ajcire Posted January 20, 2010 Report Share Posted January 20, 2010 My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people... What would you pick to give? I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more.... Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted January 20, 2010 Report Share Posted January 20, 2010 My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people... What would you pick to give? I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more.... I have some similar "skeptics" in my fold, and I put together small binders for each of them. Knowing their sensitivity (okay, let's call a spade a spade: "snobbery") about the quality of scholarly research, I searched the forum here and downloaded copies of the more technical, medical journal articles and research provided by the likes of Suzan, Buster, Vickie and others. The "mouse study paper" was front and center, followed by some of the other available info I found here. I haven't gotten any feedback from either of the doctors since I left that package in their hands (one is the pediatrician, the other is a psychiatrist), but I made a point of opening a few of the articles up myself for the psychiatrist while I was in his office with him because he is a self-admitted snobby skeptic! Actually, I asked my son to leave the psychiatrist's office for a few minutes ("go get a drink of water") while I arm-twisted the doctor to at least open his mind up a bit more about PANDAS in general. He is a tough nut to crack, however. When my son came back in the room, he grinned and asked, "So, did you guys work all that out?!" To which I replied that I was still working on it but it was okay anyway because Dr. B. only had my son's best interests at heart anyway, and so long as he didn't get in my way, I thought we could work around our differences. I added that, "Besides, Dr. B. knows that if he tries to fight me, I will just find another doctor for you!" Which I will, and you can, too! That's always an option, and they should be aware of that! Link to comment Share on other sites More sharing options...
thereishope Posted January 20, 2010 Report Share Posted January 20, 2010 What's the copyright date on the pamphlet? Link to comment Share on other sites More sharing options...
GatsMom Posted January 20, 2010 Report Share Posted January 20, 2010 My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people... What would you pick to give? I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more.... I have some similar "skeptics" in my fold, and I put together small binders for each of them. Knowing their sensitivity (okay, let's call a spade a spade: "snobbery") about the quality of scholarly research, I searched the forum here and downloaded copies of the more technical, medical journal articles and research provided by the likes of Suzan, Buster, Vickie and others. The "mouse study paper" was front and center, followed by some of the other available info I found here. I haven't gotten any feedback from either of the doctors since I left that package in their hands (one is the pediatrician, the other is a psychiatrist), but I made a point of opening a few of the articles up myself for the psychiatrist while I was in his office with him because he is a self-admitted snobby skeptic! Actually, I asked my son to leave the psychiatrist's office for a few minutes ("go get a drink of water") while I arm-twisted the doctor to at least open his mind up a bit more about PANDAS in general. He is a tough nut to crack, however. When my son came back in the room, he grinned and asked, "So, did you guys work all that out?!" To which I replied that I was still working on it but it was okay anyway because Dr. B. only had my son's best interests at heart anyway, and so long as he didn't get in my way, I thought we could work around our differences. I added that, "Besides, Dr. B. knows that if he tries to fight me, I will just find another doctor for you!" Which I will, and you can, too! That's always an option, and they should be aware of that! That little binder of yours would be exceedingly helpful for me right now. I'm sure I'm familiar with some of the work but I have not read the mouse study that I hear about. Could you please give me the titles/authors/journal info on as many of those articles as possible if you have time? Many thanks, Gat's mom. Link to comment Share on other sites More sharing options...
thereishope Posted January 20, 2010 Report Share Posted January 20, 2010 Here's the link to that thread that I think Mom is referring to. http://www.latitudes.org/forums/index.php?...ic=6506&hl= I would also include that article in which the failure rate of amox and pen is cited... http://www.entrepreneur.com/tradejournals/.../169459644.html Link to comment Share on other sites More sharing options...
ajcire Posted January 20, 2010 Author Report Share Posted January 20, 2010 Vickie, surprisingly the date on it is June 2009. It was the first thing I checked. It says penicillian is not the best for it if I remember.... I should see if it mentioned amox because if so I should really tell the dr. to share it with his colleague who told me if amox didn't take care of it than it wasn't pandas. Link to comment Share on other sites More sharing options...
Buster Posted January 20, 2010 Report Share Posted January 20, 2010 I'd recommend the summary at http://www.latitudes.org/forums/index.php?showtopic=6265 and then include copies of some of the referenced papers. The best amongst them are: [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf [Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.com/cgi/content/abstract/21/9/727 [Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html [Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf [shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, "Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development", J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals.uchicago.edu/doi/pdf/10.1086/377700 That should tied him/her over. Buster My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people... What would you pick to give? I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more.... Link to comment Share on other sites More sharing options...
GatsMom Posted January 20, 2010 Report Share Posted January 20, 2010 I'd recommend the summary at http://www.latitudes.org/forums/index.php?showtopic=6265 and then include copies of some of the referenced papers. The best amongst them are: [Kirvan2006] Kirvan CA, Swedo SE, Kurahara D, Cunningham MW, "Streptococcal mimicry and antibody-mediated cell signaling in the pathogenesis of Sydenham's chorea". 2006 Autoimmunity 39 (1): 21–9. http://www.pandasnetwork.org/CunninghamJNICaMKinase.pdf [Pavone2006] Pavone P, Parano E, Rizzo R, Trifiletti RR (2006). "Autoimmune neuropsychiatric disorders associated with streptococcal infection: Sydenham chorea, PANDAS, and PANDAS variants". J Child Neurol 21 (9): 727-36. http://jcn.sagepub.com/cgi/content/abstract/21/9/727 [Yaddanapudi2009] K Yaddanapudi, M Hornig, R Serge, J De Miranda, A Baghban, G Villar, W I Lipkin Passive transfer of streptococcus-induced antibodies reproduces behavioral disturbances in a mouse model of pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection Molecular Psychiatry August 11, 2009 doi:10.1038/mp.2009.77 http://www.nature.com/mp/journal/vaop/ncur.../mp200977a.html [Moretti2008] Moretti G, Pasquini M, Mandarelli G, Tarsitani L, Biondi M (2008). "What every psychiatrist should know about PANDAS: a review". Clin Pract Epidemol Ment Health 4: 13. http://www.ncbi.nlm.nih.gov/pmc/articles/P...5-0179-4-13.pdf [shet2003]Shet A, Kaplan EL, Johnson DR, Cleary PP, "Immune response to group A streptococcal C5a peptidase in children: implications for vaccine development", J Infect Dis. 2003 Sep 15;188(6):809-17. http://www.journals.uchicago.edu/doi/pdf/10.1086/377700 That should tied him/her over. Buster My ped (who is not much into this pandas thing and definitely not a believer in prophylactic antibiotics) gave me a pamphlet he had on it from uptodate.com ..I am supposed to return it after I read it..... of course in it it says that they don't believe in prophylactic antibiotics for this... it also stresses titers a lot. I want to return it with some of my own stuff but it can't be anything that is a compilation from parents.. he already let me know what he thinks of online research and accuracy when I told him I have researched plenty myself... that some of it is certainly good but so much of it... So anyway I want just a few basic clear articles from respectable people... What would you pick to give? I plan on giving him a copy of the stuff Dr. Cunningham gave me with my ds's results because this is not the dr. I really see regarding my son but I can tell I intrigued him enough to get him to look for some info and want to see if I can interest him a bit more.... Thanks! So helpful! Gat's mom. Link to comment Share on other sites More sharing options...
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