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Those with low strep titers (ASO/anti-dnase b )...


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Hi...

Faith, Peglem, Pixiesmommy, anyone else...

 

Beth Maloney (Saving Sammy) still appears to be "stuck" on the idea that strep titers (ASO/anti-dnase b ) is some kind of a diagonostic test for PANDAS. She says (on Facebook):

I've had only one or two other parents who've emailed that the blood tests did not confirm the presence of strep.

 

While I admire her overall mission of spreading the word about PANDAS, I have big concerns that she does not understand much of the science of PANDAS, and that she is propagating this myth about titers (which so many docs are already confused about)....and that will ultimately harm the 30-40% of kids with PANDAS that don't happen to have elevated titers.

 

So...what I'm asking for is that anybody with low strep titers/PANDAS please e-mail her to say that your child also had low titers that failed to confirm the presence of strep and that ASO/anti-dnase b is not a diagnostic "test" for PANDAS.

 

She also has a FB account http://www.facebook.com/pages/Beth-Alison-...96275037?ref=nf (under her post No parent of a child with diabetes feels alone; we aren't alone either. is where titers are mentioned). So, you could also post your msg. as a comment. That may almost be more effective since there will be several comments for all to see in one place, but does require a FB account.

 

Thank you!!! We need to ensure all PANDAS kids are appropriately diagnosed and treated, not just the ones with the high strep titers.

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I just read all that. She really is not addressing what anyone is saying about the low strep titers...althoughs she thanked everyone for the info..... I know she might feel like she can't confirm something she doesn't know first hand but it seems like she should know more than anyone not to rule out any ideas and not to trust doctors blindly on what they say. I know this sounds dumb but I can't comment because I haven't become a fan of her page because I really didn't want to have it on my facebook just yet because it is not something that I have talked about with many people other than a couple close friends and my immediate family which was more that they needed to know what was going on.

 

I hope that wasn't sounding like I was being negative toward her. She sounds like an amazing woman... of course so do many of you.

 

She is reminding me a bit of Jenny Mcarthy in her plight to get her autism info out their and how she helped her son. She of course had the advantage of fame before her plight though.

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I do not fall into that category, however I do know that she has another fan page for the book.

 

http://www.facebook.com/pages/Saving-Sammy...wall&ref=ts

 

She has not made the same comment on that one, but you could start a dicusssion on it.

 

However....

 

Something very interesting happened. When the book first came out, I started a discussion on that fan page that included a link for pandasnetwork. Then Michele added this forum. Well, when I went there today, they were deleted off the discussion board! I will check fb again later because they are having glitches lately, but if it is deleted, I have a major problem with that. It's like they are trying to keep info from people.

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I do not fall into that category, however I do know that she has another fan page for the book.

 

http://www.facebook.com/pages/Saving-Sammy...wall&ref=ts

 

She has not made the same comment on that one, but you could start a dicusssion on it.

 

However....

 

Something very interesting happened. When the book first came out, I started a discussion on that fan page that included a link for pandasnetwork. Then Michele added this forum. Well, when I went there today, they were deleted off the discussion board! I will check fb again later because they are having glitches lately, but if it is deleted, I have a major problem with that. It's like they are trying to keep info from people.

 

 

 

I do hope that is just a glitch!

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You can delete and hide a lot of things on fb. I make sure none of my group posts come up on my page or news feed. Even though I am open about PANDAS, there are many things that have happened in my home that I am not ready for everyone to know, esp w/o them fully understanding it. You can also start another account w/ another email under another name for privacy. If you want me to explain how to delete and hide on your wall, let me know.

 

I am viewing her as the opportunity to get PANDAS "out there". When I have tweeted Lisa E from Oprah about PANDAS, I make sure I add pandasnetwork in each tweet. Hopefully, if PANDAS does make it on a show like Oprah, they will do enough reserach to give a fair picture of the disorder.

 

 

I just read all that. She really is not addressing what anyone is saying about the low strep titers...althoughs she thanked everyone for the info..... I know she might feel like she can't confirm something she doesn't know first hand but it seems like she should know more than anyone not to rule out any ideas and not to trust doctors blindly on what they say. I know this sounds dumb but I can't comment because I haven't become a fan of her page because I really didn't want to have it on my facebook just yet because it is not something that I have talked about with many people other than a couple close friends and my immediate family which was more that they needed to know what was going on.

