Leroy story on CNN now dr Gupta 10:30 pm EST

[Iowadawn]

Now, is there a connection to Kurlan & Singer? Dawn

[kimballot]

Gupta appears to practice at the same place that Dr. Mechtler practices-Dent Neuro Institute. Maybe this is "not news". he certainly will not go against what a colleague says. Just a thought. Dawn

 

 

There is a doctor at the Dent named Sanjay Gupta, but I do not think it is the same person. I don't think the emmy-award winning Dr. Sanjay Gupta left Atlanta to move to buffalo to see run of the mill psychiatric problems.

 

Here is Dr. Sanjay Gupta (neurosurgeon) of CNN http://www.cnn.com/CNN/anchors_reporters/gupta.sanjay.html

 

Here is Dr. Sanjay Gupta (psychiatrist) of the Dent http://www.linkedin.com/pub/sanjay-gupta/20/521/366

Edited January 19, 2012 by kimballot

[kimballot]

triple post - sorry.... but as long as I am here... there was a question about the connection to Kurlan / Singer.

 

Kurlan was working in Rochester at the time of his longitudinal study. The Dent is in Buffalo. Rochester is about 1 1/2 hours from Buffalo and doctors often collaborate on research. Leroy is between Rochester and Buffalo. I believe Kurlan's work is well-respected in the Buffalo and Rochester region among most physicians.

Edited January 19, 2012 by kimballot

[kimballot]

triple post - sorry

Edited January 19, 2012 by kimballot

[EAMom]

Gupta appears to practice at the same place that Dr. Mechtler practices-Dent Neuro Institute. Maybe this is "not news". he certainly will not go against what a colleague says. Just a thought. Dawn

 

 

There is a doctor at the Dent named Sanjay Gupta, but I do not think it is the same person. I don't think the emmy-award winning Dr. Sanjay Gupta left Atlanta to move to buffalo to see run of the mill psychiatric problems.

 

Here is Dr. Sanjay Gupta (neurosurgeon) of CNN http://www.cnn.com/CNN/anchors_reporters/gupta.sanjay.html

 

Here is Dr. Sanjay Gupta (psychiatrist) of the Dent http://www.linkedin.com/pub/sanjay-gupta/20/521/366

 

Oh, good detective work!

[EAMom]

triple post - sorry.... but as long as I am here... there was a question about the connection to Kurlan / Singer.

 

Kurlan was working in Rochester at the time of his longitudinal study. The Dent is in Buffalo. Rochester is about 1 1/2 hours from Buffalo and doctors often collaborate on research. Leroy is between Rochester and Buffalo. I believe Kurlan's work is well-respected in the Buffalo and Rochester region among most physicians.

 

Yes, and Jonathan Mink is at the Univ. of Rochester. http://www.urmc.rochester.edu/people/?u=23513877 He is another major PANDAS naysayer, his name is also on the CANS paper with Kurlan and Singer.

[EAMom]

double post

Edited January 19, 2012 by EAMom

[kimballot]

Wondering with all the "HIIPA" cover-up why Sanjay gets to tell the whole world that he's confident Guardisil wasn't a factor because all the girls did not get vaccinated with it! Hmm...did somebody say something "he" shouldn't have???

 

I don't know if Dr. Gupta is bound by HIPAA since he is not the girls' physician. If one girl told him publicly that she had never had guardasil, then I would think (as a reporter) he could share the information that "not everyone had guardasil". I am not sure how he discovered that not all girls had guardasil.

 

Also - I believe you are able to report grouped numbers according to HIPAA as long as no one can identify whom did or did not have the treatment. For example, a nursing home could say "90% of our patients had the flu shot" or "not all of our patients had the flu shot".... and we would never know if an individual did or did not have the flu shot. If they said "everyone had the flu shot" or "no one had the flu shot", though - then we would know if an individual had the shot, so they would likely say "we cannot comment on this".

Edited January 19, 2012 by kimballot

[norcalmom]

I didn't think the Gupta interview was that bad. He at least indicated that "conversion disorder" / "mass hysteria" pretty much means the doctors do not know what is causing this.

 

And, he also brought up that there may be others that are having symptoms as well - the symptoms in the 12 go from very mild to extreme, and he said that there may well be numbers of students that have mild symptoms that have not come forward/sought medical attention yet.

 

No one has mentioned if there are other symptoms... and from a parent of a kid with violent tics - the other stuff is easier to miss, when every second is occupied with tics. So, I wonder if anyone is even asking them the right questions (since they are primarily seeing a neurologist, probably not).

 

I'm sure that these parents are going to seek out a number of doctors and get several opinions. I re-sent Dr c (via Kathy this time) the email I sent a few months ago involving 6 (at the time) students, and now it is 12 and is a national story, suggesting that she offer her services to see if auto-antibodies are involved. Kathy said she is following the story and would ask Dr C to reach out. It would be great PR for them and their new lab if it did uncover some auto-immune issues. And of course it could change the course for treatment and investigation of causes if they are elevated.

[EAMom]

H Norcalmom

 

"I didn't think the Gupta interview was that bad. He at least indicated that "conversion disorder" / "mass hysteria" pretty much means the doctors do not know what is causing this."

