monarchcat Posted October 26, 2009 Report Share Posted October 26, 2009 We have never had a positive strep or titer test. But I cannot find this post - I have her on my facebook page. Can you tell me what date? I've gone back through October. Thanks - It should be the current top thread on her page, but it appears that all the posts are gone, except for the first one from last Thursday. Link to comment Share on other sites More sharing options...
Megs_Mom Posted October 26, 2009 Report Share Posted October 26, 2009 We have never had a positive strep or titer test. But I cannot find this post - I have her on my facebook page. Can you tell me what date? I've gone back through October. Thanks - It should be the current top thread on her page, but it appears that all the posts are gone, except for the first one from last Thursday. This is what shows now - but no reference to titer levels, and no posts, so I am not sure where to put my comments. "We are not putting up with the nonsense about PANDAS any longer. Can you imagine the public uproar if a child had diabetes and you couldn't find treatment? Please send another tweet today" Link to comment Share on other sites More sharing options...
pixiesmommy Posted October 26, 2009 Report Share Posted October 26, 2009 Meg's Mom- it was THAT post (about diabetes.) Someone had posted a reply saying that their friend's son tested w/low ASO so they were moving on b/c he does not have PANDAS after all... yadda yadda... then there were about 20 or so replies saying, "Don't give up!!! Not every one has low titers!" Including my two, where I said there is NO diagnostic test yet for PANDAS and that my daughter has low ASO but was still diagnosed and received IVIG... and I went on to explain how this may be. She deleted ALL of the replies other than the one that was all, "Yay!" I just added another comment questioning why she may have done this. I figure she'll probably delete that one too, but maybe I'll get a response. I can't wrap my head around her not wanting to help by getting accurate information out. Link to comment Share on other sites More sharing options...
dcmom Posted October 26, 2009 Report Share Posted October 26, 2009 I emailed Beth my daughter's story. She is textbook pandas onset. We had a positive throat culture (that was a gift!), but her titers were totally normal when they were tested! I would and do advise anyone who suspects pandas to not have titers done- it can only act as ammo for a disagreeing doc if they are negative. A very knowledgeable psychiatrist (who worked with Swedo) told me, at the beginning of our journey, not to bother with titers or catscans or mris. Link to comment Share on other sites More sharing options...
thereishope Posted October 26, 2009 Report Share Posted October 26, 2009 Did anyone message that mom and tell her that her child still may have PANDAS? Link to comment Share on other sites More sharing options...
monarchcat Posted October 26, 2009 Report Share Posted October 26, 2009 Did anyone message that mom and tell her that her child still may have PANDAS? I couldn't remember the original person who commented about low titers (I only "became a fan" after the discussion here yesterday so there were already many replies), but later in the thread there was a mom who said that they had pretty much discounted PANDAS due to low titers, and I *think* I remembered her name so I sent her a message on FB. Not sure if I got the right name, though. I haven't heard back from her. Link to comment Share on other sites More sharing options...
EAMom Posted October 26, 2009 Author Report Share Posted October 26, 2009 Did anyone message that mom and tell her that her child still may have PANDAS? I did message the first person...it was a grandma (Kay). She was going to forward the msg to her daughter. In the msg. I included a link to Buster's info. on titers and also said they were welcome to post here as well. I didn't get to msg the second person who asked about low titers. I looked through the fan list...I think it was Marikaye. I will go ahead and send her a msg. I can see in the future...if we want to try to help out the parents, we might be better off being careful with our wording, and sending them messages instead of just relying on the comments. I suspect that Beth deleted our comments on purpose...and it was not a FB glitch. I'm not really sure what the best way to approach this situation is. Certainly we can help out individuals that post by sending them messages...but that doesn't really address the larger problem that Beth is a public figure that is propagating mis-information about PANDAS and actually might end up doing more harm than good. I have been thinking about writing a book review on Amazon (I'm pretty sure she can't delete that), explaining that she doesn't quite have all her facts right...so that might be a start. I understand that Beth is very against IVIG and plasmapheresis (feels that they are too dangerous), in addition to being a big proponent of ASO as a "test" for PANDAS. In her book she also discounts testing for anti-neural antibodies (isn't this what Dr. Cunningham is doing?). Link to comment Share on other sites More sharing options...
