laurenjohnsonsmom Posted January 17, 2012 Report Posted January 17, 2012 (edited) I had been watching the other topic regarding this story but refrained from commenting as we have been working with the Today Show and others who are desperately trying to help these families. I can tell you that they are aware that this can be infectious triggered and that they are getting the correct contact information regarding the wonderful, brilliant doctors out there that have helped so many of our families and these doctors are more than willing to help. Out of respect for there privacy and our own personal, similar experience I hope people will help these families and provide support and be careful not to criticize what you see portrayed in the media. Let's all pray that these children and their families will find answers and most importantly, if they do decide to post on this forum, that we provide support as they struggle through this journey. Lynn Edited January 17, 2012 by laurenjohnsonsmom
airial95 Posted January 17, 2012 Report Posted January 17, 2012 Here's the link to the Video clip from the Today Show this morning: Le Roy outbreak on the Today Show
butterflymom Posted January 17, 2012 Report Posted January 17, 2012 (edited) - Edited February 3, 2016 by butterflymom
Iowadawn Posted January 17, 2012 Report Posted January 17, 2012 Sad, sad report. Where did they pull this doctor from? There has been docs that have reached out. Can I scream!!!!! Dawn
kimballot Posted January 17, 2012 Report Posted January 17, 2012 (edited) Sad, sad report. Where did they pull this doctor from? There has been docs that have reached out. Can I scream!!!!! Dawn I'm not seeing much in the way of expertise in movement disorders in her online bio... http://www.drgailsaltz.com/about.html http://www.drgailsaltz.com/bio.asp Edited January 17, 2012 by kimballot
butterflymom Posted January 17, 2012 Report Posted January 17, 2012 (edited) = Edited October 5, 2015 by tampicc
socalmom Posted January 17, 2012 Report Posted January 17, 2012 Dr. T is on the case. I spoke to him this morning,(trying to get lab results for my son) and he is trying to get involved and has been swamped by media he says.
Iowadawn Posted January 17, 2012 Report Posted January 17, 2012 No wonder she is spotting all the psycho-babble about "conversion disorder" and sounding like she does believe it. She has found out how to make money---she needs to see real patients. She has "rock star" status. Psycho-analyst?? She appears to be more psychologist than psychiatrist. We see both--we just happen to have good ones! Thank you Dr. T for helping!!! Dawn
EAMom Posted January 17, 2012 Report Posted January 17, 2012 Yes, thank you Dr. T! PS. IMHO (after watching this video) the whole "we can't tell the parents a diagnosis due to HIPAA" thing is a just part of a pathetic attempt at a cover-up on the part of NY State and the Mink/Kurlan-we've-ruled-out-infection minions.
laurenjohnsonsmom Posted January 17, 2012 Author Report Posted January 17, 2012 Thank you for posting. I am praying for them every day. I wish they could have IVIG treatment as soon as possible. It helped my son so much! I hope they can get to some more open-minded doctors quickly. It just stirs up lots of emotions (good and bad). These parents will get "shelled" with an overload of information, be stalked, criticized and more. Like they aren't already traumatized enough. Been there, done that, still doing "that". I guarantee you there is MUCH more than any media clip will portray. I also want to add a comment about the psychiatrist and her remarks about the "conversion disorder" and how the media works. These people have sometimes just a few hours (or minutes) to pull all the element s of a story together. Just like when Nancy Snyderman dropped the "munchausen bomb" on us the first time we were on the Today Show. Nancy had ZERO information about our situation before 2.6 million viewers watched our story, for the first time. There's a BIG race to "get to the story first" even of all the details haven't been worked out yet. Let's just all be grateful that the folks at the Today show will continue help them. Let's fill this topic full of supportive comments. I can tell you how absolutely devastated I was when I found this forum, just a few days after we hit mainstream media. There were just as many "not so nice" comments and critiques about my family as there was support. After we were on the Today show on Veterans Day we were stuck in Manhattan because there where storms in our hometown that shut down all the airports on that end. We spent 3 days getting our arms and legs pull off my different people who all wanted a piece of the story. We just wanted to find help for our daughter. When we finally landed into the airport in darkness as power was still out for miles. I sat in the darkness in my bed around midnight, mental and physically exhausted that night and fired up my laptop (we had cable/internet but no power) and I received an email that directed me to this forum. I sat there and sobbed over some of the absolutely terrible things that I read about my family. Opinions, predictions...It was devastating! Oh, and let's not forget that the last thing we saw when we were boarding the plane that day was Sanjay Gupta and my daughters face plastered on EVER TV monitor in the entire airport! I sat there with my jaw dropped as he explained that my daughter's condition was psychosomatic! THANKS FOR NOTHING DR. GUPTA! At least Nancy Snyderman went back on the Today Show the day after our first appearance and retracted her previous comments and simple said "we don't know" and this could be infectious driven/triggered. You will NEVER see Sanjay Gupta do that!!!!
EAMom Posted January 17, 2012 Report Posted January 17, 2012 So it sounds like they are not even giving these parents/teens copies of their own medical records to see what tests have been done? Or am I misunderstanding? How is this even legal?
lmkmip67 Posted January 17, 2012 Report Posted January 17, 2012 Seeing Lauren's story on the Today show is what caused my son to be diagnosed, or I would never have gone down that path. So thank you for sharing your story with the public even though I know at times it must have been SO hard to deal with all of that. I have learned so much through this journey and the biggest lesson is to not judge. No one knows what we deal with until they walk in our shoes. I hope they can find some help for those poor girls. I see their struggles in my son. Even though his tics are gone for the moment, the OCD lingers like a big black cloud. I will be following this story on the girls. Maybe this will bring some much needed attention to this disorder! I hope it offers help for them all, too. For there to just be an answer, is a huge step in the right direction. The psychiatrist pissed me off. Good for the one girl that stated she had tried all kinds stuff, and that she is more stressed from all of this than ever before. I hate media doctors that just pick up info before a show and think they know it all.
EAMom Posted January 17, 2012 Report Posted January 17, 2012 The psychiatrist pissed me off. Good for the one girl that stated she had tried all kinds stuff, and that she is more stressed from all of this than ever before. Yup, I'm so glad Thera (sp?) spoke up at the end, it really made that psychiatrist with her conversion disorder pyscho babble look all the more ridiculous.
tpotter Posted January 17, 2012 Report Posted January 17, 2012 Did you notice that Anne Curry cut off the psychiatrist when she started on her psychobabble, and ended the piece with a statement about how the girls just want doctors to contact them, and give them some ideas of what is going on? Good for her!
Johnsmom Posted January 17, 2012 Report Posted January 17, 2012 Doesn't anyone find it odd that it's all girls? This can happen with the Gardasil vaccine or probably any vaccine for that matter. Was the vaccine question ever asked? Maybe I missed that part.
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