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I've done a first pass analysis on the paper and the cited references (particularly reference 47, Lin et al Sept 2002).

  1. Lin's criteria is being used to define an exacerbation. If taken at face value, this means an exacerbation is:
    • a 7 point rise in CY-BOC score with a minimum value of 16
    • or a 9 point rise in YGTSS score with a minimum value of 19
    • or a combined rise of 10 points with a minimum value of 33 on a combined CY-BOC and YGTSS score

[*] This is important because the sample group was drawn from the Tourettes study group. This means that most of the population were patients with Tourettes or chronic tic disorders and had had such a diagnosis for some time.

[*] In addition, the sample was prodominantly male (i.e., 81% of PANDAS cases were boys)

[*] Only 5 proported PANDAS subjects and 4 non-PANDAS subjects had OCD-only symptoms. This implies the study is underpowered for any comments on OCD-only PANDAS presentations.

[*] The paper correctly highlights that many of the proported PANDAS patients would not be considered PANDAS if the criteria was tightened to include Swedo's observations in 1998, namely the co-occurance of anxiety, emotional lability, irritability, aggressive behavior, sudden difficulties with concentration or learning, developmental regression, etc.

[*] As others have pointed out, the blind was broken in terms of the results of GABHS throat cultures. What was good, however, was that the study did track whether antibiotics were given. On the other hand, the duration, compliance and type of antibiotic, however, was not tracked.

[*] There is also a reference to the non-proported PANDAS that seemed awfully PANDAS-like in retrospect. This is likely what prompted the researchers to say that perhaps their admission criteria is flawed and needs to be tightened.

[*] The duration of the exacerbation is not listed. Lin notes in the 2002 paper that the duration of OCD exacerbation was approximately 3 months.

 

So, what is the core take away from this study. Well, I think the core is

  • the high degree of agreement on what is an exacerbation
  • the improved clarity that Tourettes (i.e., long term tic disorders that do not have remission) is unlikely to be PANDAS
  • continued confusion on what means "sawtooth". Leckman and others are using an increase of 7 points on a base of 16. In looking at CY-BOCS, this appears to be a change in 2-3 questions by one category (please help me folks if you know the CYBOCs score better). This is actually a relatively minor change relative to the explosive change reported by Snider and Swedo.

 

I appreciate that the paper will be used by many to say "more proof PANDAS doesn't exist" but I think the actual item is more "if you pull samples from Tourettes Study Group, you are unlikely to get a PANDAS kid".

 

Anyway, that's my first pass response on the paper.

 

Buster

Edited by Buster

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"if you pull samples from Tourettes Study Group, you are unlikely to get a PANDAS kid".

 

Buster

 

 

Exactly Buster! Cunningham went over that study and said his controls were terrible.......... they included kids that already had disorders.

Edited by P.Mom

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What happened to Do No Harm? If a dr tells a patient, "your child need antibiotics" yet does not give them antibiotics, they are doing harm. I am not turning this into a bash the doctor thread, but quite frankly, my patience has run thin. I don't see how a physician can justify that to himself or his patients.

 

Colleen

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Colleen

 

I agree- these docs get on their high horse and do not care about our kids. They forget, sometimes they should stop looking at study after study, and look at the REAL suffering of our kids- and try to help- even if that means thinking out of the box. I mean didn't they learn anything in med school? Isn't this why they get the big bucks?

 

I have spoken several times w/ one of these docs, and even though he thinks it is very likey my dd has pandas- he told me NOT to come to him (and he is the head of neurology at his hospital). Also, another major local hospital does not treat pandas- I called the neurologr dept, and there is not a doc there that will see a pandas patient.

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What happened to Do No Harm? If a dr tells a patient, "your child need antibiotics" yet does not give them antibiotics, they are doing harm. I am not turning this into a bash the doctor thread, but quite frankly, my patience has run thin. I don't see how a physician can justify that to himself or his patients.

 

Colleen

There's a lot here that I could go into, but the short comment is that it appears that by the time the report got back to the doctor (i.e., throat culture positive) and this got back to the parents -- enough time had elapsed that the children were already "feeling" better and didn't get antibiotics (i.e., this is largely the parents choosing to address or not). I'll have to go and see if I can find the original clinical trial invite as I wonder what parents were thinking was going on when they signed up.

