pathfinder Posted March 19, 2010 Report Posted March 19, 2010 I emailed Dr. K about my son and he emailed me back with his requirement of 3 blood tests(ASO titer, AntiDNase B Ab titer, and Mtcoplasma pneumonie lgG & lgM) even before I set up for phone consultation. I took my son to see our family doctor regarding these blood tests but he refused and told me to contact Mr. K directly. Where and how do I get these tests? My family doc never heard about PANDAS and he was very uncomfortable. Thank you
EAMom Posted March 19, 2010 Report Posted March 19, 2010 (edited) I emailed Dr. K about my son and he emailed me back with his requirement of 3 blood tests(ASO titer, AntiDNase B Ab titer, and Mtcoplasma pneumonie lgG & lgM) even before I set up for phone consultation. I took my son to see our family doctor regarding these blood tests but he refused and told me to contact Mr. K directly.Where and how do I get these tests? My family doc never heard about PANDAS and he was very uncomfortable. Thank you Hi pathfinder...where do you live? Maybe someone can rec. a local doc who is more PANDAS knowledgeable. It sounds like your doc doesn't know anything about PANDAS and (more importantly) isn't willing to learn. (I don't know your hx, so maybe this is already done?) BTW...I would also recommend getting current throat cultures on your son as well as family members. Both my PANDAS dd and her sister were throat culture positive when we first learned of PANDAS (no sore throats, no redness, docs assumed they would be neg), yet PANDAS dd's strep titers (ASO/antidnase b ) were low/normal. Insist on the 72 hour culture if the rapid is neg. Also, here are some helpful threads (by Buster) http://www.latitudes.org/forums/index.php?showtopic=3928 There is a flowchart, FAQ, info on titers, etc. The post by T. Mom has a list of helpful docs. Edited March 19, 2010 by EAMom
EAMom Posted March 19, 2010 Report Posted March 19, 2010 (edited) I see from another post you are in S. Cal. I think the most important thing is to find someone who is willing to learn and listen. This is the only S. Cal doc on our list: Nancy Mullan MD - Two parents that have PANDAS children from this and the TS forum, have been helped very successfully by this Dr. 2829 W. Burbank Blvd, Suite 202 Burbank, CA 91505 Telephone: (818) 954-9267 Fax: (818) 954-0620 http://www.nancymullanmd.com/index.html These docs are from Beth Maloney's FB list of docs...I don't know if anyone on this forum can vouch for them personally? (as parents here haven't had good experiences with everyone on her list). Thomas Lin, MD Irvine Kids` MD 4634 Barranca Parkway Irvine, CA 92604 Telephone: 949-681-0777 Fax: 949-654-7668 Email: autismmd@cox.net Website: www.irvinekidsmd.com Gerald Maguire UC Irvine Medical Center Bldg 3 - Rt88 Irvine, CA 92697 Phone: (714) 456-5770 Fax: (714) 456-8499 Email: gamaguir@uci.edu Jonathan Auth, MD Valencia Pediatric Associates 27867 Smyth Drive #100 Valencia, CA 91355 (661) 294-2229 Office (661) 294-8399 Fax info@valpeds.com Center for Cognitive Behavioral Therapy Barbara Zebb, Ph.D. 27401 Los Altos, Suite 275 Mission Viejo, CA 92691 Phone: 949-226-9626 Toll free phone and fax: 877-230-5429 Website: www.drzebb.com The following three doctors all worked together and saved a child. Dr. Christina Friar, child psychiatrist 4851 Enfield Ave. Encino, CA 91316 (818) 708-2575 Dr. Kenneth Keer, pediatrician 5525 Etiwanda #212 Tarzana, CA 91356 (818) 91356 Dr. Joan Browner, clinical psychologist 17547 Ventura Blvd. Suite 310 Encino, CA 91316 (818) 995-0368 Edited March 19, 2010 by EAMom
thereishope Posted March 19, 2010 Report Posted March 19, 2010 I might understand a ped shakng his head back and forth and saying "You don't need those tests". But when a parent insists on them and it is just a blood test, I think the doctor should cooperate. Are you having a lot of issues with this doctor? It may be time to find a new one. Otherwise, I wonder if you can conatct Dr K, ask him to write a script for the bloodwork, go to Lab Corps and have results sent directly to him. I'd try a different local ped first, but not options are lost.
