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thenmama

Mechtler and McVige: Live Chat Tomorrow 5:30 pm EST

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Saw that Drs CD and McV will be online for a live video chat tomorrow. The news site hosting it states "The chat provides you an opportunity to pose your questions."

 

I have many questions I'd like to ask them so I plan to attend. And maybe I'll load the chat on every computer in the house and will give the kids and dh questions to submit. If only the dog could type, too...

 

Would be great for the PANS community to represent... the more the merrier I say!

 

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A question to ask the fine Drs :

If your child started ticcing tomorrow, would you doll out the conversion diagnosis or dig juuuuust a tincy bit further, maybe run a, lets say, strep or mycoplasma test???

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I actually asked one of the doctors in the hospital what he would do if this happened to his own kid.

He said "nothing. She got better last time, and she'll get better this time." This was actually as she was practically convulsing. I said "She only got better last time after 3 weeks straight of zithromax."

 

I then asked him how he would explain that this happened every time she had strep. He said "Strep confuses me." and ran away from me.

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I'll join the video chat if I can. Here's my bottom line:

 

I don't care if it's PANDAS or not. I don't care if it's environmental or not. Frankly, I wouldn't wish either on those girls.

 

But I also don't wish this, "It's all in your head" horse-poo that constitutes the non-diagnosis of all diagnoses, Conversion Disorder. How patronizing, belittling and dismissive can you get, for crying out loud?!?!

 

Admit you don't know. Admit you're confused. And then exhaust EVERY possible angle. And since the peer-reviewed literature, and members of your own heralded Western medical community acknowledge microbial, viral and fungal origins and/or catalysts for these types of behaviors, explore them and eliminate them from the picture in a measured, thorough, scientific way.

 

Don't sit on your high-horse and say I have this degree and I work for this institution and there's one factor that would suggest this girl be eliminated from this potential diagnosis (she's over 12 years of age, for example), and then pronounce it "not a possibility" based on that alone. That is disingenuous. That is lacking in intellectual curiosity. That is not worthy of respect. That is a travesty. :angry:

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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:)

Edited by T.Mom

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Excellent questions posted by T.Mom- I will be working during the chat- & frankly, probably do not have the guts to do it anyway-- but someone please print her post and ask that-- WORD for WORD!!

and then post their answers!

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Just to add to T.Mom's list.

 

How can a PANDAS-like or Sydeham's Chorea-like illness be so easily ruled out?

 

--did you know Sydenham's Chorea affects mostly girls? 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.

--did you know Sydenham's Chorea (and PANDAS as well) are POST-infectious auto-immune diseases. This means symptoms are KNOWN to occur in the absence of a current active infection. Why would NOT finding a CURRENT infection rule out these diseases? Do you know what post-infectious means?

--Why did you only run ASO's on 6 of the girls. Why did you then misinterpret the results by referring to NIMH's cut off for upper limit of normal when the blood was not run at NIMH? Don't you understand that you need to use your own lab's normal values when interpreting these tests?

--did you test for other infectious triggers (mono, mycoplasma, lyme) or do throat cultures, paired ASO's (to check for rising titers), or anti-dnase B tests?

--did you know that both PANDAS and SC can cause psuedo (non-eplileptic) seizures? didn't you say these girls had these types of non-epileptic ("not real") seizures?

--did you know that strep can hide out in non-throat locations? Did you know that a 2003 study by Kaplan and Shet showed that ASO only rises in 53% of those with cultureable strep?

 

And, what scientific evidence is there to explain the pathophysiology of Conversion Disorder? PANDAS/PANS and SC have molecular mimicry. PANDAS has mouse models (Columbia University) which demonstrate that the strep antibodies themselves (in the absence of an infection) can trigger symptoms. Is there any real science behind Conversion Disorder? I know the theory is that there is some "stress" and then somehow (magic? the tic fairy?) this stress "converts to real physical symptoms". Is there any science there? or are we supposed to "just believe?"

 

Did you know that even though Acute Rheumatic Fever and SC are "exceedingly rare" in this country, outbreaks (eg. in Army Barracks) have been reported. What makes you so certain that the same thing couldn't happen in a high school with PANDAS/PANS if the right virulant strain of strep were to come along?

 

Did you know that an increase in tics with a stressful event is actually completely consistent with a PANDAS diagnosis? Did you know that Stress can open up the blood brain barrier? Did you know that an open bbb is what allows the rogue antibodies to make contact with the basal ganglis, triggering symptoms in PANDAS kids? Did you know that stress, infection, and inflammation all affect BBB permiability? Did you know that if we could completely and permanently close the bbb in PANDAS kids, they would be cured, even if the infection(s) were not addressed?

 

Why did you lie about Swedo, saying she would come forward publicly to support your Conversion Disorder diagnosis?

 

Did you know that Swedo recently clarified that PANDAS can and does occur in children beyond the age of 12? And did you know that Sydenham's Chorea can also occur in teens and young adults?

 

Did you know that 50% of those with SC will spontaneously recover after several months. Do you think this may be the reason some of the girls (you claim) are getting better, and not because of your Conversion Disorder treatment?

Edited by EAMom

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Just to add to T.Mom's list.

