New York Times Magazine and Leroy

[dcmom]

http://www.nytimes.com/pages/magazine/index.html

[minimaxwell]

NYT should be ashamed of themselves. How about some real reporting next time??

[oivay]

I was also unpleasantly surprised with the quality of the reporting.

They don't even mention Dr. T until almost the last page and basically discount everything he has to say. The completely overlook the blood work.

 

They also seem to be going out of their way to suggest that these kids had horrible home lives, live in a horrendously bleak town, have unbelievable amounts of stress, and with lives like these, it's no wonder they all have conversion disorder. Most kids in America have lives like this, and often far worse, and yet this is the only place on Earth where everyone falls victim to conversion disorder?

[MomWithOCDSon]

Did anybody scroll through the Comments at all? There's a certain "Dr. AJ" represented there that I'd personally like to take out behind the woodshed. Talk about a God complex!! Whoooooo!!

[corinthdad]

as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back

1 strep titers all elevated

2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter)

3 no evidence of lyme

4 profound iga deficiency

very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals

5 vit d quite low

in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers.

 

 

she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent.

its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.

[corinthdad]

My email response to the author:

 

WOW, What happened to the girls in Corinth , what happened to the rest of the girls in up to thirty other states & Canada , what happened to ALL the facts , what happened to all the positive tests for Lyme , streptococcus ,igg iga ig4,ige vitamit d def , mycoplasma , M Pneumonia & many other abnormalities . Better question , how much did nys dept of health & dent pay you to spin this . Maybe it really does go much , much higher than that . I suppose fair & unbiased has a price tag . Given the facts & evidence Dr T has presented thus far , i figured this would have been the perfect opportunity for media, dept of health , nih & the medical community as a whole to pool their collective knowledge for the good of humanity but as they remain arrogantly ignorant & deceptive , i find a whole network of parents & doctors heroically working behind the scenes despite trash like you. You really dropped the ball on this one .

truth always overcomes,

 

forgive me people but i felt compelled to respond to the person that sat in front of my daughter & the write that trash.Its even more upsetting that we allowed the interview within 24 hours of spending her 16th birthday in the ER.

[dut]

Did anybody scroll through the Comments at all? There's a certain "Dr. AJ" represented there that I'd personally like to take out behind the woodshed. Talk about a God complex!! Whoooooo!!

 

yeh, Dr AJ really is piece of work. I'd happily help you drag him out back.... don't worry, the karma police will get him.

[peglem]

as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back

1 strep titers all elevated

2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter)

3 no evidence of lyme

4 profound iga deficiency

very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals

5 vit d quite low

in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers.

 

 

she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent.

its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.

I'd like to thank you for sharing with us. As you know, we on this forum have been intensely interested in these cases, and perhaps a bit too speculative. Its gratifying to get real information, outside of the media filter. I pray that your daughter will finally get some healing!

[EAMom]

http://www.nytimes.com/pages/magazine/index.html

 

McVige checked their thyroid, their hemoglobin, their drug levels and their strep exposure, as well as other possibilities, and encouraged the girls’ families to seek out other infectious-disease specialists for further confirmation.

 

According to the published report (I think it was the state's report), only 6 of the girls were even tested for strep by Dent. And ASO was the only strep test that was mentioned (no cultures, no anti-dnase b. ) Of those 6 tested, 4 were positive. However, Mechtler (or McVige?) then proceded to discount these 4 elevations b/c they were not elevated "enough". Apparently, Dent disregarded the positive results b/c they didn't meet NIMH's upper limit of normal. What Dent didn't understand, is that

1) you need to use your own lab's upper limit of normals, you can't use NIMH Upper Limit of Normal unless you ran the blood test at NIMH's lab (which they didn't). So, they had no business discounting the 4/6 that were positive.

2) ASO has a high false negative rate... only 49% of those with cultureable strep will actually have a rise in ASO, and of those that do get a rise, "59% peaked below the ULN.... If only ULN values were used to evaluate single serum sample titers, these indisputable GAS infections would have been incorrectly characterized." In other words, it's very possible that the 2/6 that were "normal" actually had strep as well.

 

Dent apparently didn't bother to test them for Mycoplasma...

 

I also think it's funny that the article makes a big deal about how Thera and Katie were so close, they might have some sort of "shared connection" which could have transmitted their "conversion disorder"...but apparently no mention was given to the possibility that they might have also shared an infectious trigger such as strep and/or mycoplasma!

