ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 You know what, I think you are right. I was giving her the benefit of the doubt but I do agree with you. Other people's comments are not her endorsing any medical advice... simply they are just other people's comments. I do agree.. unless she has a publicist telling her to be careful. It is very possible that this will become more about the book than the cause. Not sure if you guys saw but she did explain why she took them down. I can understand what she is saying although I think that what she maybe needs to do than is not make more reference to that her info is only based on her Son's experience.... so she should not imply that low titers equals no pandas... .. but rather just state that she doesn't know but that her son had high titers. Here is what she posted. FYI: I need to be extremely careful about 3rd party posts endorsing medical advice/positions. I can only vouch for Sammy's story, and this is not a blog. General comments such as "my son had this" or "you might think of that"...; are welcome. And others can email you directly through Facebook for more information. But I'll be erring on the side of caution, so please keep that in mind when you post. Thanks! Personally, I think that is a big line of #%$&*! So should we all each post a simple statement, something like, "My son/daughter has PANDAS with low strep (ASO/anti-dnase b ) titers. You might think of not ruling out PANDAS based on titers alone." That is a general comment...5-6 FB'ers each posting a simple line like that one after another might just get our point across....after all she is the one that claims she had heard from only 1-2 parents where strep titers failed to comfirm the presence of strep. Link to comment Share on other sites More sharing options...
faith Posted October 27, 2009 Report Share Posted October 27, 2009 All very interesting. I'm guessing the story she told is the story she told, and they want to keep it that way. I can understand that other people's comments may confuse the issue, as she is telling it, so really not sure what to make of this. Its possible that the doctor that she worked with, they may have some sort of agreement to stick to the facts as it happened for her son, and only her son. I do recall her words during the interview was "I'm not going to say too much because I don't want to be the source of information for this" or something to that effect. What that said to me is that there is way more too it and its complicated, son don't quote me....." But what I find kind of wierd is that her story (just like the the other mom Marci was it? with the boy named Jaime?) their stories happened in 2001. this was quite a few years back, so I find it all a little outdated I guess. I don't know what I'm trying to say, but this lady has a book and the book is about her experience and I'm guessing she is careful to make sure her story sounds accurate and credible. I'm thinking we should not mess with it. The story is out there, its a start. I still think its the medical community that needs educating thru other kids' unique cases, not the parents, they will find the info, but what good is it if they don't have the help of the medical community? And that whole Oprah thing, I'm sure its about the kids suffering from PANDAS, but there is a book, and its about her story, so, not sure if this is really gonna go the way some of you hope. just sayin. Faith Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 I'm thinking we should not mess with it. The story is out there, its a start. I still think its the medical community that needs educating thru other kids' unique cases, not the parents, they will find the info, but what good is it if they don't have the help of the medical community? The problem is that there are parents going onto her FB page saying "After reading your book we thought my kid with OCD/tourettes might also have PANDAS. But, we tested his ASO titers and they were low. Oh well, I guess it is not PANDAS like we had hoped." Link to comment Share on other sites More sharing options...
faith Posted October 27, 2009 Report Share Posted October 27, 2009 You are right. but is this what she is ultimately saying? I'm not on facebook so I can't read her stuff, ... is she promoting that ASO titers are what its all about? The way she tell it is the way my pediatrician is handling it all, so I understand what you're saying, if I just listened to him, I will miss the boat again. WE know there could be more to it, and there is. Perhaps it should be told that it has been a few years since her son's diagnosis and treatment and that they are finding that ASO tiers may not tell the whole story, and that parent's should do their own research. What about just referencing this site for more information? or is that not allowed? I really don't know. But again, why did she write this book so many years later, I'm wondering? Faith Link to comment Share on other sites More sharing options...
Suzan Posted October 27, 2009 Report Share Posted October 27, 2009 I'm thinking we should not mess with it. The story is out there, its a start. I still think its the medical community that needs educating thru other kids' unique cases, not the parents, they will find the info, but what good is it if they don't have the help of the medical community? The problem is that there are parents going onto her FB page saying "After reading your book we thought my kid with OCD/tourettes might also have PANDAS. But, we tested his ASO titers and they were low. Oh well, I guess it is not PANDAS like we had hoped." Yes, and my post only said that I had one daughter with high titers and one with normal titers even with positive strep tests and it was in direct response to her post that said that she had not heard from many who had normal titers. I feel like she could provide a way for parents to look further if they get normal titers without giving medical advice. I don't quite get it. I'm glad to see that lattitudes link was still on her site, at least it was a few days ago but I could not find the pandas network out there. Susan Link to comment Share on other sites More sharing options...
