peglem Posted October 30, 2009 Report Posted October 30, 2009 Makes total sense. Honestly, I'm just so darned grateful right now for the progress our son is making on the "Saving Sammy" dose of augmentin that I'm not very objective. And unfortunately, I think most docs can come up with other reasons to deny the PANDAS diagnosis. Our son had rising ASO titers after exacerbations... and an abnormal PET scan... and the Cunningham CAM K result... and they still wouldn't accept the diagnosis. I guess we keep sharing our stories with Beth Maloney and hope that she starts to appreciate the full scope of our kids' experiences? I see how tough a choice this can be.... My experience was that the reason my daughter was dismissed by doctors was precisely because she didn't have those glorious ASO/AntiDnase titers....so can you see where I would have trouble supporting this view of PANDAS? I agree, we need the publicity and exposure...but I really hate to reinforce the very notion that denied treatment for my daughter. That's where its so different here. I'm completely thrilled that that treatment is working for you, even though my experience is different. Its like we have learned that PANDAS is not just our child's version of it and we respect and support each other. I've no doubt that Beth Maloney's story will help many many people and I want that- just think there is room for all of us on that ship!
lss Posted October 30, 2009 Report Posted October 30, 2009 I will agree that Beth Maloney has brought the subject of Pandas to the forefront, however I disagree with her objective. Diana P. tried to reach out to her BEFORE her book came out, to try and include other information in her book, references, doctors, the fact that not everyone has high titers, Beth Maloney refused. Diana tried to reach out to her again after her book, and again she got nowhere with Beth Maloney. My concern is that alot of kids will be ruled out of a diagnosis of Pandas, based on her book. She may have agreed to be the spokesperson for the Panda Foundation,however she did not initiate it, she is not even on the board of this foundation (as of right now). Her push to get on Oprah seems to be for her benefit not necessarily to get the kids help. I agree that there are many "versions" of Pandas, we all have children with similar symptoms, and yet some symptoms are also different. OCD is only one sympom of Pandas, not the only one. Worried Dad, I am so happy that the higher dose of augmentin is working for you! Linda
faith Posted October 30, 2009 Report Posted October 30, 2009 Linda, that's interesting. do you know what reason she gave to Diana Pohlman, or did she not ever get to talk to her? Faith
EAMom Posted October 30, 2009 Report Posted October 30, 2009 She talked to Diana. I know for one thing she thought IVIG/PEX too dangerous. Not sure about why she was so stuck on the "titers will be high" concept though...
EAMom Posted October 30, 2009 Report Posted October 30, 2009 Okay...I know Beth deleted a bunch of our comments (Oct 22 FB post)...but try one more time. I did sneak one in about low titers and she seemed semi-responsive to it. (maybe she knows people are watching!) so you all with low titers can also add a quick "My pandas child also had low strep titers." in the comments to get the point across. He he he he. (Except for Pixiesmommy who is BLACKLISTED ) Maybe we can eventually wear her down. At least she won't be able to claim (anymore) "I've only recieved e-mails from 1-2 pandas parents where titers failed to confirm the presence of strep"
faith Posted October 30, 2009 Report Posted October 30, 2009 Just curious tho. Why do we have to convince her? she's not a doctor. she already wrote the book. I don't think her facebook page is a PANDAS site. Is she handing out advice? I'm guessing she can't give out info that she can't vouch for personally? Faith
peglem Posted October 30, 2009 Report Posted October 30, 2009 Part of the problem with getting information out is that the NIH Pandas information is out of date...if parents and doctors look there for "official" info- they're going to read stuff about abx prophylaxis not being safe and effective, treating tics and OCD symptomatically with psych meds, and unproven and risky use of PEX/IVIG. If a medical authority like this doesn't keep up, is it any wonder so many doctors are clueless? And while parents of children with different versions of PANDAS may be misled by the Sammy story- doctors, if they look, are going to favor the "official" info over Sammy's anecdotal story.
EAMom Posted October 30, 2009 Report Posted October 30, 2009 I agree that the NIMH webiste is a mega huge problem. (As is the wikipedia site...dh spent many many hours on that one with very little gain. sigh) But,at least if we can educate Beth, hopefully she'll stop spouting all that "ASO is a test for PANDAS" garbage...every little bit helps!
peglem Posted October 30, 2009 Report Posted October 30, 2009 I agree that the NIMH webiste is a mega huge problem. (As is the wikipedia site...dh spent many many hours on that one with very little gain. sigh) But,at least if we can educate Beth, hopefully she'll stop spouting all that "ASO is a test for PANDAS" garbage...every little bit helps! Yeah, you're right.
