JJMom39 Posted May 11, 2011 Report Share Posted May 11, 2011 Any doctors in Arkansas? Or Tulsa region? The names and contact info below are from the Saving Sammy Facebook page list of dr's who are considered to be "PANDAS-friendly." And, the Helpful Threads section at the top of the forum has contact information for the handful of dr's who are considered to be the PANDAS experts. ARKANSAS Richard Livingston, MD 10310 Mayo Drive Barling, AR 72923 479 494-5700 Matthew Crouch, M.D. Psychology & Counseling Associates Center for Children and Adolescents #1 Sunbridge Drive Fayetteville, AR 72703 Phone: 479-442-KIDS Fax: 479-443-9554 David Jackson, M.D. http://www.mana.md/physician/djackson.html Northwest Arkansas Pediatric Clinic Urgent Care Center 3380 N. Futrall, Fayetteville (479) 442-7322 Wellness Center 3383 MANA Court, Ste 101, Fayetteville (479) 443-3471 Lowell Clinic 117 Dixieland, Lowell Link to comment Share on other sites More sharing options...
isaacsmom Posted June 1, 2011 Report Share Posted June 1, 2011 has anyone had any success finding PANDAS help in iowa? Where about in Iowa do you live? So few midwest posts. We live near Des Moines. A sharp young psychiatrist, Dr. Sasha Khosravi connected our son's "array of dots" and suspected PANDAS. He referred us on to a Dr Stephen Elliot at Blank Children's. After a year of Dr. Eliott's insistence that penicillin WILL WORK (it wasn't-not even Bicillin injections), we ended up in Chicago with Dr. K. I do know that Dr. Khosravi and Dr. K have visited at length not too long ago--I hope our son can "help" trx in Iowa. Let us know how the other two contacts work out. Dawn Hi Dawn, I know your post was years ago but I just found this forum and would love to talk to you further as my 8 1/2 y/o was diagnosed with PANDAS and his tics are getting more severe and I am looking for any help or guidance you have. We live in Dubuque, IA and we are just starting out on our PANDAS quest. Link to comment Share on other sites More sharing options...
T_Mom Posted July 10, 2011 Author Report Share Posted July 10, 2011 I am just bumping this post up to the forum with the hope that some may have a new doctor or two to add -- thanks. Link to comment Share on other sites More sharing options...
cynditk Posted July 12, 2011 Report Share Posted July 12, 2011 Does Dr.Keller in Seattle use long-term antibiotics ? Link to comment Share on other sites More sharing options...
sf_mom Posted August 31, 2011 Report Share Posted August 31, 2011 (edited) Accidental post Edited August 31, 2011 by SF Mom Link to comment Share on other sites More sharing options...
beeskneesmommy Posted August 31, 2011 Report Share Posted August 31, 2011 Dr. Dennis Bouboulis in Darien, CT, has helped a lot. He is very thorough in testing for co-infections, which is necessary for choosing the appropriate treatment. He offers IVig as well, in office. Dr. Elia at Childrens Hospital of Philadelphia, is a great place to start and if your kiddo is very sick she can administer PEX or IVig on Site. She can be quite conservative, however, which is why we moved on to Dr. B for more aggressive and comprehensive treatment. Dr. Elia did, however, help us immensely through our DS4's acute episode and got him moving forward last September. Link to comment Share on other sites More sharing options...
dut Posted August 31, 2011 Report Share Posted August 31, 2011 cyndylynntk -hi - we are with dr keller in redmond, near seattle for both our PANDAS kids. She has never prescribed long-term treatment doses for our kids, just short-term but did prescribe long-term prohylactic abx. In our experience, she is super willing to discuss treatment and try options that the parent proposes. She has also been willing to work with other PANDAS drs, in our case Dr B and Dr T and a local integrative dr. I love her... can you tell? She really gets it, the disorder, its impact on the child, main caregiver and family as a whole. I've found her to be very pragmatic and willing to think outside the box. Link to comment Share on other sites More sharing options...
T_Mom Posted September 7, 2011 Author Report Share Posted September 7, 2011 We have NOT seen this doctor but he is featured in this news clip on PANDAS, may be worth checking if you live in Pennsylvania-- http://pandasnetwork.org/2011/09/pandas-in-the-news-the-falcone-family/ Dr. Hal Gordon, Pennsylvania Link to comment Share on other sites More sharing options...
