MIAS_MOM Posted May 15, 2011 Report Share Posted May 15, 2011 My dd 10 had the worst "flare up" ever from pandas. Unfortunatly we are still waiting for june 30 to go to all childrens in fl for real pandas help. No one here knows a thing and has no desire to learn, only stating we got to get her agression situated before we can move on to deal with pandas, I know, I know, its NUTS ! I've tried telling them all, I'm just not being heard. We go tomorrow for session with social worker. I've given the nurses info on pandas, bUt being the weekend, no one else is there and so I'm still not being heard. I need a few of the BEST web site info that maybe has helped some of you out in a serious situation that clearly states how to deal with pandas. I'm heartbroken beyond words. Please help me with good info that will catch their attention. Thankyou Link to comment Share on other sites More sharing options...
thereishope Posted May 15, 2011 Report Share Posted May 15, 2011 (edited) Here's a few to start you on. What other symptoms is she having. Perhaps a "symptom specific" study or article would help.Is she on abx? if so,which ones? what other meds is she on? What every psychiatrist should know about PANDAS: a review (2008) http://www.cpementalhealth.com/content/4/1/13 PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 If you want a more recognized referral for a fact sheet, then the IOCDF one can be used, but it's not as complete http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf A Way Forward http://pandasnetwork.org/wp-content/uploads/2010/12/JrnlChildPharma-LeckmanKurlanMurphy1.pdf Good article explaining PANDAS in layman terms http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/ For those doubting PANDAS existence if you should encounter it... Antibodies to Strep Throat Bacteria Linked to Obsessive Compulsive Disorder http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice NIMH Director’s Post http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml?WT.mc_id=rss Tel Aviv Study,but this is just an article. It hasn't been published yet. http://www.aftau.org/site/News2?page=NewsArticle&id=13179 Edited May 15, 2011 by Vickie Link to comment Share on other sites More sharing options...
kimballot Posted May 15, 2011 Report Share Posted May 15, 2011 (edited) Mia's Mom - I am sorry to hear about your situation. I was in the same situation two months ago. I think one of the best articles is Tanya Murphy and colleagues recent review article found here http://www.partnerstx.org/Resources/TS/ImmunobiologyofTDandPANDAS.pdf Also, you might want to give them Tanya Murphy and Colleagues article about SSRIs and PANDAS (even though it is a little old now and is a small study) found here http://www.primarypsychiatry.com/aspx/articledetail.aspx?articleid=561 and also Eric Storch and colleagues article about CBT and PANDAS - only the abstract is available on line but here it is: http://www.ncbi.nlm.nih.gov/pubmed/17003662 (the hospital should be able to get the full text if they are interested). Also, if you are planning to do the intensive CBT in Florida with Storch and Murphy, you might want to give them this information about it: http://www.ocfoundation.org/uploadedFiles/Intensive_Treatment_Programs/Florida_Eric_Storch.pdf Best wishes!! Edited May 15, 2011 by kimballot Link to comment Share on other sites More sharing options...
Wilma Jenks Posted May 15, 2011 Report Share Posted May 15, 2011 I am not much help Mia, but I am so sad for what you are dealing with. I know how unbearable it is for you!!!! I am there 4 you. Link to comment Share on other sites More sharing options...
MIAS_MOM Posted May 16, 2011 Author Report Share Posted May 16, 2011 Here's a few to start you on. What other symptoms is she having. Perhaps a "symptom specific" study or article would help.Is she on abx? if so,which ones? what other meds is she on? What every psychiatrist should know about PANDAS: a review (2008) http://www.cpementalhealth.com/content/4/1/13 PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 If you want a more recognized referral for a fact sheet, then the IOCDF one can be used, but it's not as complete http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdf A Way Forward http://pandasnetwork.org/wp-content/uploads/2010/12/JrnlChildPharma-LeckmanKurlanMurphy1.pdf Good article explaining PANDAS in layman terms http://draylawilson.com/strep-infection-associated-with-adhd-and-autism/ For those doubting PANDAS existence if you should encounter it... Antibodies to Strep Throat Bacteria Linked to Obsessive Compulsive Disorder http://www.mailman.columbia.edu/news/antibodies-strep-throat-bacteria-linked-obsessive-compulsive-disorder-mice NIMH Director’s Post http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml?WT.mc_id=rss Tel Aviv Study,but this is just an article. It hasn't been published yet. http://www.aftau.org/site/News2?page=NewsArticle&id=13179 She is not on antibiotics, even though I've a ask for some while we were in the hospital before being transfered. Her only meds are the psychiatric ones, all though the new doc has stopped all of them cold turkey. ( she has 4 ) Taking the meds away is fine with me, but not all in one day. I'm really worried about her. She was so shakey tonight. Her symtoms are severe agression and destruction, harm to herself and others. she has this "rage" that is unbelievable and non stop. I did talk then into a rapid strep that was actually neg, and they drew titers as well but were not back before we were transfered. I believe we need emergent pex. There is proble not a dr in 100 miles around us that would do it. Link to comment Share on other sites More sharing options...
