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Doctors we have seen who helped with PANDAS

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Charlotte, NC

 

Chris Jenny PA - Dan! doctor, PANDAS knowledge, recently educated on Dr. Cunningham's tests and research. Agreed to zith treatment w/ positive Dr. C's test.

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Fort Worth, TX
Dr. Mark Mazade, Pediatric Infectious Disease Specialist with Cook Children's Medical Center
800 7th Ave Fort Worth, TX 76104-2704 - (682) 885-1485
My experience with him is he is gentle and kind. I have been very pleased with him.

Arlington, TX
Dr. Wilfred Raine, Pediatrician in the Cook Children's group.
848 W. Mitchell St. Arlington, TX 76013 - (817)-795-8498
Dr. Raine is friendly, compassionate, supportive and was the only (of many) pediatricians in Arlington who took me seriously.

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Dr. James Nelson, Neurologist, Presby Pediatric Neurology in Charlotte NC (very helpful, diagnosed her clinically, willing to work with antibiotics and IVIG as necessary. Will also refer to specialists as needed.

 

Dr. Mauve O'Conner - Carolina Asthma & Allergy - Charlotte NC (also office in Concord) - she is very interested and curious. Willing to review all medical records. We are still new with her, so I'll update this once we have worked with her for a while.

 

Dr Branner - Pediatric GI specialist - great guy, PANDAS believer, did not blow us off, really did good work for Meg to figure out stomach issues. Did not dismiss immediately as anxiety. Found her Peptic Ulcers - Charlotte NC - Presby Pediatric GI.

 

Wish I had a good pediatrician, but still searching :ph34r:

 

Dr. DeeDee Russell - not a PANDAS person, but excellent with ERP therapy for kids and helping with anxiety. Cornelius NC

 

Dr. Pat Gammons - all the doctors at Duke, in PCAAD. Again, not really PANDAS believer - but not skeptic either. Just wants to help on the therapy side, and did amazingly well working on the OCD with our daughter.

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Doctors in the Bay Area:

 

 

Dr. Brock Bernsten

3838 California St.

San Francisco, CA

Phone: (415) 666-1860

 

Our Pediatrician, was willing to listen and support whatever recommendations immunologist made including open IVIG order if required. Willing to do additional research but not very familiar with PANDAS

 

 

Frederick A. Lloyd, M.D.

Palo Alto Center

795 El Camino Real

Palo Alto, California 94301

Phone: (650) 853-2992

 

Has several PANDAs patients, knows Margo Thienemann, listens well, responsive, will provide antibiotics in conjunction with other Dr. recommendation, open to IVIG prescription if recommended by another Dr.

 

 

David B Lewis

Pediatric Immun. & Infectious Disease

300 Pasteur Dr

CCSR 2115B

Stanford, CA 94305-5164

(650) 498-4189

 

Has seen several PANDAS patients, has treated a couple kids with IVIG, will treat my son if he has another episode.

 

 

Margo Thienemann MD

900 Welch Road

Suite 207

Palo Alto CA 94304

Phone mail: 650 324 3241

 

Specializes in Forensic Psychiatry, Geriatric Psychiatry, Internal Medicine, Adolescent Psychiatry & Pediatric Psychiatry, Psychiatry.... OCD & Has well over 20 PANDAS Patients

Edited by SF Mom

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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

TMom

 

 

I am in that area! Can you give me more info as to how I can contact this doctor? THANK YOU!!!

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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

TMom

 

 

I am in that area! Can you give me more info as to how I can contact this doctor? THANK YOU!!!

 

 

Here you go... http://health.usf.edu/medicine/psychiatry/...taff_murphy.htm

 

My son is treated by her and we drive from Orlando.

 

Shannon

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Scott Smith in Edison, NJ. He is on the Medical Advisory Board of www.pandasresourcenetwork.org and is a DAN (Defeat Autism Now) practitioner. He has tremendously helped my very severely affected pandas boys. They are completely asymptomatic at this point. He does cunningham, titers, throat cultures, etc. He will test for mycoplasma and lyme upon request. He will also do a full immune panel. His two boys have pandas.

 

He does all the traditional pandas therapies (steroid bursts and tapers, antibiotics, IVIG) and he also has other therapies to help modulate the immune system and bring down inflammation. His overall treatment plan is very broad, and in my opinion reduces the necessity of high dose and frequent IVIG.

 

Contact info:

www.drneubrander.com

scottsmithpa@gmail.com

Edited by Stephanie2

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For NC:

 

I e-mailed Eliana Perrin at UNC when we first started looking for a doctor. Her response when I asked if she was familiar with PANDAS and treated patients was:

 

"No, really not. I just do general pediatrics. Please get the word out on

the message boards as I get numerous phone calls and e-mails. "

 

She recommended another doctor at PCAAD who turned out only to do research. He then recommened another doctor in the practice who told me PANDAS "is an area which remains controversial with limited evidence for a clear consensus on how to diagnose or treat". I do think the therapists at PCAAD might be good.

 

We ended up driving to MD to see Latimer.

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Doctor Cynthia Keller in Redmond, Washington is treating PANDAS Patients with Antiobiotics, Steroids IVIG and PEX

Dr. Kim Kacoroski, ND is treating homeopathically in Kirkland, WA

Dr. Judyth Reichenberg- Ullman and Robert Ullman in Edmonds, WA have cured cases homeopathically

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Louisville KY

 

After being admitted to hospital for 2 days of GI testing (after 2 years of unexplained "tummyaches"), ended up being referred to neurology and spending 5 days, including 12 hours on quarantine for menengitis spinal tap test, MRI, many many blood/urine tests, etc.

 

Two neurologists in the practice were ready to send our 6 year-old up to the psych ward until the chief of peds neurology Dr. Vivay Puri saw her and told us about PANDAS.

 

At our last visit he invited us back the next day to be seen by Dr. Mink, a Tourette's specialist from NYC, who was in town to speak and did some rounds with some of Dr. Puri's patients. We were warned Dr. Mink is NOT a pandas believer so it was an interesting take. Dr. Mink explained that anxiety disorders can manifest in many ways, and that while it is unusual for so many manifestations to come crashing down so suddenly, doesn't mean that something (pandas) triggered it.

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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)

 

 

mom md...

 

I just found out that Dr Nelson has moved to NE. Who are you working with now to continue treatment locally? I am still looking for a provider that would write script and administer IVIG.

 

thanks.

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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:


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

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