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Doctors we have seen who helped with PANDAS


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Would like to here from anyone who has been to either one of the Drs. mentioned in Charlotte, NC or Chapel Hill, NC. We have been to over 17 Drs. and therapists over the past 4 years. Went to a neurologist @ Duke who did not believe PANDAS exists. Our DD had sudden onset OCD,separation anxiety,became school phobic,almost catatonic the first week of onset. Psychiatrists x 4 have had her on every possible combinations of meds in existance it seems. We finally took her off of it all as none were helping and making s/s worse.

We are beyond desperate for help.

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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

stiv mommy,

 

I don't think any of us can vouch for the non-US doctors on this list, but it shows providers in Italy, Denmark, and the UK.

 

http://www.savingsammy.net/providers.php

 

Another option would be to do a telephone consult with Dr. K (who will also respond promptly to emails sent by parents, not medical providers) or Dr. T. Their names are listed on the sticky thread that explains abbreviations. Dr. K is from Croatia, I understand.

 

Ko's Mom

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  • 3 weeks later...

I'm looking for doctors in VA who treat PANDAS. Specifically, wondering if anyone has visited with Dr. Stephen Shield in Newport News or Sentara Pediatrics Physicians in Williamsburg (Drs. Gottfried, Graham, and Via). They're listed on the Saving Sammy website list of providers.

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Dr. Lewis Columbus, Ohio.

Great mid-west Integrative pediatrician. A team player (with PC who doesn't believe in PANDAS) and a great communicator. Quick responses to emails and inquiries.

2 hour first appointment. Ordered labs same day. Easy patient portal on lab results. Sells supplements on sight.

 

My DS14 couldn't handle capsule 'smell' and was given advice to put cinnamon in the bottles.

 

http://www.integrativepediatricsofohio.com/

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  • 11 months later...

Any Dr's in Oklahoma City or Oklahoma that can help?

Hello mok and all those looking in OKLAHOMA-

 

I am new to posting on the forum, but not new to the forum at all...I've been reading it for about a year. We have a fantastic physician in OKLAHOMA CITY area (EDMOND--NORTH OKC) he is:

 

Peter Stanbro, Stanbro Healthcare Group

 

Associated with the University of Oklahoma and very familiar with Moleculera (the lab where the CUNNINGHAM panel is now funded/researched in) and PANDAS-

he is the original doctor who pointed us down the road of PANDAS before we had ever heard of it. He is trained and was on the tenure track at Boston Children's (I know it has been getting some bad press but he must have left before the downfall began). Now, we know all too much about PANDAS and too closely. I honestly don't know where we would be without Dr.Stanbro and our willing and loving PCP who was originally quite hesitant (until we got very positive ASO and Anti-dnase). I would wholeheartedly recommend Dr.Stanbro and if I was a PANDAS parent not too close to OKLAHOMA, I would be willing to drive hundreds of miles for him. He never gives up, he works hard to figure out the puzzle and find solutions. I have never seen a doctor work quite like him. He is very personally involved in my son's life and in finding the best treatment for him. Problem solver.

 

More info about my child:

 

11 y/o boy

started symptoms around age 6

multiple strep throat diagnosis before that time (first was very, very severe case of strep throat)

Originally diagnosed with ADHD-age 6

OCD symptoms started and included bathroom obsessions (having to take a bath after each time and having to strip off clothes to sit on toilet), MAJOR sleep disturbances, Some vocal disturbances (not quite to the point I could say they were tics (whistling), autism spectrum type things like having to be red on monopoly or not able to move forward

Originally (and still) treated with Adderall (immediate release, 30 mg at 7 am, 20 mg at noon) (after trying many other ADHD meds) and Prozac (10 mg)

Presently on the above meds in addition to Cefdinir (OMNICEF) and has been treated for 6 months (originally tried Azithromycin but didn't see significant improvement. Found near immediate response in area of SLEEP and 2 months or so for response in other areas like obsessions)

ASO/AntiDNASE ALWAYS elevated--VERY ELEVATED--Slowly decreasing (but still double the upper limit of normal) since starting antibiotics

NEG strep throat cultures while VERY POSITIVE blood tests

CUNNINGHAM PANEL was done during a non-exacerbation and he was on the line between Pandas Likely and Pandas unlikely

Have not done IVIG but would really like to

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  • 8 months later...

For Sacramento, Ca.

These two neurologists are knowledgable about many of the issues in PANDAS/PANS but I am not certain they have fully committed to it as an entity so I mention them with some reservations if you have specific expectations. They will work up symptoms of autoimmune encephalopathy and catatonia and will treat with IVIG, plasmapheresis, steroids and other immunosupressives if they determine it might be helpful. They also have experience with autism. They have earnestly tried to help my son.

Dr. Michael Chez (pediatrics): Sutter Neuroscience 916-454-6850

Dr. Shawn Kile (adult) : Sutter Neuroscience 916-454-6850

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orange, ct.

 

dr. amiram katz

neurologist

203.795.5425

 

brilliant and compassionate doctor and human being. nontraditional office. his three dogs are in charge. staff is very responsive via email; telephone contact is not preferred. dr. katz diagnosed my pandas and has been aggressively treating me with patience and respect. all other doctors had previously misdiagnosed me, dismissed me, or ridiculed me. he is very knowledgeable about pandas and is happy to share information. i cannot recommend him highly enough.

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  • 1 month later...

can anyone reccomend any doctors in maryland dc area that accept medicaid that treat pandas. Ive been to Latimer but can not afford to go back and only have medicaid at this time. She wont continue antibiotics without seeing my son again and if I pay out of pocket ( which i cant anyway) i could lose medicaid. They dont make any of this easy. Any kind of doc. Ped, Imm, psy, neuro. Thank you

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