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Dr. Swedo in the news ! (Le Roy)


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"Dr:LeRoy girls have PANDAS-like illness

Updated: Tuesday, 07 Feb 2012, 6:25 PM EST

Published : Tuesday, 07 Feb 2012, 11:59 AM EST

 

Ed Drantch

LEROY, N.Y. (WIVB) - A New Jersey doctor is offering another possible explanation for the illness affecting over a dozen students in LeRoy.

 

Dr. Rosario Trifiletti rebukes the diagnosis of conversion disorder. He says his test results show an infection is behind the girls' unusual symptoms.

 

The uncontrollable shakes and outbursts could be connected to something other than conversion disorder. News 4 has confirmed eight girls from LeRoy High School have now also been diagnosed with a "PANDAS-like" illness. Dr. Trifiletti says infectious triggers could be causing the teens' shakes.

 

Last night on HLN, Dr. Drew Pinsky asked the doctor, "Dr. Trifiletti has believed this entire thing might be an infectious outbreak. And as I hear you talk, doctor, that would be your provisional impression?"

 

"That's right; I think that's one of the main factors and one of the most easily reversed factors here," argued Dr. Trifiletti.

 

In a statement, the doctor said his diagnosis leads to rational medical treatment, which is of immediate importance. He states treatment has already started and notes their response will be helpful in supporting his diagnosis. But there may be disagreement.

 

Dr. Sue Swedo from the National Institutes of Health discovered the syndrome called "PANDAS."

 

She says, "If it's only tics, it's not PANDAS. PANDAS and PANS are both clinical diagnoses. They do not depend on lab tests to make the diagnosis."

 

Dr. Trifiletti says he used lab tests to make the diagnosis, but Dr. Swedo says high levels of strep antibodies are incredibly common in grade school children. You can learn more about PANDAS from the National Institutes of Health here.

 

"You're obligated to prove that strep tider that is elevated actually had anything to do with the onset of symptoms and that's been a major issue with PANDAS all along," Dr. Swedo said.

 

Dr. Trifiletti has not shared his diagnosis with doctors from the Dent Institute, who determined this was a case of conversion disorder. The Dent Institute had no comment on Dr. Trifiletti's report, but did tell News 4 another student in LeRoy has been diagnosed with conversion disorder, bringing the total number of cases to 16"

 

http://www.wivb.com/dpp/news/local/dr-confirms-pandas-in-some-leroy-girls

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Well, I have to say, I may be in a minority here, but I am actually GLAD Sue Swedo said what she did. When I was reading Dr. T's statement earlier, I could already here it coming. The questions from friends. "Oh, why don't you just get one of those strep titer tests done." Only to have to explain that we HAVE, and they were NOT elevated, and it does NOT exclude us from PANS. And then to hear "well, our doctor told US that if the titers are negative it's not pandas." Blah blah blah.....IT's the same thing with all the hoopla myco titers. Just because someone has elevated titers (EVEN IgM) it does not mean there is still active infection that antibiotics will help. I"m afraid that if the abx don't help, then the media will say "See, it's not Pandas after all." For us, abx don't help. Why can't those girls be in the IVIG study at NIMH? That would be a huge number of volunteers to meet the numbers necessary for NIH to put out a preliminary report.

 

Don't get me wrong...its seems awfully pandas-y to me for sure. Just don't want the focus to be on the strep titers being the "diagnostic tool." Dr. Swedo is correct. MANY kids have elevated titers after strep and DON"T have pandas.

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T. Mom posted this already on another thread:

 

http://thebatavian.com/howard-owens/statement-nimh-dr-swedo-has-not-seen-patients-cannot-confirm-conversion-disorder-diagno

Statement from NIMH: Dr. Swedo has not seen patients, cannot confirm conversion disorder diagnosis

 

 

 

Submitted by Howard Owens on February 7, 2012 - 4:55pm

 

 

In previous reports. Dr. Laszlo Mechtler has said Dr. Susan Swedo has indicated she would issue a statement confirming the conversion disorder diagnosis for the Le Roy teens with tics.

