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PANDAS is so rare?...this makes me so angry!!!!

 

How common is RF and SC in countries that do not have ready access to antibiotics?

 

What about this case?

 

http://www.cdc.gov/mmwr/preview/mmwrhtml/00000880.htm

 

EXACTLY!

 

ARF is rare in this country. But when it does happen (as strep is contagious), an outbreak with many individuals is possible, just as in your link.

 

PLUS, never mind the fact that PANDAS isn't even as rare as ARF.

Edited by EAMom
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Yup...lots of conflicting information. Also that he reports that all the girls had significant stressors in their lives...but then the girls go on National TV saying they didn't.

 

Plus, I wonder if his idea of "getting better" is suppressing symptoms with 1/2 dozen to a dozen different anti-tic and pscyh. meds.

 

One of the girls noted on TV that her stressor was a grandparent dying last year. I think by the time a child is 18 he/she has experienced the death of a loved one. Yes... it is difficult... but if that qualifies as a "significant" stressor, then there are NO daily life events that would seem off limits, so really anyone would meet criteria for this diagnosis.

 

One of the girls is raising a baby. Now, that I would put in the stressor category for a teen.

Yup, or a parent's divorce, or someone gets bullied, or doesn't make the soccer team. These things happen to teens all the time all over the country...

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Yes, EA Mom, the article originally read Dr Drew and then was changed to read "syndicated television show," I caught that, too. As of yesterday you could still see it in the Google cache, but today it looks like it's been updated.

 

I haven't checked the article again for further RT editing, but its last update was today at 5:22 am-- that could be a server/sitewide update or further changes made.

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I'll try this again.

 

One of the girls is raising her own baby. Now, that would be a stressor for a teen in high school.

 

yeah...but if you look at the videos, she doesn't seem stressed by that at all. Her dad (the baby's grandfather) works at home and helps raise the baby. And, really, it doesn't look like there is any stigma attached b/c of that (I looked at her FB site a while back).

 

While I think that would have been a stressor for me or you 30 years ago, I can't make the judgement call and say it's a big stressor for this girl.

 

And really, how many teens have babies, have grandparents that die, have parents that get divorced...this happens EVERYWHERE. Why aren't teens all over the country getting Mass Hysteria? Why Le Roy?

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Stress is normal, look at ANYONEs life and you can find something considered stressful for them (or for you to project onto them). What is interesting about stress is it opens up the BBB...and if you have certain infections the antibodies being made at that time can then get accross the BBB into the brain and attack it. And the cycle begins..(more stress, more opening, more antibody positive re-inforcement so the body creates more of those and the when the brain is attacked it experiences fear/flight/fight - making more stresss..opeing the BBB...)

 

Here's another theory on SC - strep strains change - RF and SC used to be common here - likely because the strains of strep were different then here. These strains still common in other areas of the world however.

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Stress is normal, look at ANYONEs life and you can find something considered stressful for them (or for you to project onto them). What is interesting about stress is it opens up the BBB...and if you have certain infections the antibodies being made at that time can then get accross the BBB into the brain and attack it. And the cycle begins..(more stress, more opening, more antibody positive re-inforcement so the body creates more of those and the when the brain is attacked it experiences fear/flight/fight - making more stresss..opeing the BBB...)

 

Here's another theory on SC - strep strains change - RF and SC used to be common here - likely because the strains of strep were different then here. These strains still common in other areas of the world however.

 

Hi Nocalmom,

I tried to send you a msg but your inbox was full. DId you see my post re my friend's dd with cfs?

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How common is RF and SC in countries that do not have ready access to antibiotics?

 

What about this case?

 

http://www.cdc.gov/m...ml/00000880.htm

PANDAS is so rare?...this makes me so angry!!!!

 

 

I came across that same site after reading this page by Kaplan. I was sorry I couldn't get the whole thing, but I found the middle class with access to medical care and military recruit training camps interesting.

 

http://resources.metapress.com/pdf-preview.axd?code=x384735v64412238&size=largest

 

 

this one too

 

 

dated 1988

 

THE DOCTOR'S WORLD; Rheumatic Fever Cases Posing Many Puzzles As Comeback Is Feared

 

 

Because no laboratory tests are specific for rheumatic fever, doctors rely on a medical history, a physical examination and a classification scheme to diagnose it.

