history. The latter is especially important in this case as it may have revealed important background information the psychological stresses that some of these young women were apparently experiencing. Then again, as the saying goes, when all you have is a hammer everything looks like a nail.

It should be noted that from an epidemiological standpoint, it makes absolutely no sense whatsoever that PANDAS is the culprit in Le Roy. For example, there is no legitimate explanation for why PANDAS would only strike young women and not young men, despite Trifiletti’s claim that girls have “more sensitive endocrine systems”.   A well-conducted epidemiological study revealed that over 70% of PANDAS cases were diagnosed in males. Further, approximately 70% of PANDAS cases are diagnosed at 9 years of age or younger,  These data argue strongly against the concept that the teens in Le Roy are affected by PANDAS.  Nonetheless, patients under his care believe that they are responding to antibiotic treatment, which  introduces the concept of a powerful placebo effect. It entirely possible that the antibiotic gave the teens permission to improve by providing an explanation and a treatment for their symptoms that was more palatable than a psychogenic disorder.  Evidence for the psychology behind a placebo effect was supported by an ensuing throwdown whereby the young women taking antibiotics allegedly confronted those who were not, stating that those who had not received pills but were improving must have been faking it all along. As Trifiletti himself stated in the article:

“I don’t know, maybe I’m wrong. It’s hard to distinguish between the drug and the placebo effect.”

Of interest is that someone claiming to be Trifiletti then posted the following in the comment section of the article.

In this comment, the alleged Dr. Trifiletti states that “it takes time” to solve medical mysteries. This did not, of course, stop him from announcing that he had solved the mystery on the Dr. Drew show a mere 8 days after seeing the girls. He also alleges in the comment that he has “objective laboratory data” which “strongly supports” PANDAS, and that these findings are based on the “Cunningham test”.  It is worth noting that this test has not been validated in any way as a diagnostic for PANDAS; in fact, the National Institute of Mental Health (NIMH) states that “the diagnosis of PANDAS is a clinical diagnosis, which means that it depends on a carefully taken history and a physical examination, rather than on laboratory tests“. It is perhaps also worth noting that NIMH also lists “prepubertal onset” as a diagnostic criterion for PANDAS; a criterion that would exclude all of the Le Roy teens.

Despite all of the evidence to the contrary that the Le Roy teens have PANDAS,  Trifiletti goes on to declare that he may very well publish his results in Scientific American. While I enjoy reading SA as much as the next geek, let’s be clear: it is NOT a peer-reviewed scientific journal, and the credibility of his results will forever be tainted if he publishes his data there. In fact, although Trifiletti seems to indicate that publishing in Scientific American would somehow be superior to revealing his results in The New York Times, it’s really not that much different. Meanwhile, some joker over at the comments section of the NYT article has asked him why he does not plan to publish in a peer-reviewed journal. No answer yet.

Finally, reader, I would be remiss if I failed to mention that approximately 10% of the comments at the NYT articles mention HPV vaccination. Our hope that the data would convince the vaccinhaters has been dashed, I’m afraid, even though an obviously brilliant and angelic soul named Emily bravely kept up the fight. I don’t know Emily, but I sure am grateful that she posted a link to my blog entry on the subject. Thanks Emily, you are a goddess!

From → LeRoy tics, vaccines

30 Comments
  1. There’s a scene from the trailer for the upcoming Batman movie where an over-sized, very powerful Bane is kicking the crap out of Batman. Batman looks tired, and he can barely raise his arms to protect himself. People are chanting something in the background.

    It was kind of like that last night. The anti-vaxers chanted as their colleagues threw every anti-vax notion in the book at us. We were tired and weary. It was late into the night, and it continues this morning.

    I really hope that the science “rises”.

