smartyjones Posted February 17, 2011 Report Posted February 17, 2011 okay -- it's well intentioned -- grandious ignorance etc, etc etc. . . .due to an attempt to enlighted, educate etc a family member (not even me, by dh) this family member has now suggested we check out the wikipedia entry on pandas b/c they found it 'informative' are you *#*#*#n kidding me????? what do you think i've been doing for the past 2 1/2 years? i now hold an honorary degree in pandasology -- know of all the key players and have spoken to half of them and you condescend to suggest i check out a wikipedia entry? i'm not sure if it's b/c that site repeatedly mentions the 'controversy' -- i actually don't even think so, i think it was really mentioned in the spirit of helpfulness -- which i am trying to focus on -- but seriously -- you gotta be kidding!!!
Tamistwins Posted February 17, 2011 Report Posted February 17, 2011 okay -- it's well intentioned -- grandious ignorance etc, etc etc. . . .due to an attempt to enlighted, educate etc a family member (not even me, by dh) this family member has now suggested we check out the wikipedia entry on pandas b/c they found it 'informative' are you *#*#*#n kidding me????? what do you think i've been doing for the past 2 1/2 years? i now hold an honorary degree in pandasology -- know of all the key players and have spoken to half of them and you condescend to suggest i check out a wikipedia entry? i'm not sure if it's b/c that site repeatedly mentions the 'controversy' -- i actually don't even think so, i think it was really mentioned in the spirit of helpfulness -- which i am trying to focus on -- but seriously -- you gotta be kidding!!! Lol, I have no words of wisdom but I hear you. I had a family member tell me I should check out celiac disease just because my son eats alot of pasta. Well, that's what most picky eaters like to eat. And, she told me to look into it just because her friend used to work in pharmaceuticals... What the Heck this is my children all I do is research day and night. People need to not offer advice!!
peglem Posted February 17, 2011 Report Posted February 17, 2011 (edited) Okay, here's my wisdom...take advice in the spirit of the intentions behind it. Wiki was informative to them. And hey, at least they were interested enough to look it up themselves! You can always let them know you're way ahead of wikipedia, but saying its a good place to start learning about PANDAS (okay, bending the truth a little), but you're trying to keep current with all the newer information that is coming out about it. I've had many instances while trying to deal with my child's outbursts/anxiety in waiting rooms where well intentioned stangers recognized autism and proffered advice on diets, doctors, etc. Its very hard while you're struggling to appreciate that they are just trying to help, even though it just shows me they have absolutely no idea what I'm dealing with. Edited February 17, 2011 by peglem
thereishope Posted February 17, 2011 Report Posted February 17, 2011 (edited) Pandasology...we should totally make up a dipolma with this for everyone to frame! Wikipedia...ooohhh...never thought of that. You mean the internet has stuff about PANDAS on it? Really? And Wikipedia is the best and most correct place to find it?! Heavy sigh.... Yes, they meant well, and hey, you got a story out of it, right? Edited February 17, 2011 by Vickie
MomWithOCDSon Posted February 17, 2011 Report Posted February 17, 2011 (edited) I think you should take up knitting in your "spare time" and knit this relative and her entire family some nice black and white PANDAS hats . . . complete with ears . . . for giving next holiday season. Make sure they're made out of really itchy wool so that they are annoying to the wearer, and maybe attach a megaphone so that their complaints about the annoying, itchy hats can be heard . . . repeatedly . . . by anyone within 20 feet of them. Consider adding an automatic locking device to the chin tie-strap that makes the hat extremely difficult to take off; that way, they'll be forced to wear them both to bed and therefore find sleep more difficult, and to public places and events at which they'll likely draw unwanted attention for "being different" and have to endure the sideways glances and "well-meaning remarks" from strangers, like "Well, why don't you just take it off, then?" THEN maybe they'll understand something about what it's like to live with PANDAS to the extent no Wiki article can EVER convey! Edited February 17, 2011 by MomWithOCDSon
amyjoy Posted February 17, 2011 Report Posted February 17, 2011 Hey, i want some "spare time"! Actually, i think its great that at least your family member cared enough to look it up. and i'm totally surprised that pandas is on wikipedia. I wonder who posted it??
