Is PANDAS real?

[Wilma Jenks]

why don't all doctors believe that PANDAS exists? Isn't there scientific proof that backs the validity of PANDAS? Why such controvery? Thanks

[browneyesmom]

Hi Wilma,

 

While it is truly frustrating to those enduring PANDAS, unfortunately, it's a relatively newly-named diagnosis and as such, it takes time for the medical community to fully accept it and learn about it... we too, are learning all we can.

 

Another reason I think doctors are sometimes slow to accept it's PANDAS is because 1) they want to rule out other possibilities (which is good medical practice and I would want for my child) and 2) it's difficult to definitively test for PANDAS itself... while there are some labs that can be done, it's more of a clinical diagnosis at this point. Further, to my knowledge, it is not yet listed in the DSM as a diagnosis... obviously, our hope is that it will be soon... making it that much more important for us to continue educating, increasing awareness & supporting research.

[thereishope]

I think out of 69 views you have one response so far because this is an emotional thing for all of us. As anyone on here sees it, their child is proof alone that PANDAS exists. A lot have been told by some doctor at some time that it doesn't and it causes more stress and anger.

 

Why do some say it doesn't it exist? I think the answer varies. For some, it just not what they learned in med school and they are set in their ways. Some don't want to admit it exists since they don't want to treat. Some will say it doesn't exist because in their opinion there wasn't enough research to fully prove it.

 

However, the last reason is changing. More research has been done including the Columbia mouse study and the Tel Aviv study. With the upcoming NIMH IVIG study that locks it in more that professionals should stop adding the clause that it may not exist. Then there are treating doctors that have seen our kids get well with antibiotics, steroids, IVIG,and PEX. Collectively,it's getting to the point...how can one deny it exists?

 

As for an autoimmune reaction exclusive to strep, well, it's not. Other things can cause what we on here may call "PANDAS like" reactions. That is PITAND. That needs to get more notice too and it will.

 

In the upcoming months, the NIMH (National Institute of Health) is suppose to be releasing a white paper. This paper will hopefully put to an end a lot of the contoversy. From what many have said, it will include a name change as well. As for what it will say, we'll have to wait and see.

 

 

To quote The Immunobiology of Tourette’s Disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus, and Related Disorders:

A Way Forward (Tanya K. Murphy, M.D.,1 Roger Kurlan, M.D.,2 and James Leckman, M.D.3)....

 

"It is time for the National Institutes of Health, in combination

with advocacy and professional organizations, to convene a panel

of experts not to debate the current data, but to chart a way forward. "

[airial95]

The honest, unemotional answer - it's the same reason that people believed the world was flat, that the earth revolved around the sun, and that demons (not germs) were responsible for people getting sick. Galileo and Copernicus were treated as heretics for presenting data that the sun was the center of our solar system. People (no matter how smart or educated) do not like to be taken out of their comfort zone. Doctors who have practiced for years, particularly mental helath professionals, are now being told that the basis of their entire livlihoods may not be what it appeared to be. It's human nature to reject something that challenges long held beliefs, not to mention - who wants to admit that they've been practicing medicine for years and ignored a (now) seemingly obvious connection between "mental illness" and physical health?

 

New discoveries in science and medicine have always taken time to take hold. What makes it frustrating to us is that we're living it every day.

 

I don't blame the medical community for being skeptical and slow to catch on - we've seen that all throughout history. But what does bother me, is the condescending attitude with which they do it.

[Megs_Mom]

I think out of 69 views you have one response so far because this is an emotional thing for all of us. As anyone on here sees it, their child is proof alone that PANDAS exists. A lot have been told by some doctor at some time that it doesn't and it causes more stress and anger.

 

 

I agree. I just couldn't think of a way to begin to answer this question. Sometimes I am just tired of fighting about it, and I won't even talk to those that "don't believe" in it. It makes me so mad - no one will tell my father in law that he "imagined a heart attack" or he is "overreacting to his back pain", or that they just don't believe in diabetes. I get tired of defending an illness that has so rocked our family and had the potential to ruin my child's life (and so many others). Really, I just want to help my kid, and I want the doctors to support me in doing that. Having to become an advocate for an entire illness at the same time is fine - but it still makes me mad. I kind of had to take a break before I could respond.

 

Maybe a good place to start, is to read the history of PANDAS, and some of the research articles. Here is a link that should get you started. http://www.latitudes.org/forums/index.php?showtopic=3928.

[T_Mom]

I agree with Meg's Mom--

I too read your post Wilma and just did not have the energy to respond...

