New headline!

[laurenjohnsonsmom]

Since when and "who" ruled out PANDAS in re: to the Leroy case. According to this article they have!

http://abcnews.go.com/m/story?id=15456672&sid=26

[peglem]

I don't think it was anyone who knows anything about PANDAS. One of the docs (the conversion disorder guy?) has said it can't be PANDAS because only one of the girls had a throat infection and PANDAS has a prepubertal onset. So it was ruled out by ignorance- I will trust that if Dr. T says it!

[thenmama]

The Ny Dept of Health Rep-- Hammond-- is the one who said PANDAS was ruled out, and it's likely he's going on Mechtler's statement that it was ruled out. Pretty sure I've seen another report in which one of the parents said her child hadn't been tested for strep (nevermind all of the other PANS infectious triggers they should be tested for). And I don't think Dr T could already have enough labwork back to rule anything out if he was just going up to see them at the beginning of the week.

[boychildsmom]

I contacted NYSDOH & Dent Institute when the story broke to alert them to the possibility of PANDAS. Dr. McVige confirmed they ruled out PANDAS based on age. Although most commonly <15 the diagnosis does not preclude >15. There are documented cases of SC onset in teenagers and even adults.

[thenmama]

Also...

 

I expect NY Dept of Health and Mechtler are not going to give Dr T or the parents any sort of public mention--seems like a power play-- shoving this dx down everyone's throat. It should really only be publicly discussed as a "possible" diagnosis since the parents & patients haven't accepted it and are still seeking answers.

 

I think it's problematic that Mechtler is still saying anything about this case publicly if he has, in fact, been fired by most/all of these families. And seriously problematic that both Mechtler and NY Dept of Health are claiming the girls are diagnosed if the families don't accept that dx and are still seeking proper diagnosis-- especially since some of these kids have now been named/seen in the public spotlight.

 

I also think Mechtler's guilty of some other serious ethical breaches (regardless of how you feel about the possible misdx/malpractice and his $$ connection to big pharma). For one thing, in going so public with his "diagnosis" and defending it so firmly and vocally, he's subjected these girls, who he claims are suffering a stress-triggered illness (due to post 9/11 anxiety), to significant public scrutiny and so very many ignorant, callous, downright nasty & misogynistic comments about them personally (fakers, witches a la Salem, drama queens, attention-seekers on one hand and since nobody really buys his dx, to all sorts of speculative, and unflattering suggestions re: the real cause: illegal drug/chemical abuse, sexual behavior, cell phone/tech addiction, etc.) that will now remain on the internet indefinitely in relationship to their names. Problematic if this is not the real dx, problematic if it is. Further, I was troubled by his public statements about Thera. He has gone on record saying he hasn't seen her yet, and he needs to see her in order to effectively treat the other girls. He's quoted as saying things like:

 

"Mechtler hopes to find the clue in the one girl who has yet to become his patient, Thera Sanchez....

 

'The other girls are following her symptoms, although less severely,' says Mechtler. 'What set her off? We need to know. I am saying right now that we will treat her without charge. Bring her in.'"

 

He's publicly naming a minor who is not his patient as the cause for the other girls' illness, then saying she is the key to understanding/solving all of their illness. So in public eye he's made her both the cause (or ringleader in the eyes of the nasty folks) AND the reason the other girls aren't recovering--looks like scapegoating and bullying to me.

 

Anyway, all the two cents I have time to add for now...

 

TH

[dcmom]

nmama-

 

I totally agree...does HIPPA not cover "conversion disorder"?

[kimballot]

yes - I believe the girls were originally evaluated by McVige (a neurologist), who says she ruled out PANDAS but she does not say what she tested for, exactly, due to HIPAA.

 

Mechtler said PANDAS was ruled out because only one girl had a sore throat and because PANDAS is rare and is not seen in children after puberty (Obviously, he has not read a single article on PANDAS completely, since even the 1998 landmark first 50 cases talks about non-strep exacerbations. He must stop after the abstract).

 

So... YES PANDAS has been ruled out... by people who don't know how to test for it and PANS has not been ruled out... since they only looked for strep throat.

Edited January 27, 2012 by kimballot

[beeskneesmommy]

Thenmama - very well spoken. From my perspective as a psychotherapist with a history of working with adolescents in acute care, the public behavior of Mechtler as a medical professional is shocking. Far beyond their recovery, these kiddos will be dealing with emotional scars formed by public ridicule as well as significant confidence, self-esteem and trust issues d/t being labeled as they have. Conversion d/o en masse is very rare and I simply do not buy it. In addition, I have been informed during my relationship with well known PANDAS specialists that, although much less common, onset in adolescence is a viable occurrence as well as (although apparently much more rare) in adulthood. I find myself seething at Mechtler's arrogance - perhaps it hits a sour note for me as it took more than 10 doctors to finally treat my toddler, although they blaringly all agreed that he had PANDAS! I am so disturbed by what these kids and their families are dealing with. Thank you for your concise statements and thinking process! -Kath

[EAMom]

I contacted NYSDOH & Dent Institute when the story broke to alert them to the possibility of PANDAS. Dr. McVige confirmed they ruled out PANDAS based on age. Although most commonly <15 the diagnosis does not preclude >15. There are documented cases of SC onset in teenagers and even adults.

 

 

Wow! Holy smokes! Impressive detective work!!! I'm surprised they disclosed that informtion.

 

I have several "theories" re the age of the girls.

1) that the ONSET of PANDAS was indeed prepubescent, that they actually had low grade symptoms (I understand some had tics/other issues) that were misdiagnosed PANDAS, flying under the radar so to speak, and now the girls are severely symptomatic with this latest "hot" trigger

2) there is a new strain of strep (or something else) that is triggering PANS in an older age group

3) this is actually Sydenham's Chorea

4) also, (as you guys probably know) Dr. K. (and Dr. T.) have written about adolescent/adult variants of PANDAS

 

Did they happen to mention why SC was ruled out? Or didn't DENT not think of that one?

