T_Mom Posted July 17, 2009 Report Share Posted July 17, 2009 (edited) There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum. Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning. Perhaps we can list the city/state, and name in the subject heading for ease of access. TMom Edited May 3, 2010 by T.Mom Link to comment Share on other sites More sharing options...
T_Mom Posted July 17, 2009 Author Report Share Posted July 17, 2009 Dr. Kovacevic in Chicago was very helpful. www.webpediatrics.com (phone consults are possible) Dr. Beth Latimer, neurologist in Maryland has been very helpful to us. Link to comment Share on other sites More sharing options...
dcmom Posted July 17, 2009 Report Share Posted July 17, 2009 Dr. Elizabeth Latimer, neurologist, in Maryland is compassionate, knowledgeable and helpful. Dr. Rosario Triffileti, pediatric neurologist, now in Middletown, NY (as of Fall '09) Dr. Susan Perlmutter in Northern Virginia is knowledgeable, very helpful in diagnosis, limited medical intervention available. Dr. Julie Lewis, The Ross Center for Anxiety, psychologist, very helpful in devising strategies to work with Julia. Helpful with the school as well. Link to comment Share on other sites More sharing options...
ShaesMom Posted July 18, 2009 Report Share Posted July 18, 2009 Dr. Stacy Houston, Doctors of Children, Lincoln, Nebraska Dr. Koybashi, Immunologist, Omaha, Nebraska Link to comment Share on other sites More sharing options...
mom md Posted July 18, 2009 Report Share Posted July 18, 2009 Charlotte, NC James, Lee, MD Piedmont Neuropsychiatry, (he is the one who diagnosed it) James Nelson, MD Neurologist Chapel Hill Eliana Perrin, MD Professor of Pediatricis Chapell Hill (did some of the origional work with Swedo) Link to comment Share on other sites More sharing options...
NancyD Posted July 19, 2009 Report Share Posted July 19, 2009 Dr. Kenneth Bock in Rhinebeck, NY (specializes in integrative medicine and also a DAN doctor) Dr. Robert Fuhlbrigge in Boston, MA (pediatric rheumatologist at Children's Hospital Boston) Dr. Raif Geha in Boston (pediatric immunologist at Children's Hospital Boston; specializes in immunodeficiency) There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum. Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning. Perhaps we can list the city/state in the subject heading for ease of access. TMom Link to comment Share on other sites More sharing options...
michele Posted July 20, 2009 Report Share Posted July 20, 2009 Dr. T Murphy now in Tampa Florida. I know I have seen her new number but not sure at the moment where. She is very good at diagnosing and sitting down and telling you what to expect. She is a ped psychiatrist and sees many PANDAS and TS cases and was on the Sweedo studies and does research in these areas. There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum. Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning. Perhaps we can list the city/state in the subject heading for ease of access. TMom Link to comment Share on other sites More sharing options...
P_Mom Posted July 20, 2009 Report Share Posted July 20, 2009 Michele, I know it wasn't this topic, but, I saw you mentioned you wanted to get IVIG done the day after you see Latimer. Did you let them know that? If not, I would...I don't think it can work that way...they need to schedule these things. We saw Latimer in June...she will most likely want to try steroids first. I don't know...just thought I would mention that....I woould hate to see you drive all that way hoping for IVIG and not getting it....I know how it is traveling all over the place. Take care. Kelly Link to comment Share on other sites More sharing options...
michele Posted July 20, 2009 Report Share Posted July 20, 2009 I found this great interview with Dr. Storch who is working with Dr. Murphy. He mentions her and PANDAS in the interview and how to get a hold of them. http://www.ocfoundation.org/UserFiles/File...August_2008.pdf Dr. T Murphy now in Tampa Florida. I know I have seen her new number but not sure at the moment where. She is very good at diagnosing and sitting down and telling you what to expect. She is a ped psychiatrist and sees many PANDAS and TS cases and was on the Sweedo studies and does research in these areas. There were so many great responses to a request earlier this week for doctors who have helped with PANDAS that I feel it may be helpful to start this topic in the forum. Please, if you have seen a doctor in your area who has been helpful, can you please post the state and name briefly, perhaps to provide a resource to parents along the way. I sure wish I had this at the beginning. Perhaps we can list the city/state in the subject heading for ease of access. TMom Link to comment Share on other sites More sharing options...