 

After two long years, with two daughters that have had sudden onset OCD (and mild ticcing w/ one) when they get sick.

--yes Wilma, this--is very, horribly REAL. Reading the articles (which tell the history) posted by Buster under "Helpful Threads" at the top of the PANDAS forum, will give you a snap shot of the history.

 

If you have not seen your child change from a normal (relatively sweet child) into one who is raging beyond our comprehension, screaming that OCD is "making me do this--or you will die", yes, Wilma it is all too real. (What kind of OCD goes away with antibiotics? steroids? IVIG?.)

 

I don't try to explain it anymore to even family members who don't get it -- It is just too painful to continue to explain.

[peglem]

why don't all doctors believe that PANDAS exists? Isn't there scientific proof that backs the validity of PANDAS? Why such controvery? Thanks

I think there is scientific evidence- maybe proof is too strong a word. More and more, it seems to me, doctors are turning to "standard of care" and protocol checklists to treat patients and avoid personal responsibility for decisions. PANDAS treatment does not yet have a "standard of care" or standardized protocol for treatment, so docs who do treat it are kind of sticking their necks out professionally. God bless them for trying to help our suffering children.

[Wilma Jenks]

Thanks so much. I needed some response for family members that questioned me. I kept telling them... that the Romans never beleived that the lead in there drinking jugs was poisoning them either!!! It is so hard dealing with a sick child and then trying to explain the PANDAS thing ontop of it. Thanks for the responses and I am sorry if I stirred up some tough emotions in anyone. Not intended!

[Buster]

Hi Wilma,

 

I've been trying to think about how to answer this question.

 

To put this in perspective, most of the controversy in PANDAS comes from a specific group of non-pediatric neurologists at Johns Hopkins who have seen fit to run experiments on children and adults diagnosed with Tourettes (i.e., vocal and motor tics for > 3 years without remission for > 3 months) rather than children with sudden onset and episodic course. In my opinion, the researchers didn't have a PANDAS kid in their study. My reason is looking at the CYBOCs scores of their patients. In their study, they had < 2 point variance in CYBOC scores over a 2 year period (i.e., no change in OCD) -- that is just unheard of in most PANDAS kids. Swedo had variances of 26 pts (mild to severe) during an exacerbation.

 

So now you take that they are running tests where they have no PANDAS kids and they get negative results. Rather than recognize a flaw in their experiment, they publish their negative results and publish inflammatory editorials in the same issue calling into question the whole hypothesis of PANDAS. This is, quite frankly, bad science. A negative result is just a failure to confirm, it is not refutation. So irritating.

 

Issue #1 is therefore a failure to properly screen subjects and correctly apply the PANDAS criteria

 

Issue #2 is that PANDAS is both a description of symptoms and a statement about cause. There is little doubt kids have the symptoms (many many videotapes and writing samples and tests done to verify the symptoms), what is questioned is whether GABHS is the cause of the symptoms. Remember to show causality you have to show the result always follows the trigger and can't happen without the trigger. It is a high bar and unfortunately PANDAS is trying to get recognition for symptoms while trying to prove causality (rather than co-occurence)

 

Issue #3 is that GABHS is thought to be a minor infection today. Almost no pediatrician has any experience with Acute Rheumatic Fever or Sydenham Chorea. Most do not know that 30% of ARF patients have SC and 70% of SC patients have OCD. Somehow the medical community has forgotten that many died of GABHS only 50 years ago.

 

Issue #4 is that researchers confuse treated GABHS infection with untreated GABHS infection. PANDAS and SC are thought to be sequela to untreated GABHS infections (hence why you put kids with SC on prophylaxic antibiotic to minimize reinfection). But if you look at research studies, almost all of those studying non-sudden-onset break the blind and "treat" GABHS infections. Uhhh, duh, they ruined the experiment. Sure that was the only way to get through an IRB, but guys, you wouldn't have found SC if you ran an experiment that way.

 

Issue #5 is that researchers think Sydenham Chorea is self-limiting (i.e., clears in 6 months). What most haven't studied is that only the movement disorder last 6 months, the OCD symptoms can last a lifetime without intervention. It is this exact item that Sue Swedo was studying -- the resolution of OCD symptoms due to intervention was the new discovery in SC and subsequently in PANDAS.

 

 

I am terribly tempted to write a rant here, but will stop and say that I think those who are writing such entertaining titles as "PANDAS: Horses or Zebras" should stop feeling so damn clever with their provocotive title and be aware that their stupid little editorials are inhibiting some really sick kids from getting help.

