butterflymom Posted February 26, 2011 Report Share Posted February 26, 2011 (edited) = Edited October 5, 2015 by tampicc Link to comment Share on other sites More sharing options...
SarahJane Posted February 26, 2011 Report Share Posted February 26, 2011 You Go You Crazy PANDAS Mom You! Seems like you might have enough for a local support group in that audience, eh? That's terrific that you were there to at least put PANDAS on those moms' radars tho'. And that is heartening that the dr didn't dismiss it. A little PANDAS exposure can go a long way for education, & planting the seed of the condition for the others in light of the comorbidity rate with ASD was good too. Thanks for sharing! Hope all is going well. Link to comment Share on other sites More sharing options...
kferricks Posted February 26, 2011 Report Share Posted February 26, 2011 You are awesome! I'm sure those parents will show up here and possibly get the help they need. Link to comment Share on other sites More sharing options...
GraceUnderPressure Posted February 26, 2011 Report Share Posted February 26, 2011 I wish there was a way to get the info about PITAND out there - esp to the moms who are dealing with autism because those kids seem to be more vulnerable to this stuff - that it is not just strep that can cause neuro problems. It kills me that I heard about PANDAS years ago, but never looked further into it because my ds did not have strep. But my ds had problems with nighttime bedwetting & handwriting issues & all those tell-tale symptoms that would have otherwise clued me in had the info been available to me. Link to comment Share on other sites More sharing options...
thereishope Posted February 26, 2011 Report Share Posted February 26, 2011 (edited) You're great! If you want to write a letter to him, post it on here and get "virtual signatures" from parents, I will gladly sign it! When he did a twitter q and a awhile ago, he didn't get a lot of questions, in general, yet he never responded to my questions about PANDAS. I tweeted it multiple times when I realized he wasn't going to respond. No acknowledgement at all. I'm glad you were able to ask him in person where he had no choice but respond. But, yes, he needs some things clarified. Edited February 26, 2011 by Vickie Link to comment Share on other sites More sharing options...
EAMom Posted February 26, 2011 Report Share Posted February 26, 2011 Horray for you! Link to comment Share on other sites More sharing options...
AmberM Posted February 27, 2011 Report Share Posted February 27, 2011 Dr. Sears was the first DAN! I took my dd to. He's very nice but I didn't get the feeling that he knows a lot about PANDAS. He ran ASO/ ANTi d-nase and they were fine so declared dd was fine. She's a PITANDS kiddo though. I went to the TACA meeting that he spoke at in Cali and I liked the talk but felt it really catered to the families that were just starting out. It almost sounded too easy to recover a kid. Maybe I'm just jaded..... we've been through a lot lately. He does know a lot about vaccines though. -Amber Link to comment Share on other sites More sharing options...
Telya Posted February 27, 2011 Report Share Posted February 27, 2011 Planting the seed is all you need. My ds school psychologist said in our very first meeting when my son had his onset. " I wonder if this is pandas" everyone was like "what's that" 3 years later and I now know he has it. Even though no dr. Or psych. Ever mentioned it, or worse they dismissed it when I asked about it. If she had never planted that seed long ago I wouldn't have kept looking. Keep planting. Link to comment Share on other sites More sharing options...
Mary M Posted February 27, 2011 Report Share Posted February 27, 2011 Every little step towards enlightening the world about PANDAS gets us that much closer to health and hope! Thanks for putting it out there! Mary from Michigan Link to comment Share on other sites More sharing options...
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