SarahJane Posted May 16, 2011 Report Share Posted May 16, 2011 I'm so sorry!!! I am very surprised they stopped all meds cold turkey. There should have been a taper. Now you're not going to know what is PANDAS & what is psychotropic withdrawal. I would, & you probably have, really question this. My fear would be that they're going to induce behaviors that will be misinterpreted...especially since they already misunderstand PANDAS. I'm not trying to alarm you any more than you already are, but I also don't want them to set you up. Any MD knows you don't stop psych meds all at once. (((((HUGS))))) Link to comment Share on other sites More sharing options...
KaraM Posted May 16, 2011 Report Share Posted May 16, 2011 (edited) She is not on antibiotics, even though I've a ask for some while we were in the hospital before being transfered. Her only meds are the psychiatric ones, all though the new doc has stopped all of them cold turkey. ( she has 4 ) Taking the meds away is fine with me, but not all in one day. I'm really worried about her. She was so shakey tonight. Her symtoms are severe agression and destruction, harm to herself and others. she has this "rage" that is unbelievable and non stop. I did talk then into a rapid strep that was actually neg, and they drew titers as well but were not back before we were transfered. I believe we need emergent pex. There is proble not a dr in 100 miles around us that would do it. Are they testing (or have you already) for anything else, like Myco Plasma (heard that really causes aggresive/violent rages), not to mention Lyme and other Tick Born illnesses. Just in case the strep blood tests come back negative, it is not reason to rule out PANDAS or PITAND. This whole MARCONs discussion on the Lyme board makes me wonder, too. MARCONS is an antiboitic resistant strain of staph (I think), alhtough in your dd's case, if she' not on abx, maybe this doesn't make sense right now. You are in my thoughts. Trust your gut and keep up the fight. Do you have a PANDAS doc already that can consult? Kara Edited May 16, 2011 by KaraM Link to comment Share on other sites More sharing options...
dcmom Posted May 16, 2011 Report Share Posted May 16, 2011 I am not sure where you are, but could you ask the docs to consult a pandas expert. Some docs with impressive credentials might be; Dr Swedo at NIH, Dr Leckman at Yale, Dr Josephine Elia at CHOP. Let us know if you need their contact info. Link to comment Share on other sites More sharing options...
matis_mom Posted May 16, 2011 Report Share Posted May 16, 2011 My dd 10 had the worst "flare up" ever from pandas. Unfortunatly we are still waiting for june 30 to go to all childrens in fl for real pandas help. No one here knows a thing and has no desire to learn, only stating we got to get her agression situated before we can move on to deal with pandas, I know, I know, its NUTS ! I've tried telling them all, I'm just not being heard. We go tomorrow for session with social worker. I've given the nurses info on pandas, bUt being the weekend, no one else is there and so I'm still not being heard. I need a few of the BEST web site info that maybe has helped some of you out in a serious situation that clearly states how to deal with pandas. I'm heartbroken beyond words. Please help me with good info that will catch their attention. Thankyou I just wanted to say I am so sorry for what your family is going through. We will keep you and your daughter in our prayers. I can't imagine your frustration. I am thinking maybe if they are not listening, it might be a good idea to get a "patient advocate"? Not that I've ever been there, but I've heard of this kind of situation before, and I think maybe if you walk in there with an advocate they'll understand you mean business. Link to comment Share on other sites More sharing options...
tpotter Posted May 16, 2011 Report Share Posted May 16, 2011 Call Dr. Leckman at Yale-New Haven. He specializes in Tourettes, BUT, he's the one who's doing the IVIG trial for PANDAS (he used to not believe, then realized that it does exist.) He's also a psychiatrist. I know someone else who had one of his team members consult with her son's doctor when he was in a psych hospital. I don't know his number off hand, but his name is James Leckman. Link to comment Share on other sites More sharing options...
