PANDAS talk on wikipedia dispute PANDAS

[michele]

Please check out this link. I was reading articles on PANDAS and fell upon this wiki talk page. It is very interesting and contraversal at the least. I was hoping we could break it down here and respond. I guess this article is one of the reasons we are having such a hard time getting Dr's to treat the PANDAS symptoms. Maybe Buster or medical people could give us their thoughts regarding the comments. Some of them are above my understanding. I do know it will make you mad!

 

http://en.wikipedia.org/wiki/Talk:PANDAS#Disputed

http://en.wikipedia.org/wiki/PANDAS

[peglem]

Gee, I really didn't have a problem with the article or the comments. PANDAS has not been proven to be an autoimmune disorder. No immune or other biological marker has been found as an identifier. It is a clinical dx...subjective, and there is no dx code established for it. Because GABHS is so prevalent in the pediatric population and because the temporal association between symptoms and infection is so variable...well, its hard to nail down. For my part, I still say we'd be better off studying PANDAS as a variant of Sydenham's, simply because the Sydenham's is already an accepted dx and the 2 are so similar.

 

The controversy around PANDAS is why we have such trouble getting dx and treatment. Why have studies stopped? Two years ago, my daughter's pediatrician called the NIH to see if there were trials my daughter might qualify for (although she has other issues and would not likely qualify anyway) and was told there were no more PANDAS studies being conducted. My guess is the grant $ ran out and was not renewed.

 

Doctors are not allowed to just do whatever they think is best for a patient. They are supposed to follow a "standard of care". They need to document and justify reasons for the course of treatment they prescribe or recommend. My daughter's pediatrician is willing to push the envelope a bit on that, but if they don't CYA- they could be subject to disciplinary actions. This is why you'll have them more often prescribe psych meds than supplements. Many know there are supplements out there that can help, but by and large, the studies to justify recommending them have not been done- studies on medication either have been done or the medication has been used so long that it is already considered standard practice.

[Worried_Dad]

Yeah, I came across this a few weeks ago and have to admit, a few key phrases in the Talk section lit my fuse. Here are a couple of salient examples:

• ...some of the treatment implications are dangerous and have really misled parents who are desperate to 1) deny the genetic component of TS and 2) seek a quick cure.
  
• ...dangerous unproven methodologies being employed by desperate parents who want to believe their child's tics were caused by a bacteria and can be cured by unproven methods. Long after the hypothesis is sorted, the damage to children will remain.
  

Okay, I get the point that PANDAS is controversial, not proven to the satisfaction of the mainstream medical community, and that much more research is needed. But I take issue with the repeated comments about "desperate parents" who just want "a quick cure" and consequently are willing to endanger their children's health to get it.

 

I know I'm a flawed, fallible parent... and I'd have to admit to being desperate. But my wife and I have been searching for any way to help our son for 2 years now. Quick fix? We've tried every doctor, every kind of specialist, traditional psych meds, therapy / CBT, sensory integration therapy, every supplement that seemed to offer some way to improve our son's condition. Frankly, other than antibiotics, steroid burst, and IVIG, nothing has helped. So the treatments that have actually helped our son are all "controversial and unproven" I suppose. And they all happen to revolve around infectious disease and immunology, consistent with the PANDAS hypothesis.

 

On the "standard practice" advice of our local docs, we stopped antibiotic prophylaxis in June 2008. In August 2008, after a sinus infection, our son had his worst symptom explosion ever and has not regained the level of health he was at prior to that exacerbation. So it seems clear to us that following "standard practice" harmed our son substantially.

 

So if we just follow the traditional medical advice (which we did for months after our son's original illness) - and if the PANDAS hypothesis is in fact correct, and each exacerbation causes further damage to our son's brain - then that unquestionably damages our child.

 

I know this situation is brutal, and parents are placed in the awful position of having to weigh high-risk options on both sides, but I honestly don't know what else most of us can do. My son was begging us to kill him last August because he could not bear to live like that. We tried psych meds and they made things much, much worse. What else could we do to help him?

