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Study: OCD, Tourette's not caused by strep


kim

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I keep trying to figure out just what the significance of this is.

 

http://www.upi.com/Health_News/2009/10/02/...72051254507608/

 

Study: OCD, Tourette's not caused by strep

 

Are they saying that because there weren't more confirmed cases of strep in the ts/ocd group than in the regular population that there isn't an association? Just going by the little info available here, it seems that this is one poorly designed study to attach that strong of a title to it. If it would have been titled "No apparent increase in confirmed strep in TS/OCD patients than in general population," MAYBE (altho i don't know what that really proves either), but where do they get off with the conclusion suggested in that title?

 

 

Whos Sally?? Good response!!!

 

Melanie

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In an accompanying editorial, Donald L. Gilbert, MD, MS, of Cincinnati Children's Hospital Medical Center, and Roger Kurlan, MD, of the University of Rochester Medical Center, wrote that despite the study's limitations the findings suggest that PANDAS is probably not a common condition.

 

"There may be much more to discover about effects of infections and the immune system on neuropsychiatric symptoms in children," they wrote. "However, further insights into PANDAS will probably not emerge from either epidemiologic studies or clinic-based longitudinal studies as long as we are limited by our current biologic markers."

 

Please forgive my ignorance, but what does Drs. Gilbert/Kurlan mean by "biologic markers"?

 

Once again it seems that there really were no PANDAS kids in this study.

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In an accompanying editorial, Donald L. Gilbert, MD, MS, of Cincinnati Children's Hospital Medical Center, and Roger Kurlan, MD, of the University of Rochester Medical Center, wrote that despite the study's limitations the findings suggest that PANDAS is probably not a common condition.

 

"There may be much more to discover about effects of infections and the immune system on neuropsychiatric symptoms in children," they wrote. "However, further insights into PANDAS will probably not emerge from either epidemiologic studies or clinic-based longitudinal studies as long as we are limited by our current biologic markers."

 

Please forgive my ignorance, but what does Drs. Gilbert/Kurlan mean by "biologic markers"?

 

Once again it seems that there really were no PANDAS kids in this study.

 

I think that means Kurlan doesn't have a blood test for PANDAS (like Dr. Cunningham has).

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In an accompanying editorial, Donald L. Gilbert, MD, MS, of Cincinnati Children's Hospital Medical Center, and Roger Kurlan, MD, of the University of Rochester Medical Center, wrote that despite the study's limitations the findings suggest that PANDAS is probably not a common condition.

 

"There may be much more to discover about effects of infections and the immune system on neuropsychiatric symptoms in children," they wrote. "However, further insights into PANDAS will probably not emerge from either epidemiologic studies or clinic-based longitudinal studies as long as we are limited by our current biologic markers."

 

Please forgive my ignorance, but what does Drs. Gilbert/Kurlan mean by "biologic markers"?

 

Once again it seems that there really were no PANDAS kids in this study.

 

I think that means Kurlan doesn't have a blood test for PANDAS (like Dr. Cunningham has).

 

But, I think it also means that they have not been following the research on this...Cunningham's studies and Maddie Hornig's mouse model- But, this study was most likely started before those and I wonder how long it takes between submission of articles and publishing?

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I'm wondering if whomever wrote the article did not understand the study. In the article, the opening and closing paragraphs should be conveying the same statement. They are not.

 

I think many may assume that those who "believe" in PANDAS are trying to say that all OCD and Tourettes is caused by strep.

 

I keep trying to figure out just what the significance of this is.

 

http://www.upi.com/Health_News/2009/10/02/...72051254507608/

 

Study: OCD, Tourette's not caused by strep

 

Are they saying that because there weren't more confirmed cases of strep in the ts/ocd group than in the regular population that there isn't an association? Just going by the little info available here, it seems that this is one poorly designed study to attach that strong of a title to it. If it would have been titled "No apparent increase in confirmed strep in TS/OCD patients than in general population," MAYBE (altho i don't know what that really proves either), but where do they get off with the conclusion suggested in that title?

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Dr Gilbert diagnosed my son w/ PANDAS. Now he avoids us like the plague.

 

 

In an accompanying editorial, Donald L. Gilbert, MD, MS, of Cincinnati Children's Hospital Medical Center, and Roger Kurlan, MD, of the University of Rochester Medical Center, wrote that despite the study's limitations the findings suggest that PANDAS is probably not a common condition.