peglem Posted February 17, 2011 Report Posted February 17, 2011 Hey, i want some "spare time"! and i'm totally surprised that pandas is on wikipedia. I wonder who posted it?? Oh, its not a great article...mostly taken from the old NIH webpage on PANDAS.
dut Posted February 17, 2011 Report Posted February 17, 2011 talking of wikipedia.. could we get it changed so it IS a good reference for people.. I admit I'm a luddite and so don't understand how these things get changed but I imagine wikipedia is a starting place for many people and it would be great if it were accurate, up to date and lost the "controversy" bit. how could we make that happen.. could one of us do it or maybe get one of the pANDA sexperts on board? dunno.... (oops.. I was gonna correct my typo in the previous sentence but thought it was too funny to change :-)
Ozimum Posted February 17, 2011 Report Posted February 17, 2011 Um...take a look at the discussion page on PANDAS on Wikipedia (click on Discussion)...there's evidently a history in getting that wiki entry in as it stands. Am I right in thinking that our very own Buster has worked very hard to get it this far?
Mary M Posted February 17, 2011 Report Posted February 17, 2011 Oh the discussion portion of the Wiki on PANDAS just makes me want to give Buster an award of excellence in sharing knowledge for the good of all! As for your relatives, perhaps they'd be interested in perusing some of the other websites regarding PANDAS? Mary from Michigan
MomWithOCDSon Posted February 18, 2011 Report Posted February 18, 2011 Wow! I just finished reading the whole "Discussion" tab on that Wiki "PANDAS" article! Buster is a ROCK STAR! And so calm, cool and diplomatic in dealing with this piece of work, "SandyGeorgia," whoever that may be! Why is it when you tell someone a fact they don't agree with, you're lacking "impartiality," but when they repeat something over and over again ("controversial") without any concern as to the weight or tone that word/term conveys, that's somehow NOT lacking in impartiality?!?! I would argue that the Wiki editors are doing precisely what Buster is being admonished against doing. Does the article really need to state and restate the "controversial" nature of PANDAS? Isn't the mere term redundant in the face of a fully fleshed-out, neutral article in which all available information and points of view are made explicit?! Aren't the editors actually condemning the article to mistrust and lack of credibility by coloring it with that word -- "controversial" -- over and over again? Wouldn't it be better to just state the cases on both sides of the issue clearly and concisely, permitting the readers to see for themselves the level to which the topic is, in fact, controversial? Sock it to 'em, Buster!
Phasmid Posted February 18, 2011 Report Posted February 18, 2011 just fyi... I actually think highly of wikipedia entries and find them to be highly accurate, very up to date, and well written. So, don't take it so offensively! Boy, you're a fiesty one!
kimballot Posted February 18, 2011 Report Posted February 18, 2011 At least yours comes from a relative outside your immediate family... my DH just opened wikipedia to investigate PANDAS this past weekend. I really don't know why. I would imagine he got tired of trying to explain it to people when I wasn't around to do the job for him. Anyway he said to me "hey.. you know what it says here??..." (um.... YES!!) and then he went on to ask me questions. This is after a year of full-time distance learning for my PoD (doctor of Pandasology).... I guess we can't have to doctors in the same house!
MomWithOCDSon Posted February 18, 2011 Report Posted February 18, 2011 just fyi... I actually think highly of wikipedia entries and find them to be highly accurate, very up to date, and well written. So, don't take it so offensively! Boy, you're a fiesty one! I like Wiki, too. It's not really the article itself that is "feisting" me up . . . it's the editor's sanctimonious railing at Buster on the "Discussion" page that got me going! Bet you're feisty, too! I've yet to meet a PANDAS mom who isn't!
Phasmid Posted February 18, 2011 Report Posted February 18, 2011 Oh, I didn't catch that. I'll go look at that. Uh... yes, plenty of "feist" in me too. Don't really think it's a selling point for me, according to my dh. I know of, hmmmm, about half my friends, family, and acquaintences who would like it if I went and got a rx for some serious sedatives. Sigh... just fyi... I actually think highly of wikipedia entries and find them to be highly accurate, very up to date, and well written. So, don't take it so offensively! Boy, you're a fiesty one! I like Wiki, too. It's not really the article itself that is "feisting" me up . . . it's the editor's sanctimonious railing at Buster on the "Discussion" page that got me going! Bet you're feisty, too! I've yet to meet a PANDAS mom who isn't!
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