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Doctors we have seen who helped with PANDAS


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This is great. Can this be pinned up top, so is easy for new folks to access quickly?

 

 

Hi -- It is there--at the top of the forum under "Helpful Threads"

Edited by T.Mom
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Though she knows little about PANDAS, our family Doctor in Richmond, Maine, Dr. Catherine Lockwood was willing to listen to me and try the saving Sammy dose of Augmentin XR. Though we've added Dr. Tr

Homeopathic remedies helped my kids with ridding my kids of their PANDAS symptoms... I just want to spread the word that something cheap can make a major difference. Antiboitic did nothing and we d

St. Louis, MO: Dr. Tracy Fritz at Little Flower Center for Integrative Medicine

Johnson City, Tennessee

 

First Choice Pediatrics Group

Dr. Heather Beadry (Psychologist)

Dr. J.P. Abner (psychologist)

 

Haven't been to see the psychologists but both are believers in PANDAS.

Edited by Sheila Rogers
Doctors previously listed do not specialize in PANDAS and we were requested to remove their names.
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Hi - In San Francisco East Bay, we have seen:

Herb Schrier MD(Psychiatrist) at Childrens Hosp, Oakland. He supported antiobiotics with pediatrician. Has seen several PANDAS children. Recently has 4 more PANDAS cases. Has been very helpful and flexiblewith treatment strategies. Supports IVIG although we do not have referral yet.

 

Katherine Martinez, Psychologist, CBT/ERT. Excellent. Is on leave from practice in Oakland. Was helpful with eating issues.

 

Denice Killingsworth, OT, Walnut Creek. Wonderful with sensory integration/reintegration. Was helpful with eating issues.

 

Marianna Eraklis MD, behavioral pediatrician, in Orinda. Very supportive and knows a little about PANDAS. Just started working with her.

Edited by JBG50
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New Jersey

Rosario Trifiletti is now in Ramsey NJ

Friedenfeld- immunologist in Lambertville NJ- will follow Dr. K's protocol for IVIG and treats and does alternative medicine.

Harumi Jyonouchi Immunologist and Pandas researcher at UMDNJ, Newark , NJ- treats and does IVIG Dr. K's protocol

Agustin Legido at St Christopher's hosp in Philadelphia

Josephine Elia Psychiatrist and researcher at CHOP

Edited by sptcmom
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How is it going with the protocol Scott Smith mentioned?

 

Melbourne, Florida. Dr. Bradstreet, Dr. Rossignol, Scott Smith, PA.

 

Well, I had my first appt yesterday with our new DAN doctor (had to ditch the first one when he refused to continue abx). I had an appt with Scott Smith, the PA in the practice. He "had" two autistic children of his own (one fully recovered and one not fully recovered), which lead him to become a DAN practitioner. I didn't know this going into the appt, but both of his boys have PANDAS! Also, I was relieved when he looked at my son's ASO and antiDNase titers (which were both negative after positive cultures) and said, "well, some kids don't have elevated titers but that doesn't mean he doesn't have pandas"! Yay! Also, he totally got my level of desperation and he is a big writer of zithromax due to the anti-inflammatory properties, once a day dosing, etc. He also helps to manage yeast which always flares in my son with an abx. He cultured our whole family, asked if we had a dog (we don't). We will get the results in a couple days. Also, he does steroids where needed as treatment and as a diagnostic tool for the usefulness for IVIG. He quoted Swedo's research at multiple points throughout the appt, and I believe that she regularly speaks at the DAN conferences.

 

Sounds too good to be true, huh? After my experience with Latimer's office, I was thinking that we all need someone else on our side b/c she can't do it all!

 

Here's the catch, which I'm not sure really matters in our case quite yet. Here is how he dosed our zithromax: 200 mg for the first 3 days, then 200 mg every other day for a few doses, then every 3 days for prophylactic use (he said that my son is still too young to do the 500 mg dose once a week). I began to panic with this plan (as I feel that my son does best on 200 mg EVERY day), but he assured me that he wants me to call him the minute things go downhill and he will bump up the dose again. So, in the meantime he is going to run some immunology bloodwork and work to improve his immune system.

 

Also, the doctors in this practice are extremely accessible. You need to do your first appt in person but then most/all appts can be done over the phone after that. Also, the nurses are extremely helpful and efficient. They usually return all emails within 24-48 hours (I have a friend who's son has been with this office and she verified that this is true).

 

With all that said, I will come back to this thread and give an update as we get further into his treatment plan. Keeping my fingers crossed!

 

Here is their website, in case anyone is interested: http://www.icdrc.org/

Stephanie

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Staten Island, NY - Dr. Ernest Visconti

 

My son was being evaluated for Lyme, but Dr. V said he wanted to check for PANDAS also. He said the treatment for PANDAS involves IVIG and antibiotics, so he is obviously a 'believer'. He's also a believer in chronic Lyme.

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San Antonio, TX, Dr. Anthony Infante, MD, PhD, Christus Santa Rosa Pediatric Blood Disorder and Cancer Unit. AMAZING TEAM...highly recommended...IVIG on DS7 and as of 09/01/2010, developing PANDAS treatment protocol with advice from Dr. Cunningham. Also working on incorporating PEX as an option. Very excited to take on new cases...very interested in learning and helping!

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Fayetteville N.C.~~~ DR. John Lesica

 

 

Address & Contact Information:

Cumberland County Mental Health

711 Executive Place

Fayetteville, NC 28305

Phone Number

 

 

He is the pediatric psychiatrist that proved to be our light at the end of a tunnel! After several mis-diagnosis ranging from Autism/Aspergers to ODD and RAD and also almost a diagnosis of borderline personality and talk about schizophrenia , Dr. Lesica said he had an "aha " moment and sent DS in for a antiDNAseB test , admits it was on a whim...DS titers were in the 3000's, DR. Lesica immediately put Ds on Augmentin regimen and within 10 day is was like a light switch had been flipped.

Dr. Lesica was our knight in shining armor when it came down to PANDAS. Now we are in Colorado Springs and having a very difficult time finding a PANDAS believer doctor!

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Hello,

Can you tell me what type of Dr. Susan Perlmutter is??

 

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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Do you know if Dr. Latimer is also versed in Tourette's syndrome??

 

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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