Dedee Posted May 16, 2011 Report Share Posted May 16, 2011 I am so sorry no one will listen to you. The most frustrating thing, is the feeling of helplesness. I know you are fighting tooth & nail for your daughter. She is so lucky to have such a strong and determined Mother. Don't give up. Use those articles everyone gave you. Maybe now that the week-end is over you can get a doctor in there that is informed. Stay strong. I will pray for you and your family. Link to comment Share on other sites More sharing options...
MIAS_MOM Posted May 16, 2011 Author Report Share Posted May 16, 2011 She is not on antibiotics, even though I've a ask for some while we were in the hospital before being transfered. Her only meds are the psychiatric ones, all though the new doc has stopped all of them cold turkey. ( she has 4 ) Taking the meds away is fine with me, but not all in one day. I'm really worried about her. She was so shakey tonight. Her symtoms are severe agression and destruction, harm to herself and others. she has this "rage" that is unbelievable and non stop. I did talk then into a rapid strep that was actually neg, and they drew titers as well but were not back before we were transfered. I believe we need emergent pex. There is proble not a dr in 100 miles around us that would do it. Are they testing (or have you already) for anything else, like Myco Plasma (heard that really causes aggresive/violent rages), not to mention Lyme and other Tick Born illnesses. Just in case the strep blood tests come back negative, it is not reason to rule out PANDAS or PITAND. This whole MARCONs discussion on the Lyme board makes me wonder, too. MARCONS is an antiboitic resistant strain of staph (I think), alhtough in your dd's case, if she' not on abx, maybe this doesn't make sense right now. You are in my thoughts. Trust your gut and keep up the fight. Do you have a PANDAS doc already that can consult? Kara she has has 2 positive lymes test from peds office that the ped doesnt believe is true! i have mention over and over that we could even be looking at a chronic lyme, they did draw blood the next morning, havent been able to find out what for yet, but MAYBE they are looking into it. One of these web sites has lyme info as well, so i marked that one to copy and take with us. Other than that, no other testing except for strep. Link to comment Share on other sites More sharing options...
MIAS_MOM Posted May 16, 2011 Author Report Share Posted May 16, 2011 thank you all so much, my husband and i are going thru each one to pick out what we think will help the most. I love this support, again thanks from the bottom of my heart! Link to comment Share on other sites More sharing options...
MIAS_MOM Posted May 16, 2011 Author Report Share Posted May 16, 2011 I am so sorry no one will listen to you. The most frustrating thing, is the feeling of helplesness. I know you are fighting tooth & nail for your daughter. She is so lucky to have such a strong and determined Mother. Don't give up. Use those articles everyone gave you. Maybe now that the week-end is over you can get a doctor in there that is informed. Stay strong. I will pray for you and your family. thank you for your help and concern, I'm so glad i met you here. talk to you soon. Link to comment Share on other sites More sharing options...
EAMom Posted May 16, 2011 Report Share Posted May 16, 2011 (edited) Are there any LLM docs in TN? Maybe you could also post on the Lyme forum. At least, LLM don't seem to be too fearful of antibiotics and they sometimes seem to know about PANDAS (or more willing to learn). PS here are the TN docs from Beth Allison Maloney's FB list. I donn't if you've already seen that: TENNESSEE Elisa I. Benaim, M.D. Pediatric and Adolescent Medicine Pediatric East, Inc. 8025 Stage Hills Blvd. Bartlett, TN 38133 901-757-3535 Dean A. Klug, M.D. F.A.C.S. Mid-South Ear, Nose and Throat, P.C. 6286 Briarcrest Ave., Ste 300 Memphis, TN 38120 901-755-5300 1-800-742-1335 Jeffrey Jump, MD Center for Integrative Medicine 1100 East 3rd Street Suite G-100 Chattanooga, TN 37403 423.643.2246 Edited May 16, 2011 by EAMom Link to comment Share on other sites More sharing options...
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