Edited March 8, 2012 by EAMom

[EAMom]

http://www.nytimes.com/pages/magazine/index.html

 

Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced

Conversion Disorder.

 

After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. )

Edited March 8, 2012 by EAMom

[EAMom]

http://www.nytimes.com/pages/magazine/index.html

 

Susan Swedo, the neurologist at the National Institutes of Health who first described the disease, has implied that she doubted Pandas or a similar syndrome could be responsible for the symptoms in Le Roy. The phenomenon is rare enough that the odds of so many students suffering from it at once, all in one high school, were almost impossible.

 

Oh...but she already said she can't comment one way of the other on the girls, as she has not examined them. But she supposedly says PANDAS is so "rare" that an outbreak couldn't occur?

 

Apparently Swedo forgot about this little PANDAS outbreak (or doesn't it count because PANDAS wasn't discovered yet?):

"In the 1980s, an outbreak of Group A streptococcal tonsillitis in Rhode Island was associated with a 10‐fold increase in the incidence of motor tics (without chorea);4 the concept of post‐streptococcal tics was born. Subsequent identification of further patients led to the development of a new acronym: PANDAS (paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections).12 " http://qjmed.oxfordjournals.org/content/96/3/183.full

Edited March 8, 2012 by EAMom

[mama2alex]

http://www.nytimes.com/pages/magazine/index.html

 

Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced

Conversion Disorder.

 

After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. )

 

Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.

[Iowadawn]

http://www.nytimes.com/pages/magazine/index.html

 

Apparently, if you are from a single parent home, or are a child in foster care, then it must be stress induced

Conversion Disorder.

 

After all, it's been scientifically proven that only kids from "good" families with both mom and dad present can get strep/mycoplasma/lyme and PANDAS. (Heavy sarcasm. )

 

Yes, this intrepid journalist has borrowed Kanner's "Refrigerator Mother" theory and transformed it into the "Absent Father" theory. I would expect nothing less from the New York Times.

 

 

And what about the other 17 or so cases? I gathered from the article that 5 or 6 girls were used for this article? I this day & age you could probably take 25 random girls and find at least 5 with absent fathers or situations like these five. Just thinking outloud.

 

Sorry you got dooped Corinthdad.

[peglem]

 

 

I also think it's funny that the article makes a big deal about how Thera and Katie were so close, they might have some sort of "shared connection" which could have transmitted their "conversion disorder"...but apparently no mention was given to the possibility that they might have also shared an infectious trigger such as strep and/or mycoplasma!

Which is exactly what GPs and pediatricians would think if multiple patients came in complaining of the same symptoms as one another-some infection going around.

[tpotter]

as posted in " dr t's latest my dd is a recent patient of dr t. We just got lab results back

1 strep titers all elevated

2 evidence of mycoplasma inf or is carrying m pneumoniae (most likely the latter)

3 no evidence of lyme

4 profound iga deficiency

very low levels of igg4 , ig4 & absent basophils on cbc (this tiad is frequently seen in pandas prone individuals

5 vit d quite low

in summary she has evidence of a pandas-like illness with probable streptococcal and mycoplasma triggers.

 

 

she is one of 2 known cases in corinth ny (250 miles from leroy)& completely un-investigated by nys dept of health & dent.

its odd how this ny times sat at my table for an interview but failed to provide answers that would explain the obvious questions that would arise.remember, my dd was suffering since may 2011 (15 yrs old at onset), alone, before any in Leroy or Corinth . This reporter for the ny times assured me the article would be thorough & tastefully done.

 

 

Corinthdad, what are you doing for the profound iga deficiency. That is very serious if low enough, and needs to be treated. I would suggest considering a consult with Dr. B. in Darien, CT. He is an immunologist, treats PANDAS and PANDAS-like illnesses, but from an immunological perspective. He could take a look at the Iga, Igg4 and absent basophils, not to mention the rest. Also, mycoP can be a co-infection of lyme, and even though the blood tests were negative for lyme (they are notoriously inaccurate, unless you get the new one which requires a person to not be taking abx for several weeks), it might indicate lyme (not necessarily, but possibly.) It is very possible that it is the combination of all these infections together that triggered the symptoms, as many of us are finding that it's mulltiple infections, not just one that our children are suffering from.

 

Many of us see more than one PANDAS/Lyme specialists, because they have their own areas of expertise (we see 4, for instance.)

 

Good luck, and happy birthday to your daughter.