 

We attempted to contact Dr. Swedo for such a statement and were referred to the press office for the National Institute of Mental Health, a government agency.

 

We just received the following statement from NIMH:

 

The information you have from Dr. Mechtler regarding Dr. Swedo is incorrect. Dr. Swedo has not evaluated any of the patients so therefore cannot confirm

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I understand what Swedo is saying, but IMHO she (or the reporter?) is actually just confusing the situation. And it isn't not clear to me what she means when she says "If it's only tics, it's not PANDAS." If she is saying "tic only" symptoms cannot be PANDAS, that isn't consistent with the orginal (or current) definition of PANDAS (which is tics and/or OCD).

 

Yes, lab tests can confirm evidence of a past strep infection, which is is consistent with the diagnosis. And yes, these lab tests can have false positives (non-PANDAS kids with high strep titers) and false negatives (PANDAS kids with low strep titers). Obviously Dr. T. didn't look at these lab tests in a vacuum. He talked to the girls, examined them, knew their histories and that they ALL had "sudden onset" of symptoms.

 

Yes, in a perfect world it would be nice to "prove that strep tider (sic) that is elevated actually had anything to do with the onset of symptoms." How exactly would Dr. T. go about doing that? Wouldn't that require that strep titers were taken monthly (if not more often) before and during the onset of symptoms? Does Dr. T. have a "time turner" to do such a thing?

 

I can't help but wonder if this reporter is taking bits and pieces of what Dr. Swedo has said, and misrepresenting things a bit?

 

Dr. Sue Swedo from the National Institutes of Health discovered the syndrome called "PANDAS."

 

She says, "If it's only tics, it's not PANDAS. PANDAS and PANS are both clinical diagnoses. They do not depend on lab tests to make the diagnosis."

 

Dr. Trifiletti says he used lab tests to make the diagnosis, but Dr. Swedo says high levels of strep antibodies are incredibly common in grade school children. You can learn more about PANDAS from the National Institutes of Health here.

 

"You're obligated to prove that strep tider that is elevated actually had anything to do with the onset of symptoms and that's been a major issue with PANDAS all along," Dr. Swedo said.

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Why can't those girls be in the IVIG study at NIMH? That would be a huge number of volunteers to meet the numbers necessary for NIH to put out a preliminary report.

 

Don't get me wrong...its seems awfully pandas-y to me for sure. Just don't want the focus to be on the strep titers being the "diagnostic tool." Dr. Swedo is correct. MANY kids have elevated titers after strep and DON"T have pandas.

 

They are too old...the study is ages 4-12. Also the study is looking at kids with primarily OCD-ish pandas...I think b/c that is supposed to be more responsive to IVIG.

 

Unfortunately, if the local docs didn't bother to do any throat cultures, baseline ASO at the onset of symptoms, current strep titers (as flawed as that may be as a diagnostic tool) may be the best we can go on. (I don't know if Dr. T. ran current throat cultures???)

 

Yup...it would be great if the Cunnigham test were available as a further piece of the puzzle, perhaps Dr. Swedo/NIMH can offer that to the girls?

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Has anyone seen reports of OCD in the paper? urinary frequency? separation anxiety? I don't recall seeing any.

 

 

No, I haven't heard...but as Jenike explained in the Scientific American article, that may be b/c that's something that they just haven't talked about.

 

I think girls are on psych. meds/anti-depressants...

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I should add that Dr. T. was pretty smart when he called it a "PANDAS-like" illness...therefore he is not tightly bound by NIMH/Swedo's PANDAS diagnostic criteria.

 

Amen!

