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My understanding is that the white paper hasn't even been started yet, and that it will be submitted to one or two journals to be reviewed before a decision to publish is made. If this is correct, I don't think it will be out as soon as September.

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Re. "complex":

 

Psychiatry. A group of related, often repressed ideas and impulses that compel characteristic or habitual patterns of thought, feelings, and behavior.

 

Medicine. The combination of factors, symptoms, or signs of a disease or disorder that forms a syndrome.

 

 

 

PANDAS is, indeed, an unfortunate name, now overburdened with an unfortunate bunch of baggage. It's an absurd problem, with horrific ramifications. Post-infectious neuropsychiatric disease -- including Sydenham's chorea, encephalitis lethargica, and God-only-knows-how-many other named or unnamed subtypes, which may not even be entirely discrete from one another -- has been around probably as long as people have been around. It's a mysterious, fluctuating spectrum. Would anyone really have the audacity to suggest that "PANDAS"-type illnesses didn't exist before the term "PANDAS" was coined?...

 

Time for doctors to forego the petty politics and cook-book medicine, and be scientific and humane.

 

Thinking of changing my avatar to "Harumph!"

 

Tenacity

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Re. "complex":

 

Psychiatry. A group of related, often repressed ideas and impulses that compel characteristic or habitual patterns of thought, feelings, and behavior.

 

Medicine. The combination of factors, symptoms, or signs of a disease or disorder that forms a syndrome.

 

 

 

PANDAS is, indeed, an unfortunate name, now overburdened with an unfortunate bunch of baggage. It's an absurd problem, with horrific ramifications. Post-infectious neuropsychiatric disease -- including Sydenham's chorea, encephalitis lethargica, and God-only-knows-how-many other named or unnamed subtypes, which may not even be entirely discrete from one another -- has been around probably as long as people have been around. It's a mysterious, fluctuating spectrum. Would anyone really have the audacity to suggest that "PANDAS"-type illnesses didn't exist before the term "PANDAS" was coined?...

 

Time for doctors to forego the petty politics and cook-book medicine, and be scientific and humane.

 

Thinking of changing my avatar to "Harumph!"

 

Tenacity

 

Tenacity - I like your style! Save this post. You may be publishing it or using it in a presentation one day!

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Gilbert went through different studies citing why he felt they were not sound. He mentioned Hopkins and studies done that had conflicting results. He left the impression that PANDAS has no creditable science behind it to date. He left the impression that docs cannot and should not treat PANDAS. I know he personally believes some TS is immune mediated, or could be. But he wants better science and better drug studies to justify treatment. In some ways he left the impression that the new info about to be published will further justify his stance that Pandas does not have credible science behind it. So I am very confused. I am just hoping this is not the case and it is really the white paper he is referring to. Not another Hopkins study showing how Pandas is not backed by science. I have to say I am confused as to the timing and content of this lecture. U can call UC at their Continuing Medical Education Dept to see if they have a DVD of his lecture. They have stuff on line its easy to find.

 

 

 

Why is Dr Gilbert personally going after Pandas?--again, I can only hope that he meant we should be prepared to make better science happen in an effort to substantiate Pandas.

 

If that is what he is calling for, in an effort to ultimately help children for whom Pandas has crippled their childhood, then more power to him--and I hope he is willing to step up to the plate to do so.

 

Tenacity, you brought up some excellent points.

Edited by T.Mom
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Well, we don't have a say... Dr k said last week they were arguing over "four words".

Reminds me of a research paper I did in college on a disorder called Gay Related Immune Deficiency "GRID"...remamed AIDS a couple years later.

I'm not a fan of defining the condition in the name, while there are still studies going on changing it's definition.

Since related to sydeham's I wish they would borrow from that well known (respected?) disorder.

Syndrome would be better than complex.

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They actually called AIDS GRID at one point. Oh my gosh that is just as bad as the child crazy complex. These guys are docs not marketers, they should solicite advice on these things that are out of their area of exoertise. The name could affect care, funding and just overall acceptance of the illness. I hardly want to go to my dd's teachers and tell them she has the autoimmune crazy complex. PANDAS at least helped explain it was strep related, something infectious, clearly explaining she "caught" this illness. The more vague, the more people don't relate and more controversy will arise. Sydehams Chorea or RF have always been the easiest to relate to this illness. Her teachers and family members could look it up on the internet and understand.

Well, we don't have a say... Dr k said last week they were arguing over "four words".

Reminds me of a research paper I did in college on a disorder called Gay Related Immune Deficiency "GRID"...remamed AIDS a couple years later.

I'm not a fan of defining the condition in the name, while there are still studies going on changing it's definition.

Since related to sydeham's I wish they would borrow from that well known (respected?) disorder.

Syndrome would be better than complex.

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I kind of wish we could stop using the word crazy on this site. No one is going to call it the crazy kid syndrome. Neuropsychiatric illnesses are those that effect the brain for a wide variety of reasons. I expect that lots of areas of mental illness will likely be found to have an infectious base. I'd like to advocate that whether the mental illness is a infection or inflamation based, or a genetic base, that we could be kind about those. There are all kinds of parents here. The word neuropsychiatric is in the current definition of PANDAS. I think the issue is to take the stigma off diseases of the brain, and we are the first line in doing that.

 

I admit to being a little sensitive about that word. And I doubt that our guesses about the name are accurate anyway!