 

How can a PANDAS-like or Sydeham's Chorea-like illness be so easily ruled out?

 

--did you know Sydenham's Chorea affects mostly girls? 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.

--did you know Sydenham's Chorea (and PANDAS as well) are POST-infectious auto-immune diseases. This means symptoms are KNOWN to occur in the absence of a current active infection. Why would NOT finding a CURRENT infection rule out these diseases? Do you know what post-infectious means?

--Why did you only run ASO's on 6 of the girls. Why did you then misinterpret the results by referring to NIMH's cut off for upper limit of normal when the blood was not run at NIMH? Don't you understand that you need to use your own lab's normal values when interpreting these tests?

--did you test for other infectious triggers (mono, mycoplasma, lyme) or do throat cultures, paired ASO's (to check for rising titers), or anti-dnase B tests?

--did you know that both PANDAS and SC can cause psuedo (non-eplileptic) seizures? didn't you say these girls had these types of non-epileptic ("not real") seizures?

--did you know that strep can hide out in non-throat locations? Did you know that a 2003 study by Kaplan and Shet showed that ASO only rises in 53% of those with cultureable strep?

 

And, what scientific evidence is there to explain the pathophysiology of Conversion Disorder? PANDAS/PANS and SC have molecular mimicry. PANDAS has mouse models (Columbia University) which demonstrate that the strep antibodies themselves (in the absence of an infection) can trigger symptoms. Is there any real science behind Conversion Disorder? I know the theory is that there is some "stress" and then somehow (magic? the tic fairy?) this stress "converts to real physical symptoms". Is there any science there? or are we supposed to "just believe?"

 

Did you know that even though Acute Rheumatic Fever and SC are "exceedingly rare" in this country, outbreaks (eg. in Army Barracks) have been reported. What makes you so certain that the same thing couldn't happen in a high school with PANDAS/PANS if the right virulant strain of strep were to come along?

 

Did you know that an increase in tics with a stressful event is actually completely consistent with a PANDAS diagnosis? Did you know that Stress can open up the blood brain barrier? Did you know that an open bbb is what allows the rogue antibodies to make contact with the basal ganglis, triggering symptoms in PANDAS kids? Did you know that stress, infection, and inflammation all affect BBB permiability? Did you know that if we could completely and permanently close the bbb in PANDAS kids, they would be cured, even if the infection(s) were not addressed?

 

Why did you lie about Swedo, saying she would come forward publicly to support your Conversion Disorder diagnosis?

 

Did you know that Swedo recently clarified that PANDAS can and does occur in children beyond the age of 12? And did you know that Sydenham's Chorea can also occur in teens and young adults?

 

Did you know that 50% of those with SC will spontaneously recover after several months. Do you think this may be the reason some of the girls (you claim) are getting better, and not because of your Conversion Disorder treatment?

 

 

It would be great to hear the answers to these Q.s :)

The SC related questions seem to be so critical to this situation --

Edited by T.Mom

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Ugh. It was so gross! I had to run to the pharmacy right afterward so didn't get a chance to post an update. The video of it posted here

 

I tried getting our questions in but there was a lag and either some submissions weren't being registered or they may have been screening them because a lot of what I submitted didn't appear in the chat window and were not presented to them. I did get at least one of EA Mom's questions about SC through-- but I was annoyed b/c she didn't read them the whole thing and left some of the more important things they should have had to address out.

 

Interestingly, Dr CD said that Swedo said he can share that she consulted with him on the case and does not believe it is PANDAS but b/c of her job at NIMH she cannot comment on their dx. Hmmm...

 

He also said that PANS has a very active internet community.

 

They came across as condescending and misinformed. They were basically just posturing. I still think Mechtler comes off as a sociopath/personality disordered.

 

TH

Edited by thenmama

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So I will admit I did not watch the whole thing- I skipped around, but watch the last 10 minutes straight. I did not think it was totally horrible- I mean, it was nothing new- though I thought it was very harsh on Dr T.

Please do not throw tomatoes at me--- I actually felt bad for the doctors at the end - they are obviously feeling very attacked. I am starting to wish ( for everyone's sake; kids, Dr T the Dent docs) that all this media frenzy just stop and everyone (docs, media, the public)accept that the either :

 

a: the girls' do not accept the docs' conversion disorder diagnosis and they have the right to do that and go see what ever doctor they want

 

or

 

b: the ones that accept the conversion diagnosis just stay at Dent. I think they will be missing a chance for a cure if they do that, but maybe their circumstances are not so horrific- or they would, most likely, not stop looking and accept that diagnosis. I bet lots of mild PANDAS or OCD kids live satisfactorily without treatment!

 

Probably 90% of us were told that there was nothing "real" wrong with our kids- did we accept it? No. I am sure the parents in Le Roy are just as determined and resourceful as everyone on here.

I trust that they can make the best choices for their kids.

 

I also think Mechtler and McVige are doing what they think is best- I think their intentions are good. I just wished they realized that medical science does not have every answer yet. I will say that I steer clear of any doctor who thinks that we already have figured out everything there is to know about the body.

