ajcire Posted November 12, 2009 Report Share Posted November 12, 2009 That is a great reminder to us all!! Ok, so I hate to be a naggy mom, and this is a reminder to me as much as anything - this child's parents may very well end up on this site in the near future, looking for help. Link to comment Share on other sites More sharing options...
faith Posted November 12, 2009 Report Share Posted November 12, 2009 yes of course, you are right, but for me, my feelings are based on not that these people didn't know what a tic was, not making fun or light of that......but that no DOCTOR that they saw could tell them that? and that this child only had it for two weeks? most don't go see a bunch of doctors in the first week, it usually takes a week or two before you start thinking its time to see alot of different doctors and that something might be wrong and is not going away. And I'm not trying to be funny in my posts re this, I was actually trying to convey my skeptisism that this story is not as straightforward as it looks, and trying to do so in a humourous way so as not to sound like a doubting thomas. that's all. I think my pont is that these parents had an idea of what could be going on, because the dad is "UBER" smart, , and they don't live in the desert, if they were savy enough to get on a morning talk show after only dealing with a repetitve sneeze (tic) for only two weeks, then they are savy enough to scour the internet and I'm sure they did. I think it just breaks my heart for those that hve had numerous, debilitating symptoms (and I am NOT one of them), my son has had lots of tics, but he is functional, I am going by the heartbreaking and stunning stories that some of you have shared here. I know for a fact that there are kids here that cannot even get on a plane to see one of the experts because their problems are many. .... I don't think that mother will be coming here, she has been put in touch with the best of the best. that little girl will be well. thankfully, yes, happy for her, but sad for so many others. ... sorry if I made a faux pax, but...but.... I did mention I was starving,...right?....(said in a wee little voice....) Link to comment Share on other sites More sharing options...
ajcire Posted November 12, 2009 Report Share Posted November 12, 2009 Faith, I think it was a good reminder for all us.. not just you I definitely agree that it should have taken only one doctor to figure out that was not a sneeze. I also agree that there is likely more behind it... either way if that little girl hit the jackpot by now getting access to knowledgeable doctors that is great. I totally hear you though.. it is really really frustrating knowing that there are parents here who have been battling with this for so long, who already know what is wrong, but still can't get the right help for their child Now go eat something!! yes of course, you are right, but for me, my feelings are based on not that these people didn't know what a tic was, not making fun or light of that......but that no DOCTOR that they saw could tell them that? and that this child only had it for two weeks? most don't go see a bunch of doctors in the first week, it usually takes a week or two before you start thinking its time to see alot of different doctors and that something might be wrong and is not going away. And I'm not trying to be funny in my posts re this, I was actually trying to convey my skeptisism that this story is not as straightforward as it looks, and trying to do so in a humourous way so as not to sound like a doubting thomas. that's all. I think my pont is that these parents had an idea of what could be going on, because the dad is "UBER" smart, , and they don't live in the desert, if they were savy enough to get on a morning talk show after only dealing with a repetitve sneeze (tic) for only two weeks, then they are savy enough to scour the internet and I'm sure they did. I think it just breaks my heart for those that hve had numerous, debilitating symptoms (and I am NOT one of them), my son has had lots of tics, but he is functional, I am going by the heartbreaking and stunning stories that some of you have shared here. I know for a fact that there are kids here that cannot even get on a plane to see one of the experts because their problems are many. .... I don't think that mother will be coming here, she has been put in touch with the best of the best. that little girl will be well. thankfully, yes, happy for her, but sad for so many others. sorry if I made a faux pax, but...but.... I did mention I was starving,...right?....(said in a wee little voice....) Link to comment Share on other sites More sharing options...
