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

[EAMom]

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.

 

Yeah, I think Dr. T. is the most "out of the box" thinker of the PANDAS docs. He IS a bit of a zealot, but in a GOOD way, he is passionate and committed to helping PANDAS kids. Maybe that is why he decided to go into private practice,so he could actually TREAT pandas kids. While I have great respect for Swedo, her very cautious and conservative approach (eg. what NIMH says about treatment on their website "CBT and psych. drugs" only) hasn't been terribly helpful for those in the PANDAS community. Perhaps Swedo is somewhat bound by being at NIMH, but that makes it difficult for those of us that have sick kids TODAY (or yesterday), and can't wait 10-20 years for some study to definitively prove that long term antibiotics (and IVIG) are safe/appropriate for PANDAS kids. Yes, we need docs like Swedo if we ever want NIMH/mainstream docs to change, but we also need Dr. T. to blaze the trails and treat kids TODAY.

[thenmama]

Here's my 2 cents about the PANS docs...

 

Dr T is a clinician. And he's been an academic and yes he researches-- but he does so through the lens of clinical practice: What is he seeing most consistently in the kids he treats? What's working for them? What's not? How come? What's the underlying biological mechanism responsible for what he's finding as a treating doctor and how can that knowledge be used to treat them better or more effectively? His passion and interest lies in working directly with patients and using his training, expertise, and skills to diagnose and treat those patients-- including breaking ground and thinking outside of the box if the end result will benefit his patients, as well as other doctors and their patients. You could think of it as: his profession is medical doctor, his occupation (how he pays the bills) is MD clinical practice-- treating patients. For him, career success would most likely be measured by his skill in treating patients, the outcomes for those he treats, and probably how his discoveries and methods are adopted in the practices of others in the field.

 

Swedo is a medical doctor by profession and her occupation is medical researcher (government employed). She's a medical scientist who researches the causes and treatments of neuropsychiatric illnesses in a research lab context-- she explores theories, tests hypotheses, synthesizes information, conducts clinical trials, publishes medical-scientific papers, etc. She also has to secure funding, navigate the bureaucratic structure in order to support and advance the work, etc. There will be politics in anything that involves people or groups of people and their beliefs, ideals, or money. There are more politics in play in things that involve governments, money, and politicians. Swedo's role in PANS, beyond her initial discovery, is to continue her research and work on the administrative and political fronts to secure its place in medicine, continue to investigate its etiology, provide evidence for its existing treatments, and further research other possibilities. She may be a scientist first, but she also has to act like a politician would to advance a cause. She may care about the kids with PANS as much as the docs who treat PANS in clinical practice, but remember, too, that her career success is measured by the reach and impact of her research and publications. Taking a step away from our vantage as PANS parents-- we can also see that Swedo's professional reputation and her value/mark as a medical researcher depend on defining PANS and its treatments and securing its place in medicine. This doesn't automatically conflict with serving the best interests or most immediate needs of the children who have PANS, but sometimes it might.

 

I think Swedo/NIMH could do more more to make things better for patients now, but they seem only to be working behind the current to provide evidence for what they already know/believe so the medical community will know/believe it, too. And PANS is Swedo's discovery, so her reputation and professional worth are tied to its recognition and acceptance. I personally have a problem with her (perceived) ownership of it. She's really not the final word. She found it, but others are the ones in the trenches and actively addressing it now. NIMH and the public, media and other health professionals need to look beyond Swedo and her work. The PANS docs in clinical practice are the ones who are going to be most attuned to its various presentations and nuances. I'd put more stock into the opinion of someone who evaluates, diagnoses, and treats many PANS patients than I would in someone who works in a more hands-off way in a research setting and whose criteria are developed and implemented in order to further the cause, not help the individual patients (in the short term while she advances the medical status of PANS- the illness/condition). I'm not suggesting Swedo's aims are just selfish/career-driven. She is clearly passionate about her work and without her so many of our children would still be misdiagnosed and suffering. Her research should serve many kids like ours in the long run. She really has to operate the way she does in order to accomplish the goal of securing PANS' place in medical science and practice. Because of this she should not be seen as the final word when it comes to actual patients and individual (or small groups of) patients. It doesn't matter what she really believes or knows if publicly expressing it could undermine that goal. Her objective right now is simply to advance the case of PANS and we need her to, as Tim Gunn would say, carry on and make it work.

