Moving From PANDAS to CANS?

[LaurenK]

 

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.

 

 

Singer would probably perscribe a glutamate antagonist, which by the way removed at least 50% of my sons PANDAS symptoms within two weeks of taking it. Out pychiatrist also said that excess dopamine induces pro-inflammatory cytokines so in blocking it or decreasing it, you are also decrease the pro-inflammatory cascade.

Edited January 7, 2012 by LaurenK

[eljomom]

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"??

Edited January 11, 2012 by eljomom

[PowPow]

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?

 

I am really glad that their discoveries have helped your son. One of my children is also helped by a glutamate antagonist.

 

I will point out a few reasons that many of us spend "hours upon hours on a forum researching". We have lost our children. Some of us have lost more than one child. Psychotropic drugs DO have serious side effects and they DO not help every kid here. Some of us, most of us actually, have fought tooth and nail, expended every extra dollar and sacrificed everything to get our kids' help. In some cases, kids have recovered 100%. Would that have happened if we just took a pill? I doubt it highly.

 

I think you posted about IVIG recently. Did you read the article? Because if you did, you will see that it is not recommended for your child. In fact it is not recommended for any of our children. And Lyme? only when indicated. What does that mean? Only if you have a fever or a bullseye rash. So the families who have found that a more silent form of Lyme has wreaked havoc on their kid's brain would be out of luck.

 

I will agree that bashing people publicly is not the best idea & I do think people forget this is a PUBLIC forum. Anyone, ANYONE- can search PANDAS, CANS and Singer and this post is the first thing that popped up for me. So I agree, we should be polite.

 

It might be helpful for people newer to the forum- if someone who is better at researching than me (Vickie?) could post some reasons on why this has really revved us up.

 

Also, Bill- great idea on the book. I will be happy to participate if you are serious! Also, you are right; we need to "protect" our current, helpful doctors. We need them.

 

edited for spacing

Edited January 7, 2012 by PowPow

[kimballot]

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

LOVE IT

[MomWithOCDSon]

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?

 

Actually, it is Singer and Kurlan's "trashing" of Swedo, Cunningham and Hornig's work that has put us all on the offensive and defensive where they are concerned.

 

Lauren, I have no issues whatsoever with other doctors and/or researchers expanding the discourse and/or taking their own tangent, as you've noted, into related issues such as glutamate and histamine modulation therapies. Bravo for them on that score!

 

But it appears you're either unaware of or are willing to set aside the vociferous anti-PANDAS stance they've taken over the last 10 years which has caused many of us direct and immediate trouble with getting our children diagnosed, let alone treated, in our local areas. It seems they feel compelled to define themselves and their research in some way as the antithesis to the PANDAS world, rather than striking out and carving fresh territory of their own. Constantly trying to reframe a discovery, a body of research and now even a label that wasn't theirs to begin with. Why? Ego? Unfortunately, that is not of service to our kids our the kids who find themselves unfortunately following in their footsteps.

[peglem]

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?

I think the anger comes from the fact that the authors are advocating not doing the things that have helped our children. Personally, I don't have a , problem with a doc that won't or can't help my child. We saw a local pediatric rheumatologist who, even with lots of evidence, dismissed us and sent us to psychiatry. He suggested to our pediatrician that I was making things up. Okay, I know this doc has helped a lot of other children. I know he's a "play it safe and by the book" kind of guy- if its not standard medical protocol, he won't touch it. I can live with that- he's not the right choice for us. The problem is, he's affiliated with a large children's hospital and many of the specialists we see call him to consult when they 1st see my daughter. He tells them that its a behavioral problem and recommends psychiatry, and we get no help.

I think that's kind of what's going on here with Kurlan and Singer. Its okay with most of us that they disagree/disapprove the PANDAS stuff- we all know docs like that. Its that they put such extensive effort into trying to convince others in the medical community that the things that have helped many of our children should not be done (at least until the science behind it has reached very definite conclusions). When we've all fought so hard to help our children get well, K&S feel like the enemy-making the fight harder.

[dcmom]

I think Pow Pow said it the best.

 

Many of us had to watch as our children lost EVERYTHING that made them who they are. We had to watch as they lost their mind.

 

I had to watch this with two of my kids. We did not try meds for the symptoms initially, thank goodness, because we immediately found docs who understood their suffering, and wanted them well. Possibly (although unlikely, since we tried one SSRI at a later date to no avail) we could have found a pill to help with their major symptom of OCD. But, where would that leave the other issues they had: anxiety, cognitive difficulties, separation anxiety, anorexia, emotional lability, oppositional behavior, depression, chorea, etc?

 

We were able to get PEX- a so called NOT recommended, risky treatment. This treatment brought both of my girls back to 100% within days. It was literally a miracle. Do NOT put me in a room with ANYONE who would like to deny my child, or any other needing child, this treatment. They term antibiotics, steroids, IVIG and PEX "risky" which is nonsense. These are NOT new and untried treatments. These are used EVERY day for other illnesses. There HAS been some scientific evidence of their success for pandas. Yet these docs continually make it harder for all of us to access this treatment.

