forjpj Posted March 25, 2010 Report Share Posted March 25, 2010 Ok...I am updating my pandas bookmarks...just so I get this right... Information is available at the following sites - this forum Pandas Network Dr. T's forum on Yuku Pandas Foundation Pandas Resource Network on FB there is Pandas Pepsi Beth Alison Maloney/Saving Sammy pages Any others I'm missing? Link to comment Share on other sites More sharing options...
EAMom Posted March 25, 2010 Report Share Posted March 25, 2010 NIMH hahhhahahaha... Link to comment Share on other sites More sharing options...
Chemar Posted March 25, 2010 Report Share Posted March 25, 2010 Dr K's site http://www.webpediatrics.com/pandas.html Link to comment Share on other sites More sharing options...
thereishope Posted March 25, 2010 Report Share Posted March 25, 2010 There's a few PANDAS groups on fb too. But not very active. I think a good portion of us are "friends" now so that's how we communicate. Wanna be my friend? Link to comment Share on other sites More sharing options...
forjpj Posted March 25, 2010 Author Report Share Posted March 25, 2010 There's a few PANDAS groups on fb too. But not very active. I think a good portion of us are "friends" now so that's how we communicate. Wanna be my friend? Sure!! I'll be your friend!! Ah yes.. Dr. K and NIMH . Thanks!! You think if I get these organized my husband will look at them? Link to comment Share on other sites More sharing options...
Joan Pandas Mom Posted March 25, 2010 Report Share Posted March 25, 2010 What have I missed with NIMH? There's a few PANDAS groups on fb too. But not very active. I think a good portion of us are "friends" now so that's how we communicate. Wanna be my friend? Sure!! I'll be your friend!! Ah yes.. Dr. K and NIMH . Thanks!! You think if I get these organized my husband will look at them? Link to comment Share on other sites More sharing options...
EAMom Posted March 25, 2010 Report Share Posted March 25, 2010 Nimh's website is a big thorn in the side of PANDAS parents (esp. since peds/docs likely look at it and trust it)! It is out of date, recommends PANDAS be treated like any other case of OCD (psych. drugs) and not abs or IVIG...also, it misleads parents/docs to into thinking that PANDAS kids will have elevated strep titers. "What the NIMH website should be" thread http://www.latitudes.org/forums/index.php?...hl=nimh+website Link to comment Share on other sites More sharing options...
fifide Posted March 25, 2010 Report Share Posted March 25, 2010 Ok...I am updating my pandas bookmarks...just so I get this right...Information is available at the following sites - this forum Pandas Network Dr. T's forum on Yuku Pandas Foundation Pandas Resource Network on FB there is Pandas Pepsi Beth Alison Maloney/Saving Sammy pages Any others I'm missing? Do you have a web address for Dr. T's forum? I can't find it! Thanks. Link to comment Share on other sites More sharing options...
Chemar Posted March 25, 2010 Report Share Posted March 25, 2010 Do you have a web address for Dr. T's forum? I can't find it!Thanks. http://www.latitudes.org/forums/index.php?showtopic=7411 Link to comment Share on other sites More sharing options...
fifide Posted March 25, 2010 Report Share Posted March 25, 2010 Do you have a web address for Dr. T's forum? I can't find it!Thanks. http://www.latitudes.org/forums/index.php?showtopic=7411 Thanks for that! Link to comment Share on other sites More sharing options...
Kayanne Posted March 25, 2010 Report Share Posted March 25, 2010 NIMH hahhhahahaha... Thanks for the laugh....I almost fell off my chair! Link to comment Share on other sites More sharing options...
EAMom Posted March 26, 2010 Report Share Posted March 26, 2010 (edited) Ellen's son's website: http://pandas-syndrome.webs.com Edited March 26, 2010 by EAMom Link to comment Share on other sites More sharing options...
mama2alex Posted March 26, 2010 Report Share Posted March 26, 2010 Here's another one I found interesting. It was posted a few weeks ago by one of the moms here: http://pandasvaccinesandmore.blogspot.com/ Link to comment Share on other sites More sharing options...
colleenrn Posted March 27, 2010 Report Share Posted March 27, 2010 I second the hahahahahahahaha regarding NIMH web site. I think it is doing harm to a lot of children b/c their physicians read it and treat based on the old recommendations. I posted this before, but in Feb. 2009, I was corresponding with Dr. Swedo as she had diagnosed my oldest child in 2001. She said "we are in the process of updating it". Still waiting for that very crucial update....................... Colleen Link to comment Share on other sites More sharing options...
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