 

Also I'd suspect a lot of politics are in play re: LeRoy. Swedo's a gov't researcher, there are also gov't CD researchers involved, and there are probably myriad other factors and considerations behind the scenes. She needs her position, she needs to maintain favorable relationships, and she needs to continue to receive funding for her work. When it comes to the LeRoy situation, I could imagine multiple scenarios in which those things could be threatened.

 

 

Anyway, I'm sorry if this is type ridden or only partially coherent--I'm sick with a sinus infection and virus on top. Between that and the meds, I'm done and I'm taking my own cue and going to bed now

 

 

edited to clarify and complete a half-written sentence

Edited February 12, 2012 by thenmama

[EAMom]

Anyway, I'm sorry if this is type ridden or only partially coherent--I'm sick with a sinus infection and virus on top. Between that and the meds, I'm done and I'm taking my own cue and going to bed now

 

What you said was totally coherent and makes perfect sense. Feel better soon!

[concerned lady]

Here's my 2 cents about the PANS docs...

 

Dr T is a clinician. And he's been an academic and yes he researches-- but he does so through the lens of clinical practice: What is he seeing most consistently in the kids he treats? What's working for them? What's not? How come? What's the underlying biological mechanism responsible for what he's finding as a treating doctor and how can that knowledge be used to treat them better or more effectively? His passion and interest lies in working directly with patients and using his training, expertise, and skills to diagnose and treat those patients-- including breaking ground and thinking outside of the box if the end result will benefit his patients, as well as other doctors and their patients. You could think of it as: his profession is medical doctor, his occupation (how he pays the bills) is MD clinical practice-- treating patients. For him, career success would most likely be measured by his skill in treating patients, the outcomes for those he treats, and probably how his discoveries and methods

 

Swedo is a medical doctor by profession and her occupation is medical researcher (government employed). She's a medical scientist who researches the causes and treatments of neuropsychiatric illnesses in a research lab context-- she explores theories, tests hypotheses, synthesizes information, conducts clinical trials, publishes medical-scientific papers, etc. She also has to secure funding, navigate the bureaucratic structure in order to support and advance the work, etc. There will be politics in anything that involves people or groups of people and their beliefs, ideals, or money. There are more politics in play in things that involve governments, money, and politicians. Swedo's role in PANS, beyond her initial discovery, is to continue her research and work on the administrative and political fronts to secure its place in medicine, continue to investigate etiology, and provide evidence for its existing treatments and further research other possibilities. She may be a scientist first, but she also has to act like a politician would to advance a cause. She may care about the kids with PANS as much as the docs who treat PANS in clinical practice, but remember, too, that for her career success is measured by the reach and impact of her research and publications. Taking a step away from our vantage as PANS parents-- we can also see that Swedo's professional reputation and her value/mark as a medical researcher depend on defining PANS and its treatments and securing its place in medicine. This doesn't automatically conflict with the best interests of the children who have PANS, but sometimes it might.

 

I think Swedo/NIMH could do more more to make things better for patients now, but they seem only to be working behind the current to provide evidence for what they already know/believe so the medical community will know/believe it, too. And PANS is Swedo's discovery, so her reputation and professional worth are tied to its recognition and acceptance. I personally have a problem with her (perceived) ownership of it. She's not the final word. She found it, but others are in the trenches and actively addressing it now. NIMH and the public, media and other health professionals need to look beyond Swedo and her work.

 

Anyway, I'm sorry if this is type ridden or only partially coherent--I'm sick with a sinus infection and virus on top. Between that and the meds, I'm done and I'm taking my own cue and going to bed now

 

Great points!

