Moving From PANDAS to CANS?

[PowPow]

I will agree that I am really, really concerned about the autoimmune term disappearing from the description. Whether it is PANS or CANS (and whether it is a PANDAS doc or an "anti-PANDAS" doc saying it)-- it is ignoring the CAUSE of the disorder. My children did not lose their normal functioning and sanity due to NOTHING. It was not even due, directly, to an infection! It is due to the fact that they have an AUTOIMMUNE problem that attacks their brain. This has been proven due to their excellent response to pex, steroids and IVIG. This is really frustrating.

 

UUGGHH. more to stew over. just what I needed.

 

If CBT or SSRI would work for my kids (and we have tried and trying again!) I would fall on my knees in gratefulness. And only, only, if it was because I was a rotten parent! (not saying that I am not, but that would be an easier answer)

 

I would not wish this on anyone- not even my worst enemy-- but if some of these doctors were to wake up to PANDAS nightmare in their own children or grandchildren tomorrow- they might see it differently. Life is not black and white, unfortunately, no matter how much scientific brains would like it to be.

[PowPow]

Hm, but they say " Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy. "

 

They don't say "don't use immunosuppressive therapy," they just say use the most appropriate therapy.

True, but given that PANDAS has such narrow criteria at this point, and given that SSRI & CBT are the recommended tx by the NIH (after abx to treat the active strep throat)- it is saying that. What about the kids who have this (whatever "IT" is) and do not have the strep infection? Those who have lyme? or some infection that is not even considered as a trigger for psychiatric problems? How about toxoplasmosis, leptospirosis? I realize I sound argumentative to you, LaurenK, but I am not trying to be. These are all rhetorical questions.

[eljomom]

LaurenK--I keyed in on that same quote----I would be THRILLED to find a doctor (or to have FOUND a doctor, I should say...) who would have done a "comprehensive history and exam, blah blah blah....". So sure, if HE is actually going to do that, and not have blinders on to possible autoimmune causations, then great! He can take the title of "The Doctor Who MANDATED Thorough Evaluation and Appropriate Treatment of CANS..."

Seems to me almost like a way for him to slink his way back in to the Pandas world, without entering Pandas...so he had to change the name to save face...I think MAYBE he wants back in

 

Hm, but they say " Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy. "

 

They don't say "don't use immunosuppressive therapy," they just say use the most appropriate therapy.

[kimballot]

OK - I was able to get the full text article and I just read it WITHOUT wanting to vomit or hit someone- so that is a good sign considering the authors. It does seem to be an attempt to bring the two sides together (call me Pollyanna) by giving credit to Swedo et al. early on by saying: "Although this disorder was conceived years ago, investigators at the National Institute of Mental Health deserve credit for formally establishing a set of criteria that could be critically evaluated."

 

They then go on to identify the 5 criteria (below) and then give the limitations of each of the criterion... most of which we have discussed on the board. For example:

 

(1) prepubertal onset, usually between 3 and 12 years of age; I think most of us realize that the onset can be before 3 or after 12... we've seen it in the kids on this board.

 

(2) obsessive compulsive disorder (OCD), a tic disorder (lifetime diagnos- tic criteria), or both; They question why these two are picked as hallmarks of the disorder when so many kids have periods of tics and OCD without PANDAS and when saying "Further, it is not clear why required psychiatric symptoms should be restricted to OCD. A broader set of neuropsychiatric symptoms, including general anxiety, phobias, developmental regression, poor con- centration, emotional lability, and sleep problems, with an emphasis on OCD may be more appropriate.

 

(3) sudden ‘‘explosive’’ onset of symptoms and course of recurrent sudden exacerbations and remissions; they question this because there is no clear definition of "explosive" onset.

 

(4) temporal relationship of exacerbations with GABHS infection; The authors actually do a decent job (IMHO) of explaining why it is so dang hard to diagnose a strep infection..... and talk about the need to do at least 2 ASO/DNASE B titers to look for a change over time. What they do NOT do (and I don't like) is talk about how some kids do not mount elevated ASO / DNASEB even with an infection due to immune deficiency... but that is another story.

