ajcire Posted September 23, 2009 Report Share Posted September 23, 2009 I don't see how you could get a school to do that when it's hard enough to get the local dr's to acknowledge this. Link to comment Share on other sites More sharing options...
peglem Posted September 23, 2009 Report Share Posted September 23, 2009 I don't see how you could get a school to do that when it's hard enough to get the local dr's to acknowledge this. I was thinking you'd have to campaign to educate both doctors and schools. Whenever I've brought it up to schools, they want medical confirmation. Link to comment Share on other sites More sharing options...
ShaesMom Posted September 23, 2009 Report Share Posted September 23, 2009 Okay, I went to the bookstore and actually held the book in my hands. I read the references and the opening acknowledgements. Tears were stinging my eyes just holding the book. I put it back-maybe I'll buy it another day. I just don't think emotionally I'm ready to take that journey with Beth and Sammy. I think Shae's case to date has been pretty mild compared to most and reading about what could still come about is way to scary. I would love to buy several copies and pass them around to friends, family, and the school. Let them really get a good idea of what life has been like around our household these days. Link to comment Share on other sites More sharing options...
Lisa1971 Posted September 23, 2009 Report Share Posted September 23, 2009 Good news...sort of... My only cousin is a camera man for the Today Show...so after reading this I gave him a call...he said...basically...this story had to have personally touched someone on staff for it to be made into a segment...that's how the show works...I told him about my son...about all of us...about how there are still a number of you fighting to get help for your children...how this illness is very real... He is going to speak with the producers and find out as much background as he can about the segment...he will also try and speak to whomever will listen to hopefully let them know this is a "story" that should be explored...so hopefully...this will not end for us here...hopefully this will be just the beginning... In speaking with him, it turns out his son who is about 5 or 6 has been dealing with intermittent tic issues which have had them all baffled...sound familiar...not saying it is PANDAS related...as I have not spoken enough with him to find out (he was heading on set to do the Colbert Report but promised he would call me later tonight) anyway....he is an emmy-nominated camera man...with a lot of contacts and a deep desire to produce something worthwhile...I come from a very small family that does not live close, does not speak often, but are always there for each other in times of crisis...and will do whatever it takes to help...he is very interested in doing what he can to help...especially if it turns out that the coincidence of me coming on here today to see what is going on, finding out about the Saving Sammy book, then finding out she will be on the show tomorrow...somehow ends up helping his son as well... I will keep everyone posted...and please keep your finger crossed... Link to comment Share on other sites More sharing options...
peglem Posted September 23, 2009 Report Share Posted September 23, 2009 Good news...sort of... My only cousin is a camera man for the Today Show...so after reading this I gave him a call...he said...basically...this story had to have personally touched someone on staff for it to be made into a segment...that's how the show works...I told him about my son...about all of us...about how there are still a number of you fighting to get help for your children...how this illness is very real... He is going to speak with the producers and find out as much background as he can about the segment...he will also try and speak to whomever will listen to hopefully let them know this is a "story" that should be explored...so hopefully...this will not end for us here...hopefully this will be just the beginning... In speaking with him, it turns out his son who is about 5 or 6 has been dealing with intermittent tic issues which have had them all baffled...sound familiar...not saying it is PANDAS related...as I have not spoken enough with him to find out (he was heading on set to do the Colbert Report but promised he would call me later tonight) anyway....he is an emmy-nominated camera man...with a lot of contacts and a deep desire to produce something worthwhile...I come from a very small family that does not live close, does not speak often, but are always there for each other in times of crisis...and will do whatever it takes to help...he is very interested in doing what he can to help...especially if it turns out that the coincidence of me coming on here today to see what is going on, finding out about the Saving Sammy book, then finding out she will be on the show tomorrow...somehow ends up helping his son as well... I will keep everyone posted...and please keep your finger crossed... Wow, that is exciting- just the possibility that something could, maybe happen... It would be cool, also, for someone with a recovered child to get their story on one of those mystery diagnosis shows. Link to comment Share on other sites More sharing options...
T_Mom Posted September 23, 2009 Report Share Posted September 23, 2009 Okay, I went to the bookstore and actually held the book in my hands. I read the references and the opening acknowledgements. Tears were stinging my eyes just holding the book. I put it back-maybe I'll buy it another day. I just don't think emotionally I'm ready to take that journey with Beth and Sammy... ShaesMom, I just have to comment on this as I had a similar visceral reaction last night. I had waited for weeks to get the book...it arrives and I carry it around all afternoon. I put off opening it until late in the evening--and had the same reaction. I found myself praying as I really did not want to read that book... Just too close to home. I want to point out a critical difference though in Beth Mahoney's experience--a difference from most of us reading this forum. This dear mother could not find anyone who had the slightest idea of how to help--for a long time, but then she did. We do know what has made a difference for others and may make a difference for our child. I am very thankful that when my own d was in her worst episode Dr. K was around to suggest a steroid burst -- that antibiotics were being discussed on this forum, which I was lurking on at the time--and we tried both, and she started walking, talking, stopped wetting herself, opened her eyes and stopped spitting at us--She came back and started interacting like a normal 10 year old again. It is a great gift to have -- knowledge about possible options. Link to comment Share on other sites More sharing options...