 

I am probably making no sense- so you can stop reading me now ;)

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I also think Mechtler and McVige are doing what they think is best- I think their intentions are good. I just wished they realized that medical science does not have every answer yet. I will say that I steer clear of any doctor who thinks that we already have figured out everything there is to know about the body.

 

 

I think you are a very kind and generous soul. I wish I had your generosity of spirit, truly. :D

 

It would be easier for me to think that Dr. CD and Dr. Minion really were on a high road if they weren't sniping at Dr. T. and trying to discredit his attempts to offer another point of view, and if, as ready as they are to broadcast the fact that their patients are getting better and that they need to stay away from social media and THE media, they were equally willing to disclose the actual battery of tests that were performed on these same patients in the interest of scientifically eliminating other potential causes.

 

I can't help but feel that Conversion Disorder is the "lazy doctor's answer," and therefore not "what's best" for the patient but rather what's on hand for the doc. It's too easy, too convenient, and too dismissive.

 

But if you'd like to send me some of your goodwill vibes teleknetically, I'll see if I can adjust my attitude! :P

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Ugh. It was so gross! I had to run to the pharmacy right afterward so didn't get a chance to post an update. The video of it posted here

 

I tried getting our questions in but there was a lag and either some submissions weren't being registered or they may have been screening them because a lot of what I submitted didn't appear in the chat window and were not presented to them. I did get at least one of EA Mom's questions about SC through-- but I was annoyed b/c she didn't read them the whole thing and left some of the more important things they should have had to address out.

 

Interestingly, Dr CD said that Swedo said he can share that she consulted with him on the case and does not believe it is PANDAS but b/c of her job at NIMH she cannot comment on their dx. Hmmm...

 

He also said that PANS has a very active internet community.

 

They came across as condescending and misinformed. They were basically just posturing. I still think Mechtler comes off as a sociopath/personality disordered.

 

TH

 

____________________________

 

I watched the whole hour long interview, and I agree with all that "thenmama" wrote above. I urge everyone to watch it, because there were subtle and not so subtle things going on, in their answers, and in their non-verbal behaviors, in response to questions posed by the interviewer. They did behave as if under siege, and if they weren't so blind and arrogant in their beliefs, I might have felt more sorry for them.

 

They were at a loss for a reply, when a question was raised about how ulcers used to be thought of as being caused by psychological stress, but that later on, a bacteria that causes ulcers was found (H. pylori), so, the questioner went on--why couldn't a similar thing be true for the girls--that it's not a psychological ailment, but a physical infection, etc.

 

Dr. Metchler said (as "thenmama" stated) that on Wednesday, he and Dr. Sue Swedo spoke by phone FOR AN HOUR, and that Dr. Swedo thinks it is unlikely that the Le Roy girls have PANDAS, but that she can't say this openly because she works for NIMH.

 

Dr. M. recommended that the Le Roy girls go to see Dr. Swedo (because, if this is the case), she agreed with Dr. M.

 

Dr. M. said that those girls who won't go to see him and Dr. McVige at DENT, have families that think that there's a "conspiracy" going on, with Dr. M. and Dr. McVige.

 

Dr. M. recommended a neurologist in Rochester named Dr. Mink, but someone said(can't remember who said this) Dr. Mink doesn't believe in PANDAS!

 

Dr. M. said that he and Dr. McVige know a lot about PANDAS, because they talked to PANDAS specialists (!!).

 

Dr. M. said that the internet is VERY DANGEROUS, and that there's a group (wonder who he meant...) on the internet who are passionate about PANDAS.

 

Dr. M. criticized Dr. Trifiletti for calling Dr. M's diagnosis of Conversion Disorder a "garbage diagnosis", supposedly before Dr. T. saw the students, and Dr. M. didn't seem to like Dr. Drew too much either (not sure why--maybe for having environmentalist lawyer Erin Brockovich on his show?).

 

Dr. McVige said that the railroad spill from 1970 was so "far away" (only 3 miles!) that it couldn't be causing any harm to the school.

 

Dr. M. said that he and Dr. McVige have seen some young people whose families thought they had CD (Conversion Disorder), but who actually had a real tic disorder, but, that he didn't put these patients into the same category as the Le Roy girls. I wonder why not??? I believe he thinks the Le Roy girls have a false tic disorder.

 

See the whole video, at http://www.buffalonews.com/video/ (click on the word VIDEO, at top left) and see what you all think. If this doesn't work (they may have changed the top video), look a little further down, to where it shows a video called "Chat with neurologists about Le Roy situation".

 

Sincerely,

Carol

http://cantbreathesuspectvcd.com

Edited by concerned lady

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Yes, Dr. Mechtler, we are passionate about PANDAS and you would be too if your child suffered from PANDAS.

 

I would like to know WHO the Internet is dangerous for? Is it dangerous for doctors like you who stand by their very bogus diagnosis of conversion even though an extremely credible pediatric neurologist/PANDAS specialist is finding infectious causes?

 

Is it dangerous to you because determined parents see through your garbage diagnosis and will find the true cause of why their children are suffering? It is dangerous because you repeatedly violate HIPAA regulations and that can easily be tracked because of ther Internet?

 

 

Colleen

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