 

I hope the reporter abbreviated her statements. If that was all she was going to contribute, I don't think she did anyone any favors here. EAMom is absolutely right- OF COURSE Trifiletti put together a clinical picture/diagnosis!!!! All her statements did was highlight that no single piece of criteria equates to PANS dx. He can't go back in time; all he can do is what he is doing, choose his words carefully and hope they respond positively to treatment so the DENT duds can say they got better because they "believed" in Dr. T. They've set the stage so there are escape hatches regardless of the outcomes.

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I understand what Swedo is saying, but IMHO she (or the reporter?) is actually just confusing the situation. And it isn't not clear to me what she means when she says "If it's only tics, it's not PANDAS." If she is saying "tic only" symptoms cannot be PANDAS, that isn't consistent with the orginal (or current) definition of PANDAS (which is tics and/or OCD).[/i]

 

Just my words !

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That's exactly what Dr. T said my dd had in our phone consult. A "pandas-like" illness.

If it's only tics it's not pandas.....WTF? Then again, I can't imagine anyone ONLY having tics based on everyone on this forum...we all seem to have more than "just" tics or "just" ocd...right?

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What I want to know is - how many of these girls are still seeing the Dent doctors? If they aren't seeing the majority, should they be continuing to speak about or for them? Who is contInuing to pay for their services?

 

Insurance I assume.

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The Tic -only thing, and the fact that it is all girls, makes it look like something else to me too - not clear cut pandas - but obviously could still be immune related or infection related. I'm sure that Dr T did some investigation where the other symptoms are concerned.

And, from everything I've read tics are more common in pandas boys, not girls, so even weirder.

 

I just hate these narrow definitions. They need to look at the girls immune systems and forget the stupid definitions. If all of the girls have had either strep or mycoplasma, I find that highly unlikely that those two things are not related to what is going on. But, whatever those titers are need to be compared to what the "normal" is - preferrably from another area, not the same student body. Could be a certain strain of strep went through that student body and these were the girls that ended up with the [ost-infectious disorder from it (and possibly because of more exposures too).

 

In addition - while titers are very common among grade school population - and I've read those studies - I don't think that true of high school population. I think I've seen that somewhere recently, but don't reacall where or if it was strep or mycoP I was reading about. Does anyone recall seeing something about titers decreasing from ages 12-18 (a chart maybe?).

 

The whole "who owns tics" debate is hurting these kids. That and the narrow defintions. Why can't they say - in "2/3 of the cases we see both tics and OCD". When your kids is flailing violently about all day, it makes the other things minimal. These girs may have other symtoms - teen girls don't normally come on national TV and admit to doing weird things in secret that they know are "wrong". They hide it from everyone.

 

Swedos original work - I think all or almost all had tics, and then 2/3 also had OCD. I know a bunch only had tics. And many responded to treatment, but not all of them (2 ? who did not improve with IVIG). 2 is not enough of a group. And the ones in the PEX group that were tics only did improve from what I recall.

 

Swedo clearly trying to move away from the tic controversy. she's backing down to "bullying" Here is what she said in Texas in October:

________________________________________

DRAFT Criteria for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

I.

Abrupt, dramatic onset or recurrence of obsessive-compulsive disorder (Eating disorders may be an alternate manifestation of OCD and are counted here)

II.

Concurrent presence of additional neuropsychiatric symptoms, with similarly acute onset, from at least two of the following seven categories (see text for full description):

1. Anxiety

2. Sensory or motor abnormalities

3. Behavioral (developmental) regression

4. Deterioration in school performance

5. Emotional lability and/or depression

6. Urinary symptoms

7. Sleep disturbances

III.

Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others. Note: The diagnostic work-up for PANS must be comprehensive enough to rule out these and other relevant disorders. The nature of the co-occurring symptoms will dictate the necessary assessments, which may include MRI scan, lumbar puncture, electroencephalogram or other diagnostic tests.

______________________________

 

( Isn't it wrong that Tourette disorder is a "better explaination" than pans or pandas!!? So backwards - it it isn't pans or pandas and the kids isn't helped by IVIG and antibirotcs - THEN its tourettes.

Edited by norcalmom
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