Show Cooperation and Kindness on the PANS Forum or be Banned

[Sheila]

We have merged the PANDAS and Lyme forums under PANS. The two forums were previously separate due to a conflict between members.

 

In the past, some people were insensitive to those who thought PANS type symptoms might be due to Lyme disease or to a combination of infections. We had to make a separate Lyme forum to "protect" these members from aggressive PANDAS posters.

 

The feedback we've received recently is that the tone in the PANDAS forum has improved. Members should now be able to post about Lyme and other infections under a single PANS category and not fear aggressive replies.

 

Please know that we will not tolerate a lack of thoughtfulness on the forums. If we receive reports of intimidating or unkind posts, a warning will be given before a suspension or permanent banning.

 

We are counting on everyone to do their very best to make sure that this a safe and helpful forum for the many who need it.

 

Thank you, Sheila

[TOaksMom]

Thank you very much Shelia for hosting this invaluable forum, adding the new PANS label, and upgrading the site. I'd like to remind everyone that Swedo's 2012 updated paper: From PANDAS to PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) clearly states in figure 1 that "Lyme, mycoplasma, and others?" are in the same infectious triggers category as Group A Streptococci (PANDAS).

 

 

 

http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf

 

Lately there seems to be less strep only PANS children and it is great that our resources can be grouped together now which will help us reach our goal of healing our kids.

[ptcgirl]

So glad they are all together. Thanks for this forum!

[Suzan]

Thank you Sheila!

[airial95]

I would also ask that the respect work both ways - for those of us who are not dealing with lyme, respect should be shown for our decisions/approach as it relates to how or why we have ruled it out without judgement.

[LNN]

I would also ask that the respect work both ways - for those of us who are not dealing with lyme, respect should be shown for our decisions/approach as it relates to how or why we have ruled it out without judgement.

Couldn't agree more. I think it's fine for one or two posts about lyme & co. especially to a newbie or to someone who posts about symptoms that are less than traditional pandas (e.g. drenching night sweats that could be babesia and isn't common to Pandas and perhaps a parent doesn't have that info yet). But we aren't here to diagnose or "convert" others. Throwing out ideas to explore is different than badgering and tone of post is critical to the health of this community.

 

I think it's important we self-police and if you see a thread taking a negative turn, I hope everyone feels comfortable speaking up and respectfully reminding us to get back on point. Would hope to see "some things to consider consider," "in my experience," "maybe" and not "should," must," "definitely"... Same would go to PMs - if a parent chooses not to pursue your thoughts in a public thread, please don't continue to badger in a PM.

 

I have strong feelings about certain topics within Pandas based on personal experiences. Sometimes I try to insert an "opposite" view for balance but if I ever come across as too negative or disrespectful, I'd hope that someone would let me know (in a kind way). I belong to a FB group that struggles with the same issue. For the most part, there's tolerance but unfortunately, some forget to rein in their passions. Let's let this pull us together and not apart.

[airial95]

LLM - I tried to use the "Like This" feature but was told I had "reached my quota of positive votes for the day" (eventhough it's the first attempt at hitting like!). Not a good start to postiivity!!!

 

But I would like to riterate your point about using phrases "in our experience", "something to think about", etc... it's something I always try to live by!! I'll also add that if I'm going to insert a differing opinion, especially one that may be "controversial" - I'll preface it with something like "some my not agree", or "this might not be a popular response" to highlight that I am not trying to be negative - just offering a different point of view. I feel it has gone a long way to helping keep discussions civil.

 

And ditton on the FB group - we're all just trying to hlep our kids out! Disagreement can be healthy, as long as it's repsectful!!!

[Sheila]

Thanks for all the good feedback. These are great points you all have made, and I agree it works both ways--as well as for posting on other forums about possible PANS issues. I'm looking forward to things going smoothly!