 

To help your sinus infection, are you doing any nasal irrigations? Please see my "sinus tips" (many of these sinus tips are from Dr. Robert Ivker's book "Sinus Survival"), on webpage 10 of my website. See Appendix A (sinus tips) at this link:

http://cantbreathesuspectvcd.com/page10.html

 

Sincerely, Carol

Edited February 12, 2012 by concerned lady

[thenmama]

Thanks for your well wishes and Carol, thanks for the resource and tips.

 

I'm feeling much better this morning.

[oivay]

Well, Dr. Conversion disorder has cured them by taking away their internet access, texting, and facebook...........

 

http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ

 

Granted, this is the Post, so you can't necessarily believe a word in it...........

 

"Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers.

 

“My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ”

 

 

Read more: http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ#ixzz1mB0Sqay3"

[tpotter]

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.

 

 

Maybe some have. But, Swedo won't talk, because she respects HIPPA, and she probably can't, anyway.

[oivay]

And how bout this one........

 

http://www.huffingtonpost.com/lloyd-i-sederer-md/le-roy-illness_b_1251202.html

 

This is from the New York State Medical Director of Mental Health, Lloyd I. Sederer

 

The Le Roy adolescents need to continue under the care of specialists, like neurologists and infectious disease experts, as well as their family doctors. They, as well as their families, should consider counseling if they believe it would be helpful to assist in managing the stress of these symptoms and the concerns they raise.

 

Why would they need an infectious disease expert for a conversion disorder??????

[911RN]

Here's my 2 cents about the PANS docs...

 

Dr T is a clinician. And he's been an academic and yes he researches-- but he does so through the lens of clinical practice: What is he seeing most consistently in the kids he treats? What's working for them? What's not? How come? What's the underlying biological mechanism responsible for what he's finding as a treating doctor and how can that knowledge be used to treat them better or more effectively? His passion and interest lies in working directly with patients and using his training, expertise, and skills to diagnose and treat those patients-- including breaking ground and thinking outside of the box if the end result will benefit his patients, as well as other doctors and their patients. You could think of it as: his profession is medical doctor, his occupation (how he pays the bills) is MD clinical practice-- treating patients. For him, career success would most likely be measured by his skill in treating patients, the outcomes for those he treats, and probably how his discoveries and methods are adopted in the practices of others in the field.

 

Swedo is a medical doctor by profession and her occupation is medical researcher (government employed). She's a medical scientist who researches the causes and treatments of neuropsychiatric illnesses in a research lab context-- she explores theories, tests hypotheses, synthesizes information, conducts clinical trials, publishes medical-scientific papers, etc. She also has to secure funding, navigate the bureaucratic structure in order to support and advance the work, etc. There will be politics in anything that involves people or groups of people and their beliefs, ideals, or money. There are more politics in play in things that involve governments, money, and politicians. Swedo's role in PANS, beyond her initial discovery, is to continue her research and work on the administrative and political fronts to secure its place in medicine, continue to investigate its etiology, provide evidence for its existing treatments, and further research other possibilities. She may be a scientist first, but she also has to act like a politician would to advance a cause. She may care about the kids with PANS as much as the docs who treat PANS in clinical practice, but remember, too, that her career success is measured by the reach and impact of her research and publications. Taking a step away from our vantage as PANS parents-- we can also see that Swedo's professional reputation and her value/mark as a medical researcher depend on defining PANS and its treatments and securing its place in medicine. This doesn't automatically conflict with serving the best interests or most immediate needs of the children who have PANS, but sometimes it might.

