T_Mom

To add another thought to the conversation-- I am wondering (hoping) the White Paper was to be a paper to pave-the-way for the results of the IVIG study at NIH??? Perhaps it was to "open the door" for the definition --- and now the TREATMENT issue will be addressed once the NIH study is completed... I mean afterall, they ARE using ANTIBIOTICS long term, AND IVIG to treat PANDAS/PANS AT THE NIH right now!!

That concerns me too. Will the recovery by only with the severe motor symptoms, with the psychiatric symptoms persisting for decades (as with SC)? And some of these girls may be on so many psych. meds, that it may be hard to tell what is PANDAS and what is a side effect of the meds. "However, further evaluation of the psychiatric sequelae of Sydenham's chorea demonstrated emotional and disruptive behaviours were common accompaniments. A follow‐up study showed high prevalence of emotional disorders (obsessive‐compulsive disorder, anxiety, depression) and disruptive behaviours in 75% of patients.20 More importantly, this study demonstrated that the behavioural consequences often remained for decades after the resolution of childhood chorea.20 " http://qjmed.oxfordjournals.org/content/96/3/183.full (EAMom, thanks for posting that quote from R.C. Dale's 2003 article, I had forgotten that review and it is worth reading again--)

Dr. Schulman is incredible. Here she is treating PANDAS in a community where it is apparently prevalent and she is willing to thoughtfully expound on the diagnosis, treatment, and follow up for others to glean from! Even her treatment protocol! Thank you Dr. Schulman!!!

Ruby apparently sees Dr. T. (mentioned in the written comments.) Her symptoms are much closer to the Leroy girls than to what my two daughters have experienced. Did she have OCD? --certainly mentioned some of the other Ps issues: age regression, angry episodes, etc. --but the OCD is not primary, may not even be present. Makes me wonder if this may be some type of second-cousin illness to Ps. --from all accounts posted she has had very positive treatment effects, thankfully--and from the name posting perhaps they are in NY?

Hi BD24, thank you for sharing your thoughts with us...we all have our "anniversaries" which we remember--and others we forget:) Are you in the NIH study? Wow, that is amazing that it is the one year anniversary--I am sure this Feb. 17 will be memorable as well.

I was wondering the same thing????? I would go, but I would keep it private.

Good find EAMom. --this text definition of Chorea captures the PANS-tic experience perfectly: "Chorea is a rapid, fleeting, random and non-stereotyped movement which is worsened by anxiety" Both of our daughters have had chorea 'tics' during severe episodes. We see these 'tics' morph from one kind to another, usually stay somewhat the same for a week or so, such as the finger flicking, eye-stretching, head jerking to the side, head bobbing, etc. I asked our neurologist how could we tell what WAS a "tic" and we were told that a tic was essentially the sensation that a movement needed to be done, and that there was a relief felt when it was carried through. We have seen these alongside of the PANS OCD issues -- Interesting to note that chorea can be consciously controlled for short periods of time. We can confirm, with video, that these same movements go away with the right antibiotics/steroids/IVIG/and for one child pex. Oh, and their teachers can too-- --over the past four years! Oh, and the episodes, triggered by exposure to strep or other illness, even in others. I believe the statement Dr M made refers to his belief that the movements of the Leroy girls could not be "tics" proper, as they were not consistently the same and they crossed the vertical mid-line of the body--my limited interpretation.

no -- absolutely not -- the first clip when Dr. T was asked about that -- he NEVER said the diagnosis was 'garbage' and he explained that clearly. it's medical slang -- perhaps "kitchen sink diagnosis' would be better and not cause so much uproar -- that's what it means and Dr. T clearly explained what he meant to anyone who was listening. he may be guilty of using medical slang when he should have been more clear in an environment where not everyone understands that -- but that's ALL! i'm feeling very concerned for Dr. T that he is exploring a very common sense avenue -- which certainly could turn up a wrong road -- but one that absolutely should be explored and is enduring unneccasary grief about it!! i once heard Meg Ryan talk about that she never read or listened to any of her reviews. i hope dr. T is doing just that -- staying focused on his patients and what he believes he needs to do to treat them and not listening to the nonsense. "Great spirits have always found violent opposition from mediocre minds. The latter cannot understand it when a man does not thoughtlessly submit to hereditary prejudices but honestly and courageously uses his intelligence and fulfills the duty to express the results of his thoughts in clear form." - Albert Einstein I SO agree-- it was used as "medical slang" to say that CD, in general, is a "garbage disposal" type of diagnosis. I really don't believe he meant to say anything negative re: Dr. M in that comment. Dr. T. has been so incredibly professional, balanced, and kind-hearted in all of his interviews--even Dr. Siegel on t.v. commented publicly on his care and concern! Dr. T. was willing to go and try to help when asked to by the families. His oath surely shines: to do no harm.