  2. PANDAS Parent permalink

    As a parent of a PANDAS child (who happens to be female), I feel the need make an attempt to defend Dr T. First, Dr. T did not claim that these children have PANDAS but rather a PANDAS like disorder. He has chosen his words carefully since the whole spectrum of disorders associated with various infectious agents is still open to debate. The latest white paper on the subject can be found at http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf. Because all variants of these types of disorders are not fully understood, I believe there is great confusion as to how to categorize and name all the different ways that infections can result in neuropsychiatric behaviors. The basic theory behind all these disorders are, 1) something causes a breach in the blood brain barrier, 2) some infection agent (specifically the anti-bodies for that infection) crosses the blood brain barrier and attacks a part of the brain. Note: these don’t have to happen in this order. This theory is supported by a mouse model (Yaddanapudi K, Hornig M, Serge R, De Miranda J, Baghban A, et al.). The part of the brain that is affected will determine the type of symptoms that are observed (OCD, Rage, Tics, Sleep disorders, etc.). In the specific case of PANDAS, the infectious agent is Group A Strep but other infections (identified by the anti-bodies tested for) can result in similar presentations. The fact that the NIMH has 5 specific symptoms that must be met for PANDAS is, in my opinion, too strict for diagnosis and I can not think of a single disorder that ALL symptoms must be present for a diagnosis. The “prepubertal onset” criteria (usually mentioned as the primary reason of rejecting PANDAS in LeRoy) is also, in my opinion, not accurate. For one, it is possible that all of these children had “prepubertal onset” but it was not recognized at the time. Most PANDAS parents can, after the fact, recognize a previous episode (most of the time years earlier) of PANDAS symptoms that were not severe and went away on its own. It is typical that each subsequent episode of PANDAS (triggered by exposure to an infectious agent not necessarily Strep) can be more aggressive than the previous, and extend well into puberty (please read Saving Sammy where Sammy was treated into his 20s). “Prepubertal onset” may be typical but not necessarily required since everyone is different. Also, other similar non-PANDAS disorders may be just as common in puberty or may affect females more than males. I believe that years from now, it will be understood that a significant number of neuropsychiatric disorders (in both children and adults) will be identified as autoimmune disorders caused by infections. This may seem absurd but it was not too long ago that Barry Marshall and Robin Warren was laughed at for proposing that Helicobacter Pylori caused ulcers.

    • Thanks PANDAS Parent for your interesting post. I understand why you support the potential concept of a PANDAS-like disorder in Le Roy, but I’m afraid I don’t agree.

      To me, the most glaring problem is that I still do not see a reason for an attack rate of 95% in females. There is nothing in the scientific literature to support such a phenomenon for a PANDAS-like illness, and no one has been able to offer a convincing explanation. The idea that it could happen is just not good enough without a biologically relevant explanation.

      The issue with Dr. Trifiletti himself is first that he proclaimed the diagnosis of conversion disorder to be incorrect before he even saw the patients; this is a red flag. Second, his specialty is PANDAS-like illnesses, hence my comment that if all you have is a hammer, everything looks like a nail. There is a difference between the results you will get if you go into an examination with the intention of finding a PANDAS-like illness as compared to what the treating neurologists did, which was to ask a whole lot of questions over a wide range of subjects. Another red flag. Third, his statements indicate that he is overconfident in his data in some ways, but not confident enough to publish in a peer-reviewed journal. This is troubling, as he seems to give more credence to the “Cunningham test” than it currently deserves, but he doesn’t seem assured enough to take it to peer review. In the scientific world, this is another red flag.

      With that said, I truly do appreciate your comments and insights. I do think that as time goes on and our diagnostic techniques improve, our concept of some diseases will change, as it always does with good science. However, taken together, the data for this particular epidemiological event do not support a PANDAS-like illness.

  3. PANDAS Parent permalink

    The high percentage of females in the LeRoy case is one of the things that bothers me the least. First, there isn’t enough cases to claim 95% is accurate for a large population. Besides, by my count there were 16 of 18 females which is <90%. With only 18 cases, this number could be +/- 20%. PANDAS is reported to be 70%/30% male. Rheumatic Fever (a cousin to PANDAS where the Strep antibodies attack heart tissue) is the opposite affecting 2 times more females than males. Why does any disease affect one group over the other? This question is often not known. As stated before, all of the PANS/PANDAS disorders require 2 things. One of them is something that allows a breach in the blood brain barrier. There are a lot of speculations on what this "something" is but vaccines (or ingredients in them), heavy metals, fluoride, diet, genetics, or any other environmental cause may be the culprit. This is one of the areas of study that I feel has been neglected. In the LeRoy case, it is possible that this cause could be something that females are exposed to more (Gardasil, makup, contamination in girls locker-room/bathroom, etc.). This part of the puzzle is not well understood and exposure could have occurred years earlier with the second part of the equation (exposure to an infection agent) happening later.

    Yes, Dr. T did indicate conversion disorder as incorrect before seeing any patients but this was based on reported symptoms that were similar to PANS/PANDAS symptoms and the testing for infectious agents (at least one of Strep, mycoplasma, or Lyme) were found to be positive in every patient that he examined. Yes, he specializes in PANDAS but that just makes him more capable of identifying the symptoms of the PANS spectrum. By your argument, the doctors at the Dent Institute specialize in identifying Conversion Disorder (a label used when nothing else fits), so they used their "hammer" to hit their nail. Yes these doctors asked a lot of questions and came up with no answer, therefore Conversion Disorder. Did they run tests for evidence of past infections, No. they did what they are familiar with. On a personal note, when we brought my daughter to several psychologists and psychiatrists that specialized in OCD (a main neuropsychiatric symptom of PANDAS), they all stated that she presented her symptoms like nothing else they had seen before. If they had multiple patients from the same school, she would have probably been told she had conversion disorder.