 

And one other thing that bugs me: the comment about us desperate parents "deny(ing) the genetic component of TS". Neither my family nor my wife's has any history of Tourettes, OCD, or tics. Both sides of the family do, however, have history of autoimmune disorders. MS on my wife's side; I myself have Crohn's disease. So I have to say - based on my son's case history and family history - the denial seems to be on the "mainstream medical community" side.

 

I realize that Wikipedia is trying to follow the same rigorous standards as the "offline" encyclopedias. They have to carefully vet all sources. But I think that Talk section displays some pretty clear biases that are based on studies that are out of date and have their own deficiencies.

 

Sorry to ramble and vent so much. It's been a tough week.

[chrisw]

Yeah, I came across this a few weeks ago and have to admit, a few key phrases in the Talk section lit my fuse. Here are a couple of salient examples:

• ...some of the treatment implications are dangerous and have really misled parents who are desperate to 1) deny the genetic component of TS and 2) seek a quick cure.
  
• ...dangerous unproven methodologies being employed by desperate parents who want to believe their child's tics were caused by a bacteria and can be cured by unproven methods. Long after the hypothesis is sorted, the damage to children will remain.
  

Okay, I get the point that PANDAS is controversial, not proven to the satisfaction of the mainstream medical community, and that much more research is needed. But I take issue with the repeated comments about "desperate parents" who just want "a quick cure" and consequently are willing to endanger their children's health to get it.

 

I know I'm a flawed, fallible parent... and I'd have to admit to being desperate. But my wife and I have been searching for any way to help our son for 2 years now. Quick fix? We've tried every doctor, every kind of specialist, traditional psych meds, therapy / CBT, sensory integration therapy, every supplement that seemed to offer some way to improve our son's condition. Frankly, other than antibiotics, steroid burst, and IVIG, nothing has helped. So the treatments that have actually helped our son are all "controversial and unproven" I suppose. And they all happen to revolve around infectious disease and immunology, consistent with the PANDAS hypothesis.

 

On the "standard practice" advice of our local docs, we stopped antibiotic prophylaxis in June 2008. In August 2008, after a sinus infection, our son had his worst symptom explosion ever and has not regained the level of health he was at prior to that exacerbation. So it seems clear to us that following "standard practice" harmed our son substantially.

 

So if we just follow the traditional medical advice (which we did for months after our son's original illness) - and if the PANDAS hypothesis is in fact correct, and each exacerbation causes further damage to our son's brain - then that unquestionably damages our child.

 

I know this situation is brutal, and parents are placed in the awful position of having to weigh high-risk options on both sides, but I honestly don't know what else most of us can do. My son was begging us to kill him last August because he could not bear to live like that. We tried psych meds and they made things much, much worse. What else could we do to help him?

 

And one other thing that bugs me: the comment about us desperate parents "deny(ing) the genetic component of TS". Neither my family nor my wife's has any history of Tourettes, OCD, or tics. Both sides of the family do, however, have history of autoimmune disorders. MS on my wife's side; I myself have Crohn's disease. So I have to say - based on my son's case history and family history - the denial seems to be on the "mainstream medical community" side.

 

I realize that Wikipedia is trying to follow the same rigorous standards as the "offline" encyclopedias. They have to carefully vet all sources. But I think that Talk section displays some pretty clear biases that are based on studies that are out of date and have their own deficiencies.

 

Sorry to ramble and vent so much. It's been a tough week.

Worried Dad,

VERY, VERY well said!!!!!!! So sorry about the tough week.

Christie

[peglem]

I just wanted to be clear that I'm not saying that what SHOULD be done in the case of PANDAS is to follow standard procedures of care. I think PANDAS falls into the area of atypical and understudied, in which case I think physicians and parents need to search out a solution that is (obviously) not covered under standard care. My point was that many doctors are not comfortable with this because of whatever oversight they have, (insurance, practice oversight) and because they are basically in unchartered waters and not sure of how to procede. There are a very few doctors who have stuck their necks out on this and decided to try things that make sense to try. Thank God for these doctors!