 

I'm pretty sure if I was part of the clinical trial and heard my kid had a positive throat culture, I'd be getting antibiotics :-)

 

One other thing to consider is that the whole longitudinal study and data is the same set of kids that Singer, Kurlan and Kaplan were all writing about in other papers. The same methodological flaws that existing in the original sample group, exist here. Essentially if you wanted to know if GABHS caused exacerbation in OCD-only cases this study tells you nothing. If you wanted to know if GABHS caused exacerbations in long established TS cases, the studies tell you something. What you really get is that:

  • if you pull a kid from the Tourette's study group -- it'll likely be a boy
  • if you pull a kid with established tics -- exacerbations will be due to lots of things
  • if you pull kids with a baseline CYBOC score > 16, these will fluxuate about 5-10 pts over a year
  • if you ask tic folks to evaluate OCD, you generally don't have them recording anxiety or other comorbidities
  • once a study is conducted with the term PANDAS and non-PANDAS - those terms will stick even if the kids don't match the actual PANDAS criteria upon reflection (rather than at time the study was constructed). Remember these kids were recruited in 2002 before the clarification by Swedo in 2005.

 

Sigh.

 

Buster

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Buster, Gilbert had 6 kids he felt had pandas in 2005. R u saying all these kids were from 2002? I know Gilbert serparates his pandas from his TS. R u sure these were TS only kids cuz in cincinnati there were definate pandas kids around Gilbert and diagnosed as such in 2005.

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Quoting from the study:

 

"All subjects were sequentially enrolled at one of six clinical settings( Yale University, Cincinnati Children's Hospital Medical Center, New York University Child Study Center, Johns Hopkins University School of Medicine, University of Alabama at Birmingham, and University of Rochester School of Medicine) during a 4-year, 6-month period from July 2002 to December 2006."

 

The diagnostic criteria used was the one from Swedo's 1998 paper on the first 50 cases (i.e., Swedo's clarifications from 2004 and 2005 on episodic course, co-occurent psychiatric conditions, and acute and dramatic onset were not used).

 

In Table 1, 26/31 proported PANDAS cases had a diagnosis of TS (inclusive of chronic tic disorder). 49/53 had such a diagnosis in the non-PANDAS cases. To have a TS diagnosis required vocal and motor tic with no remission lasting for > 3 months.

 

22/31 had OCD in the proported PANDAS group (but this is co-occuring with TS) and 35/53 had OCD in the non-PANDAS subgroup (with the same coocurrence with TS).

 

You'll see that there could be only 5 OCD-only PANDAS cases and only 4 OCD-only controls.

 

As such, the study is underpowered to reach any conclusion regarding OCD in the absense of TS diagnosis.

 

Buster

 

 

 

Buster, Gilbert had 6 kids he felt had pandas in 2005. R u saying all these kids were from 2002? I know Gilbert serparates his pandas from his TS. R u sure these were TS only kids cuz in cincinnati there were definate pandas kids around Gilbert and diagnosed as such in 2005.

Edited by Buster

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Thanks buster, I think I better understand your info now. Ur right kids selected were those with tic disorders. I know Gilbert use to use strep titers and correlation of symptoms and rise in strep titers to identify those he felt had pandas. My dd never had strep titers, so she was eliminated as a possible pandas diagnosis. They really don't get it do they, even after my dd at age 7 was hospitalized for 9 days for refusing to eat, felt spiders all over body and was close to psychotic, then she got suddenly better for 2 years and again another dramatic personality change and small tics, plus serious intrusive thoughts at age 9, plus frequent urination, but no strep titers. Gilbert said no way pandas, measured step titer for a year on her on and off, anxiously trying to correlate her symptoms with titer rise, never happened. This study had wrong selection criteria. Thx.

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Colleen

 

I agree- these docs get on their high horse and do not care about our kids. They forget, sometimes they should stop looking at study after study, and look at the REAL suffering of our kids- and try to help- even if that means thinking out of the box. I mean didn't they learn anything in med school? Isn't this why they get the big bucks?

 

I have spoken several times w/ one of these docs, and even though he thinks it is very likey my dd has pandas- he told me NOT to come to him (and he is the head of neurology at his hospital). Also, another major local hospital does not treat pandas- I called the neurologr dept, and there is not a doc there that will see a pandas patient.

 

If physicians wish to pick and choose their patients they can enter into a specialty. If a physician chooses to never treat children, they could specialize in geriatrics. If they choose to never treat neurological disorders, they can specialize in podiatry, obstetrics, etc.... BUT when a physician chooses a specialty of neurology, yet flat out refuses to treat a patient with a neurological disorder, I personally feel this is absolutely wrong and contradicts the hyprocratic oath. Telling a mom to not bring her neurologically ill child to him, head of neurology, is wrong, wrong, wrong. These physicians ned to be called out.