    As far as his confidence in publishing, it takes years of studies with large groups (18 in LeRoy isn't enough) to make a highly probable conclusion. Your assumption about his opinion of the Cunningham Test is based on the one unconfirmed entry that claimed to be him. As far as I know, he has never publically commented about the Cunningham test. I can tell you that I personally have high hopes in this test as a potentially strong objective test to identify a broad spectrum of disorders up to and including Sydenham's Chorea which is (I believe) at the top of a spectrum of disorders which include PANDAS. This test shows that children who clinically fit the diagnosis for Sydenham Chorea had elevated antibodies that would react with neuronal tissue. I would recommend that you contact Madeleine Cunningham at madeleine-cunningham@ouhsc.edu for more information on her research.

    You will find that the most knowledgeable people on PANDAS are the parents. The parents are the ones that read everything possible out there and they are the ones that are communicating with each other on various forums to get all the commonalities and trends. I can tell you that the parents strongly disagree with the diagnostic criteria for PANDAS/PANS in that they are too strict. You don't think this particular epidemiological event does not support a PANDAS-like illness but based on all the info that I know (and I have literally read everything on LeRoy), it is highly probable that what is happening in LeRoy is caused by elevated antibodies reacting with certain parts of the brain, i.e a PANDAS-Like Disorder.

    • I won’t be able to convince you of my point of view; however, I must note that I’ve already covered Gardasil in detail. There is no question at all that this outbreak had NOTHING to do with Gardasil. You are bending yourself into contortions to make your hypothesis fit; whereas conversion disorder fits perfectly. Further, whether it’s 88% female or 95% female, this is nowhere near the documented figure that you yourself cite, which is 30%. This difference is big enough to apply common sense and realize that this is not PANDAS.

      I must ask, however: Why are you so opposed to this being a conversion disorder? Why have you decided that this MUST be PANDAS? Do you care about a real diagnosis that will help these young ladies or do you have something to gain by this being PANDAS or PANS?

      Here are some items from your post that concern me:

      1. Your assumption that the Dent physicians STARTED OUT with the assumption that this was a conversion disorder. That was clearly not the case if you’ve followed this story at all. A neurologist would begin with an assumption of a medical diagnosis, hence all of the tests the young ladies had.

      2. Your support of “Dr. T” claiming that conversion disorder was an incorrect diagnosis despite not having seen any of the patients himself at that time. It proves his bias and calls his “diagnosis” into question. This is not a negligible issue. Your defense of him suggests that you are unable to separate the data from “Dr. T” and simply cannot consider this objectively. I have no dog in this hunt. If I thought it looked like PANDAS based on the available data, I’d say so. But it doesn’t.

      3. Your assertion that he couldn’t publish these results in a peer-reviewed journal. You may have heard of guy named Wakefield who published a little study of 12 patients in The Lancet. Given the interest in this case, journals would be much more amenable to any actual data he could provide, but he won’t provide it for peer review. You can take that to the bank.

      4. Your claim that the diagnostic criteria are “too strict”, based on anecdotal evidence. Diagnostic criteria are based on science, not anecdote.

      I realize that you have probably faced your share of challenges with your child’s diagnosis, and I feel empathy toward you regarding that. However, it doesn’t make the Le Roy incident any more likely to be PANDAS or any similar illness.