 

(5) presence of neurologic abnormalities during periods of symptom exacerbation (tics, hyperac- tivity, choreiform movements).] The authors seem to mostly question the choreiform movements here - questioning if they are really chorea and if some of the kids actually have sydenham's chorea.

 

They then try to save face from their earlier work by discrediting strep as the only trigger (no kidding... have they NOT been reading this board??) and they site their own earlier works that back this up. They do acknowledge mycoplasma and lyme, along with other infections, as triggers.

 

Then they go on to propose CANS - which - as everyone has mentioned - does NOT include the autoimmune component and is slightly different from PANS, which we are all starting to embrace.

 

I think Dr. T also touched on the idea that the autoimmune was being dropped in PANS in one of the recent videos (http://www.latitudes.org/forums/index.php?showtopic=15930)... saying that the idea of antibodies being the cause may not be entirely correct and it may have as much or more to do with cytokines and other immune chemicals. I guess that is up in the air right now... though I fully believe this is an immune disorder.

 

Singer et al also went on to recommend some tests for CANS and I am listing them below. They say: "After a complete history and examination, the diagnosis of CANS mandates a comprehensive laboratory evaluation (Table IV). Whether the entire suggested diagnostic battery should be obtained in all individuals remains unclear. When symptoms are severe, incapacitating, persisting, or accompanied by somnolence, seizures, and/or a movement disorder, complete testing should be performed. For individuals with a movement disorder, a videotape of the symptoms should be reviewed with a neurologist having expertise in the field."

 

Here are the tests they recommend in Table IV - I am not thrilled with the lack of immune tests, but there are some other good ones here:

 

 

Blood Complete blood count Basic metabolic panel Liver function tests Ammonia Sedimentation rate ASO Anti-DNAseB Thyrotropin Anti-thyroglobulin antibody titers Anti-thyroperoxidase antibody titers Toxicology screen Antinuclear factor NMDA receptor antibody Other: when indicated, testing for mononucleosis, Borrelia burgdorferi,

Mycoplasma pneumonia, etc.

 

Urine Urinalysis; Toxicology

Heavy metal screen

 

Lumbar puncture (assuming concern for a CNS infection or lacking a clear

etiology): Cell count with differential Glucose Protein Gram stains Cultures Viral PCRs Immunoglobulin G index Antibody titers (NMDA, AMPA, GABAb receptors)

 

Brain imaging MRI preferred CT if concern for acute hemorrhage or trauma

EEG

 

Video For patients with movement disorders

[eljomom]

PowWow--just said this exact thing to my husband earlier today: "but if some of these doctors were to wake up to PANDAS nightmare in their own children or grandchildren tomorrow- they might see it differently." I was telling him about being the laughing stock at the pediatricians because when i took dd in for throat culture with no symptoms other than tics going into overdrive for a good week.....and told her that our pandas specialist told me to tell them to "do an aggressive culture and do the nose too"---well, she was aggressive all right. I jokingly told her the joke (also relayed by a pandas specialist!!!) that if you don't see a speck of blood on the swab you probably weren't aggressive enough. Well, she about fell on the floor, and after she swabbed my dd, she held the swab up and said "sorry, no blood." So the next time we went in for a culture, the nurse says "don't worry, I remember you......dr. so-and-so was joking with me as I was walking in here" CHAPS MY you-know-what. thing is, if it was their kid, not only would they have spare rapid tests in their own medicine chest at home, they would probably have had their kid darn near cured by now....

sorry...i digress...

 

I will agree that I am really, really concerned about the autoimmune term disappearing from the description. Whether it is PANS or CANS (and whether it is a PANDAS doc or an "anti-PANDAS" doc saying it)-- it is ignoring the CAUSE of the disorder. My children did not lose their normal functioning and sanity due to NOTHING. It was not even due, directly, to an infection! It is due to the fact that they have an AUTOIMMUNE problem that attacks their brain. This has been proven due to their excellent response to pex, steroids and IVIG. This is really frustrating.