Megs_Mom Posted October 30, 2009 Report Posted October 30, 2009 Makes total sense. Honestly, I'm just so darned grateful right now for the progress our son is making on the "Saving Sammy" dose of augmentin that I'm not very objective. And unfortunately, I think most docs can come up with other reasons to deny the PANDAS diagnosis. Our son had rising ASO titers after exacerbations... and an abnormal PET scan... and the Cunningham CAM K result... and they still wouldn't accept the diagnosis. I guess we keep sharing our stories with Beth Maloney and hope that she starts to appreciate the full scope of our kids' experiences? I see how tough a choice this can be.... My experience was that the reason my daughter was dismissed by doctors was precisely because she didn't have those glorious ASO/AntiDnase titers....so can you see where I would have trouble supporting this view of PANDAS? I agree, we need the publicity and exposure...but I really hate to reinforce the very notion that denied treatment for my daughter. That's where its so different here. I'm completely thrilled that that treatment is working for you, even though my experience is different. Its like we have learned that PANDAS is not just our child's version of it and we respect and support each other. I've no doubt that Beth Maloney's story will help many many people and I want that- just think there is room for all of us on that ship! We lost a year due specifically to low titers and a develomental pediatrician telling me that our daughter was "definitely not PANDAS". Sadly, I listened to that part of the conversation. Due to Laura & Diana & a researcher at Yale, Dr. Williams. After speaking with lot of doctors and reading research here on this great site, I can now have an intelligent conversation about titers. But there is no way that the average mom at the start of her quest, can count on this. It should be one of many possible markers, combined with a clinical picture. We may never solve every challenge, but clearly this one is critically important to many many children.
Char Posted October 30, 2009 Report Posted October 30, 2009 Hi, Just wanted to add that my son had low titers too. A few doctors told me, that since my son had low titers, he did not have Pandas. WOW, I wish I could tell those doctors now, You are wrong!! But I guess now, I am just focused on getting my son better. Maybe in the future I will have to inform those doctors
EAMom Posted October 31, 2009 Report Posted October 31, 2009 REally, what would help immensely, is if NIMH revised their website and just CLEARLY stated that PANDAS kids can have low strep titers...the whole website is messed up (like not recommending prophylactic abs, saying pandas should be treated like any other case of OCD, etc). BUT, even if they don't want to address the "contraversy" of antibiotics/IVIG...the very least they can do is clarify that ASO/anti-dnase b are not the anti-bodies that is the source of the auto-immune reaction in pandas AND that kids with PANDAS (or strep) can have low titers. I'm actually starting to get really irritated with NIMH/Swedo b/c they have left PANDAS kids in a high and dry, misleading the public as to how this disease needs to be treated.
thereishope Posted October 31, 2009 Author Report Posted October 31, 2009 My frustrationg is mounting. I visited her fan pages agian this morning and realized more has been deleted. I posted pandas network and lattitudes on her Beth Alison fan page under discussions. Both are gone. Only her "dr list" discussion remains. As for the Saving Sammy fan page, PANDAS network link remains, but the lattitudes link is gone. I have emailed her asking for an acceptable wording for me to repost. I explained how the foundation she endorses acknoweldges PANDAS Network and I don't see why it can't be listed. Also, I went ahead and contacted PANDAS Foundationand requested my son's photos be deleted from all emails. I did this a few days ago out of instinct. Now it is posted on the fan pages that the foundation wants pics for their website. This was after I asked them to delete mine. I do not know if the pics anyone sent for the Oprah basket, which I believe are now in posession of the foudnation, are automatically going to be put on the website or if they need each parnet to consent that. Someone need sto email them and ask. Like I said, I cannot since I have already cut ties with them.
thereishope Posted October 31, 2009 Author Report Posted October 31, 2009 Had my lightbulb moment. She doesn't want lattiudes on because of some questioning her and/or the foundation to which she is now associated with. On the Beth Alison Maloney fan page, pandas network and lattitudes was listed different than on the Saving sammy page. She had no choice but to delete both in order to get lattitudes off. It makes sense now. Ms Maloney, if you're reading this, I just answered my own question. No need to email me back. My frustrationg is mounting. I visited her fan pages agian this morning and realized more has been deleted. I posted pandas network and lattitudes on her Beth Alison fan page under discussions. Both are gone. Only her "dr list" discussion remains. As for the Saving Sammy fan page, PANDAS network link remains, but the lattitudes link is gone. I have emailed her asking for an acceptable wording for me to repost. I explained how the foundation she endorses acknoweldges PANDAS Network and I don't see why it can't be listed. Also, I went ahead and contacted PANDAS Foundationand requested my son's photos be deleted from all emails. I did this a few days ago out of instinct. Now it is posted on the fan pages that the foundation wants pics for their website. This was after I asked them to delete mine. I do not know if the pics anyone sent for the Oprah basket, which I believe are now in posession of the foudnation, are automatically going to be put on the website or if they need each parnet to consent that. Someone need sto email them and ask. Like I said, I cannot since I have already cut ties with them.
colleenrn Posted October 31, 2009 Report Posted October 31, 2009 EaMom, I am also extremely frustrated with Dr. Swedo and the NIMH web site. I posted this before, but back in Feb. Dr. Swedo told me they were "in the process of updating" the web site and made it sound like it was to be done soon. Nine months later is still isn't. I cannot even imagine the number of physicians and parents, searching for answers, who read the info on that website. It tells them No antibiotics, need to have high titers. Now we have Beth Maloney as the PANDAS "spokesperson" telling the world that you need high titers. This misinformation has got to stop and stop immediately. I have just had it with fighting this fight. It's great that Beth wrote this book, but it stinks that she is making things worse, and I do believe it will make things worse if she continues to maintain this BALONEY about titers. Colleen
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now