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thenmama

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

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Mechtler said on this interview, "if people can accept that stress causes ulcers, why can't they beleive it causes this" (meaning conversion disorder). It has been know since the early 80's that it is H. pylori that causes ulcers....not stress.

 

He also said Dr Swedo "unequivocally" agreed with his diagnosis yesterday and that this is not PANDAS. I would like to know if she truly said that. Does she truly think it is conversion disorder?

 

He also said recently more patients (I think he said three) came to DENT with a conversion disorder already given to them by a different neurologist, but that he (Mechtler) determined they actually had tics, "myoclonic" tics and that because of that, do not group them with the other girls he diagnosed with Conversion disorder. SO, are there more kids affected in Leroy with these same tics but this time Mechtler is misdiagnosing them with tics instead of misdiagnosing them with Conversion disorder? Still a misdiagnosis, just mixing it up a little? Myoclonic tics are what I have seen some of the Leroy girls have.

 

Colleen

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My husband and I watched. DH is the one who posed the ulcer question, as well as several others which they did not post. I believe the interviewer was screening the questions and comments, because we asked several they ignored. There were way too few posted for the number of people who had to be watching and commenting. The whole thing was quite frustrating. I do believe they truly believe what they are saying, but they are clearly angry at Dr. T for calling their CD diagnosis "garbage." Even though most of us agree, it probably wasn't smart of Dr. T to do so before seeing the girls. He must realize this, since he is being so PC and composed ever since.

 

Someone did ask what the problem with the patients seeing Dr. T, and Dr. M responded that the girls and Dr. Trifiletti should be coordinating through Dent since "we are the treating physicians." Treating???

 

The thing I don't get and that we tried to ask the doctors is why this insistence that Dr. Swedo is the only doctor qualified to comment or diagnose PANDAS. They kept saying that since she wrote the original paper in 1998, she's the expert. To dismiss Dr. T who has actually treated hundreds of pandas patients, as opposed to Swedo who doesn't treat at all outside her studies, is crazy! Swedo's criteria is so narrow compared to what we all know can actually be Pandas that I'm a bit worried she might not diagnose pandas even if she does see these girls. Maybe the parents are smart enough to rely on Dr. T, an actual Pandas treating physician. I sure hope his treatments show results.

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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.

Edited by T.Mom

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Someone did ask what the problem with the patients seeing Dr. T, and Dr. M responded that the girls and Dr. Trifiletti should be coordinating through Dent since "we are the treating physicians." Treating???

 

 

Wow, how clueless and arogant they are if they can't even realize that these families have dumped them like a hot potato. There WERE the treating physicians.

 

I also agree with you about Dr. T. vs. Swedo. Swedo is in the NIMH Ivory Tower and sees a very limited a select subset of PANDAS kids (those who area already diagnosed and then make their way to NIMH and fit the criteria nicely). Dr. T. is the real deal and has way more experience with lots of kids.

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Even though most of us agree, it probably wasn't smart of Dr. T to do so before seeing the girls. He must realize this, since he is being so PC and composed ever since.

 

 

Yeah, at the time he didn't realise those comments were going to be broadcasted. I'm kind of glad he made them though...I'll bet there are a lot of folks in the medical community that are thinking the same thing.

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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.

 

Did anyone see the interviews with Marge Fitzsimmons (most recently on the Cooper Anderson show)...she obviously has a VERY high level of trust in her doctors. She keeps saying she has to believe it's CD b/c that means she will get better. Hmmm... maybe it takes more than just "trust".

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I'm really confused by Dr. Conversion Disorder's statments with respect to Swedo.

 

He said she told him that she can't comment because she hasn't seen the patients, and is prevented from publicly speaking about these cases because of her position at the NIH, but then he immediately says she agrees with him that it's conversion disorder. Isn't this publicly commenting on this issue?

Of course, we'll never actually know if that's what she really said.

 

And I guess we should all stay off the "evil internet" because it could interfere with our abilities to make health care desicions because it causes us to question our doctors' abilities. We are all just supposed to blindly drink the koolaid and not seek 2nd opions........Puhleeze...........

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re: Dr. Trifiletti

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!

 

 

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

Edited by smartyjones

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My husband and I watched. DH is the one who posed the ulcer question, as well as several others which they did not post.

 

That was an excellent question, especially since he had said earlier in the interview that ulcers were caused by stress! (He used a bad example, didn't he?)

 

Does anyone else find it scary that Dent diagnoses conversion disorder on a daily basis?

 

So, Dent is implying that Dr. T. isn't "reputable"...

 

As far as I can tell from his resume, Dr. T. is extremely reputable, certainly more so than the Dent doctors.

