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Doctors we have seen who helped with PANDAS


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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.

 

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  • 1 month later...

Massachusetts: Watertown

 

Dr. Jeanne Hubbuch124 Watertown St., Suite 2F Watertown, MA 02472

email: drhubbuch@aol.com

phone: 617-744-0401

Fax: 617-744-5346

 

She is a holistic, family practitioner and uses a combination of western medicine, herbs and homeopathy.

 

She is not a PANDAS/PANS expert (yet), but is willing to run tests, etc.

She is a DAN! doctor as well.

Edited by KaraM
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Dr. Fulbrigge no longer sees PANDAS patients.

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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I'm in desperate need of a pediatrician in SW Florida who understands PANDAS/PANS and will prescribe ABX. We live between Ft. Myers and Naples. Dr. Distasio (pediatrician) referred us to a neurologist. Dr. Distasio is not educated on PANDAS/PANS and does not believe in prophylactic antibiotics. I couldn't get an appointment with a neurologist in the area in less than 6 weeks. I finally got in with a pediatric neurologist, Dr. Osterman, who had a cancelation, and he diagnosed my 9-year-old son with PANDAS but neither doctor will prescribe antibiotics!

 

My son meets the criteria to be in the NIH clinical study for IVIG, but could be excluded b/c I can't find a doctor to prescribe the prophylactic antibiotics. Please let me know of any pediatricians in the area who are familiar with the condition and treatment of PANDAS/PANS. My son's 10 day course of amoxicillin runs out on Sunday. It has helped to lessen my son's sudden-onset OCD and I'm not looking forward to an increase!

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I'm in desperate need of a pediatrician in SW Florida who understands PANDAS/PANS and will prescribe ABX. We live between Ft. Myers and Naples. Dr. Distasio (pediatrician) referred us to a neurologist. Dr. Distasio is not educated on PANDAS/PANS and does not believe in prophylactic antibiotics. I couldn't get an appointment with a neurologist in the area in less than 6 weeks. I finally got in with a pediatric neurologist, Dr. Osterman, who had a cancelation, and he diagnosed my 9-year-old son with PANDAS but neither doctor will prescribe antibiotics!

 

My son meets the criteria to be in the NIH clinical study for IVIG, but could be excluded b/c I can't find a doctor to prescribe the prophylactic antibiotics. Please let me know of any pediatricians in the area who are familiar with the condition and treatment of PANDAS/PANS. My son's 10 day course of amoxicillin runs out on Sunday. It has helped to lessen my son's sudden-onset OCD and I'm not looking forward to an increase!

 

Dr Tanya Murphy is at the Univ of South Florida and is one of the first physicians who recognized and began treating PANDAS.

Tanya Murphy MD

 

Rothman Center for Pediatric Psychiatry

 

880 6th St S

Dept 7523

St Petersburg, FL, 33701

Phone: (727) 767-8230

Fax: (727) 767-7786

 

 

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Dr. Elisa Benaim -- Pediatrician in Memphis, TN http://pedseast.com/doctors -- Dr. Benaim has treated several children with PANDAS and has consulted with specialists. She is most helpful and really loves the children.

 

Dr. Dean Klug-- ENT in Memphis, TN http://www.mid-southent.com/sinus-center/

 

Dr. Greg Hanessien -- Allergist and Immunologist in http://www.memphisallergist.com/

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Dr. Najaar. NYU Langone. Doesn't treat children but treats me aggressively for PANDAS with IV steroids, PEX, IVIG whatever it takes. My son sees Dr. T. We are located in NJ. Thankfully PANDAS treatment is pretty easy here.

Edited by LaurenK
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