Everyone should watch this newsclip carefully-- a few impressions. ...whether or not this turns out to have an etiology of infection, neurological, or psych. origination, or a combination therein. re: tics It is obvious that Dr.s McVige and Mechtler have never treated PANS kids who are ticcing! PANS kids do not have "tics" that "fit" any particular diagnosis (ie. not always parkinsons-like for example.) Dr. Mechtler spends an inordinate amount of time describing how the tics the Leroy sts. are exhibiting are not "real" tics because they defy categorization!! However, as PANS parents, we know our kids' tics do not fit any category, it may show as finger-flicking, as eye and mouth stretching, as head jerks, nose touching, etc...and the interesting thing (!!??) with PANS the tics change (oh, joy)! They morph from one week to the next-- re: Dr. Trifiletti Dr. Mechtler appeared quite upset that Dr. T. had not contacted him about the patients? I wonder if it is because of HIPPA protection? I think parents must give permission/request before docs. can share any information? Also, Dr. Mechtler implied Dr. T. said that Mechtler's diagnosis was "absolutely garbage." On the contrary, I don't believe that Dr. T. ever said that--when asked, Dr. T. noted that "the diagnosis" (in general) of CD was a garbage diagnosis...meaning that everything was thrown in there--If you watch the original clip, Dr. T. NEVER implied that Dr. Mechtler's diagnosis was garbage! re: blaming the victim In the middle of this hour-long interview the reporter asks Mechtler point blank, "What is the cure?" He says first there must be TRUST in the doctor. Then he goes on as if implying that it is the naughty patients, parents, and media that are all to blame for the kids not being better yet. The most fascinating thing was the news reporter's expression through out -- and to follow her line of questioning. (e.g., She had contacted Swedo herself, personally, prior to the interview.) Towards the end the reporter tells the docs, that she thinks "they don't trust you" and that people see M. and M. as "partnered w/ the Dept. of Health." Sad, overall very sad.

It would be great to hear the answers to these Q.s The SC related questions seem to be so critical to this situation --

I won't be able to call in but my top questions would be: Q.1.) Dr. M.: Dr. T. has noted that this sudden onset of ticcing may have a physical root, something that may be an infectious trigger, (one such example being strep) can you please explain why you don't think it is possible that some type of infectious trigger could have triggered an anti-body reaction and be to blame for this sudden onset of ticcing in the girls? Since **Sydenhams Chorea may be more prevalent in adolescent girls (vs. boys post-puberty)? and that Sydenham's Chorea triggers strep-related ticcing -- rooted in the Basal Ganglia -- doesn't it make sense to DO a trial treatment of antibiotics for an infectious illness since we know for a fact that if virulent enough, an auto-immune reaction to an infectious agent may cause tic disorders? Q.2.) You were quoted as saying Dr. T. was a zealot. Can you please explain what you mean by that as it seems to me he has responded to the parents' call for help -- with medical bloodwork and follow-up antibiotics to treat for an evident infection? ___________________________________________ here is a quote from the WEMOVE website--re: age-related/sex-related Sydenhams Chorea, http://www.wemove.org/syd/syd_cau.html ** Also, as mentioned previously, some investigators suggest that sex hormones (e.g., the female hormone estrogen) may be a contributing factor in some instances of Sydenham's chorea. This is based upon various findings, including the fact that females are more commonly affected than males, particularly in the years around puberty, and that recurrences have been associated with estrogen therapy or pregnancy. (good find EAMom:)

--I had the same double-take when reading, it does seem contradictory from one statement to the next, re: Age based prevalence.

FANTASTIC !!! Thank you Dr. L, and thank you to the two families that appeared -- wonderful clip.

bump!

I found this online, it appears that anyone can submit to be an author on the "Batavian"...and there is a retraction now as to the reference to Dr. Swedo -- but again -- that is according to Howard O. on the "Batavian" (sorry I will be away from the forum for awhile as I suddenly feel the need to develop my own on-line news feed now, what a great idea! ) Who and what can be posted to The Batavian Submitted by Howard Owens on November 9, 2008 - 9:12pm As to the question who can be post to The Batavian, the simple answer is: Anybody. As to what you can post: Whatever you find interesting, or whatever you want to say. We'll only promote to the home page posts we believe have a general interest to the audience of Genesee County. We're pretty liberal about what we decide to put on the home page, but neither should you be disappointed if we don't promote it. The post will still appear in our own personal blog. AND HERE IS THE LINK TO THE BAT.. ARTICLE THAT SWEDO HAS NOT SEEN THE GIRLS NOR DID SHE SAY WHAT WAS PREVIOUSLY REPORTED IN THE BAT... http://thebatavian.com/howard-owens/statement-nimh-dr-swedo-has-not-seen-patients-cannot-confirm-conversion-disorder-diagno

Wauw ! Thank you for posting this ! This is huge ! Mr. Conversion Disorder caught in a(nother) lie ! ---what we don't know is if we will see a similar note re: the "quotes" attributed to Mechtler. (I am just sayin...