  4. PANDAS Parent permalink

    Let me try to address your points.
    1. I am not saying that this is related to Gardasil. I only use this as an example of something that is associated more with females and therefore something like Gardasil could come into play. I also do not think that Gardasil (or any other vaccine) has correctly been eliminated as a factor. The reasoning given for Gardasil is that not everyone in the LeRoy group was vaccinated with it and those that were were vaccinated years earlier. These 2 facts, to me, do not eliminate it since Gardasil (or certain ingredients in it) may not be the only source of the contamination (which opened the blood brain barrier, BBB) and those that did not get it may have been exposed to a different agent that opended the BBB. In addition, the time between vaccination and exposure to the infectious agent may not require a short time so being vaccinated years earlier is not a reason to eliminate this. One of the problems with PANDAS is the time between exposure and the symptoms. PANDAS symptoms don’t show up the day after you get sick with Strep. It takes months, sometimes years and the only evidence left is the high antibodies. The strep is long gone and trying to figure out what potentially caused the BBB breach could be impossible.
    2. I am not saying that this is PANDAS which is reported to be only 30% female by NIMH. (BTW, I personally think this figure is incorrect and see a significantly higher percentage of females on the various PANDAS forums). I am saying that I believe this is a disorder caused by elevated antibodies which breached the BBB and is attacking certain parts of the brain. Call it PANDAS-like, PANS, PITANDS, or anything else you want (for the sake of my post, I will call it PANDAS-like). This is not by any stretch unbelievable since similar mechanisms occur in acute rheumatic fever which, BTW affects more females than males. Why is it so unbelievable that this could be happening?
    3. I never said that the Dent physicians started out with CD. When nothing else fit, this is what they labelled it as. You say they did medical tests but they never did the tests that provide indications of PANDAS-like disorders which include testing for known infection antibodies that cause this (Strep, mycoplasma, lyme), they never did steroid bursts which can provide indication of brain inflammation (in some cases, steroid bursts can overnight temporally eliminate all neurological symptoms), or tried short term anti-inflammatories (like ibuprofen) which will provide indication of brain inflammation if symptoms improve. These are standard procedures for PANDAS to help diagnose.
    4. Dr T came to LeRoy because there was enough anecdotal evidence to indicate a possible PANDAS-Like disorder. He actually has never 100% dismissed the CD diagnosis but has, in his released statements, given the facts. All of the girls that he tested had high antibody levels of at least one known infectious agent that causes PANDAS-Like symptoms. He has treated with antibiotics and has seen impotents (he has not given the exact statistics of how many). He has stated that it is impossible to say if this treatment is helping the issue or it is a placebo affect. And he has stated that it is possible that there is a combination of some girls with PANDAS-Like disorders and some with CD. I should also note that the Dent physicians also have stated that there may be some of these girls that have a medical cause of their symptoms. It is impossible for all of these patients to have CD since some presented with their symptoms before it was known that others had it.
    5. As far as any publications on this. I think in time you will see something, maybe even from Dr. T. You have to remember though that this group of patients are not pure. Some are only getting treatment from Dent, some only from Dr. T, some from both, and some from nobody. Trying to come to any conclusion based on the mixed treatments will be difficult. If Dr. T is correct, there are no double blind studies with placebos to determine a placebo affect. Dr. T is treating all of the patients with what he thinks is best and not playing games with their emotional lives.
    6. The NIMH diagnostic criteria is too strict. Dr. Miroslav Kovacevic, MD FAAP has been successfully treating PANDAS and PANDAS-like patients for over 10 years and does not use the strict NIMH criteria. His website is http://webpediatrics.com/pandas.html You can go there and read his criteria, it is too long to list but his criteria for PANDAS is similar to the new NIMH criteria for PANS which is less strict. PANDAS is a extremely specific variant on the PANS spectrum disorder and the symptoms and criteria will vary from patient to patient, even from episode to episode within the same patient. This fact is not recognized yet by NIMH. My daughter’s presentation was significantly different in her 7 year old episode compared to her 11 year old episode compared to her 12 year episode. She did not meet the NIMH criteria at age 7 and only came close at age 11. She was treated at age 11 and is probably 80-90% improved depending on the day but if the strict NIMH criteria were used, she would not have been treated.

    • Hi again,

      1. The fact that you do not think that Gardasil has been eliminated as an etiological agent also means that we are coming close to the end of our conversation, because it indicates that you do not trust scientific data or the people who interpret them for a living. Thus, I’m afraid it’s probably pointless to continue after this post. The facts are undeniable. It was not Gardasil.

      2. Related to #1 above, you choose to believe anecdotes on message boards over scientific data. I have had this conversation before, but with anti-vaxxers. If you’ve read anything else on my blog, you will see that I won’t continue mucking around with arguments that have no scientific basis.

      3. Actually, you did indicate that the Dent physicians were somehow leaning toward conversion disorder, which is odd, because it’s not a neurological diagnosis. As I said, it was probably the very last thing they were looking for. In contrast, “Dr. T.” came in with a pre-formed hypothesis and made the patients fit it.

      4. It is simply not up for debate that “Dr. T.” dismissed the diagnosis of conversion disorder COMPLETELY without having seen the patients. His quote about conversion disorder was (and this is the third time I will repeat it): “It’s absolute garbage. I don’t believe it one bit.” Do you really find some equivocation there?

      5. SkewedD guarantees you this right now: “Dr. T” will never, ever so much as attempt to publish the data on the Le Roy patients in a peer-reviewed medical journal. Never. He said as much. His type doesn’t roll like that. They make pronouncements on the Dr. Drew show and in the NYT comments section and don’t bother with any pesky scientific peer-review. If I’m wrong I’ll buy you a drink.