 

I think Swedo/NIMH could do more more to make things better for patients now, but they seem only to be working behind the current to provide evidence for what they already know/believe so the medical community will know/believe it, too. And PANS is Swedo's discovery, so her reputation and professional worth are tied to its recognition and acceptance. I personally have a problem with her (perceived) ownership of it. She's really not the final word. She found it, but others are the ones in the trenches and actively addressing it now. NIMH and the public, media and other health professionals need to look beyond Swedo and her work. The PANS docs in clinical practice are the ones who are going to be most attuned to its various presentations and nuances. I'd put more stock into the opinion of someone who evaluates, diagnoses, and treats many PANS patients than I would in someone who works in a more hands-off way in a research setting and whose criteria are developed and implemented in order to further the cause, not help the individual patients (in the short term while she advances the medical status of PANS- the illness/condition). I'm not suggesting Swedo's aims are just selfish/career-driven. She is clearly passionate about her work and without her so many of our children would still be misdiagnosed and suffering. Her research should serve many kids like ours in the long run. She really has to operate the way she does in order to accomplish the goal of securing PANS' place in medical science and practice. Because of this she should not be seen as the final word when it comes to actual patients and individual (or small groups of) patients. It doesn't matter what she really believes or knows if publicly expressing it could undermine that goal. Her objective right now is simply to advance the case of PANS and we need her to, as Tim Gunn would say, carry on and make it work.

 

Also I'd suspect a lot of politics are in play re: LeRoy. Swedo's a gov't researcher, there are also gov't CD researchers involved, and there are probably myriad other factors and considerations behind the scenes. She needs her position, she needs to maintain favorable relationships, and she needs to continue to receive funding for her work. When it comes to the LeRoy situation, I could imagine multiple scenarios in which those things could be threatened.

 

 

Anyway, I'm sorry if this is type ridden or only partially coherent--I'm sick with a sinus infection and virus on top. Between that and the meds, I'm done and I'm taking my own cue and going to bed now

 

 

edited to clarify and complete a half-written sentence

 

thenmama,

I absolutely agree with whatt you are saying. Through the course of my son's 7 year "illness" of LKS, CAPD and suspected PANDAS---I have had the opportunity to go to many clinicians and 3 "researchers." One researcher in Philly, one at LSU and one quasit researcher/clinician at Chapel Hill. There are totally different mindsets between the clinicians treating patients in the office and the researchers doing what they do to publish or perish. Politics are definitely part of the big picture with the researchers.

 

Our latest Neurologist who is not a complete naysayer on PANDAS states that my son's case is "interesting" in reference to cycling of tics and OCD that occurs after Strep infection, however, he plainly states he is not a researcher, the jury is still out and he is not sure what the correct path for treatment is- even if a child is true PANDAS. As a clinician, he lacks any concensus view on how these kids should be treated for resolution of symptoms since there is no standard of care. I AGREE with him on this.

 

He does agree that these kids should be treated longer with antibiotics after infection. He does agree there is some neuroinflammation involved and not opposed to short burst of steroids if needed (we have not needed). He stops short of long term antibiotics as his 'experience' in the office with multiple children has shown him that the effects wane over time with no appreciable benefit. I also agreed with him on this note as this is what we saw with my son- 90 days of antibiotics- he improved and then effects waned. Went back to sorta similar, improved baseline that he went to without antibiotics in between Strep infections. the clssic sawtooth pattern. When we were unable to have Cunnningham testing completed then I decided to stop antibiotics. That was last Spring. He did encounter Strep in Fall- tics and OCD returned. Kept him on a month or so of antibiotics then stopped. He improved back to baseline by January and that's where we sit right now. He is likely the best he has been in years- right now- I'm dreading another bout of Strep- but I have antibiotics on hand if needed.

 

Anyway, your post was coherent and I agreed with your sentiments. Clinicians and researchers are different animals....both have seen my son and had something useful to add to the picture. But, I have found trying to combine the two opinions for treatment decisions can be problematic.

 

Hope you are feeling better soon!

[thenmama]

There are so many things wrong and offensive in this-- and not things I can dismiss as the Post. It's what Mechtler is quoted as saying. I hope some of the families of Dr T's patients threaten him with slander to shut him up about their children and families.

 

See this excerpt:

 

"Today, the neurologic and psychiatric communities agree that conversion disorder in teen girls is brought on by emotional and psychological trauma, with sexual abuse typically the prime trigger.

Then there is the possibility that some of these girls are malingerers, deliberately faking their symptoms for money or attention.