[EAMom]

This SandyGeorgia person seems to be in *love* with Kurlan and Singer. Ugghh. Kurlan has no idea what PANDAS really is...his most recent "PANDAS study" (June 2008 Pediatrics) was actually about a bunch of kids with tourettes (if they did have PANDAS, it wasn't the same PANDAS our kids have...severe OCD, rages, psychotic, anorexia nervosa, suicidal, your-kid-is-bipolar-and-needs-to-be-in-a-mental-institution PANDAS.)

 

Buster was a little more tactful in criticing Kurlan's choice of "PANDAS" subjects:

 

First and foremost, I should compliment the authors on a very careful study. However, they basically blew it on their sample of children and seem to have selected Tourette's children with > 3 years of continuous tics with no exacerbations in OCD as their proported PANDAS group. So the science was probably good, but they weren't testing the hypothesis they intended to test.

 

More of Buster's thoughts on Kurlan's research http://www.latitudes.org/forums/index.php?...art=#entry26571

 

Ohh...and I do find it amusing the way SandyGeorgia used this study as anti-PANDAS evidence...

http://www.ncbi.nlm.nih.gov/pubmed/15119917

All that study shows is if you take a bunch of kids with Tourettes (not PANDAS) and give them IVIG, they don't get better. Yawn.

[Nurse G]

Worried Dad,

 

Got chill bumps reading your post. I agree 100%. Well said. Hope things are looking up for you and your family. Glenda

[Lisa1971]

Being a newbie to all of this, and just starting to hit my head into the brick walls that all of you have been bludgeoning yourself on for years...I guess I'm just baffled at the sheer irony of it all...when did being a parent, a concerned persistent, parent... become a bad thing...I'm fairly certain that a parent can be put in jail for failing to get treatment for their sick child. We have sick children, and yet we are being forced to perform gymnastics to try and get them treated for their symptoms and illness...and being made to feel like we are the ones who are crazy in the process.

 

A doctor has an ethical obligation to treat their patients symptoms...that is their basic ethical obligation...when exactly did it become acceptable to only perform up to the minimum requirements? When did it become okay for them to simply dismiss something because they had never seen it before? When did it become okay for them to not follow through on all the evidence right in front of them...our children are not stealth in their symptoms...our kids are not subtle in their behaviors...our kids have a big red button pushed when exposed to or develop strep that sends them off the charts into neurological disorder status' overnight. I sincerely, do not understand...Strep is allowed to cause other things...but just not this?

 

So, until someone can connect the dots who actually has the power to put this in the "Big Book of Real Things Wrong with People" our children continue to suffer?...my child is not even remotely at the end of the continuum as most of yours, and it was enough for me to become concerned...enough for me to want answers...enough for me to see that on Wednesday my son was normal and on Thursday he was a completely different child. How does a child sit still one day and then uncontrollably tic all over the place the next? And why doesn't my doctor want to find out? Why do I have to resign myself for an uphill battle to get my son treated?

 

Contrary to what "those people" think... I do not want my child to have PANDAS. Being labled with a disorder/disease/medical condition is the last thing I think any of us really want for our kids...we are not looking for a fancy name, we are not looking for a quick cure...we are looking for answers...we want to know exactly why this happened, how it can be prevented, how it can be stopped, and what exactly we need to do to make it better for our children...we want our kids to be taken and treated seriously. Because, I'm sorry what is going on with all of them right now...is no joke.

 

I am most certainly not desperate...I am terrified. This is my child...and my job is to do everything in my power to help him...and fortunate for him, my OCD tendencies will not allow me to only do the minimum.

 

Sorry about the rant...and my heart truly goes out to all of you and your children. And I thank all of you for the support and kindness you have shown me these past couple of weeks.

--Lisa