      As a side note, no matter how you slice it, PANDAS or PANS has NEVER occurred in an “outbreak”. It rarely occurs, and even more rarely occurs in females. Some of the affected teens are improving WITHOUT being under the care of “Dr. T.”. How do you explain that, I wonder? Do they have some rare variant of PANS that can be treated without “Dr. T.” or antibiotics? Listen, you either believe the science or you don’t, but regardless, what has happened in Le Roy does NOT even remotely fit the profile for such a disorder. The disorder it DOES fit is CONVERSION DISORDER.

      I’ll go a step further. I think “Dr. T.” is doing a grave disservice to these young ladies. As outlined in the article, those under his care have started bullying those who were not and calling them “fakers”. You may not want to believe this, but part of that is likely due to “Dr. T” indicating that conversion disorder was not an “acceptable” diagnosis. Conversion disorder is every bit as serious as PANDAS/PANS. The parents of children who have suffered from it are undoubtedly as passionate in their views as you are in yours. However, because of the way our culture views psychological illness, they are not supported and nurtured as those of you in your community are. And here’s the kicker: in the long run, I imagine that it will the patients who were not seeing “Dr. T.” who will do better. Why? Because they are facing the psychological roots of what happened to them and are learning coping methods that don’t involve popping an antibiotic to prove that they have a “real” illness.

      Now, I think I’ve been patient and tried to address some things you’ve posted. I will ask you a series of questions one more time, and if you refuse to answer again then I’m afraid this conversation is over. They are as follows: Why are you so opposed to this being a conversion disorder? Why have you decided that this MUST be PANDAS? And most importantly: do you care about a real diagnosis that will help these young ladies or do you have something to gain by this being PANDAS or PANS?

  5. PANDAS Parent permalink

    I admit I hesitated to discuss Gardasil for the exact reasons you mention, but let me just say this. Anyone that says facts are undisputable is not practicing true science. Science can never prove an absolute. There is a significantly high number of reported PANDAS exacerbations following a vaccination (including my daughter) and I personally have not eliminated the link between vaccines and PANS. Yes, this is extremely controversial and I admit my personal experience may be biased.

    As far as your assumption of anecdotal evidence, the PANDAS forums have thousands of members with detailed statistical studies on hundreds of cases. There are several doctors with PANDAS children on these forums and the information collected by these forums are significant. These aren’t just a bunch of parents writing notes to each other. Please check out http://pandasnetwork.org. BTW, the 200 case study report done by pandasnetwork show 60% boys and 40% girls.

    Also, your timeline on Dr T is not correct. His statement which dismissed CD “It’s absolute garbage. I don’t believe it one bit.” occurred after he met with the 9 patients but before the results of the antibody tests. Your continuous attack on Dr. T because he “dismissed the diagnosis of conversion disorder COMPLETELY without having seen the patients” is not correct. And, as I stated, the results of the antibody tests in combination with the standard treatment of antibiotics and anti-inflammatory support his diagnosis although in a subsequent statement, he has stated that it is impossible to tell for sure because of a possible placebo affect. He also stated that it is possible that even though he believes that this is a PANDAS-like disorder, it is also possible that some of the patients that developed symptoms later may be CD. Again, science can never prove a positive, it can only say that the evidence to date provides indication of a possible cause.

    You also state that ” The disorder it DOES fit is CONVERSION DISORDER”. I disagree. The NIH symptoms only include loss of a bodily function such as Blindness, Inability to speak, Numbness, or Paralysis. Nowhere does it mention tic symptoms and nowhere does it mention group symptoms. CD usually begins suddenly after a stressful event (not a stressful life) and usually goes away within days or weeks (not months). The fact that there are 18 cases to me dismisses CD although doesn’t necessarily dismiss mass hysteria, a diagnosis that is avoided because of the negative word “hysteria”. The fact that some of the patients developed their symptoms before this went public dismisses mass hysteria.

    Dr. T has no control of what these girls are doing to each other. You can’t blame him for this.

    You are also assuming that the girls seeing Dr. T are only getting treatment from him. Although I wasn’t at his consults, PANDAS treatment includes therapy. Psychiatric symptoms for PANDAS don’t just go away. The medical treatment (antibiotics, anti-inflammatories, and Ig treatment) only remove or minimze the physical cause. Months of symptoms often have to be relearned and therapy is recommended. I believe some of Dr T’s patients are still getting therapy at Dent.