 

"There may be much more to discover about effects of infections and the immune system on neuropsychiatric symptoms in children," they wrote. "However, further insights into PANDAS will probably not emerge from either epidemiologic studies or clinic-based longitudinal studies as long as we are limited by our current biologic markers."

 

Please forgive my ignorance, but what does Drs. Gilbert/Kurlan mean by "biologic markers"?

 

Once again it seems that there really were no PANDAS kids in this study.

 

I think that means Kurlan doesn't have a blood test for PANDAS (like Dr. Cunningham has).

 

But, I think it also means that they have not been following the research on this...Cunningham's studies and Maddie Hornig's mouse model- But, this study was most likely started before those and I wonder how long it takes between submission of articles and publishing?

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I think many may assume that those who "believe" in PANDAS are trying to say that all OCD and Tourettes is caused by strep. We all know that is not true.

 

 

 

I hope I’m not putting words in your mouth by what you are trying to say…(I’ll tell you my whole history some other time as I’ve watched this board off and on for years)(maybe in a couple of weeks I'll let it all out)

No. I don’t know that it’s not true that all ocd/tics/ts aren’t caused by strep(pandas)and or pitands(allergies, virus) Most people aren’t observant enough to notice a correlation!!! People are oblivious to a physical person standing next to them in a grocery store as you stand there trying to get their attention to move.

 

And as I read on this board, I believe that at least a few of people here say that they or some relative they know exhibits some spectrumish disorder. So if it where the case to be genetic, why are you saying it’s not for your kid? You must be assuming something is triggering this reaction, to be researching it and not just saying it’s a chromosome defect like down syndrome and let it go.? These kids are canaries in the coal mine!

That new vaccine for cervical cancer is being w/d in Europe, as side effects show up months later. Also ( wish I could find it) it used to be accepted pre “modern medicine” that neurological problems followed an illness. Welcome to the 21st century!

 

The world was once flat, smoking used to be safe, after that secondhand smoke was still ok. One particle of peanuts is safe for some but not another and what triggers your spectrum may not trigger someone else or in a different way, maybe in a way never heard of before or not as severly. There is always that first person.

Here are a couple of things on something called Epigenetics. Has the switch been turned off or on and can you reverse it!

 

TeleCourse - PBS Hawaii Epigenetics NOVA Episode It’s about 56 minutes or so!!!!! Your DNA is not your destiny!!!

http://www.archive.org/details/epigenetics

 

a very good 10 minute snippet from nova ******

http://www.pbs.org/wgbh/nova/sciencenow/3411/02.html

 

Here is other nova’s site with all kinds of thing with epigenetics

http://www.pbs.org/search/search_results.h...=0&btnG.y=0

 

Gene Switches

http://www.pbs.org/wgbh/nova/genes/fate.html

 

Why do some people develop these condtions later in life>>>hasn’t been tripped yet…immune system still developing while young, so very subseptible, but yet more resilliant to heal….overdose or body worn down by life and toxins as you get older…can’t fight anymore..there is a tipping point…I could go on and on

 

I pray and cry with all of you here!

Sorry if duplicate info here and not trying to offend….

All parents on this board are doing their best!!!!

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I agree with you. Maybe a small % is caused by some other trauma or ingested poison. Even Dr. Kovacevic believes OCD, Tourette's, AD/HD, Anxiety Disorder, ETC. are just symptoms of PANDAS or PITANDS.

 

Please let us know your history as you've peaked my interest. The videos were great, thanks.....

 

 

 

I hope I’m not putting words in your mouth by what you are trying to say…(I’ll tell you my whole history some other time as I’ve watched this board off and on for years)(maybe in a couple of weeks I'll let it all out)

No. I don’t know that it’s not true that all ocd/tics/ts aren’t caused by strep(pandas)and or pitands(allergies, virus) Most people aren’t observant enough to notice a correlation!!! People are oblivious to a physical person standing next to them in a grocery store as you stand there trying to get their attention to move.