EAMom Posted March 19, 2010 Report Posted March 19, 2010 I emailed Dr. K about my son and he emailed me back with his requirement of 3 blood tests(ASO titer, AntiDNase B Ab titer, and Mtcoplasma pneumonie lgG & lgM) even before I set up for phone consultation. I took my son to see our family doctor regarding these blood tests but he refused and told me to contact Mr. K directly. I don't even get that...you did contact Dr. K and that is what he recommended. So if this doc can't even follow the recommendations of a PANDAS specialist then that isn't good! Is it legal for Dr. K. to write a script for bloodwork if it is out of state? Not sure how that works? Esp. if your son isn't technically his patient yet.
momto2pandas Posted March 20, 2010 Report Posted March 20, 2010 I mentioned it in a previous post, but both Dr. Greene in Highland and Dr. Mabudian in Redlands have written for all of the tests my kids have needed - and have done it a number of times. They both have several PANDAS patients. They don't treat it long term but both have gone through the diagnostic steps/bloodwork. PM me if you're interested and need contact info. I see from another post you are in S. Cal. I think the most important thing is to find someone who is willing to learn and listen. This is the only S. Cal doc on our list: Nancy Mullan MD - Two parents that have PANDAS children from this and the TS forum, have been helped very successfully by this Dr. 2829 W. Burbank Blvd, Suite 202 Burbank, CA 91505 Telephone: (818) 954-9267 Fax: (818) 954-0620 http://www.nancymullanmd.com/index.html These docs are from Beth Maloney's FB list of docs...I don't know if anyone on this forum can vouch for them personally? (as parents here haven't had good experiences with everyone on her list). Thomas Lin, MD Irvine Kids` MD 4634 Barranca Parkway Irvine, CA 92604 Telephone: 949-681-0777 Fax: 949-654-7668 Email: autismmd@cox.net Website: www.irvinekidsmd.com Gerald Maguire UC Irvine Medical Center Bldg 3 - Rt88 Irvine, CA 92697 Phone: (714) 456-5770 Fax: (714) 456-8499 Email: gamaguir@uci.edu Jonathan Auth, MD Valencia Pediatric Associates 27867 Smyth Drive #100 Valencia, CA 91355 (661) 294-2229 Office (661) 294-8399 Fax info@valpeds.com Center for Cognitive Behavioral Therapy Barbara Zebb, Ph.D. 27401 Los Altos, Suite 275 Mission Viejo, CA 92691 Phone: 949-226-9626 Toll free phone and fax: 877-230-5429 Website: www.drzebb.com The following three doctors all worked together and saved a child. Dr. Christina Friar, child psychiatrist 4851 Enfield Ave. Encino, CA 91316 (818) 708-2575 Dr. Kenneth Keer, pediatrician 5525 Etiwanda #212 Tarzana, CA 91356 (818) 91356 Dr. Joan Browner, clinical psychologist 17547 Ventura Blvd. Suite 310 Encino, CA 91316 (818) 995-0368
MichaelTampa Posted March 20, 2010 Report Posted March 20, 2010 Regarding the idea of getting Dr. K. to write the script ... I'm not sure that's going to work so well. I have him as my consultant, but he wants a local doctor doing the Rx, and I would also assume the lab scripts, though I never asked him because I already had a cooperating doctor. In the end, you're going to need a local doctor willing to cooperate, so you might as well start looking (or alternatively you could use Dr. K., but will be traveling to see him as frequently as deemed appropriate). So many of us here have to go hunting for doctors, it's a shame, but it is the reality. Michael
thereishope Posted March 20, 2010 Report Posted March 20, 2010 Just curious...is it different for Cunningham to write a script out for bloodwork over state lines because it's a study?
peglem Posted March 20, 2010 Report Posted March 20, 2010 Just curious...is it different for Cunningham to write a script out for bloodwork over state lines because it's a study? Dr. Cunningham does not write out scripts or even order blood work. She just sends the kit for the draw. Its up to the study participant to figure out how to get the blood drawn.
T_Mom Posted March 20, 2010 Report Posted March 20, 2010 Just curious...is it different for Cunningham to write a script out for bloodwork over state lines because it's a study? --don't want to hijack the thread, but re: the C. tests Vickie, we don't have a script per se, rather it is a study and as parents we request the lab draw the blood, and we send it off to be analyzed. There is no analysis by the local lab, so no need for a script. It has been drawn essentially as a favor. Pathfinder--You have gotten some good recommendations on this thread--We had to visit numerous doctors before we found someone willing to follow our d--I hope you find one from the suggestions that really is a help to you.
thereishope Posted March 20, 2010 Report Posted March 20, 2010 Oh. that makes sense. There is no analysis by the local lab, so no need for a script.
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