    I hope I answered your question: “Why are you so opposed to this being a conversion disorder?” and “Why have you decided that this MUST be PANDAS[like]?”
    Do I care about a real diagnosis that will help these young ladies or do you have something to gain by this being PANDAS or PANS? Of course I care and yes, I do have something to gain for this being PANS. If this is PANS, it bring a spotlight to a spectrum of disorders that I believe affects a lot more children than is believed and it will open up interest in research in this area. Unfortunately, the way this was handled was sad. It would have been great if the Dent doctors would have been open to the idea that although they diagnosed CD, there were significant similarities to PANDAS and would have worked with Dr. T and not against him to perform a proper, controlled medical study. If done correctly, a study on a group like this may have put this to bed. As it is, the hodgepodge of treatment will prove nothing and the bickering between doctors of different specialties will continue.

    • The definition of a scientific fact, PANDAS, is that it is accepted as true. If you do not believe Gardasil has been eliminated, either provide an analysis of the data that supports your misleading statements, or admit that this outbreak could not have been caused by Gardasil. I’m afraid I’m not terribly interested in any work done by the PANDAS network unless it’s been peer reviewed. If it has, please provide the scientific reference and I’m happy to read it. It’s unfortunate but your posts here strongly indicate that results produced by the PANDAS network may be fatally biased.

      In addition, you said in one of your posts the following: “He (“Dr. T.) actually has never 100% dismissed the CD diagnosis but has, in his released statements, given the facts.” I have shown you, repeatedly, that this assertion is completely and utterly false. Just stop.

      Your interpretations of conversion disorder are inaccurate, particularly with regard to media exposure. The girls interacted WITH EACH OTHER, which is the key here. Although the media exposure undoubtedly exacerbated the symptoms, it is irrelevant to the root cause. Further, I actually can blame “Dr. T.” for fanning the flames of shame and embarrassment in these girls with his ill-advised public commentary. It’s further interesting that you claim that the Dent doctors were not open to Trifiletti. I was unaware of that. Perhaps it’s because he stated unequivocally in the media that their diagnosis was incorrect without having actually seen the patients that they had been treating for months? Did he consult with these physicians before making that declaration? Never mind, I already know the answer.

      Nonetheless I am glad to see that you admit that you are personally invested in this issue in a biased and unobjective manner.

  6. PANDAS Parent permalink

    I stand by my statement that Dr. T has not dismissed CD completely. You are basing your assumption on an early (in his involvement) quote from him in a TV interview. This quote of “It’s absolute garbage. I don’t believe it one bit.” was at or around 2/2/12 from a phone interview. His later released statements do not totally dismiss other causes. Here is his statement from 2/24.

    “I continue to work with a PANDAS-like diagnosis. The lab work is now complete on all nine of the patients I examined on January 29, 2012 and has shown evidence of infection by either Streptococcus Pyogenes (the common strep throat bacterium, found in five of nine patients) or Mycoplasma Pneumonia (a bacteria-like agent that is a common cause of a mild pneumonia-like illness, found in eight of nine patients). Two patients also meet CDC diagnostic criteria for Lyme disease. They are being treated appropriately according to the infectious agents found and are responding to treatment. In my opinion, these objective findings, which would be exceedingly unlikely to occur by chance alone, support my diagnosis of a PANDAS-like illness.
    I must remain open to another possibility such as mass psychogenic illness, which can never be supported or refuted by objective findings. However, given the clinical and laboratory data, I find a PANDAS-like illness a very likely medical diagnosis in these children. I hope to see the teenagers again soon, but given that I am doing house calls from some two hundred miles away, it requires extraordinary planning. In the meantime, I remain in close contact with their parents.”

    It is unfortunate that everyone continues to return to this “sensationalized” quote from early in his involvement.

    You state that ” The girls interacted WITH EACH OTHER, which is the key here.” yet there are several of the girls that had no interaction with the others and showed symptoms prior to any media coverage of this.

    As far as the relationship between the Dent doctors and Dr. T, I already stated that I think the way this was handled was sad and unfortunate and was probably kicked off by Dr. T’s early statement which may have been interpreted as a personal attack on Dent.

    • What is unfortunate is that he made the “sensational” quote in the first place, which appeared in an article dated January 24, 2012, so I’m not sure why you assert that he made the comments on 2/2. Regardless of his backpedaling, it set the tone, deservedly, for how he was received by the scientific and medical community. Incidentally, I’m not sure that the Dent physicians took it as a “personal attack” so much as an illustration of extremely poor judgement and an unacceptably biased approach to medicine.

      And yes, the girls interacted with one another. It was made clear early on that there was social media involved. It’s amazing how much Facebook can transmit. The scientific literature on the subject is simply astounding.