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Pandas is not caused by strep, the study is correct that the number of step infections doesn't correlate with OCD or STREP. It only takes one strep throat to cause the autoimmune reaction. Our kids are genetically predisposed to have an autoimmune reaction. It is just that strep is one of the triggers. Mycoplasma pnuemonia also does the same thing. Gilbert knows a portion of OCD and tics are autoimmune. But how does he distinguish which kids have PANDAS and which have TS or OCD. The specialties are all messed up, if you have OCD your pediatrician sends you to a shrink, if you have bad tics you get to see a neurologist. And if you have chronic infection or chronic strep you get to see an infectious disease doctor. If you have immune problems either a Rhuemotologist or immunologist. All of these specialties need to be involved. We have a long battle ahead of us. Cunninghams lab test will take three to four years for FDA approval. And lets also remember Kurlan is making big bucks heading up the multisite mirapex study on tics. What pharmecuetical is going to pay for a PANDAS study. Gilbert has 15 minutes with each of his kids per appointment. Without a blood marker how does he have time to distinguish one TS child from another. And also as he has stated, He is a neurologist not an immunologist. Its not his specialty. At least we are making some headway, he did say the study was lacking good measurements and he also said that immune markers are needed. He never said the there is no correlation. Seven years ago he didn'T believe in it, 5 years ago he had 5 or 6 kids in his practice he diagnosed with it. Now he wants markers so he could try to treat. He's not our guy though, he is waiting for someone else to find the markers.

 

 

 

humm

 

another article on this study

 

http://www.medpagetoday.com/InfectiousDise...nControl/16216#

 

In an accompanying editorial, Donald L. Gilbert, MD, MS, of Cincinnati Children's Hospital Medical Center, and Roger Kurlan, MD, of the University of Rochester Medical Center, wrote that despite the study's limitations the findings suggest that PANDAS is probably not a common condition.

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Also ( wish I could find it) it used to be accepted pre “modern medicine” that neurological problems followed an illness.

 

there is a great story in one of Dr. Andrew Weil's books - i read it some time ago so don't at all have the facts correct, but the gist. Long ago, in some town in Europe (very possible elsewhere) many people in a village in a valley would display odd behaviors. There was a monastery nearby on a hill. The people would be sent to the monastary where they would usually be "cured" thought to be religiously connected. Somehow - it is now believed that that valley harbors molds and when those people were away from the mold, they would lose their odd neuroses.

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It was wrong to make a broad statement like that. I should have thought it out more. Things like OCD could have others triggers.

 

I do know my child has PANDAS. I do believe there is a genetic connection for it. I do know the trigger for my son. I do know these kids are "canaries in a coal mine". I live in fear every day I will lose him again and next time I won't get him back.

 

 

 

I think many may assume that those who "believe" in PANDAS are trying to say that all OCD and Tourettes is caused by strep. We all know that is not true.

 

 

 

I hope I’m not putting words in your mouth by what you are trying to say…(I’ll tell you my whole history some other time as I’ve watched this board off and on for years)(maybe in a couple of weeks I'll let it all out)

No. I don’t know that it’s not true that all ocd/tics/ts aren’t caused by strep(pandas)and or pitands(allergies, virus) Most people aren’t observant enough to notice a correlation!!! People are oblivious to a physical person standing next to them in a grocery store as you stand there trying to get their attention to move.

 

And as I read on this board, I believe that at least a few of people here say that they or some relative they know exhibits some spectrumish disorder. So if it where the case to be genetic, why are you saying it’s not for your kid? You must be assuming something is triggering this reaction, to be researching it and not just saying it’s a chromosome defect like down syndrome and let it go.? These kids are canaries in the coal mine!

That new vaccine for cervical cancer is being w/d in Europe, as side effects show up months later. Also ( wish I could find it) it used to be accepted pre “modern medicine” that neurological problems followed an illness. Welcome to the 21st century!

 

The world was once flat, smoking used to be safe, after that secondhand smoke was still ok. One particle of peanuts is safe for some but not another and what triggers your spectrum may not trigger someone else or in a different way, maybe in a way never heard of before or not as severly. There is always that first person.

Here are a couple of things on something called Epigenetics. Has the switch been turned off or on and can you reverse it!

 

TeleCourse - PBS Hawaii Epigenetics NOVA Episode It’s about 56 minutes or so!!!!! Your DNA is not your destiny!!!

http://www.archive.org/details/epigenetics

 

a very good 10 minute snippet from nova ******

http://www.pbs.org/wgbh/nova/sciencenow/3411/02.html

 

Here is other nova’s site with all kinds of thing with epigenetics

http://www.pbs.org/search/search_results.h...=0&btnG.y=0

 

Gene Switches

http://www.pbs.org/wgbh/nova/genes/fate.html

 

Why do some people develop these condtions later in life>>>hasn’t been tripped yet…immune system still developing while young, so very subseptible, but yet more resilliant to heal….overdose or body worn down by life and toxins as you get older…can’t fight anymore..there is a tipping point…I could go on and on

 

I pray and cry with all of you here!

Sorry if duplicate info here and not trying to offend….

All parents on this board are doing their best!!!!

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