Lacy Posted July 21, 2009 Report Share Posted July 21, 2009 Richmond, Virginia Area (And these ones take insurance!!) Pediatrician, Dr. Julie Fortner http://www.richmondpediatriccenter.com/def...t=1&Child=1 [i may be a little premature at recommending Dr. Fortner, but read on:] We have an appointment with Dr. Fortner next week and I couldn't be more thrilled - I think we finally hit the jackpot on someone who will LISTEN! So far her staff (receptionist and nurse) have been extremely sympathetic, warm and friendly. And while it's not my business to give details, I think it's safe to tell you all that Dr. Fortner (from what her nurse was telling me) has first hand experience with dealing with PANDAS children. I am absolutely looking forward to next week! Pediatric Infectious Disease Specialist, Dr. William C. Koch http://www.vcuchildrens.org/?id=716&sid=4 Link to comment Share on other sites More sharing options...
colleenrn Posted July 21, 2009 Report Share Posted July 21, 2009 Lacy, I am so glad you found someone in Richmond that may be able to help you! Definitely let me know how it goes. I will cross my fingers for you!! Colleen Link to comment Share on other sites More sharing options...
kim Posted July 22, 2009 Report Share Posted July 22, 2009 Two parents that have PANDAS children from this and the TS forum, have been helped very successfully by this Dr. http://www.nancymullanmd.com/index.html Nancy Mullan MD 2829 W. Burbank Blvd, Suite 202 Burbank, CA 91505 Telephone: (818) 954-9267 Fax: (818) 954-0620 Link to comment Share on other sites More sharing options...
dcmom Posted July 24, 2009 Report Share Posted July 24, 2009 I was wondering if anyone had been to this doctor, she is a DAN doctor. See this link for some interesting information on pandas (confirming what many of you already know): http://drohara.com/information/documents/N...er-Fall2007.pdf Dr. Nancy O'Hara in Connecticut. Link to comment Share on other sites More sharing options...
Kayanne Posted July 24, 2009 Report Share Posted July 24, 2009 My Daughter was also helped tremendously by Dr. Latimer. I have heard second hand about the following doctor, he does do IVIG. He is in Philadelphia. Agustin Legido St. Christopher's Pediatric Associates Chief, Section of Child Neurology Professor of Pediatrics and Neurology Dept of Pediatrics Erie Avenue at Front Street 3rd Floor ACP, Suite 3314 Philadelphia, PA 19134 Tel: 215-427-5470 He also spends time in Reading: Only 1 day a month, they are booking into October now Reading Hospital Medical Center Deptartment 132 PO Box 16052 Reading, PA 19612-6052 610-988-9447 I'm also seeing a ped. rhematologist on August 11 at Hershey Medical (South Central PA)...I will post if he is also a good doctor Link to comment Share on other sites More sharing options...
Ellen Posted July 25, 2009 Report Share Posted July 25, 2009 Yes, Dr. Nancy O'Hara is an excellent DAN doctor and she and others in her practice have played an essential role in helping my son. (I posted his story a few weeks ago on this forum.) Simon started with them over a year ago and we still see them regularly. The treatments that have been most effective for him are his gluten/casein free diet, numerous supplements and neurofeedback. He still has a ways to go before he is fully recovered, but he has made great progress since we started with Dr. O'Hara's group. Our next step is to see Dr. Latimer in August. I am very hopeful that she will be a big help as well. Ellen I was wondering if anyone had been to this doctor, she is a DAN doctor. See this link for some interesting information on pandas (confirming what many of you already know): http://drohara.com/information/documents/N...er-Fall2007.pdf Dr. Nancy O'Hara in Connecticut. Link to comment Share on other sites More sharing options...
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