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T_Mom

Doctors we have seen who helped with PANDAS

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Hello everyone...

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 Later in June...she will most likely want to try steroids first.

I don't know...just thought I would mention that....I would 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.

 

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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

 

 

Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.

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Dr. Nevada Reed at Kids Link. However she does not take insurance. http://kidslinkohio.com/

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

 

 

Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.

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Dr. Nevada Reed at Kids Link. However she does not take insurance. http://kidslinkohio.com/

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

 

 

Dr. Sunjya Schweig at Hill Park Medical Center in Petaluma CA (a little north of San Francisco) is a functional medicine pediatrician and diagnosed my son with PANDAS last year (as well as celiac and a whole bunch of nutritional issues related to leaky gut). His office is doing IVIG infusions as per Dr K's protocol, and they are very kind and progressive and seem more affordable as well, an extra benefit.

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Hello,

I llive in Virginia, and i am having a heck of a time finding a doctor who believes in pandas. My ped wouldn't even run her titers. Did you see Dr. Fortner? How did it work out with her? Also, Dr. Koch?

Thanks so much!

 

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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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.

 

 

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Could someone give me the name of a doctor who treats PANDAS in Eastern TN, namely Knoxville, Kingsport, or Johnson City. Someone gave me a a couple of names a few weeks ago, but I have misplaced it. One was a female doctor. I am at my wits end with my daughter her bipolar/?PANDAS is really bad. I had to have her arrested last 2 weeks ago. She has gotten violent with me in the last month, pushing me, beat another hole in the wall, and shoved me off 2 steps. Tomorrow I have court regarding this, and I am heart broken. She has beat holes in the walls since she was 15. She is 19-1/2 now. Very intelligent, but emotionally she's about 13 yrs old. I want her to get the medical help she needs, not just psychiatric help. I pray something good comes of this.

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Could someone give me the name of a doctor who treats PANDAS in Eastern TN, namely Knoxville, Kingsport, or Johnson City. Someone gave me a a couple of names a few weeks ago, but I have misplaced it. One was a female doctor. I am at my wits end with my daughter her bipolar/?PANDAS is really bad. I had to have her arrested last 2 weeks ago. She has gotten violent with me in the last month, pushing me, beat another hole in the wall, and shoved me off 2 steps. Tomorrow I have court regarding this, and I am heart broken. She has beat holes in the walls since she was 15. She is 19-1/2 now. Very intelligent, but emotionally she's about 13 yrs old. I want her to get the medical help she needs, not just psychiatric help. I pray something good comes of this.

 

Kathy - I can't give you the name of Tn doctor - I am in Texas and using a doctor in Illinois - he also does phone consults....we have been using him for almost a year now - we have had GREAT improvement in that time - my daughter just turned 21....His name is Dr. Kovacevic...here also is his email -

mkovacevic@aol.com

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A brief update for all - sorry it's been forever!

 

Our daughter has been seeing Dr. Fortner now ever since I made my original post. She knows PANDAS on a personal level and has been an amazing source of help and sympathy. Our DD has been on long-term antibiotics for over a year now. We started off on the full dose and then we backed off to half as a maintanance dose. When DD starts exhibiting symptoms we up it to the full amount for two weeks or until the symptons wane. I would absolutely recommend her to anyone in the Virginia area looking for help with their PANDAS child.

 

Incidentally, Dr. Fortner's office and nurse/assistant all are amazing. To this day it shocks me at how polite everyone is, and willing to help - and we're not talking a small office! They have multiple locations around the area, AND if you need a titers test done (which Dr. Fortner doesn't mind ordering), you don't have to go to the local LabCorp for the draw. Her own office does the blood draw and "Mo" is especially great with DD when it's time for that.

 

I just can't say enough good things - we're just truly happy with Dr. Fortner and are glad to finally have a medical doctor advocate on our side! B)

 

If anyone has any questions, please don't hesitate to e-mail me! lacyhatton@aim.com

 

Lacy

 

 

P.S. We never did go back to Dr. Koch. He is a very nice man, but was very open that he didn't know much about PANDAS and we got the impression that he didn't like keeping DD on the long term antibiotics.

 

 

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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Just FYI about Dr. Fortner. I called today and they said she is not taking any new patients:( Bummer!! Anyone else in VA got a good doc??

 

A brief update for all - sorry it's been forever!

 

Our daughter has been seeing Dr. Fortner now ever since I made my original post. She knows PANDAS on a personal level and has been an amazing source of help and sympathy. Our DD has been on long-term antibiotics for over a year now. We started off on the full dose and then we backed off to half as a maintanance dose. When DD starts exhibiting symptoms we up it to the full amount for two weeks or until the symptons wane. I would absolutely recommend her to anyone in the Virginia area looking for help with their PANDAS child.

 

Incidentally, Dr. Fortner's office and nurse/assistant all are amazing. To this day it shocks me at how polite everyone is, and willing to help - and we're not talking a small office! They have multiple locations around the area, AND if you need a titers test done (which Dr. Fortner doesn't mind ordering), you don't have to go to the local LabCorp for the draw. Her own office does the blood draw and "Mo" is especially great with DD when it's time for that.

 

I just can't say enough good things - we're just truly happy with Dr. Fortner and are glad to finally have a medical doctor advocate on our side! B)

 

If anyone has any questions, please don't hesitate to e-mail me! lacyhatton@aim.com

 

Lacy

 

 

P.S. We never did go back to Dr. Koch. He is a very nice man, but was very open that he didn't know much about PANDAS and we got the impression that he didn't like keeping DD on the long term antibiotics.

 

 

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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Dr. Boosara Ratanawongsa - pediatric neurologist at Lehigh Valley HOspital in Bethlehem PA

2545 Schoenersville Road Bethlehem PA 18017

484-884-3333

 

Really wonderful personality, open to all parental input and great with children. Great to offer assistance in referalls to other helpful physicians and steering away from those who will not be open to helping. Knows who is studying PANDAS and who isn't in this area.

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In Plano TX

Dr. Seshagiri Rao

Immunologist

3016 Communications Pkwy # 100 Plano, TX 75093-8906 - (972) 964-7373

 

Very knowledgeable about Pandas and also works with Autistic children.

We are currently working with him as of about 10 days ago. However, I wish he was easier to get in touch with questions. Slow to respond, but right now . . . all we have.

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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.

 

Sean McGhee has moved to Northern CA...he's at Stanford/LPCH (Pediatrics immunology).

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