peglem Posted October 27, 2009 Report Share Posted October 27, 2009 But again, why did she write this book so many years later, I'm wondering? Faith, you are the queen of great questions!! Link to comment Share on other sites More sharing options...
dcmom Posted October 27, 2009 Report Share Posted October 27, 2009 I am sure Beth waited to write the book until she though Sammy could handle it. Don't forget she is an attorney- so of course she will be careful. I know there is some out of date info- but this book can only help those looking into pandas. There is only so much one person can do. She has told her story- she cannot tell everyone's story. I really admire her. Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 Yes, and my post only said that I had one daughter with high titers and one with normal titers even with positive strep tests and it was in direct response to her post that said that she had not heard from many who had normal titers. I feel like she could provide a way for parents to look further if they get normal titers without giving medical advice. I don't quite get it. I'm glad to see that lattitudes link was still on her site, at least it was a few days ago but I could not find the pandas network out there. Susan Yes! BTW one of the later comments was a person asking how a PANDAS child could have low ASO...I posted a brief explanation with a link to Buster's ASO/titer blurb on lattitudes. That got taken down. It's like she just wanted to snuff the whole conversation out. Her book made a big deal on ASO as a test for PANDAS (she never mentions ever getting Sammy's throat cultured, or testing to see if her other sons were carriers). I'm pretty sure she may have even had that ASO was a test for PANDAS on her website at one point, but it isn't there anymore. Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 I admire her as well but do question some motives because reality is that now this is a money maker as well for her and sometimes even the best intentions can get lost on the way when that happens. I don't find it odd to have waited on the book really. I mean one would say it's the same reason nobody else wrote a personal account and published it of this. I also imagine it was a work in progress for a long time. I'm sure she has checked out the site over here at some point now. Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 I don't find it odd to have waited on the book really. I mean one would say it's the same reason nobody else wrote a personal account and published it of this. I also imagine it was a work in progress for a long time. Yeah, I don't find waiting weird...maybe she wanted to make sure Sammy turned out okay and was at an age where he could consent to having the story told. Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 FYI here is her most recent post: I am very pleased and proud to announce the establishment of the PANDAS Foundation. The Foundation will shortly be launching its first campaign: Got Strep? There will be an opportunity for all to join in and help. The Foundation's goals are: ...Advocacy, Support, Research and Education. Website development is presently underway at http://www.pandasfoundation.org/ and I have agreed to serve as its national spokeswoman. The facebook page denotes Massachusetts General as the current recipient of donations while the Foundation's final steps are completed for receipt of tax-deductible donations.Read More Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 oops.. didn't mean to post. Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 I know there is some out of date info- but this book can only help those looking into pandas. There is only so much one person can do. She has told her story- she cannot tell everyone's story. I really admire her. But it would be so much more helpful if she was open to the possibility that PANDAS kids can have low ASO's and that this blood test should NOT be used as an unquestioned diagnostic test for PANDAS. The problem is that most parents are not like you and me ....they won't take the time to really research PANDAS further once their child's ASO comes out low. Most people will just trust the book (and what their docs are also likely saying) and give up on the idea of PANDAS. Sigh. Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 Okay...here is another example of a parent reading the book, "doing the test" and deciding their child doesn't have PANDAS, no questions asked. (from Amazon reviews). SIGH again. this book was an extremely quick read for me; as I wanted to find out what happened to Sammy and how he was going to be treated. My son was recently diagnosed with Tourette's and someone suggested I read the book and look into Panda's as it couldn't hurt. I enjoyed the story and how the book was written; sorry that any family would have to endure anything like that for any length of time. Unfortunately for us, our son is not a candidate for Panda's; truly having Tourette's. So, we are dealing with the card we have been given and moving right along. Good book. Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 Okay...here is another example of a parent reading the book, "doing the test" and deciding their child doesn't have PANDAS, no questions asked. (from Amazon reviews). SIGH again. this book was an extremely quick read for me; as I wanted to find out what happened to Sammy and how he was going to be treated. My son was recently diagnosed with Tourette's and someone suggested I read the book and look into Panda's as it couldn't hurt. I enjoyed the story and how the book was written; sorry that any family would have to endure anything like that for any length of time. Unfortunately for us, our son is not a candidate for Panda's; truly having Tourette's. So, we are dealing with the card we have been given and moving right along. Good book. I just looked as I had never gone to the reviews on the book. Someone knowledgeable should send that reviewer a note... it doesn't say she ruled it out based on the bloodtest though so who knows why they ruled it out. Maybe there are other reasons. Some of the reviews are just disturbing and clearly written by people who should not be allowed to review books Link to comment Share on other sites More sharing options...
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