 

UUGGHH. more to stew over. just what I needed.

 

If CBT or SSRI would work for my kids (and we have tried and trying again!) I would fall on my knees in gratefulness. And only, only, if it was because I was a rotten parent! (not saying that I am not, but that would be an easier answer)

 

I would not wish this on anyone- not even my worst enemy-- but if some of these doctors were to wake up to PANDAS nightmare in their own children or grandchildren tomorrow- they might see it differently. Life is not black and white, unfortunately, no matter how much scientific brains would like it to be.

[MomWithOCDSon]

Hm, but they say " Although inclusion in CANS requires only the acute dramatic onset of symptoms, we mandate a comprehensive history and examination, consideration of a differential diagnosis, an active search for a specific etiology through appropriate laboratory testing, and treatment with the most appropriate therapy. "

 

They don't say "don't use immunosuppressive therapy," they just say use the most appropriate therapy.

 

Oh LaurenK, God love you for your optimism! Again, I think some of us have just been around this whole mess long enough, and come up against enough obstacles and obstinate "medicine" that we're not as ready to see the positives in this latest paper, assuming there are any. I suppose, in the end, only time will tell. But the points made by some others here are well taken. "The most appropriate therapy" may, indeed, be a judicious response to all the mysterious symptomology Kurlan claims currently defy medical explanation. But then again, given his and his group's historical positioning in terms of PANDAS, it seems more likely that "the most appropriate therapy" is a smoke-screen for their established anti-PANDAS stance.

[dcmom]

This article absolutely states that for pandas the routine use of antibiotics and immunomodulatory treatment (steroids, ivig, pex) are NOT recommended. This is in the second to last paragraph of the full text.

 

I am completely optimistic about pandas, my kids are doing well, and I think if parents can obtain proper and aggressive treatment, it doesn't have to be so hard.

 

BUT do not be fooled, the authors of this article DO NOT care about our kids, they do not understand their suffering, and they WILL not treat our kids. Their "appropriate therapy" for PANDAS (and it clearly states this point) is exclusively "symptomatic"; SSRI's and CBT.

[kimballot]

This article absolutely states that for pandas the routine use of antibiotics and immunomodulatory treatment (steroids, ivig, pex) are NOT recommended. This is in the second to last paragraph of the full text.

 

I am completely optimistic about pandas, my kids are doing well, and I think if parents can obtain proper and aggressive treatment, it doesn't have to be so hard.

 

BUT do not be fooled, the authors of this article DO NOT care about our kids, they do not understand their suffering, and they WILL not treat our kids. Their "appropriate therapy" for PANDAS (and it clearly states this point) is exclusively "symptomatic"; SSRI's and CBT.

 

Yes... I agree that they do clearly state that routine use of antibiotics are not recommended when the underlying condition is not known. They state:

As in all medical conditions, therapy for CANS should be based whenever possible on the specific diagnosis. For patients in whom the primary diagnosis is undetermined or there is no known therapy for the primary condition, symptomatic therapy is indicated for those indications causing distress or functional disability. Recommended treatments for OCD are selective serotonin reuptake inhib- itors; for ADHD, stimulants; for chorea, dopamine receptor antagonists, valproate, or tetrabenazine; and for tics, cloni- dine, guanfacine, or a dopamine receptor antagonist.

Because the existence of a PANDAS condition remains con- troversial, the routine use of antibiotics or immune- modifying therapies (corticosteroids, intravenous immuno- globulin, plasma exchange) is not recommended. In the fu- ture, any therapy for idiopathic CANS, especially those directed specifically toward infectious or immune etiologies, should be evaluated in well-designed clinical trials before their general prescription.