 

On the former point, Dr. Mechtler is circumspect. “I have to be very cautious in what I say. These girls have gone to the media and said they have no stress. These girls would be in denial. They have had significant emotional and psychological issues above and beyond what teenage girls are normally subject to.”

 

Mechtler says the parents who remain the most vocal in the media about their girls’ ordeals have never come to a doctor’s visit. “The parents who’ve never come in are fathers who are estranged,” he says.

 

Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers.

“My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ” "

 

 

Talk about bullying!

[peglem]

There are so many things wrong and offensive in this-- and not things I can dismiss as the Post. It's what Mechtler is quoted as saying. I hope some of the families of Dr T's patients threaten him with slander to shut him up about their children and families.

 

See this excerpt:

 

"Today, the neurologic and psychiatric communities agree that conversion disorder in teen girls is brought on by emotional and psychological trauma, with sexual abuse typically the prime trigger.

Then there is the possibility that some of these girls are malingerers, deliberately faking their symptoms for money or attention.

 

On the former point, Dr. Mechtler is circumspect. “I have to be very cautious in what I say. These girls have gone to the media and said they have no stress. These girls would be in denial. They have had significant emotional and psychological issues above and beyond what teenage girls are normally subject to.”

 

Mechtler says the parents who remain the most vocal in the media about their girls’ ordeals have never come to a doctor’s visit. “The parents who’ve never come in are fathers who are estranged,” he says.

 

Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers.

“My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ” "

 

 

Talk about bullying!

Is Mechtler implying that estranged fathers have sexually abused their daughters? That is a pretty strong accusation to make- I see why he is being so "careful" about what he says!

[EAMom]

There are so many things wrong and offensive in this-- and not things I can dismiss as the Post. It's what Mechtler is quoted as saying. I hope some of the families of Dr T's patients threaten him with slander to shut him up about their children and families.

 

See this excerpt:

 

"Today, the neurologic and psychiatric communities agree that conversion disorder in teen girls is brought on by emotional and psychological trauma, with sexual abuse typically the prime trigger.

Then there is the possibility that some of these girls are malingerers, deliberately faking their symptoms for money or attention.

 

On the former point, Dr. Mechtler is circumspect. “I have to be very cautious in what I say. These girls have gone to the media and said they have no stress. These girls would be in denial. They have had significant emotional and psychological issues above and beyond what teenage girls are normally subject to.”

 

Mechtler says the parents who remain the most vocal in the media about their girls’ ordeals have never come to a doctor’s visit. “The parents who’ve never come in are fathers who are estranged,” he says.

 

Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers.

“My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ” "

 

 

Talk about bullying!

 

How many of the girls originally went to Dent, and how many are still going there? 9 saw Dr. T., so that makes me think the majority aren't at Dent anymore , or perhaps they might be seeing both docs, but at least 9 had enough issue with Dent/conversion disorder to see a PANDAS dic.

[EAMom]

Well, Dr. Conversion disorder has cured them by taking away their internet access, texting, and facebook...........

 

http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ

 

Granted, this is the Post, so you can't necessarily believe a word in it...........

 

"Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers.

 

“My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ”

 

 

Read more: http://www.nypost.com/p/news/local/what_makes_them_tic_N5feofLwNdnVferxw0awIJ#ixzz1mB0Sqay3"

 

Brownell's videos are NOT deposted. http://www.youtube.com/user/rodeocowgirl131

 

He he...I know the CD docs WISH they were. They are awesome.

Edited February 13, 2012 by EAMom

[Iowadawn]

This video is heart-wrenching! Is Rodeogirl a patient at DENT? Dr. T? I'm sorry, but this is not CD. Is she any better? Is the Mom taking the bull by the horns and looking for help? I want to scream!!

[EAMom]

This video is heart-wrenching! Is Rodeogirl a patient at DENT? Dr. T? I'm sorry, but this is not CD. Is she any better? Is the Mom taking the bull by the horns and looking for help? I want to scream!!

 

I don't know if she goes to Dent, but in one of her videos she talked about seeing a neurologist in NYC (they said TS). I encouraged her to see Dr. T.