Edited January 27, 2012 by EAMom

[EAMom]

Thenmama - very well spoken. From my perspective as a psychotherapist with a history of working with adolescents in acute care, the public behavior of Mechtler as a medical professional is shocking.

 

Agree agree agree!

 

I also agree that it takes a lot of arrogance (on the part of the medical community and the Dent docs in particular) to say "because I can not figure out the cause of your symptoms, it must be all in your head/all your fault/stress induced/conversion disorder". Normally (eg if it's a 35 year old male!), if a physician can't determine the cause of a set of symptoms, the term used would be "ideopathic" ("arising spontaneously or from an obscure or unknown cause"). This guy (and I suppose a lot of neuros who fling this Conversion Disorder garbage around) is too arrogant to admit "the cause is unknown" so he is compelled to make up a fairy tale (also used by other Neuros) explanation where somehow, some unknown stress "magically" makes these "real symptoms" happen. Like how exactly DOES that happen? I know PANDAS has molecular mimicry as an explanation as to how it works. What explanation does Conversion Disorder have? Magic stress tic fairies?

[boychildsmom]

1) that the ONSET of PANDAS was indeed prepubescent, that they actually had low grade symptoms (I understand some had tics/other issues) that were misdiagnosed PANDAS, flying under the radar so to speak, and now the girls are severely symptomatic with this latest "hot" trigger

 

Jumped out at me too, that at least one had earlier episode of tics. Right, maybe others presented with OCD or PDD or behaviors or even eating disorders, that would not prompt a pediatrician to consider strep. For some this could be onset, others a recurrence. Or, maybe myco, which wouldn't seem as prevalent in a school as strep, but Dr T mentioned a recent myco outbreak.

 

2) there is a new strain of strep (or something else) that is triggering PANS in an older age group

 

Older people are not immune to group A strep complications, no more than we are immune to strep throat. But the mature immune system is better able to prevent infection.

 

3) this is actually Sydenham's Chorea

 

I haven't been able to find research definitively identifying unique clinical markers of SC and PANDAS...if anyone has some, please share.

 

4) also, (as you guys probably know) Dr. K. (and Dr. T.) have written about adolescent/adult variants of PANDAS

 

Did they happen to mention why SC was ruled out? Or didn't DENT not think of that one?

 

They said one patient tested + for strep throat, which Mechtler repeated in an interview. I asked, but they did not confirm whether ASO/ADB titers were run.

[EAMom]

 

 

They said one patient tested + for strep throat, which Mechtler repeated in an interview. I asked, but they did not confirm whether ASO/ADB titers were run.

 

They said only 1 girl had a "throat infection" on the news, so the DENT person confirmed it was strep? It's not clear to me if they even would have cultured the others if they didn't have an obvious pharyngitis, given how clueless these docs seem to be. I also really doubt they ran titers.

 

I can't wait for Dr. T. to get to the bottom of this.

 

I also have no idea how DENT could have ruled out SC. Sometimes the symptoms are similar, but if it is SC you need an echo to make sure there isn't cardiac involvement.

Edited January 28, 2012 by EAMom

[oivay]

Beautifully stated thenmama.

I agree that Mechtler et al have been selectively interpreting HIPAA. And I fully understand why that girl's mother would want to keep her as far away as possible from the DENT crew.

 

And one of the first things my daughter's neuro ordered when we first saw him was a cardiological eval, which showed mitral valve regurgitation, which cardio said was impossible to determine if it had always been there(because she'd never been eval'd before), or if it was associated with the onset of chorea/tics, but we had to see her each time another episode occurred.

 

Even during one or our trips to the ER, the attending immediately ordered an echo.

Edited January 28, 2012 by oivay

[EAMom]

Beautifully stated thenmama.

I agree that Mechtler et al have been selectively interpreting HIPAA. And I fully understand why that girl's mother would want to keep her as far away as possible from the DENT crew.

 

And one of the first things my daughter's neuro ordered when we first saw him was a cardiological eval, which showed mitral valve regurgitation, which cardio said was impossible to determine if it had always been there(because she'd never been eval'd before), or if it was associated with the onset of chorea/tics, but we had to see her each time another episode occurred.

 

Even during one or our trips to the ER, the attending immediately ordered an echo.

 

IMHO, the whole cardiac issue (since SC is likely given a positive strep test) is the primary reason why Dent deserves to be sued, esp. for the 1 girl that we KNOW had a positive test.

Edited January 28, 2012 by EAMom

[EAMom]

 

 

They said one patient tested + for strep throat, which Mechtler repeated in an interview. I asked, but they did not confirm whether ASO/ADB titers were run.

 

On testing for infections...isn't this weird? http://alabama-news.info/alabama-news/doctor-offers-new-details-on-teen-girls-mystery-illness.html I added the bold.

 

The girls, who all attended LeRoy Junior-Senior High School in upstate New York, aren’t consciously mimicking one another or faking it, Mechtler said.

 

“This is a subconscious effect that occurs in patients that may be prone to anxiety or mood disorders,” he explained. “But these are definitely real symptoms. It sounds like an infectious disease, but should not be perceived as one. The state department of health made a complete review of the air quality and mold – and everything was negative so we do not think this has an infectious cause.”

 

It sounds like Dr. Conversion Disorder ruled out any infections BASED ON THE DEPT OF HEALTH'S REVIEW OF AIR QUALITY AND MOLD OF THE SCHOOL PROPERTY. Say what? Doesn't it sound like the GIRLS THEMSELVES weren't even tested?