 

I hope practitioners do not take this to mean that you should not look for an underlying cause and treat it. I think they are saying that not everyone with tics or OCD has PANDAS (CANS) and that we should not automatically put everyone on antibiotics, steroids, or IVIG or PEX. The word "routine" here is certainly not clear. I don't think even the strongest PANDAS Docs "routinely" put kids on IVIG before trying antibiotics, steroids, and such. Also I don't think most kids with PANDAS end up at a PANDAS doc - so by the time they get there their case is far from "routine".

 

I am not sure how doctors can do otherwise at this point. If every doctor aggressively looked for infection (including mycoplasma and lyme) among children with sudden onset tics or OCD using the tests these authors have identified and then treated the infection... we would be way ahead of the game (though I would like to see immune status panel and C3D at least included in the tests).

 

Regarding whether these authors care for our kids or care more about their careers... well... I've also not been impressed with past actions and I also approach anything by these authors with skepticism.

[tpotter]

Although I really question Kurlan and Singer, I have to agree with KimBallot. Personally, the abstract (I couldn't find the article, but will look more later, and also will be asking Dr. L. and our pediatrician their take) appeared to me to be more of a "saving face." I agree this article gets more docs to do lab work because of sudden onset OCD, tics, movement disorders, etc., then we are 10 more steps ahead of where we were. There's certainly no doubt that this is an autoimmune disorder, but I don't want to get caught up in the terms, but rather, what can be done to diagnose and treat.

 

As far as the comment about doing what is necessary to treat it...that' doesn't bother me, because honestly, they are not advocating to do SSRI's if it isn't necessary (actually, the NIMH would do more good on that one if they would take the ridiculous comment out about treating OCD and SSRI's. It looked more to me like they were saying that if this is infection triggered, then do what is necessary.

 

Again, just my opinion, and there's no question I've been to some really horrible people over the years.

[dcmom]

I don't want to belabor the point- but I do want to be clear, because this article does us all a disservice.

 

They DO recommend looking for the cause. And, if the cause is infection they recommend appropriate therapy. This means, if your child has strep, you will be prescribed 14 days of a cephalosporin (most likely). That is it.

 

Beyond this, they recommend symptomatic treatment- which would mean appropriate meds for OCD, tics, or ADHD.

 

See their chart which recommends symptomatic treatment ONLY for pandas (while SC gets steroids, etc). YOUR doctor is going to show you this chart, and use this as the rationale to refer you out to psych.

 

They are clear that they do NOT recommend the "routine" use of antibiotics or immunomodulatory treatments FOR PANDAS. Prior to these treatments being tried they want to see clinical trials done for efficiacy. Well- this leaves our kids stuck. I can bet they will NOT accept any trials (they don't accept ones that HAVE been done) and they will argue this for ANOTHER fifteen years. In the meantime OUR kids get no treatment?

 

There is a lot of history here with these docs, and I think you need to read between the lines a little. This is a response to discredit the wonderful paper that came out in the last year "A way forward". They are not looking for a way forward, they are looking to cut us off at the knees.

 

(and I am not a bitter person by nature, lol).

[LNN]

At the risk of having tomatoes thrown at me, I'll toss out a contrary idea. I personally have come to see autoimmunity as a symptom and not a cause. A B cell producing an auto-antibody that attacks the wrong cell is caused by something gone awry. IMO it is not the cause itself. And the mass production of these B cells and the failure of T-Reg cells to call off the dogs and make the B Cells stop replicating - what causes this mis-management of the body's immune system? Why is the body attacking itself and producing damaging cytokines in the process? Why can the body not rid itself of the oxidative damage quickly enough?

 

If multiple infectious agents can trigger similar neuropsychiatric symptoms, then the theory that PANS is autoimmune becomes less of a sure thing in my mind (again, please don't throw daggers). I say this in the hopes of a discussion, some maybe someone can show me where my thinking is off. But...The original PANDAS theory as I understood it was that a susceptible child got a strep infection and for some unknown reason (cause unknown), the host produced B-cells that saw the M-protein on the outer surface of the strep cell, mis-identified a similar protein on the surface of a cell that's abundant in the basal ganglia, and during a breach of the BBB, mistakenly attacked the self-cells, triggering the production of cytokines (CamKII), which then called more B-cells to the area. The body's lack of T-Reg cells prevented the self-attack from being promptly quieted and the lack of T-Regs prevented these Rambo B-Cells from being destroyed.