Colleen

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Ha.

 

We went to a local Ny neurologist who has a good rep. They took my insurance copay, we saw the doc for 10 minutes, she tried to feed us some outdated and irrelevant info on pandas, said my daughter would be fine- go see a psych.

 

Just got a $600 bill (claiming they don't accept my insurance).

 

It will be a cold day you know where before they see another dime.

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Colleenrm - Amen, Sister!!! :wub:

 

DCMom - OMG! That is so insane. I'd fight that - they should not have taken the co-pay.

 

I once got a letter from a psychiatrist saying I had "refused to follow the care guidelines" and they could no longer treat her. I was there for 30 minutes, they had no clue what was going on, and at the end just said "well, we can offer SSRIS..." I didn't refuse their care, they clearly had no clue about how to care for her". I asked for a therapy recommendation to start with, and then called ALL the numbers they gave me. 100% of the therapists said "we do teens and adults only" (our dd was 6 at the time). I have been mad a lot during this illness, but that letter, to me, was everything that is wrong with medicine. No one cared for my child, they just were practicing CYA.

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So bringing this full circle back to the article :-)

 

I think the article and ones like it will be used to say:

  1. The definition of PANDAS is too broad as currently written and includes kids who do not have the disease
  2. The evidence for assertion (1) is going to be Kurlan, Singer, and now Leckman's papers where they will show that Tourette's Syndrome kids meet the "previously published criteria of PANDAS" even though they don't have the explosive OCD symptoms.
  3. The neurologists will save face saying "we weren't arguing whether kids had auto-immune triggered OCD" just that the definition was too broad. That's all we were trying to say (yeah, right....)

 

I also think the following things are likely to occur over the next 5 years:

  1. New studies will focus on the original explosive OCD trait and the cooccurance of other psychiatric conditions
  2. This will tighten the criteria and neurologists will feel heard and Swedo will be vindicated/proven
  3. There's likely to be some fight on whether PANDAS is a mild form of Sydenham Chorea and whether Sydenham Chorea should be allowed to be a standalone diagnosis for Acute Rheumatic Fever, but that's the fight for the DSM-VI book.
  4. Doctors will switch from testing unreliable ASO and AntiDNAseB titers to using symptoms and specific tests that check for anti-neuronal antibodies.
  5. It will become common practice and the AMA will recommend that throat cultures be given anytime a child presents with explosive OCD traits (and regressive behavior)

 

Okay, the last 2 are just things I wish for, but I can see happening within the next 5 years.

 

I truly think we'll see a whole bunch of these "repositioning papers" where the abstract is of the form "did not confirm existence of ..." and then the details of the paper will talk about the paper being "underpowered for OCD-only" or "selection criteria used the 2002 criteria rather than the revised 2005 criteria" or "that we found one case fitting the definition in retrospect in our control group indicating that the admittance criteria needs to be fixed". This posturing will happen over the next year as the evidence mounts. Bottom line, this will resolve. We're just likely to face another 5 years of the war until the original Perlmutter study is redone.

 

Buster

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Boy, this really hurts the cause. In summary, there was no signficant causal relationship found between exacerbations and GABHS infection.

 

However, the authors do a good job of describing the shortcomings of, yet again, this study. They explain that the next study really needs to focus only on newly diagnosed cases of PANDAS and that the diagnostic criteria should be broadened. Also, this statement is nearly the most important in print:

 

Although GABHS infections have been postulated as the main initial autoimmune response-inciting event contributing to the sudden onset of severe neuropsychiatric symptoms in a subgroup of patients, it is well documented that sudden OC and tic symptom onset or worsening can be triggered by other infectious agents (e.g., herpes simplex virus, varicella zoster virus, human immunodeficiency virus, Borrelia burgdorferi, Mycoplasma pneumoniae, sinusitis, and the common cold). [24] , [52] , [53] , [54] , [55] , [56] , [57] , [58] It will be important for clinicians and scientists to continue to work together across the disciplines of pediatrics, family medicine, neurology, child and adolescent psychiatry, immunology, and microbiology to advance our knowledge and improve our understanding and care of these children regardless of the diagnostic label they carry.<BR style="mso-special-character: line-break"><BR style="mso-special-character: line-break">

 

I whole-heartedly agree!

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Buster---as for the "specific tests for antineuronal antibodies"--are you talking about the 4 that Cunningham tests for, or some of the others that have been tested by other neuros??

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