marcicooynhc Posted November 12, 2009 Report Share Posted November 12, 2009 This little girl was on the Today Show yesterday, and then again the Today Show had Dr. Nancy on this morning mentioned a possible link to strep/tics, even mentioned Pandas, Dr. Nicolaides (Dr. who treated Sammy) and Dr. Jim Leckman at Yale. This morning's segment showed the little girl reading the "Saving Sammy" book. Maybe Pandas wil get a bit more attention again on the TODAY Show! Dr. Nancy said they would continue to follow this story. http://today.msnbc.msn.com/id/33852290/ns/...y-today_health/ As soon this aired I contacted all news media on the fact that this was definately due to a childhood autoimmune disorder (either PANDAS or PITAND-a variant of PANDAS not due to strep. I forwarded on the name of Jamie's Psychiatrist, Dr Robert Reichler as he was the first one to understand this crippling disorder's affect on childhood OCD, tics, tourettes. He was the one who contacted the National Institute of Mental Health and Susan Swedo in 2001. Why is all of this attention going to Dr Nicolaides? What about all the research and knowledge received from Susan Swedo AND Judith Rapoport? Let's get to the founders on the research that has been done and give them credit. Thank you to Dr. Susan Swedo, Dr Judith Rapoport, and Dr Robert Reichler! You all contributed to our son Jamie's Recovery in 2001. It is your time to get the credit YOU deserve. Please to continue to research other triggers besides strep to these crippling autoimmune disorders. Marci Lichtenwalter Moondance to the Cure Facebook Marci Lichtenwalter http://www.jamiesstory.wordpress.com Twitter: DrKen1stPitch YouTube Jamie's Story Link to comment Share on other sites More sharing options...
faith Posted November 12, 2009 Report Share Posted November 12, 2009 Why is all of this attention going to Dr NicolaideS? ....................... The PANDAS FOUNDATION!! (??)........ Link to comment Share on other sites More sharing options...
Buster Posted November 12, 2009 Report Share Posted November 12, 2009 Anyone know how to send a response to their request about how to help the girl? Seems someone should recommend checking for anti-neural antibodies and Cam Kinase II activation. Buster This little girl was on the Today Show yesterday, and then again the Today Show had Dr. Nancy on this morning mentioned a possible link to strep/tics, even mentioned Pandas, Dr. Nicolaides (Dr. who treated Sammy) and Dr. Jim Leckman at Yale. This morning's segment showed the little girl reading the "Saving Sammy" book. Maybe Pandas wil get a bit more attention again on the TODAY Show! Dr. Nancy said they would continue to follow this story. http://today.msnbc.msn.com/id/33852290/ns/...y-today_health/ Link to comment Share on other sites More sharing options...
pixiesmommy Posted November 12, 2009 Report Share Posted November 12, 2009 I didn't see the actual show, so just the segment link to... They mentioned that it started after a cold, so I am definitely thinking PANDAS/PITAND. The mom sounded like they never thought it was an actual sneeze... she even said, "it was different, it was not productive, it was rhythmic..." I'm not sure what the skepticism is about.... ? Sounds like they are just trying to get to the bottom of it... though why it made the TODAY show after just 2 weeks is beyond me... surely there is some sort of connection somewhere with them and the producer or something. The end of the segment says to suggest help for her go to www.todayshow.com There is a "contact us" link on the left of the page. Link to comment Share on other sites More sharing options...
EAMom Posted November 13, 2009 Report Share Posted November 13, 2009 though why it made the TODAY show after just 2 weeks is beyond me... surely there is some sort of connection somewhere with them and the producer or something. Yup...I wonder if they knew someone...b/c as far as PANDAS symptoms go, hers were IMO pretty minor! Link to comment Share on other sites More sharing options...
thereishope Posted November 13, 2009 Report Share Posted November 13, 2009 I wondered the same thing. I googled the moms name and where she lives and a facebook account poped up. I wen to it but was nervous to write since I didn't know for sure if it was her. But, I am watching Campbell Brown right this instant and they just showed the mom on tv. I think it's her. So I suppose we could message her and worse scenario, it's the wrong person. Anyone know how to send a response to their request about how to help the girl? Seems someone should recommend checking for anti-neural antibodies and Cam Kinase II activation. Buster This little girl was on the Today Show yesterday, and then again the Today Show had Dr. Nancy on this morning mentioned a possible link to strep/tics, even mentioned Pandas, Dr. Nicolaides (Dr. who treated Sammy) and Dr. Jim Leckman at Yale. This morning's segment showed the little girl reading the "Saving Sammy" book. Maybe Pandas wil get a bit more attention again on the TODAY Show! Dr. Nancy said they would continue to follow this story. http://today.msnbc.msn.com/id/33852290/ns/...y-today_health/ Link to comment Share on other sites More sharing options...
faith Posted November 13, 2009 Report Share Posted November 13, 2009 They've already said today that they got hundreds (maybe more) of e-mails with offers of help and PANDAS was mentioned. She is already being hooked up with Dr. Leckman at Yale. Link to comment Share on other sites More sharing options...
britneymag Posted November 13, 2009 Report Share Posted November 13, 2009 Why are we questioning it? I'm sure that she did know someone and did get on the show because of that. I am just thankful that she did and that PANDAS was mentioned in a positive way. If this turns out to be PANDAS it is going to open so many doors for our children. I am jumping for joy right now because it is finally being recognized:) Melanie Link to comment Share on other sites More sharing options...
