EAMom Posted September 30, 2009 Report Share Posted September 30, 2009 http://www.comcast.net/video/catching-ocd/...fanNews/newest/ This one is different from the Today Show interview. Link to comment Share on other sites More sharing options...
peglem Posted September 30, 2009 Report Share Posted September 30, 2009 Wow, she was way more informative than that doctor on the Today Show! What a great interview! Link to comment Share on other sites More sharing options...
EAMom Posted September 30, 2009 Author Report Share Posted September 30, 2009 She doesn't exactly have a warm fuzzy persona...but in a way that is good. She was very no-nonsense and matter of fact. She certainly didn't come across as a "desperate internet parent" which is also good. I liked how she explained how Sammy's OCD/tourettes diagnosis never made sense (sudden onset, no family history, no response to a year of treatment ). Too bad she is so fixated on ASO/anti-dnase b as a "test for PANDAS" (I think she had that on her website, that ASO was the test for pandas, at one point, it's not there anymore) .... it would have been interesting if she had actually done a throat culture on Sammy when with the first ASO. I bet it would have been positive. But, overall, I would say she did a great job...she is getting the msg out there and that is a big step. Link to comment Share on other sites More sharing options...
ShaesMom Posted September 30, 2009 Report Share Posted September 30, 2009 http://www.comcast.net/video/catching-ocd/...fanNews/newest/ This one is different from the Today Show interview. I liked this interview more than I did the one on NBC. In both interviews she did mention that he has a return of the OCD symptoms when he gets a new strep infection but they are easily managed with abx. I find that a little scary. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted September 30, 2009 Report Share Posted September 30, 2009 Maybe he has a return because he never dealt with his underlying autoimmune issues? He never had IVIG or PEX? I am just thinking aloud. Perhaps, when we raise our children's pneumo titers, then they will be able to fight a strep infection more appropriately? elizabeth Link to comment Share on other sites More sharing options...
smartyjones Posted September 30, 2009 Report Share Posted September 30, 2009 Thanks for sharing that! I love the announcers, "due to Beth's unwillingness to accept the doctor's prognosis" and when talking with her "you refused to accept the diagnosis of OCD". Here's to us all on that!! Shae's mom - what do you mean - you find what scary? Link to comment Share on other sites More sharing options...
ShaesMom Posted September 30, 2009 Report Share Posted September 30, 2009 Maybe he has a return because he never dealt with his underlying autoimmune issues? He never had IVIG or PEX? I am just thinking aloud. Perhaps, when we raise our children's pneumo titers, then they will be able to fight a strep infection more appropriately? elizabeth Oh Elizabeth I just the love way you think!! SmartyJones-I find it scary that at the age of 19 he is still having tics and OCD everytime he gets a strep infection. To me that says that the Pandas has never really been cured--just managed. It makes me wonder if it is just a time bomb waiting to explode again with the "right" infection. I want my daughter to be cured--I don't want her to have to worry about managing Pandas when she is an adult. Link to comment Share on other sites More sharing options...
peglem Posted September 30, 2009 Report Share Posted September 30, 2009 Maybe he has a return because he never dealt with his underlying autoimmune issues? He never had IVIG or PEX? I am just thinking aloud. Perhaps, when we raise our children's pneumo titers, then they will be able to fight a strep infection more appropriately? elizabeth Oh Elizabeth I just the love way you think!! SmartyJones-I find it scary that at the age of 19 he is still having tics and OCD everytime he gets a strep infection. To me that says that the Pandas has never really been cured--just managed. It makes me wonder if it is just a time bomb waiting to explode again with the "right" infection. I want my daughter to be cured--I don't want her to have to worry about managing Pandas when she is an adult. At this point, I'd be willing to settle for managed...cure would be great, but managed would be an improvement. Link to comment Share on other sites More sharing options...
thereishope Posted September 30, 2009 Report Share Posted September 30, 2009 I wonder how his lifestyle has changed since the diagnosis of PANDAS. What supplements/vitamins does he take? Have they tried to rid themselves of enviornmental factors that may have helped aid in the surfacing of PANDAS in the first place? I'm sure we all have questions that we would like answered. Perhaps someone can compile questions and email her via her website. She does respond to those emails. Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 30, 2009 Report Share Posted September 30, 2009 Maybe he has a return because he never dealt with his underlying autoimmune issues? He never had IVIG or PEX? I am just thinking aloud. Perhaps, when we raise our children's pneumo titers, then they will be able to fight a strep infection more appropriately? elizabeth Oh Elizabeth I just the love way you think!! SmartyJones-I find it scary that at the age of 19 he is still having tics and OCD everytime he gets a strep infection. To me that says that the Pandas has never really been cured--just managed. It makes me wonder if it is just a time bomb waiting to explode again with the "right" infection. I want my daughter to be cured--I don't want her to have to worry about managing Pandas when she is an adult. So in my opinion, there is way too much unknown about PANDAS. For many reasons, we do ERP therapy with dd8 as well as anti-biotics and continuing to explore immunilogical issues, etc. We want to be sure that we have given her the tools to deal with the OCD, should it ever return for any reason, at any age. It is frightening to imagine her dealing with this alone in college, or at an older age - but the ERP tools do make me more confident that she (and we) can handle a relapse well enough to get her the medical help that she'll need. The scary thing about the disease to me, it that it makes it harder for her to reach out, right when she would need to. Link to comment Share on other sites More sharing options...
