has everyone already seen this? NYT PANDAS

[EAMom]

I haven't read all the comments yet. This one is from March...different from the ones on tics and anorexia that Vickie posted.

 

http://consults.blogs.nytimes.com/2010/03/...or-problemsrop/

Edited July 8, 2010 by EAMom

[Fixit]

I haven't read all the comments yet. This one is from March...different from the ones on tics and anorexia that Vickie posted.

 

http://consults.blogs.nytimes.com/2010/03/...or-problemsrop/

 

the current #7 reminds me of my ds...by anonymous....but i never put him on psych meds...but now looking for long term answer too!!

[EAMom]

Still haven't read them all but comment #46 is a real loser!

[Fixit]

OMG>>>>who ever that is/or maybe it is...that oppent of jenny macarthy....saying vacinate,vacinate,vacinate......

Fridkn AMada peet....what a a/h.........even on screen she comes acrros like her s/d/s

I am so fuming right now!!!

 

Still haven't read them all but comment #46 is a real loser!

[sf_mom]

I couldn't help myself... What a small minded person, #46. We'll see if my comments get posted.

[JAG10]

Whoa! Am I getting a hot flash or was SF Mom smoking up the NYT!!!!!!

[kimballot]

SF Mom - YOU ROCK!

[EmersonAilidh]

I cried when I read #46. I couldn't help but to reply.

 

Dear Cappucina1.

I don't have the time to read every single comment on here, so forgive me if I'm repeating anything.

P.A.N.D.A.S. can also stand for Pediatric Autoimmune NEUROLOGICAL Disorders Associated with Streptococci. It goes above & beyond psychiatric problems. I have had symptoms my entire life but was only diagnosed four or five years ago (added note, diagnosed by DOCTORS, not by parents or the internet). P.A.N.D.A.S. involves a process called molecular mimicry, making it so that our brains, confused by the onslaught of antibodies, begins to mimic disorders that we don't necessarily have. While I do agree with you that too many parents do look to the medical community to explain their children's problems like OCD & bipolar disorder, it's a little hard to believe that patients like me would be able to play up heart problems, possible Crohn's Disease, & Narcolepsy. Passing out is something that cannot be faked. I'd like to see how that fits in with your "mythical illness" theory. It would be extremely difficult, if not impossible, to encompass the entire disorder in any article or website. That being said, I wouldn't doubt something that affects so many people the way that P.A.N.D.A.S. does until you have experienced it like we have. P.A.N.D.A.S. has robbed me of the vast majority of my childhood, so until you know what it's like to be in special ed, until you know what it's like to not have control over your body's wakefulness or movements, until you know what it's like to spend cumulative years of your life in a hospital, I wouldn't go calling it "mythical" or comparing it to a food allergy.

I am the proof that P.A.N.D.A.S. exists. I am the evidence.

[LNN]

I read all of the responses. And I had forgotten how amazed I was when we first started our journey that this was so controversial, that so many people had made up their minds against Pandas. A year or two with doctors who get it, conferences and media coverage that embraced it as matter of fact - made me forget what the outside world still refuses to acknowledge.

 

But this blog is an excellent road map for the work that remains to be done - by an organization, by doctors, by grass-roots efforts - most importantly by researchers. If you go thru this blog, you start to see an outline of what our community needs to be doing.

 

The antibiotics argument - yes, it's a valid concern. But a PR/media campaign needs to be aimed at the antibiotics given to livestock. The need to push development of a rapid way to "type" the strain of strep. Resistant abx develop when you use a shot gun approach to strep. "Well, we don't know what it is, so we'll throw amox at it." Well, if amox isn't the best abx for that bacteria, you've just helped reinforce resistance to amox. But if you could type the bacteria in the petri dish at the time you did the rapid or overnight strep culture, then you'd know which abx should be given and resistance would be less likely.

 

The "no proof" argument - Dr Cunningham's and Dr Hornig's research need to be replicated. IVIG studies, work by Dr K and others, carefully developed clinical questionnaires need to be funded.

 

The "RF and Sydenham's is rare" argument - we need a list of statistics that can say, well, yes, in the US, xxx cases have been diagnosed, but in Zaire, xx,xxx cases are diagnosed, where abx are less available.

 

I like the post by the guy who points out that 60 years ago, ulcers were caused by stress and other accepted diseases didn't exist. We collectively need to keep doing our part to not just educate ourselves, but to keep educating the general public and to keep pushing for more research. Hats of to Kelly, Vickie and others for taking us a step closer. This blog is a reminder of how far we've come in 10 years and how much further we have to go.

[JAG10]

I read all of the responses. And I had forgotten how amazed I was when we first started our journey that this was so controversial, that so many people had made up their minds against Pandas. A year or two with doctors who get it, conferences and media coverage that embraced it as matter of fact - made me forget what the outside world still refuses to acknowledge.

 

But this blog is an excellent road map for the work that remains to be done - by an organization, by doctors, by grass-roots efforts - most importantly by researchers. If you go thru this blog, you start to see an outline of what our community needs to be doing.

 

The antibiotics argument - yes, it's a valid concern. But a PR/media campaign needs to be aimed at the antibiotics given to livestock. The need to push development of a rapid way to "type" the strain of strep. Resistant abx develop when you use a shot gun approach to strep. "Well, we don't know what it is, so we'll throw amox at it." Well, if amox isn't the best abx for that bacteria, you've just helped reinforce resistance to amox. But if you could type the bacteria in the petri dish at the time you did the rapid or overnight strep culture, then you'd know which abx should be given and resistance would be less likely.

 

The "no proof" argument - Dr Cunningham's and Dr Hornig's research need to be replicated. IVIG studies, work by Dr K and others, carefully developed clinical questionnaires need to be funded.

 

The "RF and Sydenham's is rare" argument - we need a list of statistics that can say, well, yes, in the US, xxx cases have been diagnosed, but in Zaire, xx,xxx cases are diagnosed, where abx are less available.

 

I like the post by the guy who points out that 60 years ago, ulcers were caused by stress and other accepted diseases didn't exist. We collectively need to keep doing our part to not just educate ourselves, but to keep educating the general public and to keep pushing for more research. Hats of to Kelly, Vickie and others for taking us a step closer. This blog is a reminder of how far we've come in 10 years and how much further we have to go.

 

Great post!