pixiesdaddy Posted October 28, 2009 Report Posted October 28, 2009 I posted another reply to her new update this morning and it never showed up. Just tried again and same thing. I think she has either turned off comments somehow or has blocked me from replying.
EAMom Posted October 28, 2009 Author Report Posted October 28, 2009 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. No it doesn't say why PANDAS was ruled out...but what other reason can you think of? Honestly, if someone has Tourettes, how can you conclusively/quickly say (without a good antibiotic trial, steroid trial, Dr. Cunningham lab test etc.) that that person does not have PANDAS? You can't...just the was they said "our son is not a candidate for PANDAS" makes me think they just did an ASO.
EAMom Posted October 28, 2009 Author Report Posted October 28, 2009 Wow...blacklisted! You should try posting something like "Way to go Beth!" and see if that gets accepted.
ajcire Posted October 28, 2009 Report Posted October 28, 2009 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. No it doesn't say why PANDAS was ruled out...but what other reason can you think of? Honestly, if someone has Tourettes, how can you conclusively/quickly say (without a good antibiotic trial, steroid trial, Dr. Cunningham lab test etc.) that that person does not have PANDAS? You can't...just the was they said "our son is not a candidate for PANDAS" makes me think they just did an ASO. You are most likely right on that. I wish it was so easy really rule this out but it's just not
colleenrn Posted October 28, 2009 Report Posted October 28, 2009 OK. I think it is great that Beth wrote the book. I think it is great that she is getting PANDAS in the news. I think it is great that the PANDAS foundation is in the works. BUT, she cannot be the National spokesperson for PANDAS IF she continues to claim that high strep titers are necessary to diagnose PANDAS. I, and I know many, most of you, have spent years trying to teach people that "NO, you can and do have PANDAS with normal titers and I am not going to sit back and watch this misinformation get spread around the country and the world. I am sorry if this sounds mean or whatever. I am very grouchy after 4 weeks of two different flus with all of my kids (yes, we were unlucky enough to get swine flu and seasonal flu). I just feel that one of the biggest obstacles to getting diagnosed is that so many physicians MISdiagnose on the basis of normal titers. What is going to happen when the PANDAS spokesperson continues to spread the wrong titer info around? Colleen
thereishope Posted October 28, 2009 Report Posted October 28, 2009 Did you notice Beth is trying to make nice on her fan page? And pixiesmommy...your comment now appears.
ajcire Posted October 28, 2009 Report Posted October 28, 2009 Hopefully it's not just making nice. If she really starts to get that low titers mean nothing it could really affect how things turn. I think her response was good to it. I mean I don't know her true intentions or anything but crossing fingers....
EAMom Posted October 28, 2009 Author Report Posted October 28, 2009 I think if others want to repost their comments (perhaps keep it simple, something like "My child also has Pandas with low strep titers") ...I think she won't delete them. Hopefully if enough of us speak up the concept of low ASO with PANDAS will finally stick in her brain!
pixiesmommy Posted October 28, 2009 Report Posted October 28, 2009 I see the one where I questioned her, but any I have tried to post thereafter are not showing. She obviously has me blocked. Oh well.
thereishope Posted October 28, 2009 Report Posted October 28, 2009 If you write on her wall, that's a dif section. You have to click on "just fans". I saw you there. Is this the post you were looking for... "I just ask that you please not promote any sort of testing to rule out PANDAS. There is no diagnostic test at this time. I would hate to see families rule it out based on titers or blod tests of any sort, because as you know, then you are on the road to psychiatric meds and possible psychiatric hospitalizations. Thank you for your time." I see the one where I questioned her, but any I have tried to post thereafter are not showing. She obviously has me blocked. Oh well.
EAMom Posted October 28, 2009 Author Report Posted October 28, 2009 You could always create an account for pixiesdaddy (if he doesn't already have one) and sneak in that way.
pixiesmommy Posted October 28, 2009 Report Posted October 28, 2009 heh heh. wouldn't be the first time. i forgot to sign in and out here all the time and have posted several times as him lately. good thing i behave myself so as not to misrepresent him. lol
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