monarchcat Posted October 26, 2009 Report Share Posted October 26, 2009 Mayikaye was the person I messaged and I just heard back from her, so I did get the right person! I had given her the link here and she said she'll come over. Oddly, at the time I couldn't find her in the fan list. I probably just missed it. Did anyone message that mom and tell her that her child still may have PANDAS? I did message the first person...it was a grandma (Kay). She was going to forward the msg to her daughter. In the msg. I included a link to Buster's info. on titers and also said they were welcome to post here as well. I didn't get to msg the second person who asked about low titers. I looked through the fan list...I think it was Marikaye. I will go ahead and send her a msg. I can see in the future...if we want to try to help out the parents, we might be better off being careful with our wording, and sending them messages instead of just relying on the comments. I suspect that Beth deleted our comments on purpose...and it was not a FB glitch. I'm not really sure what the best way to approach this situation is. Certainly we can help out individuals that post by sending them messages...but that doesn't really address the larger problem that Beth is a public figure that is propagating mis-information about PANDAS and actually might end up doing more harm than good. I have been thinking about writing a book review on Amazon (I'm pretty sure she can't delete that), explaining that she doesn't quite have all her facts right...so that might be a start. I understand that Beth is very against IVIG and plasmapheresis (feels that they are too dangerous), in addition to being a big proponent of ASO as a "test" for PANDAS. In her book she also discounts testing for anti-neural antibodies (isn't this what Dr. Cunningham is doing?). Link to comment Share on other sites More sharing options...
pixiesmommy Posted October 26, 2009 Report Share Posted October 26, 2009 Good idea about the messaging. I'm just surprised that she would not want the correct info out there- even if it conflicts with what was helpful for HER son, specifically. If she REALLY wants to help, she will listen. Isn't that what her book promoted? For others to listen, even if what we as parents say seems impossible? Ugh. A book review is also a great idea. I have not left any yet. It would be good to let people know that ASO is NOT a definitive test. I would hate to see someone walk away from a potential diagnosis and help based on just ASO titers not being indicative of PANDAS. Link to comment Share on other sites More sharing options...
Megs_Mom Posted October 26, 2009 Report Share Posted October 26, 2009 I'm on FB all the time, and I very very rarely find anything vanishes. Sometimes it might go away for an update, but when I refresh, it is back. I'd be surprised if these comments were not all deleted. That is so sad! I'm so thrilled all of you were proactive in reaching out to the people that were misled! Link to comment Share on other sites More sharing options...
dcmom Posted October 26, 2009 Report Share Posted October 26, 2009 I am not sure Beth is against pex/ivig. I know when she was going through pandas with her son- she looked into it and no one in the country was doing it. She was told it was too dangerous. She connected me with a mom who is interested in pex- to send her info.... Link to comment Share on other sites More sharing options...
thereishope Posted October 26, 2009 Report Share Posted October 26, 2009 Well, I guess it's time to start tweeting that Oprah producer again. But have the context be little different. Either include a link to here that includes different parent stories that they can read for themself or tweet her about pandas network. Hopefully, IF it gets it way to actually being on Oprah, we can have a hand in trying our best to make sure PANDAS is correctly and fairly explained. Link to comment Share on other sites More sharing options...
ajcire Posted October 26, 2009 Report Share Posted October 26, 2009 I hope that she doesn't lose sight over the real purpose of this and not just get caught up in her book sales now. I could not even begin to describe how happy I would be to see this all on Oprah but I would be even happier if someone's story also represented those who presented mild pandas and what mild pandas might look like in children. Mild might be the wrong word.. maybe my son isn't mild.. just that I am lucky his symptoms don't disrupt his daily life the way some children's symptoms do. Well, I guess it's time to start tweeting that Oprah producer again. But have the context be little different. Either include a link to here that includes different parent stories that they can read for themself or tweet her about pandas network. Hopefully, IF it gets it way to actually being on Oprah, we can have a hand in trying our best to make sure PANDAS is correctly and fairly explained. Link to comment Share on other sites More sharing options...
ajcire Posted October 27, 2009 Report Share Posted October 27, 2009 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! Link to comment Share on other sites More sharing options...
EAMom Posted October 27, 2009 Author Report Share Posted October 27, 2009 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...
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