The quotes made in this article are incredible--Everyone on this forum should read this-- This type of nay-saying is keeping children sick and suffering across this country... How dare this man (who claims to diagnose conversion disorders weekly in his neurology practice(?) impute motives for these girls? He suggests that they will now get better from a placebo-effect of treatment?1 You have got to be kidding me... I guess if you think the illness is all in a child's head than you think the "cure" will be too--just too bad he didn't help earlier with some type of "placebo"(!) If it was that simple why didn't he "fix" it earlier? I would stop speaking to the press -- if it was me, unless the publicity was now the draw. It looks like we may have been "had" -- !!! the publisher/author of the Batavian website is named Howard Owens, and it appears, the comments re: DR. SWEDO, including who she has seen and what she has said (!), were publicly (?) disputed as the Batavian was supposedly told she did not say any of this-- I wonder if we will soon see a dispute of what Mechtler is said to have said as well?...check the facts please! here is the link. http://thebatavian.com/howard-owens/statement-nimh-dr-swedo-has-not-seen-patients-cannot-confirm-conversion-disorder-diagno

here is the link to the latest Dr. Drew episode -- w/ Dr. T.'s findings. I think Dr. Trifiletti is incredibly measured and well spoken in all of this -- not rushing to conclusions, but a very deliberate cautious response to the findings. Careful support offered to the families. -- measured careful trial of treatment. Thank you Dr,. T.! http://drdrew.blogs.cnn.com/2012/02/07/breaking-news-doctor-finds-pandas-connection-among-le-roy-teens/?hpt=dr_bn1 The two moms in this clip do a great job --

Below is the link to Drew show last night... Dr. Drew muddles around suggesting collaboration of doc.s.../ hmmm... for whose sake? who is he kidding? that comment must have been spontaneous. The PARENTS are wonderful on this clip--those moms come across as knowledgeable and concerned. Dr. Trifiletti is well spoken, measured, careful in reply AS ALWAYS. He comes across as a thoughtful professional in the midst of this madness. Well done Dr. T. http://drdrew.blogs.cnn.com/2012/02/07/breaking-news-doctor-finds-pandas-connection-among-le-roy-teens/?hpt=dr_bn1

The quotes made in this article are incredible--Everyone on this forum should read this-- This type of nay-saying is keeping children sick and suffering across this country... How dare this man (who claims to diagnose conversion disorders weekly in his neurology practice(?) impute motives for these girls? He suggests that they will now get better from a placebo-effect of treatment?1 You have got to be kidding me... I guess if you think the illness is all in a child's head than you think the "cure" will be too--just too bad he didn't help earlier with some type of "placebo"(!) If it was that simple why didn't he "fix" it earlier? I would stop speaking to the press -- if it was me, unless the publicity was now the draw.

(I wondered the same Mayzoo--Peglem said it was a mis-read.) ________________________________________________________ If, indeed there is a positive outcome with Dr. T.'s treatment (antibiotics/steroids/IVIG if necessary) this would be wonderful !! --and may break the case of PANS wide open -- certainly has caught attention -- which may have FAR reaching positive effects--whatever the outcome. My hope is that it is this simple, and that the girls are truly helped with Ps treatments. At least there is now the avenue to test and SEE if there is a treatment effect w/ Ps treatments for these girls. I hope Dr. T. has great success in treating. Anybody find the link for the Dr. Drew episode tonight? --does anyone know if Dr. Sw. did make a statement/appearance as noted on another thread?