 

But if multiple infectious agents can trigger neuropsych behaviors, I personally have a harder time with the hypothesis that it's the similarity in M proteins that is behind an auto-antibody production. Now, I am certainly limited in my knowledge of this stuff once it gets to highly specific details. And I certainly believe cytokines and the immune system are key factors. I do believe PANS is an immune dysfunction. But I'm not as sure of auto-immune as I once was. How does your body suddenly respond to multiple antigens, with different outer surface proteins by always producing the same b-cells that always attack the basal ganglia because supposedly the self-cells look just like all these other bacterial cells? And how could a virus, which most likely has an entirely different protein profile and lives within a red blood cell, provoke a similar auto-antibody response?

 

An alternative that is making more sense to me is stolen from Yasko and Usman - both ASD doctors who spend a lot of time treating patients for methylation, heavy metals and chronic infection issues. Their work focuses on things that block the immune system from performing properly and those blocks then cause all sorts of toxic buildups (metals, free radicals, bacterial toxins) to damage the body and cause inflammation. Both the ASD and lyme world has a lot of focus on the damage chronic bacteria can do by hoarding metals in biofilms and stealing essential nutrients that the brain needs to function properly, creating an absolute mess of brain chemistry (thus producing all the same symptoms we all know). I tend to think of PANS as a severe breakdown of the immune and detox systems - which absolutely causes all the symptoms we all live with. And the treatments many find effective - abx, IVIG, steroids - would all help with inflammation and chronic infection, without auto-immunity being at play.

 

I just don't see how to say it's auto-immune (which in my mind restricts the disorder strictly to one antigen, namely strep) and how to expand the disorder to include multiple infectious triggers (which I fully support). I guess I can understand how PANDAS could be described as auto-immune. But if you're going to broaden the name to PANS and include other antigens as triggers, I think you need to drop the auto-immune. Again, not trying to be disrespectful of those who feel differently. Just trying to re-frame the issue as a broader immune dysfunction, not necessarily a specific production of auto-antibodies. Prednisone squashes inflammation, even the inflammation caused by an appropriate antibody response, not just inflammation caused by auto antibodies.

 

To that extent, having not read the paper, I would not be upset by the naysayers (whom I completely distrust) expanding the criteria and advocating for a full workup to uncover the etiology for any one individual, well beyond strep. Some of our kids - not all - have benefited from looking beyond strep. I do however, distrust their agenda and don't believe they have the understanding to recommend the appropriate testing to accomplish this.

Edited January 6, 2012 by LLM

[dcmom]

No tomatoes here

 

I cannot argue auto-immune vs cykotine storm- I am just not that scientifically literate

 

From my perspective, though, things are different- and we both know we (LLM and I) have headed down different yet parallel paths, yet we are dealing with SO much of the same, I value our friendship and her support greatly.

 

I have been fortunate (I guess) in that my kids have been textbook "Swedo-style" PANDAS kids.

 

Totally normal healthy kids. Overnight onset of OCD, mild chorea, sep anxiety, etc (the only thing we haven't had are tics and ADHD) at the same time as positive strep culture. Immediate and full response to immunomodulatory treatments (pex, steroids). Long (not long enough) periods of "normal" between exacerbations. Episodes after the initial caused sometimes by things other than strep (viruses, etc). This is all written about in Swedo's work.

 

So, for me (other than a fruitless, waste of time, detour to an LLMD) things have been relatively (ha) simple. I tire of testing and retesting them for everything under the sun, and believe me, we have pages and pages of results- when ALL come back normal. No immune deficiencies, no myco p, no lupus, yada, yada, yada. The ONLY test that showed an abnormality was Dr Cunningham's CAM kinase and anti-neuro antibodies.