Worried_Dad Posted November 13, 2009 Report Share Posted November 13, 2009 Ditto - I'm doin' me Irish jig right beside ya, Melanie! If it puts PANDAS in the public spotlight, it's got to make it harder for those darned docs to look at us like we're nuts and say "strep does not cause tics, OCD, etc." (Of course, they'll probably still blow all of this off as "anecdotal"... like that's a 4-letter word.) Why are we questioning it? I'm sure that she did know someone and did get on the show because of that. I am just thankful that she did and that PANDAS was mentioned in a positive way. If this turns out to be PANDAS it is going to open so many doors for our children. I am jumping for joy right now because it is finally being recognized:) Melanie Link to comment Share on other sites More sharing options...
Megs_Mom Posted November 13, 2009 Report Share Posted November 13, 2009 Amen!!! Ditto - I'm doin' me Irish jig right beside ya, Melanie! If it puts PANDAS in the public spotlight, it's got to make it harder for those darned docs to look at us like we're nuts and say "strep does not cause tics, OCD, etc." (Of course, they'll probably still blow all of this off as "anecdotal"... like that's a 4-letter word.) Why are we questioning it? I'm sure that she did know someone and did get on the show because of that. I am just thankful that she did and that PANDAS was mentioned in a positive way. If this turns out to be PANDAS it is going to open so many doors for our children. I am jumping for joy right now because it is finally being recognized:) Melanie Link to comment Share on other sites More sharing options...
michele Posted November 13, 2009 Report Share Posted November 13, 2009 Is there a link to the follow up where she talks possible PANDAS? Dr. Snyderman did have a serious change of heart here. Before she laughed about PANDAS and casted a doubt that it existed now she is suggesting a connection? I know I sent quite a few letters to her and the show about Sammy's interview and how she threw parents under the bus with her casting a doubt when we already are having trouble getting Dr's to help. Maybe everyone's comments caused her to look it up and learn a little about it. Sometimes she seems so detached to these stories. Great they are putting the word about PANDAS out there! Michele Ok, so I hate to be a naggy mom, and this is a reminder to me as much as anything - this child's parents may very well end up on this site in the near future, looking for help. Whatever the level of experience of a parent that is new to this forum, everyone is always very helpful and considerate as they learn more. There are no stupid questions - when we are hit over the head with this, we do the best we can. I'm sure there are moms that would laugh out loud about how long it took us to understand what OCD actually is. I thought spitting was a tic for a month before I understood that it was a compulsion and a habit tangled up together. I actually reprimanded my child for imaginary confessions and spoke to her very sternly about cheating - when actually she had Scrupulosity. We told her a million times to quit baby talking. She ran to her room in tears of frustration. If I could take that back now, I would. So to me, that sneeze is clearly a tic. But I am a different person now, than I was before PANDAS. I can't judge anymore what should be obvious to others that don't live in my house. My eyes widen frequently, and I have to bite my tongue and find careful words when I see clear OCD or tics in other children. I love the humor on this site, but I just think we should keep that for those of us that can handle it - and leave the newbies out of it until they are past the point of panic. I want her to feel very welcome if she comes here - and that we are grateful for the publicity. For some this is a mild disease - but for many it is debilitating to the point of severe anorexia and hospitalization - or being pulled out of school. One of our primary roles is to help each other. But just as importantly, this site stands as the portal for most parents to learn about PANDAS. When you google PANDAS, this site comes up the majority of the time. Well said!! Link to comment Share on other sites More sharing options...
EAMom Posted November 13, 2009 Report Share Posted November 13, 2009 I should add, that while I consider the girls symptoms to be "minor" compared to what those on this forum have gone through, they are also good for TV b/c they are 1) easily visible and 2) "socially acceptable". Can you imagine a PANDAS child that was raging or had some other crazy symptoms that our kids get? too much stigma concerning mental illness and/or too much room for folks to to say "poor parenting" (think of super nanny!). Link to comment Share on other sites More sharing options...
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