 

According to the scheme, known as the Jones criteria, there are five major and three minor indications. The major ones are: inflammation of the heart; arthritis; a syndrome involving involuntary jerky movements of the body, halting and slurred speech and facial grimaces, known as chorea, that disappear in a few weeks with no permanent damage; a rash that does not itch, and bumps under the skin.

 

http://www.nytimes.com/1988/03/22/science/doctor-s-world-rheumatic-fever-cases-posing-many-puzzles-comeback-feared.html?pagewanted=all&src=pm

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How common is RF and SC in countries that do not have ready access to antibiotics?

 

What about this case?

 

http://www.cdc.gov/m...ml/00000880.htm

PANDAS is so rare?...this makes me so angry!!!!

 

 

I came across that same site after reading this page by Kaplan. I was sorry I couldn't get the whole thing, but I found the middle class with access to medical care and military recruit training camps interesting.

 

http://resources.metapress.com/pdf-preview.axd?code=x384735v64412238&size=largest

 

 

this one too

 

 

dated 1988

 

THE DOCTOR'S WORLD; Rheumatic Fever Cases Posing Many Puzzles As Comeback Is Feared

 

 

Because no laboratory tests are specific for rheumatic fever, doctors rely on a medical history, a physical examination and a classification scheme to diagnose it.

 

According to the scheme, known as the Jones criteria, there are five major and three minor indications. The major ones are: inflammation of the heart; arthritis; a syndrome involving involuntary jerky movements of the body, halting and slurred speech and facial grimaces, known as chorea, that disappear in a few weeks with no permanent damage; a rash that does not itch, and bumps under the skin.

 

http://www.nytimes.com/1988/03/22/science/doctor-s-world-rheumatic-fever-cases-posing-many-puzzles-comeback-feared.html?pagewanted=all&src=pm

 

Those were good articles.

 

Yeah...I wanted to keep reading the first one, but there was only 1 page.

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Obviously, there is nothing we can do. However, it could be a public health issue. We all care for the same reason we all respond to and try to help you, or anyone on here.

Any of our kids could have been diagnosed with conversion disorder or worse and been left with no help at all.

From what I have seen, the girls with their parents went to the media, looking for help.

I came here for help and advice and I imagine every one with honest intentions on here did.

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You know, I wonder if Dr. CD is confusing the folks at the NIH with the Dr. Swedo & Co. at the NIMH. I read a story tonight that states the NIH is standing by the conversion diagnosis. Let's hope he is bright enough to realize they are two different groups!! I would put money down on this being where he gets that Swedo is on board with the dx. I have a feeling some bottoms are feeling a bit warm and major twitching is beginning to occur.....By Golly!! I just diagnosed my first case of Conversion Disorder. Definitely stressed induced movement. I couldn't resist. I'll quit. Dawn

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I have a feeling some bottoms are feeling a bit warm and major twitching is beginning to occur.....By Golly!! I just diagnosed my first case of Conversion Disorder. Definitely stressed induced movement. I couldn't resist. I'll quit. Dawn

 

YOU CRACK ME UP! I must go to sleep and now I can with a lighter heart. Thanks, Dawn!

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You know, I wonder if Dr. CD is confusing the folks at the NIH with the Dr. Swedo & Co. at the NIMH. I read a story tonight that states the NIH is standing by the conversion diagnosis. Let's hope he is bright enough to realize they are two different groups!! I would put money down on this being where he gets that Swedo is on board with the dx. I have a feeling some bottoms are feeling a bit warm and major twitching is beginning to occur.....By Golly!! I just diagnosed my first case of Conversion Disorder. Definitely stressed induced movement. I couldn't resist. I'll quit. Dawn

 

DO you have a link? And how can the NIH (I'm assuming this is the group that studies conversion disorder?) stand by the the diagnosis if they haven't seen the girls?

 

YEah...I can't really envision Dr. Swedo going on a Nationally Syndicated TV show to support Dr. Conversion Disorder's diagnosis....I'll believe it when I see it. It just sounds too weird.

 

DId you guys see this? Dr. Conversion Disorder disputes Dr. T.'s PANS diagnosis. Dr. Conversion Disorder has many interesting theories!

http://thebatavian.com/

Edited by EAMom
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