Erin Brokovich's team "stonewalled"

[thenmama]

Just saw this article about it.

 

The school blocked them and wouldn't allow testing. Sketchy.

 

 

TH

[kimballot]

Here is another version of the same story - http://thebatavian.com/leroy

Edited January 29, 2012 by kimballot

[MomWithOCDSon]

Wow. Well, I'll be watching both tonight and Monday night to see where this all goes.

 

This could be another one of those cases in which the "toxic load" just got to be too much for their immune systems, don't you think? If that spill is a real factor, potentially combined with another catalyst (infection, hormones, etc.), these kids all could be just now reaching the point where their brains and bodies react.

 

It's good to hear Dr. Drew say he's not buying the "conversion disorder" business. I think he actually said "it doesn't pass the sniff test."

[oivay]

Goodness gracious.......... scroll down to the second article on the Batavian link........

Look at all of those rusty metal drums labeled "hazardous" either on or right next to school property. It looks like there are dozens of them.

Yikes.

Edited January 30, 2012 by oivay

[MomWithOCDSon]

Well, the "Dr. Drew" segment on HLN in MY market was pre-empted by some true crime show, so I missed the replay of his segment with Erin. I know I can watch that on-line now, but still. Geez!

 

I guess tomorrow night is the real story, anyway, featuring that polluted site, etc.

 

Will Dr. T. have his test results by tomorrow night, as well, do you think?

[oivay]

With a rapid strep test, he would know in about 5 minutes. Strep culture is about 2 days.

 

Bloodwork takes a few days. I'm assuming he would test them for just about everything.

 

I wonder if he would be able to arrange the Cunningham test for all of those kids.

[EAMom]

With a rapid strep test, he would know in about 5 minutes. Strep culture is about 2 days.

 

Bloodwork takes a few days. I'm assuming he would test them for just about everything.

 

I wonder if he would be able to arrange the Cunningham test for all of those kids.

 

I'm not sure if they can run the Cunningham test now...but hopefully blood will be saved for a future study. You know, the study that proves Conversion Disorder is a bunk diagnosis, and is actually undiagnosed PANDAS/pans/SC (or a vaccine rxn, or Lyme or some other real disease).

 

It just boggles my mind that Conversion Disorder is actually something that is widely accepted by the medical community.

Edited January 30, 2012 by EAMom

[kim]

I'm not sure if they can run the Cunningham test now...but hopefully blood will be saved for a future study.

 

Did anyone read something about the NIH wanting to test for a gene that normal people have that involves shaking?

 

EAMom, a parent had shared this paper quite a while ago. At that time I don't think I really grasped it, but now I realize more about where they might have been coming from. I'm wondering if the "gene," testing is related?

 

http://medicine.utah.edu/neurology/research/swoboda/pnd/TH_deficiency_Parent_Handout.pdf

Edited January 30, 2012 by kim

[kim]

Here'e the article (with the concern expressed in the last paragraph about having autoimmune testing done)

 

I'm wondering if they mean an overexpression of those genes? Or if they mean an abnormality that is found in healthy people with no symptoms?

 

http://www.wgrz.com/news/article/152438/1/Doctor-LeRoy-Students-With-Rare-Illness-To-Be-Tested-At-NIH

 

The patients will have blood tested for two genes that are normally found in healthy individuals to see if they are found more frequently in patients with uncontrolled shaking.

[EAMom]

Here'e the article (with the concern expressed in the last paragraph about having autoimmune testing done)

 

I'm wondering if they mean an overexpression of those genes? Or if they mean an abnormality that is found in healthy people with no symptoms?

 

http://www.wgrz.com/news/article/152438/1/Doctor-LeRoy-Students-With-Rare-Illness-To-Be-Tested-At-NIH

 

The patients will have blood tested for two genes that are normally found in healthy individuals to see if they are found more frequently in patients with uncontrolled shaking.

 

Yes...but aside from the genetic test, and a functional MRI (if they get in the study), it doesn't sound like there is going to be much of a workup?? Certainly this is not a group that is going to test for infectious triggers or look at this from a PANDAS/PANS/SC perspective. Unless there is much more to it than the press is describing, it sounds like the NIH opinion would be a wasted trip.

 

"The second opinion would include a physical examination and possible clinical neurophysiological testing, according to Dr. Hallett, so that doctors there can make their own can make our own diagnosis"

 

I'm not convinced the NIH isn't doing it's own form of Quackery, as they "diagnose" 2 cases of Conversion Disorder a week.

Edited January 30, 2012 by EAMom

[JAG10]

Dr. Mechtler also said he's recommending a world-renowned expert in tic disorders in Rochester for the families to see for a second opinion. "The three of us would like to work together if obviously the children decide with parents to come back if they still have faith in us."

Don't most people want an independent second opinion? Most people won't even share the first doc/therapist's report just to see if the second one reaches the same conclusions independently (kinda hard when you're all over the national news though.)

 

I'm not as smart as Mechtler, but my guess is that NO, they no longer have faith in you, NO they don't want you speaking about their children on TV any longer and NO they don't want your collaboration or recommendations.

 

[peglem]

 

 

I'm not as smart as Mechtler,

I'm quite certain you are much smarter!

[kim]

EAMom did you read the post of mine above the one you quoted?

 

Copied here...sorry if i confused you!

 

I'm not sure if they can run the Cunningham test now...but hopefully blood will be saved for a future study.

 

 

Did anyone read something about the NIH wanting to test for a gene that normal people have that involves shaking?

 

EAMom, a parent had shared this paper quite a while ago. At that time I don't think I really grasped it, but now I realize more about where they might have been coming from. I'm wondering if the "gene," testing is related?

 

http://medicine.utah...ent_Handout.pdf

 

Just wondering if you had any thoughts on the paper

Edited January 30, 2012 by kim

[EAMom]

Just wondering if you had any thoughts on the paper

 

well, no great thoughts...except I don't think these th def. kids (from reading the paper, who knows?) would go suddenly from "normal" to "unable to attend school" like these girls (at age 16), or like the average PANDAS kid (at age 6). Also, Conversion Disorder (it seems?) would present more like PANDAS, perhaps underlying "anxiety" (low grade symptoms) but then things suddenly getting a drastically worse.

[kim]

Thanks EAMom

 

I totally agree with what you said. That's why I quoted you about hoping blood would be saved for future testing.

 

When you read http://informahealthcare.com/doi/abs/10.1080/08916930500484757

 

Antibodies present in acute chorea react with the surface of neuronal cells and signal the induction of calcium calmodulin dependent protein kinase II with elevation of tyrosine hydroxylase and subsequent dopamine release which may lead to the movement disorder.

 

 

well, I hope someone gets a chance to explain to them why that seems a whole lot more plausable at this point for these kids.

How many antibodies are capable of doing this, what causes their creation and what would allow bbb permeabilty in so many, I guess is what they (Brokovich&Dr.T) are working on finding there.

 

By the same token, if they are able to find any clues along other lines that may help someone without an autoimmune related problem, well that would be ok too.

Edited January 30, 2012 by kim