 

Graduate of St. Joseph's Regional High School - Montvale, NJ - valedictorian

 

B.S. Chemistry, Seton Hall University - magna cum laude - salutatorian

 

M.D. Johns Hopkins Unversity School of Medicine (JHMI), Baltimore, MD

 

Ph.D. in Neuropharmacology (mentor Dr. Solomon Snyder), JHMI, Baltimore, MD

 

Pediatrics Residency - Babies Hospital of Columbia-Presbyterian Medical Center, NYC, NY

 

Neurology Residency - Neurological Institute of New York (Columbia) , NYC, NY

 

Board certified in Neurology with special qualification in Child Neurology, 1992.

 

1991-1994 Assistant professor of Neurology, Columbia-Presbyterian Medical Center

 

1994-2002 Assistant professor of Neurology, Weill-Cornell Medical Center

 

2002-2003 Chief, Child Neurology, St. Vincent's, Manhattan

 

2003-2006 Chief, Child Neurology, UMDNJ-Newark

 

2007-2009 Staff neurologist, Morristown and Overlook Hospitals

 

Author of over 80 scientific papers, mostly on basic and clinical child neurology

 

In clinical practice since 1991.

Edited by EAMom

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re: Dr. Trifiletti

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!

 

 

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.

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Ok...so here is my question.... why have none of these families gone to see Swedo? I mean - if I could take my kid to Swedo for free.... I would run.

 

 

I was wondering the same thing????? :(:unsure:

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____________________________

 

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.

 

.

Sincerely,

Carol

http://cantbreathesuspectvcd.com

 

 

That is exactly what he is saying....the very essence of Conversion Disorder. Neurologic Psychogenic Illness---fake tics----not a "real tic" that is caused by physiological synaptic issues, neurotransmittor issues rather tics being caused by their own mind. From stress. Both he and McVige alluded to this fact, in that, the girls'symptoms are not consistent with their training in neurology due to tics crossing midline, doing more when being watched, hearing others etc.

 

Although, they said it was "unconscious" they were still indicating that it was within their power to stop if they could get to root cause of their stressors. Just like Hysterical Blindness- not really Blind although one perceives and behaves as blind. Have to be convinced they are not and wala- can "see" again.

 

That's exactly waht I got out of it- yes, a more or less "fake" tic disorder. Like pseudo seizures which are not real seizures either.

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Ok...so here is my question.... why have none of these families gone to see Swedo? I mean - if I could take my kid to Swedo for free.... I would run.

 

 

I was wondering the same thing????? :(:unsure:

 

 

I would go, but I would keep it private.

Edited by T.Mom

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Ok...so here is my question.... why have none of these families gone to see Swedo? I mean - if I could take my kid to Swedo for free.... I would run.

 

 

I was wondering the same thing????? :(:unsure:

 

 

I would go too, but I would most likely keep it private at this point.

 

Well, one thing that might put me off if I were one of the families, is that Dent is 'recommending' they go (just like they recommended they go to Dr. Mink-pandas naysayer for a 2nd opinion). So, they may be taking that recommendation with a grain of salt. They may also see NIH/NIMH as part of the same gov. as the NY health dept...not a lot of trust there.

 

I guess part of me would be leary about going to Swedo for an opinion, if Dr. CD is saying she already agrees with him. What would be the point, if he's already advertising what her "second" opinion would be? Really, the recent press (even if it's due to editing) does not make Swedo look too sympathetic at this point.

 

If they go to the NIH (conversion disorder group) they're not going to get any type of a PANDAS workup, just functional MRI's and stuff. I don't know what Swedo would do. Originally, I was all for them going...now I'm not so sure. I don't even think NIMH would run the Cunningham test on the kids. So, I'm not sure what would be the point of going only to have Swedo say "well, they don't fit into the five criteria for this technical reason". I think there are a lot of weird politics at NIMH, and Swedo is very conservative, so even if the girls are very PANDAS-like or SC-like, if they don't match up correctly to one of the predefined diagnoses, I can see NIMH giving them a CD diagnosis, I hate to say.

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Perhaps this is the selfish devil on my shoulder, but the only thing that I'm excited about with this entire Leroy fiasco is Dr T's analysis of the data and what rocks it may lead him to look under that may in someway benefit more than just the girls in NY. I don't think the media coverage is doing anybody any good, nor the cause in general. But of all the doctors blazing the PANS trail, Dr T appears to be the most inquisitive with brilliant instincts. I loved the way he ended his official statement to the press with several investigative questions and I have no doubt that he is more interested in the answers to those questions than what M & M call him or what Seigal thinks of his office.

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