I just received this from Beth Maloney -- a press release which she said she is distributing on behalf of Dr. Trifiletti. Wouldn't this be wonderful if the treatment brings relief for these girls! Press Release: February 6, 2012 LE ROY, NY TEENS: BEHAVIORS LINKED TO INFECTIONS Ramsey, NJ — February 6, 2012 — Rosario Trifiletti, MD has announced the results of the laboratory data that he collected in standardized fashion from eight of nine girls he examined in Le Roy, NY. National attention has been drawn to the plight of the teens who have been unable to control various bodily twitching and jerking movements. Dr. Trifiletti reported that five of eight girls show evidence of Streptococcus Pyogenes (common Group A strep) and seven of eight show evidence of infection with Mycoplasma Pneumonia (the bacteria that causes walking pneumonia). All eight girls tested show evidence of infection with at least one of those pathogens. Both of these bacterium have been associated with a PANDAS-like illness of sudden onset of motor and vocal tics. “A PANDAS-like illness is my working diagnosis, rather than a mass conversion disorder as others have suggested,” said Dr. Trifiletti. He has already started treating the girls with antibiotics and anti-inflammatory agents. When asked to comment on the continued insistence by Dr. Laszlo Mechtler that the girls have conversion disorder (or mass hysteria as Dr. Mechtler originally stated), Dr. Trifiletti said, “I'm confused by that because he's never actually seen or interviewed any of the nine girls I examined.” These findings provide a significant clue in the Le Roy High School mystery, but certainly many questions remain. Streptococcus Pyogenes and Mycoplasma Pneumonia are common pathogens that children throughout the world are exposed to every day. Why this town? Why this particular child and not another? Why such a curious presentation resembling Tourette syndrome? Until these questions are fully answered, the doctor said that the cluster will remain a mystery. “I suspect that genetic, environmental factors provide an immune background where the PANDAS-like response is possible to common pathogens. The infectious exposure is simply 'the straw that broke the camel’s back,'” said Trifiletti. However, the infectious exposure points the way to rational medical treatment for these children, which he said is of immediate importance. “Clearly, their response to the treatment I've started will be helpful in supporting my working diagnosis,” he added. As with most illnesses, Trifiletti said there is a complex interplay of genetic and environmental factors involved. As with all illnesses, psychological factors possibly play some role as well. “All we have done here is provided evidence for exposure to two infectious agents as potential factors,” said Trifiletti. “I encourage efforts to further explore genetic and other environmental factors that likely are playing an additional role here.” To reach Dr. Trifiletti contact: Telephone: 201-962-7284 Email: trifmd@gmail.com Website: http://www.site.neurokidsr.us For additional Information about PANDAS: http://www.pandasfoundation.org http://www.pandasnetwork.org http://www.nimh.nih.gov/health/publications/pandas/pandas-frequently-asked-questions- about-pediatric-autoimmune-neuropsychiatric-disorders-associated-with-streptococcal- infections.shtml http://www.askdrsears.com/topics/childhood-illnesses/ocd http://www.savingsammy.net

This was posted on another thread but I think it is worthy to note-- A Dr. Markowski (on faculty at SUNY) suggests that the Leroy situation may be Sydenham's Chorea, and he even states that symptoms may persist long after any sign of an infection (thank you!) He mentions Ps as well. His name should be on the list of PANS knowledgeable doctors. Here is the newsclip -- I found it quite encouraging really. http://rochester.ynn.com/content/top_stories/572334/healthy-living--can-pandas-be-ruled-out-/ Below is text from the accompanying article -- ____________________________________ ..."It seems to fit all the symptoms. "The facial tics, uncontrolled movements in the face." And the majority of the patients. "It's a condition that typically afflicts young girls." Dr. Vince Markowski has a theory; one that could solve a medical mystery. Markowski is a biological psychologist and a professor at SUNY Geneseo. He's been closely following the mystery illness in Le Roy in the media. He says the culprit may be a common bacterial infection. "It often occurs after an individual has been infected with strep. The tics and involuntary movements can occur months after the infection has cleared,” said Markowski, a biological psychologist. Closely associated with Pediatric Autoimmune Neuropsychiatric Disorders, or PANDAS, Sydenham's Chorea affects an important area in the brain; one that controls voluntary movement. "When they respond to the strep bacteria, the antibodies that they form also cross-react and they attack the cells of the basal ganglia." When this part of the brain becomes inflamed, loss of motor skills, headaches, and fatigue follows. In most cases, these symptoms clear up in months but they can persist for years. "The grimaces you see with some of the students that have appeared in the media. Some of the involuntary movement's in the head and in the arms." Markowski says the original diagnosis of conversion disorder, converting anxiety into physical symptoms, is certainly a possibility, but right now he says it's too early to rule anything out. "I think PANDAS or any other infectious agent should be considered." Either way, Markowski has bad news for those looking for a quick resolution. "I don't think we're going to get an answer quickly and I don't think we're going to get a complete and thoroughly satisfying answer ever,” he said. Many of the Le Roy families unsatisfied with the conversion disorder diagnosis have sought a second opinion. A neurologist from New Jersey, who saw nine of the Le Roy students, said this weekend PANDAS had not been fully excluded. The University of Rochester Medical Center has seen some of the girls affected by these symptoms. A spokesperson for the child neurology center it's still accepting those seeking a second opinion.

Thanks EAMom-- Wow! The Dad did a GREAT job and he has a good understanding of the potential influences -- I certainly hope this is solved soon for the sake of the girls and their parents.

Our d has been on 250/mg a day for over a year, 75 lbs. no issues thus far.