 

I hope that wasn't sounding like I was being negative toward her. She sounds like an amazing woman... of course so do many of you.

 

She is reminding me a bit of Jenny Mcarthy in her plight to get her autism info out their and how she helped her son. She of course had the advantage of fame before her plight though.

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I just read all that. She really is not addressing what anyone is saying about the low strep titers...althoughs she thanked everyone for the info..... I know she might feel like she can't confirm something she doesn't know first hand but it seems like she should know more than anyone not to rule out any ideas and not to trust doctors blindly on what they say.
Yeah...I noticed she's not really acknowledging those replies either. Interesting. At least with FB other possible PANDAS parents with low titers will see our responses.

 

I know this sounds dumb but I can't comment because I haven't become a fan of her page because I really didn't want to have it on my facebook just yet because it is not something that I have talked about with many people other than a couple close friends and my immediate family which was more that they needed to know what was going on.

 

Yes...Vickie is right, you can hide a lot on FB. You could also just send her an e-mail...so at least she can't say she's only heard from 1-2 parents with low titers!

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I just read all that. She really is not addressing what anyone is saying about the low strep titers...althoughs she thanked everyone for the info..... I know she might feel like she can't confirm something she doesn't know first hand but it seems like she should know more than anyone not to rule out any ideas and not to trust doctors blindly on what they say.
Yeah...I noticed she's not really acknowledging those replies either. Interesting. At least with FB other possible PANDAS parents with low titers will see our responses.

 

I know this sounds dumb but I can't comment because I haven't become a fan of her page because I really didn't want to have it on my facebook just yet because it is not something that I have talked about with many people other than a couple close friends and my immediate family which was more that they needed to know what was going on.
Yes...Vickie is right, you can hide a lot on FB. You could also just send her an e-mail...so at least she can't say she's only heard from 1-2 parents with low titers!

 

 

Well I sent her a comment on Facebook, as our son aso titers never show elevated, and while my post was there yesterday, it seems to be gone today, along with some others as well!

 

I guess she doesn't like us! Is she really trying to help others or her pocketbook?

 

Linda

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Well, facebook is updating/upgrading....again. There''s a lot of glitches and even on my wall and others I know, comments are coming and going. They are there one day and gone the other then they magically return. So don't send hate email yet.

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Thanks Vickie, maybe I will take a look at adding it and just not having it show. I would not have any big problems with having it show except that since my own husband is not on board with me on this yet, I know it would upset him. I think that because what I am dealing with is so mild (I am so grateful for that, don't get me wrong) it's just harder for him to get that there is a real problem.

 

Actually I was thinking I wish I even had used a different username here but I can't figure out a way to change it.

 

 

 

 

You can delete and hide a lot of things on fb. I make sure none of my group posts come up on my page or news feed. Even though I am open about PANDAS, there are many things that have happened in my home that I am not ready for everyone to know, esp w/o them fully understanding it. You can also start another account w/ another email under another name for privacy. If you want me to explain how to delete and hide on your wall, let me know.

 

I am viewing her as the opportunity to get PANDAS "out there". When I have tweeted Lisa E from Oprah about PANDAS, I make sure I add pandasnetwork in each tweet. Hopefully, if PANDAS does make it on a show like Oprah, they will do enough reserach to give a fair picture of the disorder.

 

 

I just read all that. She really is not addressing what anyone is saying about the low strep titers...althoughs she thanked everyone for the info..... I know she might feel like she can't confirm something she doesn't know first hand but it seems like she should know more than anyone not to rule out any ideas and not to trust doctors blindly on what they say. I know this sounds dumb but I can't comment because I haven't become a fan of her page because I really didn't want to have it on my facebook just yet because it is not something that I have talked about with many people other than a couple close friends and my immediate family which was more that they needed to know what was going on.

 

I hope that wasn't sounding like I was being negative toward her. She sounds like an amazing woman... of course so do many of you.

 

She is reminding me a bit of Jenny Mcarthy in her plight to get her autism info out their and how she helped her son. She of course had the advantage of fame before her plight though.

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