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Doctors we have seen who helped with PANDAS Parent listing of doctors who helped--please add to this list.

#1 User is offline   T.Mom 

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Post icon  Posted 17 July 2009 - 08:28 AM

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

This post has been edited by T.Mom: 03 May 2010 - 11:30 AM

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#2 User is offline   T.Mom 

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Posted 17 July 2009 - 02:52 PM

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.
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#3 User is offline   dcmom 

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Posted 17 July 2009 - 05:03 PM

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.
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#4 User is offline   ShaesMom 

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Posted 18 July 2009 - 08:25 AM

Dr. Stacy Houston, Doctors of Children, Lincoln, Nebraska
Dr. Koybashi, Immunologist, Omaha, Nebraska
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#5 User is offline   mom md 

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Posted 18 July 2009 - 10:52 AM

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)
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#6 User is offline   NancyD 

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Posted 18 July 2009 - 07:07 PM

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)

View PostT.Mom, on Jul 17 2009, 08:28 AM, said:

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

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#7 User is offline   michele 

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Posted 20 July 2009 - 01:26 PM

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.

View PostT.Mom, on Jul 17 2009, 09:28 AM, said:

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

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#8 User is online   P.Mom 

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Posted 20 July 2009 - 01:48 PM

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
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#9 User is offline   michele 

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Posted 20 July 2009 - 01:55 PM

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

View Postmichele, on Jul 20 2009, 02:26 PM, said:

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.

View PostT.Mom, on Jul 17 2009, 09:28 AM, said:

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


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#10 User is offline   Lacy 

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Post icon  Posted 21 July 2009 - 05:58 PM

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! :mellow:



Pediatric Infectious Disease Specialist, Dr. William C. Koch
http://www.vcuchildr...g/?id=716&sid=4
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#11 User is offline   colleenrn 

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Posted 21 July 2009 - 06:07 PM

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
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#12 User is offline   kim 

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Posted 22 July 2009 - 12:51 AM

Two parents that have PANDAS children from this and the TS forum, have been helped very successfully by this Dr.

http://www.nancymull....com/index.html

Nancy Mullan MD

2829 W. Burbank Blvd, Suite 202
Burbank, CA 91505
Telephone: (818) 954-9267
Fax: (818) 954-0620
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#13 User is offline   dcmom 

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Posted 23 July 2009 - 11:46 PM

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.
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#14 User is offline   Kayanne 

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Posted 24 July 2009 - 09:29 AM

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
~Karen
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#15 User is offline   Ellen 

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Posted 24 July 2009 - 11:17 PM

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

View Postdcmom, on Jul 24 2009, 12:46 AM, said:

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.

www.pandasresourcenetwork.org

Eductate, Communicate, Cure


Together we can accomplish great things!


www.pandas-syndrome.webs.com

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