  7. PANDAS Parent permalink

    I agree that it was unfortunate that he used these words in the first case. For your information, this quote came from a phone interview on a local news. The earliest reference to it that I found was January 31 so your story of 2/24 was over 3 weeks later and he had made at least 2 official, more politically correct statements by the end of February. Not to defend him (because the use of these words were asking for controversy) but it is almost always taken out of context with only the word “garbage” often quoted. This is all I am going to say about this because petty arguing about this takes away from the facts of the case.

    You asked my why I don’t believe that it is CD. I am not saying that it isn’t but what I am saying that the symptoms are similar enough to PANS where dismissing a PANS/PANDAS like disorder is premature. The new criteria as presented by the Swedo et. al. “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS (Pediatric Acute-onset Neuropsychiatric Syndrome)” are: 1) sudden onset of a neuropsychiatric symptom (in the case of PANS the primary symptom is OCD) and at least 2 other neuropsychiatric symptoms from a list of 7. Yes this is a peer reviewed paper. The LeRoy girls mimic these criteria with sudden onset of (in this case) tics and/or choreiform movements, with the addition of several of the other neuropsychiatric symptoms. This paper also states “it will be helpful to learn about cases in which a child “almost met” the PANS criteria but could not be included because of variances from the published description. Atypical presentations also will be of interest and may be helpful in determining the clinical boundaries of the syndrome.” In other words, criteria are listed for PANS but it is open to discussion regarding variants in what major and minor symptoms are present and it is possible that variants may open the spectrum of these disorders in the future. The big clue though is sudden onset which the LeRoy girls/boy meet. This paper also states that diagnostic evaluation may include laboratory tests including blood tests for antibody titers. It also states “[PANS/PANDAS] extends to at least age 18 years (and in some definitions, 21 years). Because adolescent cases were not uncommon in the clinicians’ experience, the conference participants decided that the new syndrome should not exclude cases with postpubertal onset, as the PANDAS criteria had done”. If you read this paper, it is obvious that the LeRoy subjects’ symptoms are similar to PANS/PANDAS with the exception of what major symptom was present. PANDAS include sudden onset of OCD where LeRoy subjects have sudden onset of tics and Chorea movements. They also all (the 9 that Dr. T saw) tested positive for at least one antibody titer. Is a PAN/PANDAS-like disorder possible? Absolutely and I disagree with anyone that dismisses it. CD is also possible but so is PANDAS-like disorder.

    • I wrote about his comments for the first time on 2/3. They appeared in an article dated 1/24 that was linked to my blog post. You call it “petty arguing”. I call it a demonstration of a clear lack of objectivity on “Dr. T’s” part. As for the rest of your post, it’s just you repeating that you think it’s PANDAS/PANS because apparently everything that has been published in the scientific literature about this disorder that doesn’t fit your hypothesis is wrong. Got it.

      • PANDAS Parent permalink

        No, what I am saying is that interpretation of a paper written by the very person that coined the name PANDAS would support a possible diagnosis of PANS in the LeRoy case. In addition, there are other published studies that show the relationship of tics with infections including:
        Kurlan R, Johnson D, Kaplan EL; and the Tourette Syndrome Study Group(2008) Streptococcal infection and exacerbations of childhood tics and obsessive-compulsive symptoms: a prospective blinded cohort study.
        Pediatrics 121: 1188-1197.
        Lin H, Williams KA, Katsovich L, Findley DB, Grantz H, et al. (2010) Streptococcal upper respiratory tract infections and psychological stress predict future tic and obsessive-compulsive symptom severity in children and
        adolescents with Tourette syndrome and obsessive-compulsive disorder. Biological Psychiatry 67: 684-691.
        And
        Leckman JF, King RA, Gilbert DL, Coffey BJ, Singer HS, et al. (2011) Streptococcal upper respiratory tract infections and exacerbations of tic and obsessive-compulsive symptoms: a prospective longitudinal study. J Am Acad Child Adolesc Psychiatry 50: 108-118.

        So again, I say, anyone that denies the possibility of a PANS-like disorder in the LeRoy is not considering all the possibilities.

  8. PANDAS Parent permalink

    One more thing, there is a great article where OCD expert Michael Jenike, a professor of psychiatry at Harvard Medical School, is interviewed about the LeRoy case. It give compelling explanations of why he thinks this is PANS. If you haven’t read it, I suggest you do and I would be interested in your comments on it. http://www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls

    • It’s not a “great article”. It’s a bunch of rank speculation by a psychiatrist specializing in PANDAS who has neither seen nor treated the Le Roy teens. And even he can’t explain a PANDAS outbreak though he tries to handwave through it.