 

So I look at what my kids have as something on the same spectrum as SC, rheumatic heart disease and even psoriatic arthritis (which may be caused by strep). Since these illnesses are generally thought to be autoimmune- I guess I just accept this at face value. And since my kids (so far) respond very well to the treatment for autoimmune disorders, I (currently) have that luxury. I have come to a sort of acceptance that this is a disorder that we may need to be vigilant about long term, and I have let go (a little bit) of searching (daily) for a total cure. I guess I feel like if so many other people and docs cannot come up with cures for all of the other autoimmune diseases out there, the reality of ME finding it is small. I think this gives me some peace, and an ability to manage our lives much better on a daily basis. Maybe this is bad in a way, too, I don't know.

 

This is why I am fearful (a little bit) of losing the simplicity of PANDAS.

 

Yet- I do read this forum faithfully- keeping an eye on what everyone is doing.

 

I honestly don't know what this means. Why do some kids recover easily, and others have a really hard time? Why do some treatments work for some of our kids, and not for others? Are we just dealing with different kids? or different illnesses? different genetic issues?

 

Jeesh!

[LNN]

E - I too value all your support and hand holding all these years. I in no way want to question they way you've made sense of it all for your kids and what works for them. When I hear that your ballet dancer has resumed her passion - how can you argue with that? It makes my heart sing!

 

I almost cancelled my post more than once because I don't want to sound like I'm somehow wiser than all the docs who make a living being brilliant and trying to solve this riddle. I sometimes don't post on the Pandas forum because I agree with you - sometimes people like me tend to complicate Pandas and make it harder for newcomers to sift through it all to get help for their kids. PANS does lose the "simplicity" of PANDAS (simplicity - Ha! that's almost funny!). And maybe PANDAS is auto-immune like other autoimmune disorders and I do a disservice to "pure" Pandas families by trying to make it something it's not. IDK.

 

But aside from my bad trait of not being able to keep my mouth shut, the other reason I post is for the kids you mention who don't respond in a "classic" way. The ones who haven't found remission. Maybe this group needs a new name - and maybe that's PANS - and PANDAS should be discussed as a sub-set with a distinct protocol, so not every parent feels they have to turn over every rock. When I go off on methylation like it's my new religion, I guess it's because it's a broader view and I think holds the key for some non-responders. It's the sentiment MommaKath posted a few days ago - for her son, it was an underlying obstacle that needed to be addressed before other healing could occur. And to get to that healing, for some of us, it meant more testing, more digging, more experimenting. I don't mean that new parents should immediately do genetic testing. not at all. But if their kids don't enjoy long remissions, then it's something to consider. I say this especially for the parents who did the Pandas then lyme dance and are still not seeing those elusive results.

 

Back to the original post, despite my cynicism about Kurlan and Singer, I suppose it is a good sign that they've evolved from their 90's mantra of "strep can't cause neuropsych issues and TS is just bad genes, here- take this pill" to today's "lots of infections can trigger neuropsych and we should do a better job looking for triggers" - tho I still doubt their ability to do more than a "guy look" (you know - open the fridge, not see the milk because you bought a brand with a yellow label and not the usual blue label and declare "honey, we're out of milk").

[EAMom]

Oh good grief, they didn't even put "throat culture for GABHS" on the list of recommended tests.

 

I now have a scary image of docs doing lumbar punctures and MRI's on our kids but refusing to do a simple throat culture.

Edited January 6, 2012 by EAMom

[EAMom]

Back to the original post, despite my cynicism about Kurlan and Singer, I suppose it is a good sign that they've evolved from their 90's mantra of "strep can't cause neuropsych issues and TS is just bad genes, here- take this pill" to today's "lots of infections can trigger neuropsych and we should do a better job looking for triggers" - tho I still doubt their ability to do more than a "guy look" (you know - open the fridge, not see the milk because you bought a brand with a yellow label and not the usual blue label and declare "honey, we're out of milk").