 

Yup, I agree. I just don't understand why "doctors cannot find an explanation" equals "mass hysteria"/"conversion disorder". If it were 12 professional men with similar unexplained symptoms, nobody would call this "mass hysteria", it would be called "idiopathic". But, I supose that is not CNN's fault, what the Dent docs are calling it. They are just reporting what Dent says.

 

 

"And, he also brought up that there may be others that are having symptoms as well - the symptoms in the 12 go from very mild to extreme, and he said that there may well be numbers of students that have mild symptoms that have not come forward/sought medical attention yet."

yes, I thought that was good

 

 

"No one has mentioned if there are other symptoms... and from a parent of a kid with violent tics - the other stuff is easier to miss, when every second is occupied with tics. So, I wonder if anyone is even asking them the right questions (since they are primarily seeing a neurologist, probably not)."

I agree with that.

 

 

"I'm sure that these parents are going to seek out a number of doctors and get several opinions. I re-sent Dr c (via Kathy this time) the email I sent a few months ago involving 6 (at the time) students, and now it is 12 and is a national story, suggesting that she offer her services to see if auto-antibodies are involved. Kathy said she is following the story and would ask Dr C to reach out. It would be great PR for them and their new lab if it did uncover some auto-immune issues. And of course it could change the course for treatment and investigation of causes if they are elevated."

Hopefully they will get Cunningham tested and see the right docs. My concern is that most of the docs in the area will have the same "think inside the box" PANDAS naysayer attitude as Dent. So, getting a 2nd, 3rd, 4th opinion may not count for much if the doc is not knowledgeable re PANDAS and willing to take a stand against the DENT diagnosis.

[kim]

just a little something that I have to wonder about

 

http://www.rochestergeneral.org/rochester-general-health-system/news-and-events/all-news-releases/press-releases-2010/14897005/

 

Rochester General Hospital Receives Largest Research Grant in its History

 

 

This is a big strep guy and this whole 13 strain thing really bugs me. BTW, they are fast tracking this alum containing vaccine for use in adults as we speak.

 

http://www.uptodate.com/contents/treatment-and-prevention-of-streptococcal-tonsillopharyngitis

[EAMom]

just a little something that I have to wonder about

 

http://www.rochestergeneral.org/rochester-general-health-system/news-and-events/all-news-releases/press-releases-2010/14897005/

 

Rochester General Hospital Receives Largest Research Grant in its History

 

 

This is a big strep guy and this whole 13 strain thing really bugs me. BTW, they are fast tracking this alum containing vaccine for use in adults as we speak.

 

http://www.uptodate.com/contents/treatment-and-prevention-of-streptococcal-tonsillopharyngitis

However, as far as I know Michael Pichichero is a PANDAS believer.

 

Here's a paper he co-authored (with Marie L. Murphy)from 2002.

http://www.google.com/url?sa=t&rct=j&q=&esrc=s&frm=1&source=web&cd=6&ved=0CEoQFjAF&url=http%3A%2F%2Fwww.pandasnetwork.org%2FPinichero-nondectstrep.pdf&ei=R3QYT9mxHoKpiQK1-8TOCA&usg=AFQjCNHN3QlzunQ0EosycNu_mJYEYwi26w&sig2=DRfxgBH4fql4fumKv22iAQ

 

and medscape blurb if my link doesn't work

http://www.medscape.com/viewarticle/432046

Edited January 19, 2012 by EAMom

[kim]

EAMom,

 

You would laugh at the book that I wrote on this and then deleted several times.

 

Yes, I'm aware and have seen him caution of vaccine development.

 

http://news.healingwell.com/index.php?p=news1&id=520604

Strep Vaccine Shows Promise in Early Trial

 

I don't want to make anyone out to be a villian, however, I think I just get frustrated and question the politics of research.

Edited January 20, 2012 by kim

[kim]

In case anyone read above response before I edited, just wanted to say that I think I took off in a direction that didn't belong on this thread! Sorry!

[EAMom]

EAMom,

 

You would laugh at the book that I wrote on this and then deleted several times.

 

Yes, I'm aware and have seen him caution of vaccine development.

 

http://news.healingwell.com/index.php?p=news1&id=520604

Strep Vaccine Shows Promise in Early Trial

 

I don't want to make anyone out to be a villian, however, I think I just get frustrated and question the politics of research.

 

Yup...you never know when a vaccine will open up a whole new can of worms (kind of like how my younger dd got Shingles at age 4, b/c she was vaccinated for Chicken Pox at age 1). But, it's good that Pichichero is aware of these concerns:

 

 

 

"The concern, however, is that sometimes the body overreacts to the strep bacteria and creates an autoimmune response that can cause rheumatic fever and other disorders. So, any vaccine designed to trigger the body to create antibodies to strep might theoretically also cause some people to have a serious autoimmune reaction.

 

In clinical trials of a different protein-based vaccine in the 1960s, siblings of children who had rheumatic fever were vaccinated. Some of these children went on to develop rheumatic fever, presumably because of the vaccine, and the trials were halted, Pichichero said.

 

"We presume this product has eliminated the components that produced cross-reactive antibodies in the past," said Pichichero, but he added that researchers need to proceed with caution."