  9. kathy trim permalink

    Without having the dramatic symptoms shown in these girls, I have been diagnosed with Meige Syndrome, or Blephorospasm. With only eyes, nose, some lip movement involved, cat scans, brain scans, and multiple other tests were done approximately 25 years ago. The problem was so severe that before I was diagnosed and treated (with, at that time, experimental botulinum) I was unable to drive, read, watch television, etc. Nothing showed on any of the tests done, but the symptoms were real. I was sent to a movement disorder section of KU Medical Center, tests run on the extent of the tics, and the next day the treatment began. It was magical! But I have often wondered (especially since these girls’ problems) if there is anything connected to tourettes. I sympathize with these young women, but I have also noted that of all the things I can’t do when the Botox is wearing off, I can needlepoint. Possibly because of the complete concentration required?

  10. “Anyone that says facts are undisputable is not practicing true science. Science can never prove an absolute.”

    I don’t know about you all, but the fact that the Earth is not round has been proven scientifically. There is no doubt about it. It’s a big ol’ sphere. The fact that the Earth revolves around the sun and is not the center of the universe has also been proven scientifically, and there is also no doubt about it.

    Scientists also took a virus from a sick animal, grew the virus in the lab, and gave the virus to a second animal. The second animal developed the same exact syndrome as the first animal. Everything else was controlled. This is the basis of Koch’s postulates, and it is a scientific fact that you CANNOT get AIDS without HIV, influenza without the flu virus, or tetanus without the toxin in your bloodstream.

    Why, then, is it not a “fact” that one possibility after the other has been eliminated, and what remains, however unacceptable, must be the truth?

  11. PANDAS Parent permalink

    “Why, then, is it not a “fact” that one possibility after the other has been eliminated, and what remains, however unacceptable, must be the truth?”
    Because that is not how science works. Scientific theories cannot be based on elimination of everything else. They can only be based on the positive observations of tests.
    You, like most people, are confusing facts and observations with scientific theories. The earth is round (spherical). This is a fact supported by scientific observations. It is not a theory. Facts are things that describe theories. An example of a theory that a round earth supports is: the smallest mass that an astronomical object must have to be spherical is 10^21 kg. This theory is supported by observations of various astronomical bodies. There are no observed bodies smaller than that that are spherical. If we observe a smaller object that is spherical in the future, the theory must be changed. If, after 1000 years, we have yet to observe a smaller, spherical object, it doesn’t make this theory correct (i.e. make it a law), it just means we haven’t observed anything that disproves it.
    Centuries ago, Isaac Newton developed his theories on gravity. These theories became so supported by observations that they were considered scientific law. Then along came Einstein who totally redefined gravity and his theories don’t work in quantum physics.
    Diseases/disorders/syndromes etc. are all scientific theories supported by facts (symptoms). To diagnose a disease, the symptoms have to be observed. It is always better to have objective symptoms (something that can be tested for) than a subjective symptom. The LeRoy teens meet the symptoms of PANS including sodden onset, neuropsychiatric symptoms, positive antibody tests, improved symptoms when given anti-inflammatories, improvements on antibiotics. It doesn’t mean they have PANS, it just means that the facts support it. There may be other theories out there or the tests for PANS may be incomplete (this diagnosis is in its infancy) but you can’t rule it out. It is a diagnosis of positive results of tests, both subjective and objective (observations of symptoms are tests). In contrast, Conversion Disorder is a diagnosis based on the negative results of tests/observations. There are no scientific theories that are based on the negative results of tests. Negative results either disprove a theory or point you to another. This is why so many people have a problem with CD. It is considered a diagnosis based only on elimination. Doctors have a problem with not knowing something so they give it a name, even though they can’t explain it. In reality, they either have not tested for the right things, interpreted the tests incorrectly, or the real cause has not yet been discovered.

    • As an FYI, I am not posting the second comment that you left, because there is no reference to a peer-reviewed scientific paper in your comment. I don’t peddle junk science here.

    • Ah, yes. The “science is not always right” gambit. I call it the “they once called me mad but are now asking me to save them” gambit. Whatever.

      You telling me how science works is like Newt Gingrich telling me the secrets to a successful marriage. It’s long-winded, full of examples, but offers nothing in the way of substance or credibility.

      • PANDAS Parent permalink

        You should not make assumptions as to my credentials. Just because I call myself PANDAS Parent does not make me unknowledgeable in the ways of science. For your information, I happen to have 3 post graduate degrees in science and have 20 years of both academic and industry experience. I am trained in Experimental Design and Six Sigma methodologies.
        I only provided a “long-winded” post with examples to correct your use of observed fact (the Earth is round or the earth revolves around the sun) as an example of a scientific theory or law.

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Trackbacks & Pingbacks

  1. Whatever happened with the LeRoy tics? « SkewedDistribution
  2. LeRoy tics have now moved to Danvers, MA? | SkewedDistribution

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