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Getting the word out -- an article from Latitudes


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I wrote an article for the Latitudes online newletter to provide a parent's perspective on PANDAS. Sheila was kind enough to forward me the link to an external website that picked up on the article. The external website asked Sheila for rights to repost the article. I like that it both linked back to the ACN forum and made the article available at this URL.

 

http://www.foodsmatter.com/asd_autism/misc...les/pandas.html

 

Buster

Edited by Buster
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Nice article Buster! I especially like this part:

 

For those who aren’t aware, strep throat is almost universally treated with antibiotics because for about 4% of the population who have the “right” genetics, untreated strep throat can turn into acute rheumatic fever. About 30% of those who get acute rheumatic fever develop Sydenham chorea, and about 70% of those get compulsions and obsessions so severe as to be clinically diagnosed with OCD. Luckily, once treated, the symptoms tend to resolve. Unfortunately, the symptoms often return with greater severity when the person is re-exposed to strep.

 

I got stuck on the "because" in the first sentence...because we already know that some of the population (who have the right genetics) with untreated strep can turn into acute rf and so on. Because we already know this can happen, why is it such a stretch that it may also cause Pandas!!!??? It is a given that this is a possibility with untreated strep turning into rf. I still don't see this as such a big leap with Pandas.

 

Great information to have, thanks for writing it.

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Thanks for writing this, Buster. I was diagnosed with Sydenham's as a child...the doctors at Duke knew it was from strep, and this was back in 1972. I just can't understand why docs do not connect PANDAS and strep these days and take it and treat it seriously. But, with articles like this, parents will be empowered with knowledge and docs, at least some of them, will become more aware and give respect to this illness. Thank you.

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This is excellent and what a DARLING little girl!

 

The look on her face along with the article, goes straight to your heart. Wonderful for parents and med professionals alike

Edited by kim
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I wrote an article for the Latitudes online newletter to provide a parent's perspective on PANDAS. Sheila was kind enough to forward me the link an external website that picked up on the article.

 

http://www.foodsmatter.com/asd_autism/misc...les/pandas.html

 

Buster

Great article! I liked how you combined the "medical" part of it with the "personal" part of it.

I would just add at the end to test parents (and dogs?) as well :blink:

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GREAT article! Thank you so much for sharing this!!!

 

I wrote an article for the Latitudes online newletter to provide a parent's perspective on PANDAS. Sheila was kind enough to forward me the link an external website that picked up on the article.

 

http://www.foodsmatter.com/asd_autism/misc...les/pandas.html

 

Buster

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This is excellent and what a DARLING little girl!

 

The look on her face along with the article, goes straight to your heart. Wonderful for parents and med professionals alike

 

Not our picture (although our children are adorable!)...I think the pic is something Sheila put up there? It IS a really good one.

Edited by EAMom
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For those who aren’t aware, strep throat is almost universally treated with antibiotics because for about 4% of the population who have the “right” genetics, untreated strep throat can turn into acute rheumatic fever. About 30% of those who get acute rheumatic fever develop Sydenham chorea, and about 70% of those get compulsions and obsessions so severe as to be clinically diagnosed with OCD. Luckily, once treated, the symptoms tend to resolve. Unfortunately, the symptoms often return with greater severity when the person is re-exposed to strep.

 

I got stuck on the "because" in the first sentence...because we already know that some of the population (who have the right genetics) with untreated strep can turn into acute rf and so on. Because we already know this can happen, why is it such a stretch that it may also cause Pandas!!!??? It is a given that this is a possibility with untreated strep turning into rf. I still don't see this as such a big leap with Pandas.

 

That was exactly why I wrote that part. Many researchers say that because there isn't any carditis it isn't life threatening -- actually Kurlan uses the word "benign" -- arggh. Clearly never lived with one going through this.

 

My point was we already know that untreated rheumatic strains of GABHS cause acute rheumatic fever. There is no debate on this. So why on earth are we putting kids at risk who culture positive for strep?

 

Buster

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Perfect article - great balance of emotion and facts. I am sorry that it took me "to that place", but loved it at the same time. Thanks for doing this for all of us. I loved the part about being easier to get off label anti-psychotics than a strep test. So insane and so true!

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