EAMom Posted September 30, 2009 Author Report Share Posted September 30, 2009 http://www.comcast.net/video/catching-ocd/...fanNews/newest/ This one is different from the Today Show interview. I liked this interview more than I did the one on NBC. In both interviews she did mention that he has a return of the OCD symptoms when he gets a new strep infection but they are easily managed with abx. I find that a little scary. Beth is lucky that Sammy is able to recognize his symptoms and has the maturity to know to self -treat. My dd certainly doesn't have that ability at age 9...don't know what she will be like in 9 years. A big part of her pandas (early symptoms) were irritibility, defiance, and irrational behavior...so if she were starting to get irrational and defiant (and she were away at college), I don't think that she would know to start treating herself. Link to comment Share on other sites More sharing options...
ShaesMom Posted September 30, 2009 Report Share Posted September 30, 2009 http://www.comcast.net/video/catching-ocd/...fanNews/newest/ This one is different from the Today Show interview. I liked this interview more than I did the one on NBC. In both interviews she did mention that he has a return of the OCD symptoms when he gets a new strep infection but they are easily managed with abx. I find that a little scary. Beth is lucky that Sammy is able to recognize his symptoms and has the maturity to know to self -treat. My dd certainly doesn't have that ability at age 9...don't know what she will be like in 9 years. A big part of her pandas (early symptoms) were irritibility, defiance, and irrational behavior...so if she were starting to get irrational and defiant (and she were away at college), I don't think that she would know to start treating herself. Yah-you said it better than I did. My dd symptoms manifest similar to your dd's. My concern is would she recognize those symptoms or have someone close enough to her who could recognize them so she could get help if I'm not around. Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 30, 2009 Report Share Posted September 30, 2009 http://www.comcast.net/video/catching-ocd/...fanNews/newest/ This one is different from the Today Show interview. I liked this interview more than I did the one on NBC. In both interviews she did mention that he has a return of the OCD symptoms when he gets a new strep infection but they are easily managed with abx. I find that a little scary. Beth is lucky that Sammy is able to recognize his symptoms and has the maturity to know to self -treat. My dd certainly doesn't have that ability at age 9...don't know what she will be like in 9 years. A big part of her pandas (early symptoms) were irritibility, defiance, and irrational behavior...so if she were starting to get irrational and defiant (and she were away at college), I don't think that she would know to start treating herself. Yah-you said it better than I did. My dd symptoms manifest similar to your dd's. My concern is would she recognize those symptoms or have someone close enough to her who could recognize them so she could get help if I'm not around. Our daughter was able to start doing ERP therapy at age 3. She did it again at age 7 and now at 8. It is difficult, and it take a lot of practice. I am not irrational about this it is not easy! But it's just like learning the piano. When they start, it seems ridiculous that they are even trying. Their hands are too small, they slam down the keys, everything is wrong. But after 10 years of practice.... I know that all of us want a cure for PANDAS. And many of us may get that. But in the meantime, we have just personally found that therapy to help cope with OCD (if your child does not have OCD, this post is not for you) and to slowly get control back - is really helpful. All kids with OCD are irritable, defiant, and irrational, whether from genetic OCD or PANDAS or Trauma. It's the nature of the very nasty beast that is OCD. So our hope, like any skill, is to teach her enough while I am here; to practice everyday; so that when I am not, she will have skills. I hope it works - but in the meantime, it makes our days much easier by having tools that we can all use in our family. They are great life skills! Link to comment Share on other sites More sharing options...
fuelforall Posted October 1, 2009 Report Share Posted October 1, 2009 I guess I'm being nosy but the book really begged the question, where was her ex husband in all this? Doesn't Dad count? I know he lived across the country but shouldn't he have had input? As a dad, it haunted me throughout - I just felt her intense hatred for her ex husband and I really wonder how it affected the boys, particularly Sammy. Nothing to do with PANDAS of course. Link to comment Share on other sites More sharing options...
EAMom Posted October 1, 2009 Author Report Share Posted October 1, 2009 Her husband is mentioned in the book a few times. At one point she says her ex-husband thought Sammy's symptoms were caused by "overprotective mothering" (or something to that effect). At another point he visits and buys Sammy a laptop (this might have been after he already started antibiotics). When he shows up at Sammy's bar mitzvah he seemed to be proud of Sammy's accomplishments (lots of his side of the family is there). But, yeah, it does leave you wondering about her ex? But, for all we know he might have been a total loser who dumped her for a new trophy wife and set of kids! I'd be bitter too. It certainly doesn't sound like he made a point of visiting his 3 kids on a regular basis. She might have also not mentioned him much for legal reasons (or b/c of her kids)...sometimes if you don't have something good to say about somebody, it's better not to say anything! Link to comment Share on other sites More sharing options...
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