Moving From PANDAS to CANS?

[PowPow]

I vote for sh#$ on toast

 

(for those who remember).

 

 

I do remember... who came up with that? I think of that frequently

[EAMom]

I vote for sh#$ on toast

 

(for those who remember).

 

Oh, how could I forget $hit on Toast? We'll make that #7.

[JAG10]

That was me. Put it up there! I rank with Singer and Kurlan to throw in my two cents....after all, I went to medical school at the University of Google

[peglem]

I vote for shitontoast( it has to be one word), because if you googled that you wouldn't have to deal with fuzzy critters or kitchenware.

[dut]

peglem - sorry but I've tried that search before and you just get Rachel Ray's Copraphila Recipes page

[dut]

On a more serious note - having not read the full article but reading the responses here and concerns, this piece taken from the Pediatric Academic Society meeting May 2012 info had me worried. The bolding is mine. Is there a shift taking place in other quarters too, where emphasis is moving from autoimmune trigger to symptom presentation, which as others have said might be good as an overall move in search of the wider picture but disadvantageous to children who need treatment now.

 

Maybe I'm reading too much into this extract but it looked worrying in light of the discussion on this thread.

 

"The symposium will appeal to: clinicians and scientists who have been confused by the conflicting literature on PANDAS (and PITANDS); clinicians who evaluate and treat children with behavioral symptomatology; and researchers interested in post-infectious sequelae, etiology and pathophysiology of neuropsychiatric symptomatology, or animal models of behavioral disorders.

 

Objectives:[br]- All Participants: Describe at least one scientific or clinical disagreement about PANDAS that will be eliminated by the PANS diagnostic criteria.[br]- All Participants: Use the three diagnostic criteria proposed for Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) to accurately identify cases.[br]- Researchers: Receive suggestions for clinical, translational and basic science investigations of PANS.

 

Chair: Susan E. A. Swedo, National Institute of Mental Health, McLean, VA

 

Although there is continued disagreement about the nature and etiology of PITANDS and PANDAS, (Pediatric Infection Triggered Neuropsychiatric Disorders; Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections, respectively), there is growing recognition that a subgroup of children with obsessive-compulsive disorder (OCD) are distinguished not only by the acuity of their symptom onset, but also by the presence of numerous comorbid symptoms, including emotional lability, anxiety, and motoric hyperactivity, among others. Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is the new name proposed for the subgroup, focusing attention on symptom onset rather than the postulated etiologies of PANDAS and PITANDS. The diagnostic criteria proposed for PANS have a similar clinical focus and facilitate recognition, diagnosis and treatment of the disorder. In addition to these improvements in clinical care, the revisions promise to provide new opportunities for basic, translational and clinical studies of childhood-onset OCD and related disorders. "

[LNN]

I just read the full article - had to do it early in the a.m. while my blood pressure was still low. I see no olive branches. I see them dismissing Swedo's "retrospective" study on prophylaxis abx because it relied on patient recall. Yes, let's ditch a disease based on an examination of insurance records and diagnostic codes as having more reliability than patient reports. They also completely ignore Hornig's mouse study - it would be rather inconvenient to address that one. They remain idiots in my book. We should all have a fund raiser to fund their retirements and get them out of the picture.

 

DUT - here's my take on the upcoming Swedo presentation that focuses on symptom treatment over etiology...I think the Pandas supporters are tired of being roadblocked by the debate over GABHS and they recognize that other infections can trigger PANS. I suspect they hear from the trenches a fair amount and get that the kids need help now, not 10 years from now. And I think that they get that it's much more than strep. I think they also generally agree that things like IVIG, Pex, abx - help. So I hope/think this presentation is meant to get consensus on definition and focus on effective treatments beyond SSRIs and dopamine agonists, regardless of trigger. Then figure out why it works after establishing that it does work. (the current NIH IVIG study would be a step in this direction - it seeks to prove IVIG is helpful without necessarily "proving" why it works). My impression from things Cunningham has said is that this is the beginning of re-framing mental health by focusing on infetion-triggers and biomedical treatments. But maybe that's just me projecting my own views.

 

Guess Vickie has something to put on her awesome research/social media springtime radar for us

Edited January 7, 2012 by LLM

[kimballot]

On a more serious note - having not read the full article but reading the responses here and concerns, this piece taken from the Pediatric Academic Society meeting May 2012 info had me worried. The bolding is mine. Is there a shift taking place in other quarters too, where emphasis is moving from autoimmune trigger to symptom presentation, which as others have said might be good as an overall move in search of the wider picture but disadvantageous to children who need treatment now.

 

Yes - I have struggled with the shift away from autoimmune as well... also a shift away from infection-triggered (which seems pretty clear, yet not assigning an exact cause). Calling it "acute-onset" (whether it is CANS or PANS) is so very broad. If my child witnesses a traumatic event and then has a sudden onset of OCD or Depression - isn't that an acute-onset of a neuropsychiatric symptom? I can understand removing the autoimmune if we really do not know the role of antibodies vs. cytokines vs. methylation... but it seems to me that the idea that this is triggered by an infection is pretty clear in all the articles and definitions of CANS and PANS... but it is NOT in the title.

[tpotter]

I vote for sh#$ on toast

 

(for those who remember).

[tpotter]

I 2nd it!!!!