 

And, on a personal not. One of these docs works in the hospital where my children were born, where my mother works, in my "hometown" area. I have had several email debates with him over his opinions on pandas. He did engage with me, and all I could give him was MY truth as a mother who actually has two of these children he likes to write about so frequently. He actually admitted that it sounded like one of my daughters probably did have pandas (she is a textbook case- there is no other possible explanation- she fits ALL of the criteria and more. Towards the end or our very friendly email debate, I told him I planned to set an appointment with him, so he could see my kids, and we could discuss his thoughts. His response to me was not to bother, he does not "treat" pandas. Well there you go- I mean where is the credibility? If someone wants to author papers upon papers on pandas, shouldn't they at least WANT to see some of these kids, especially if they fit the bill even according to them.

[911RN]

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.

 

 

Amen, sister! Publish or perish. Get on the train or get left behind (as a naysayer!) NOW, you have said it in a nutshell- this is how it works in the medical, ole' boy network and double that for researchers!

 

Still much work to be done....tomato, tamata....still don't care what they call it. Until they come up with concensus opinion of "standard of care" for diagnosis, testing and treatment we are all still operating in the dark, fighting at every angle, for progress.Thankfully, it is not as bad as it used to be with more press coverage but there is still too much lacking concensus opinion and in-fighting for it to be "accepted" and managed by mainstream docs.

 

There is no doubt on how to diagnose, test and treat for Diabetes. There are too many varied, researched and lackluster opinions on how to treat PANS, CANS or PANDAS. He!!, they can't even decide what to call it. How ya gonna diagnosis, test and treat for IT when you don't even know waht to call IT????!!!

[Kayanne]

I always liked PINS - Post Infectious Neuropsychiatric Syndrome. But I thought it just sounded weird...but if "Big Wigs" can call it CANS (That just sounds awful!!!) Then PINs is better.

 

I don't like PANS at all either -- I think dropping the association to an infection trigger is probably the worst thing to do.

 

Although, my favorite is sh&* on toast!

 

I haven't had the right frame of mind to actually sit and read what these doctors have put out....**sigh** I guess I'll have to buckle down soon and do it.

[kimballot]

We, too, live in an area that was under heavy influence by one of the CANS authors and it delayed my son's diagnosis by about 6 years while a cyst ate away at his sinuses because the only symptoms were PANDAS symptoms and the neurologist said it could NOT be PANDAS because he did not have strep throat and his ASO titers (take one time - 4 years earlier) were not elevated. The neurologist was a colleague of one of these authors, and basically offered to put my son on SSRIs but REFUSED to do ANY bloodwork to check for infection or immune problems.

 

We did not do SSRIs, left and found Dr. B who had to spend 1 1/2 years undoing the damage. My son is doing much better now.

 

That is why I am at least a bit hopeful that the CANS article seems to push for looking for infectious triggers - including (but not limited to) strep.

 

Regarding anger and disgust over what we have lost and the role these authors have played in that in the past - yes - I completely get it. I cannot even begin to think of how different my life would be if we knew 6 years ago (or 13 years ago when we first saw symptoms) what we know now. However, that does not mean that the article is all bad. I still see it as a step forward- not a step back - though it is is clearly ill timed and confusing with the conflicting name.

[JAG10]

Did anyone else hear through grapevine that the hold-up on THE invisible white paper was a "hashing out" between NIMH and JH?

 

Where does this fit in? Is this also considered a white paper?

[tpotter]

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

LOVE IT

 

 

He says "Thank you." (he's got a wicked sense of humor, which I think is his way of coping.)

[tpotter]

Did anyone else hear through grapevine that the hold-up on THE invisible white paper was a "hashing out" between NIMH and JH?

 

Where does this fit in? Is this also considered a white paper?

 

 

This is NOT the white paper (I do know this for sure, but can't say more....not even by PM.) Got to trust me on this one.

[JAG10]

I know this isn't THE white paper.....but maybe sufficient agreement could not be reached, so the JH crowd came out with their own....first.

[T_Mom]

I think what pains me most is this is such a political volley to save face while children are suffering...NEEDLESSLY.

 

The brutal truth is the "do no harm" oath has long been forgotten in an effort to support egos and pride. Shame.

 

I have two children who have essentially lost 4 years of childhood -- thousands spent on CBT/etc. Saturday mornings at psycho-therapists, etc. ...and a couple of ol' guys at JHU feel the "need" to tell the world their perspective, which is??? based on saving face???

 

I am sorry, for all those children suffering, unidentified, sitting in institutions, prisons, etc. whose lives have been lost, productivity never realized, because of this autoimmune reaction to infection (as recognized nationally as well as internationally.)

 

The marriages lost, the tears spent, and the years of anguish...and now they want to save face, or "get in the game" with qualifying remarks? Qualifying themselves as the waters heat to boil, at last?

 

No, I am really sorry for them, as they must (I hope) think of the many families who have suffered these past 2 decades because of their mistaken (purposeful? perhaps not?) influence on public opinion-

 

(edited to remove specific names.)

Edited January 7, 2012 by T.Mom