EAMom Posted September 13, 2011 Report Share Posted September 13, 2011 Dr. McGhee is now in Northern CA at LPCH (Stanford). Dr. McGhee is very nice, and a believer. He would be a good person to go to if you are thinking of IVIG. We got our last round of HD IVIG through him (we already had a long standing PANDAS diagnosis and had previously had IVIG with Dr. Lewis, another immunologist at LPCH). He is more interested in seeing PANDAS kids than Dr. Lewis is. I couldn't find him already posted, so posting this doc here: Los Angeles, CA Sean McGhee, MD Allergy & Immunology at UCLA Saw him yesterday to have a 3rd opinion from a very credible physician, and got confirmation of the diagnosis. He uses nothing but clinical history and presentation for diagnosis. Does not put much weight in any of the existing tests for strep markers or antibodies, nor the camK activation- purely history, symptoms, documentation of recurrent strep, pharyngitis, etc., which I brought along of course. He is a very likeable person, very up on current stuff coming out of NIMH! BTW, he is switching my son from azithromycin to penicillin vk as he thinks he should remain on prophylactically, seeing as he began to relapse after strep exposure at school. If he relapses again, he will do ivig. Link to comment Share on other sites More sharing options...
kimwillis Posted November 18, 2011 Report Share Posted November 18, 2011 Indianapolis, Indiana. Children's Resource Group. Helped with our diagnosis. Also Jennifer Horn New Castle , Indiana. Dr. Nathanial Justice pediatrician Link to comment Share on other sites More sharing options...
Tracie Posted November 20, 2011 Report Share Posted November 20, 2011 I need one in COLO A ped Doc would be nice and one who knows that my dd WILL need to be on long term abxs.. We have had IVIG twice already and doing great now.. but she or we need a doc that I can count on.. She has seen Tom Smith the first time and he was so much money that it was cheeper for us to fly and stay in Chicago to see a REAL PANDAS doc.. I have seen the list on the saving sammy web but I want to see if anyone has updated it.. Thanks, Tracie Link to comment Share on other sites More sharing options...
SC Panda Mom Posted February 6, 2012 Report Share Posted February 6, 2012 Dr. Robert Nahouraii, pediatric neurologist Charlotte, NC Diagnosed my daughter almost immediately - I had never heard of PANDAS. We are just getting started in our journey, so I can't offer info on long-term mgmt of her PANDAS. Link to comment Share on other sites More sharing options...
hootie Posted February 6, 2012 Report Share Posted February 6, 2012 Homeopathic remedies helped my kids with ridding my kids of their PANDAS symptoms... I just want to spread the word that something cheap can make a major difference. Antiboitic did nothing and we did not go the steroid or IVIG route. jpdmom 1 Link to comment Share on other sites More sharing options...
concerned lady Posted February 19, 2012 Report Share Posted February 19, 2012 Homeopathic remedies helped my kids with ridding my kids of their PANDAS symptoms... I just want to spread the word that something cheap can make a major difference. Antiboitic did nothing and we did not go the steroid or IVIG route. Which homeopathic remedies did you use, and what brand were they? Did they have lactose (milk sugar) or alcohol in them, or just water, or ? Carol Link to comment Share on other sites More sharing options...
missionmom Posted February 20, 2012 Report Share Posted February 20, 2012 Dr. McGhee is now in Northern CA at LPCH (Stanford). Dr. McGhee is very nice, and a believer. He would be a good person to go to if you are thinking of IVIG. We got our last round of HD IVIG through him (we already had a long standing PANDAS diagnosis and had previously had IVIG with Dr. Lewis, another immunologist at LPCH). He is more interested in seeing PANDAS kids than Dr. Lewis is. I couldn't find him already posted, so posting this doc here: Los Angeles, CA Sean McGhee, MD Allergy & Immunology at UCLA Saw him yesterday to have a 3rd opinion from a very credible physician, and got confirmation of the diagnosis. He uses nothing but clinical history and presentation for diagnosis. Does not put much weight in any of the existing tests for strep markers or antibodies, nor the camK activation- purely history, symptoms, documentation of recurrent strep, pharyngitis, etc., which I brought along of course. He is a very likeable person, very up on current stuff coming out of NIMH! BTW, he is switching my son from azithromycin to penicillin vk as he thinks he should remain on prophylactically, seeing as he began to relapse after strep exposure at school. If he relapses again, he will do ivig. Hi - very interested in this name - what does LPCH stand for? Am a member of PAMF ourselves. Link to comment Share on other sites More sharing options...
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