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Pudgeo

FYI : Dr is saw said" I do not believe in PANDAS"

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First I want to thank BUSTER for equipping me with studies to show non-believer Dr...unfortunately he already had his mind madeup. (Dr Sanker at Kaiser Santa Clara)

 

Dr said "Pandas is really a tic disorder . These children actually have hidden tic disorders that come out when they get strep" I'm totally serious, that's what he said to me, I almost laughed right there. I swear if there's not 100 years of studies done these Dr's just don't get it. They want 1000 research papers done to prove what we all are living here.

 

The good thing was he had seen other kids like my son who had a fever had regressed..but he didn't have ANY treatment ideas and he did agree with the diagnosis of "auto-immune enchepalitis" I am still trying to figure out what exactly that means(another name for PANDAS that the Dr's like the sound of better, perhaps?)He told me my son may never recover...great huh?

Oh yeah, he said my sons ASO titer was not high enough to be PANDAS, (but wait Kaiser did the ASO titer 6 months after my son was sick, gee, you think it may have gone down in that time? It was slightly elevated then)

 

So for now I will stick with my DAN Dr who is willing to try many treatments and is always optimistic that my son will get better!

You all are the BEST!! Sarah

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Hi Sarah,

 

Not sure what to say to Dr. Sanker except that it's a shame he's so busy that he can't read research papers. The disease he probably likes is ADEM (Acute disseminated encephalomyelitis). It's a pretty scary disease that has a positive side of seeming to be a single incident. For some reason, neurologists have an easier time accepting the unexplained occurance of ADEM and prescribing IVIG for treatment than they do with an explanation of an antibody reaction to an exotoxin of GABHS.

 

If you'd like to help Dr. Sanker's education, you might drop off a copy of Dale's paper http://qjmed.oxfordjournals.org/cgi/reprint/96/3/183

 

Which compares ADEM, PANDAS and SC. It's an excellent paper and worth the read.

 

Regards,

 

Buster

 

 

 

First I want to thank BUSTER for equipping me with studies to show non-believer Dr...unfortunately he already had his mind madeup. (Dr Sanker at Kaiser Santa Clara)

 

Dr said "Pandas is really a tic disorder . These children actually have hidden tic disorders that come out when they get strep" I'm totally serious, that's what he said to me, I almost laughed right there. I swear if there's not 100 years of studies done these Dr's just don't get it. They want 1000 research papers done to prove what we all are living here.

 

The good thing was he had seen other kids like my son who had a fever had regressed..but he didn't have ANY treatment ideas and he did agree with the diagnosis of "auto-immune enchepalitis" I am still trying to figure out what exactly that means(another name for PANDAS that the Dr's like the sound of better, perhaps?)He told me my son may never recover...great huh?

Oh yeah, he said my sons ASO titer was not high enough to be PANDAS, (but wait Kaiser did the ASO titer 6 months after my son was sick, gee, you think it may have gone down in that time? It was slightly elevated then)

 

So for now I will stick with my DAN Dr who is willing to try many treatments and is always optimistic that my son will get better!

You all are the BEST!! Sarah

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I wonder how Dr. Sanker can make that "claim" when a lot of PANDAS children only exhibit anxiety and/or OCD and NOT tics. In the beginning, my daughter did not have tics, but OCD symptoms. When are these physicians going to admit they are clueless about PANDAS and just start studying the families that have it so they can learn about it? No one claims that rheumatic fever or SC are not "real" and it is virtually the same process.

Colleen

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