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They actually called AIDS GRID at one point. Oh my gosh that is just as bad as the child crazy complex. These guys are docs not marketers, they should solicite advice on these things that are out of their area of exoertise. The name could affect care, funding and just overall acceptance of the illness. I hardly want to go to my dd's teachers and tell them she has the autoimmune crazy complex. PANDAS at least helped explain it was strep related, something infectious, clearly explaining she "caught" this illness. The more vague, the more people don't relate and more controversy will arise. Sydehams Chorea or RF have always been the easiest to relate to this illness. Her teachers and family members could look it up on the internet and understand.

Well, we don't have a say... Dr k said last week they were arguing over "four words".

Reminds me of a research paper I did in college on a disorder called Gay Related Immune Deficiency "GRID"...remamed AIDS a couple years later.

I'm not a fan of defining the condition in the name, while there are still studies going on changing it's definition.

Since related to sydeham's I wish they would borrow from that well known (respected?) disorder.

Syndrome would be better than complex.

My husband and I also found it much easier to explain PANDAS as "RF that effects the brain". I do think doctors will be more accepting of it if the name is somehow linked back to RF and SC --- but the problem with that is the exclusivity to being strep triggered.

 

For us, too, it helped put the pieces together of why this happened to my daughter because of the RF on my side of the family (and anxiety/OCD on my husband's)

 

The first time this was explained to me by my daugter's ped, he didn't use the acronym PANDAS...he just explained about the autoimmunity caused by a strep infection that attacks the brain.---in my google search, I came across the NIMH website, and that was the first time I heard the term "PANDAS"....at a later visit he said to me, "When you consider the behavioral changes that occurs with Sydenham's Chorea, then what really is the difference between that and PANDAS?--none really" So at least in his mind they're related.

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If the name is linked by to SC, would they somehow twist it so my son does not fit the critera since he had no movement problems and no tics or would a regular peditrician dismiss him? Because of that,I prefer the comparison to RF.

Edited by Vickie
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Meg, Its not about us, its about the rest of the world. Most people are familiar with Schizophrenia and OCD being neuropychiatric. But it is not in the name of the illness. We alone will not change the stigma of mental illness in our community. Our children have an autoimmune disease that causes neuropsychiatic symptoms but the autoimmune condition also causes other symptoms too. Our children should receive the same care and respect as a child with diabetes or lupus. Both these illnesses have neuropsychiatric symptoms too. I am not tyring to offend u, but teenagers can be cruel and I do not think us alone will be able to change that. Whether u like hearing it or not, I promise u the stigma of this disease will be impacted by what it is named. And that's one discussion that is fair and needs to be addressed. Pediatric autoimmune Neuropsychiatric Complex, is vague and I am sorry but I can see the translation to Child autoimmune crazy complex. Its not nice, but if we can influence this process I think we should as least try. Many read this forum. Our children deserve to be diagnosed with an autoimmune disease not a psychiatric one.

I kind of wish we could stop using the word crazy on this site. No one is going to call it the crazy kid syndrome. Neuropsychiatric illnesses are those that effect the brain for a wide variety of reasons. I expect that lots of areas of mental illness will likely be found to have an infectious base. I'd like to advocate that whether the mental illness is a infection or inflamation based, or a genetic base, that we could be kind about those. There are all kinds of parents here. The word neuropsychiatric is in the current definition of PANDAS. I think the issue is to take the stigma off diseases of the brain, and we are the first line in doing that.

 

I admit to being a little sensitive about that word. And I doubt that our guesses about the name are accurate anyway!

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Is it officially NeuroPSYCHIATRIC or NeuroLOGICAL Disorders Associated with Strep? I've never known.

I'm still on the "don't exactly care" side of this name changing debate. As previously stated, they could call it SOT Syndrome & I wouldn't care as long as it got recognized.

 

Does anyone know what became of the "super secret" NIMH conference a few weeks back??

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So many interesting observations! What a "complex" subject!

 

Some more puzzle pieces (NOT final answers!):

 

I've noticed that the "little" doctors seem compelled to pigeon-hole things, and fiercely defend rigid rule-book definitions of Sydenham's chorea, PANDAS, acute rheumatic fever, etc. But their rigid rule-book ideas don't match up very well with clinical reality. The "BIG" doctors (haven't met many, but I've met a few!) are scientists, with more questions than answers. After reading my first, and very poor, article about PANDAS, I said to the wonderful doctor who finally diagnosed my child, "I'm confused -- What's the relationship between PANDAS and SC? Is PANDAS a subcategory of SC?" He answered, "More the other way around"....

 

If a child has an obvious SC-type movement disorder, with no documented association with strep, is it SC or something else or undetermined? (Note that pregnant women sometimes experience recurrences of their childhood SC. What do their strep titers look like?... If they never received a SC diagnosis in the first place, are they then not officially suffering from a SC recurrence?...)

 

This is at best a tiny piece of the picture -- and may even be outdated (published 2005) -- but it's thought-provoking:

 

Strong support exists for GAS as the inciting agent in the development of rheumatic fever (RF) and its neuropsychiatric expression, Sydenham chorea (SC). PANDAS could be considered as a broadening of SC, or this subtype of OCD/TS may yet have a unique pathophysiology distinct from SC. A possible prototype for examining PANDAS is based on post-streptococcal reactive arthritis (PSRA). PSRA has similarities to the arthritis seen in RF but the criteria for RF are not met; notably, there are few reports of carditis and no CNS involvement. Pathophysiologically, PSRA may differ from RF in that PSRA has been associated with non-group A streptococcus and may have serotypes of GAS different from those associated with RF. (Murphy, et al., ch. 16, Neuropsychiatric Disorders and Infection, ed. Fatemi, 2005.)

 

Various genes, various germs, various subtypes of germs...

 

What I want from a new name is scientific honesty. No more pigeon-holes. The name must respect the mystery....

Edited by Tenacity
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