[kimballot]

In 2011, how many articles disputed PANDAS? One or two? In 2011, we had 26 news articles, a handful of case studies, a resurrected NIH study, various articles in respected journals including the Journal of Pediatrics (same journal this is in), and represtation at various conferences all acknowledging the existence of infection triggered neuropsychiatric symptoms. These guys have to play catch up. They are being forgotten. They don't like that.

 

 

I agree - CANS you say "we need to pretend we are in the lead again and give this thing our own name before all the folks who have been working tirelessly to move forward say that it can be triggered by any infection and call it PANS"??

[tpotter]

DS16 proposes: CRAPS (Children Really Angry at People Syndrome)

[Bill]

I vote we just call it *#@* and leave it at that!!!

 

I have half a mind to take my d up to Singer and have a work-up -- just to see what he would suggest!

 

Maybe THAT is the answer, start flooding his appointments with Ps kids from the mid-atlantic region -- with our histories and reactions, just to see what the heck he says!

Send him the articles from the last three years, the interviews, etc.

 

Who are the co-authors (Wolf seems to be a colon-guy !?! maybe just in training...)

 

 

First - I think Beth Maloney is my hero.

 

T.Mom - I like your idea but perhaps add a twist. What if we put together the histories on our children/selves, the good, the bad, the ugly, combined them and sent them forward in a book form. How many medical histories could we put together just from this forum. As you suggest, these could include symptoms, treatments, and progress (positive and negative) through the years. And of course listings of the test results.

 

Such a book - document - would not meet the criteria of a controlled study by any means but it sure would give them a lot to read through. Perhaps a collection of such would give other doctors something to think about. If nothing else, it would call attention to our dilemma much like Saving Sammy and the Under our Skin video. The negative would be that it would really show how disorganized and desperate our side is. I don't mean that the way it sounds but just that if put down in one place it will become very obvious that we have followed a thousand paths grasping at straws (collectively). Then again - that's our plight until they pull their heads out of their CANS.

 

As background, we went to the pediatric neurology center at JHMU for 2 1/2 years - before PANDAS/Lyme ever entered our vocabulary, .... you basically see one of the interns and if you are "lucky" the great Singer himself might grace you with his presence. On one hand they would tell me that first generation genetic diseases are unlikely so wouldn't do some tests but then turned around and diagnosed my son with generalized genetic dystonia based on symptoms only. No history of dystonia in our family. Oh, and those psychological issues, go see a psychiatrist.

 

It is my humble observation that the interns we saw are very open to the possibility of PANDAS and related, but, politics dictate that they keep their mouths shut. They are there in training and department heads can probably decide their fates. I am hopeful that the couple we saw will break away and follow their hearts on this though.

 

But one has to appreciate the beauty of Singer's stance. He has a rule that states 1/3 of the kids with neuro-muscular disorders will continue to get worse. 1/3 will stay the same. 1/3 will get better. And he honestly does not seemed concerned that he does not know why!!!!!!

 

So - when my son gets much better, I plan to throw it in their faces (if only I was as articulate as Maloney) but I have no doubt that my son will just be one of the lucky 1/3.

 

I think we would have to be very careful - and yes I'm going to say it - protect all of the doctors who are helping us.

 

Just rambling on a Saturday morning........

[LaurenK]

I truly don't understand why everyone is so angry. My child has PANDAS. However, Singers discovery about glutamate and kurlans discovery about the low dose dopamine agonist for tourettes have helped my son tremendously. Swedo's discovery also helped my son. Kurlan and Singer even admit that the current treatments for tourettes have serious side effects and they are looking for new drugs and procedures that don't induce the same problems as current psychotropic medications. It's not as if these doctors are sitting around and doing nothing at all. I think it's good that doctors debate back and fourth. Singer and Kurlan do make some valid points. If you look on Dr. T's webpage, he posted an article a while back about gene discovered in tourettes. I believe is has to do with histamine transmission. Singer wrote an article not that long ago too about H3 antagonists being used for tourettes as a novel treatment. Currently there are drugs in clinical trials to modulate histamine & glutamate most likely because of Singer. I'm sorry but to bash doctors like that, I find to be incredibly inappropriate. Unless you are on the inside and you know their exact intentions, you cannot just trash what they say. Frankly, some of their discoveries have helped A LOT. Everyone here is so focused on the "root cause," only because the current drugs or past drugs have side effects. That may not always be the case. Would you spend hours upon hours on a forum researching allergies or just take zyrtec?

Edited January 7, 2012 by LaurenK

[browneyesmom]

 

I have half a mind to take my d up to Singer and have a work-up -- just to see what he would suggest!

 

Maybe THAT is the answer, start flooding his appointments with Ps kids from the mid-atlantic region -- with our histories and reactions, just to see what the heck he says!

 

 

Reading my mind... soooo tempting at times! The wicked side of me thinks it might be fun to arrive in his office, new paper in hand, choosing the tests I want him to run and asking him for his 'interpretation' of why my child's titers never rise in the midst of a flaming strep infection... maybe his brief Immunoglobulin G test will answer that question for him... sigh. I'll pass on the psych meds though; they seem to exacerbate the situation.

 

We happened to be in our Peds office yesterday & briefly discussed the article. Her closing comment on the topic as she reached for a rapid & culture for my daughter was, "Well, they can refute it all they want; reasonable people will still disagree."

 

Thankfully, medicine has moved more into meta-analysis of literature and this is not even a study, but more of an opinion/position paper. Let's hope the rest of the medical world is more adept at locating the rest of the research and making their own interpretations.