T_Mom Posted September 23, 2009 Report Share Posted September 23, 2009 Is it NBC that does 48 Hours? or some type of mystery show that might feature us? Great idea-- Link to comment Share on other sites More sharing options...
peglem Posted September 23, 2009 Report Share Posted September 23, 2009 Is it NBC that does 48 Hours? or some type of mystery show that might feature us?Great idea-- Discovery Health is the channel that broadcasts Mystery Diagnosis. Link to comment Share on other sites More sharing options...
thereishope Posted September 24, 2009 Report Share Posted September 24, 2009 First off, I hope his son is well. There does seem to be a genetic factor so it's good he is now aware of it. Second, thanks for letting us know about your conversation with him. Hopefully good things will come of it. It is a big coincidence that you happen to check the board today and how everything else snowballed from there. Good news...sort of... My only cousin is a camera man for the Today Show...so after reading this I gave him a call...he said...basically...this story had to have personally touched someone on staff for it to be made into a segment...that's how the show works...I told him about my son...about all of us...about how there are still a number of you fighting to get help for your children...how this illness is very real... He is going to speak with the producers and find out as much background as he can about the segment...he will also try and speak to whomever will listen to hopefully let them know this is a "story" that should be explored...so hopefully...this will not end for us here...hopefully this will be just the beginning... In speaking with him, it turns out his son who is about 5 or 6 has been dealing with intermittent tic issues which have had them all baffled...sound familiar...not saying it is PANDAS related...as I have not spoken enough with him to find out (he was heading on set to do the Colbert Report but promised he would call me later tonight) anyway....he is an emmy-nominated camera man...with a lot of contacts and a deep desire to produce something worthwhile...I come from a very small family that does not live close, does not speak often, but are always there for each other in times of crisis...and will do whatever it takes to help...he is very interested in doing what he can to help...especially if it turns out that the coincidence of me coming on here today to see what is going on, finding out about the Saving Sammy book, then finding out she will be on the show tomorrow...somehow ends up helping his son as well... I will keep everyone posted...and please keep your finger crossed... Link to comment Share on other sites More sharing options...
thereishope Posted September 24, 2009 Report Share Posted September 24, 2009 Personally, I never saw the show, but does the show "House" do out of the ordinary diseases and disorders? I wonder if the website has a show suggestion spot. I know it's fiction, but still... It would be cool, also, for someone with a recovered child to get their story on one of those mystery diagnosis shows. Link to comment Share on other sites More sharing options...
Kayanne Posted September 24, 2009 Report Share Posted September 24, 2009 I just finished it....WOW!!! I went to Borders this afternoon around lunch, and they already sold their two copies...Luckily Barnes and Nobel had it....also picked up "Against Medical Advice"...can't wait to start that. Beth Maloney is a very talented storyteller. Of course the tears were flowing, but I would have cried even if it wasn't so personal. I am very struck at how extreme and chronic Sammy's case really was. What I really am so pleased about is how she didn't stop at PANDAS...she was willing to push the idea that many mental issues could have real infectious cause. Great Job, Beth! Link to comment Share on other sites More sharing options...
ajcire Posted September 24, 2009 Report Share Posted September 24, 2009 I keep telling my mom that I wish House would take on the case! Personally, I never saw the show, but does the show "House" do out of the ordinary diseases and disorders? I wonder if the website has a show suggestion spot. I know it's fiction, but still... It would be cool, also, for someone with a recovered child to get their story on one of those mystery diagnosis shows. Link to comment Share on other sites More sharing options...
thereishope Posted September 24, 2009 Report Share Posted September 24, 2009 Question...is it wrong to get copies from the library and on the inside back cover or last page write in pencil www.pandasnetwork.org? Does anyone know if pandas network refers people to this forum for support? Link to comment Share on other sites More sharing options...
mama2alex Posted September 24, 2009 Report Share Posted September 24, 2009 Question...is it wrong to get copies from the library and on the inside back cover or last page write in pencil www.pandasnetwork.org? Does anyone know if pandas network refers people to this forum for support? What a great idea! Maybe you could write it on a sticky note, so you're not acually writing in the book. Link to comment Share on other sites More sharing options...
EAMom Posted September 24, 2009 Report Share Posted September 24, 2009 I haven't received my pre-ordered copy from amazon yet (hopefully it will arrive today). I think it would be very helpful if as many people as possible could go to amazon and write a positive (lots of stars!) review of the book. The more highly reviewed books are more likely to sell/be read, right? I don't know if it is against any of amazon's rules to put in a mention of pandas network (probably!). But, you could also consider mentioning other treatments, other symptoms, perhaps a brief story of your own child (so others know that PANDAS can present in a variety of ways). Right now Saving Sammy is #64 in "hot new releases"...maybe we can push it up a bit! Link to comment Share on other sites More sharing options...
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