 

Buster

 

why don't all doctors believe that PANDAS exists? Isn't there scientific proof that backs the validity of PANDAS? Why such controvery? Thanks

I think there is scientific evidence- maybe proof is too strong a word. More and more, it seems to me, doctors are turning to "standard of care" and protocol checklists to treat patients and avoid personal responsibility for decisions. PANDAS treatment does not yet have a "standard of care" or standardized protocol for treatment, so docs who do treat it are kind of sticking their necks out professionally. God bless them for trying to help our suffering children.

[Hierge]

The National Institute of Mental Health in Maryland issued a statement declaring PANDAS real. Disease caused mental disorders are now on the table again after a century of Freudian dominated thinking. PANDAS will be renamed soon and the doctors from Johns Hopkins who are "turncoats" to the new paradigm get to name it. This is described as a Vatican type of announcement.

 

The reason it is has been so hard to declare real is because it's largely circumstancial to date. People have known for a century or more that strep throats are associated with OCD, tics, heart problems, rheumatism and other autoimmune disorders. There was just no direct proof.

 

Dr. Swedo has come the closest in my opinion by measuring the volume of certain brain structures pre and post strep infection. Other people know a lot more than I do, but there are also other immune system indicators. The science behind this just hasn't caught up to the circumstantial proof. It's not entirely uncommon for drug companies to not know how drugs work, so it follows that we don't have to know how it works to use it. Aspirin finally was figured out after many decades of use.

[kimballot]

Hi Wilma,

 

I've been trying to think about how to answer this question.

 

To put this in perspective, most of the controversy in PANDAS comes from a specific group of non-pediatric neurologists at Johns Hopkins who have seen fit to run experiments on children and adults diagnosed with Tourettes (i.e., vocal and motor tics for > 3 years without remission for > 3 months) rather than children with sudden onset and episodic course. In my opinion, the researchers didn't have a PANDAS kid in their study. My reason is looking at the CYBOCs scores of their patients. In their study, they had < 2 point variance in CYBOC scores over a 2 year period (i.e., no change in OCD) -- that is just unheard of in most PANDAS kids. Swedo had variances of 26 pts (mild to severe) during an exacerbation.

 

So now you take that they are running tests where they have no PANDAS kids and they get negative results. Rather than recognize a flaw in their experiment, they publish their negative results and publish inflammatory editorials in the same issue calling into question the whole hypothesis of PANDAS. This is, quite frankly, bad science. A negative result is just a failure to confirm, it is not refutation. So irritating.

 

Issue #1 is therefore a failure to properly screen subjects and correctly apply the PANDAS criteria

 

Issue #2 is that PANDAS is both a description of symptoms and a statement about cause. There is little doubt kids have the symptoms (many many videotapes and writing samples and tests done to verify the symptoms), what is questioned is whether GABHS is the cause of the symptoms. Remember to show causality you have to show the result always follows the trigger and can't happen without the trigger. It is a high bar and unfortunately PANDAS is trying to get recognition for symptoms while trying to prove causality (rather than co-occurence)

 

Issue #3 is that GABHS is thought to be a minor infection today. Almost no pediatrician has any experience with Acute Rheumatic Fever or Sydenham Chorea. Most do not know that 30% of ARF patients have SC and 70% of SC patients have OCD. Somehow the medical community has forgotten that many died of GABHS only 50 years ago.

 

Issue #4 is that researchers confuse treated GABHS infection with untreated GABHS infection. PANDAS and SC are thought to be sequela to untreated GABHS infections (hence why you put kids with SC on prophylaxic antibiotic to minimize reinfection). But if you look at research studies, almost all of those studying non-sudden-onset break the blind and "treat" GABHS infections. Uhhh, duh, they ruined the experiment. Sure that was the only way to get through an IRB, but guys, you wouldn't have found SC if you ran an experiment that way.

 

Issue #5 is that researchers think Sydenham Chorea is self-limiting (i.e., clears in 6 months). What most haven't studied is that only the movement disorder last 6 months, the OCD symptoms can last a lifetime without intervention. It is this exact item that Sue Swedo was studying -- the resolution of OCD symptoms due to intervention was the new discovery in SC and subsequently in PANDAS.

 

 

I am terribly tempted to write a rant here, but will stop and say that I think those who are writing such entertaining titles as "PANDAS: Horses or Zebras" should stop feeling so damn clever with their provocotive title and be aware that their stupid little editorials are inhibiting some really sick kids from getting help.

 

Buster

 

Buster - so nice to read your post. I've missed your perspective. Thank you. You've re- lit the fire in me!!