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Doctors we have seen who helped with PANDAS

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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 by T.Mom

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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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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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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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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

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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

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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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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

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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.vcuchildrens.org/?id=716&sid=4

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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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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

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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.

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  • Help us learn if blood type has a correlation with PANDAS/PANS   78 members have voted

    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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      • A -
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      • B -
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      • AB -
      • I Don't Know

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