I need the lowdown on big doctors

[mom love]

Hi there, we are wanting to consult with a doctor or two who has direct experience with treating PANDAS. We would like to consult and would like our local doctor who is open minded to consult as well in order to know how long to keep on antibiotics, which antibiotic to use and how to decide what prophylactic to use and dosage.

 

The big doctors I see from this site are:

 

Dr. Denis Bouboulis, CT

 

Dr. Tanya Murphy, FLA - does she actually see patients?

 

Dr Trifiletti

 

Dr. Latimer

 

Dr. Susan Schulman, Brooklyn, NY

 

and I read about Dr. Catherine Nicolaides in NJ from "Saving Sammy"

 

 

ANY actual experiences consulting with or visiting any of these doctors is appreciated ie. do they do phone consults? Do they lean toward antibiotics or IVIG? What is the wait time for a consult? Do you know the cost and contact numbers?

 

Realizing every doctor has different opinions and protocol, any insights would appreciated so we can choose a direction.

 

Thanks!

 

mom love

[airial95]

We are a patient of Dr. Murphy's - yes, she sees patients. She believes firmly in abx as a treatment option - although we haven't had to discuss the big guns with her at this point, but my understanding is she's an abx kinda gal.

 

I don't know what the costs are, since she's in network for our insurance, all we did was our $30 specialist copay. We're also local to her, so I don't know how she is about phone consults.

 

We waited only 3 weeks to get an appointment with her. Her contact info should be on the Dr's thread that's pinned - here's the link

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

If you can't find it, PM me and I'll be happy to pass it along, and answer any other questions I can. We're newer patients of hers, but so far we're very pleased. Our pediatrician recommended her as part of our "team" treating our son. He wanted an expert on board just in case we got trouble from our neurologist - whcih surprisingly, we didn't - he agreed it was PANDAS too.

[EmersonAilidh]

I haven't seen any of these doctors but I just wanted to make sure that you didn't leave out Dr. Kovacevic!~

[jackieann]

I just had a phone consult with Dr. Nicolaides today. She was great and spent more time on my daughter's complicated case than I expected. We learned about her from the mystery diagnosis episode on Sammy. We're in the process of scheduling an appt. to meet with her.

 

Good luck!

Jackie

[pixiesmommy]

We used Dr Kovacevic (not on your list, but another biggie) in Oak Park, IL did our IVIG. He believes in abx for a year afterward.

[EAMom]

Just a warning with Dr. Nicolaides...she (unless she's changed in the past few months) believes you need to have high strep titers to have PANDAS (or something to that effect). So, if your kid is one of those with low ASO or anti-dnase B, don't waste your time or $$ with her.

[EAMom]

btw, here is another recent thread on the same topic.

 

http://www.latitudes.org/forums/index.php?showtopic=9762&pid=81986&start=&st=#entry81986

 

It seems that the docs most utilized by folks on this forum are Dr. Latimer, Dr. Bouboulis, and Dr. K.

[laure]

Just a warning with Dr. Nicolaides...she (unless she's changed in the past few months) believes you need to have high strep titers to have PANDAS (or something to that effect). So, if your kid is one of those with low ASO or anti-dnase B, don't waste your time or $$ with her.

 

How long did you wait to be recalled, because I have been waiting for 8 days just to get called just to schedule an appointment...

thanks!

[laure]

Just a warning with Dr. Nicolaides...she (unless she's changed in the past few months) believes you need to have high strep titers to have PANDAS (or something to that effect). So, if your kid is one of those with low ASO or anti-dnase B, don't waste your time or $$ with her.

 

How long did you wait to be recalled, because I have been waiting for 8 days just to get called just to schedule an appointment...

thanks!

[Packer Fan]

I have had one phone consult with Dr. Nicolaides in February, went to see her in July, and have another consult scheduled for next week. She was very thorough in her office visit. She favors antibiotic treatment but did tell us she thought we were good candidates for IVig. She referred us to Dr. Cunningham's study and mentioned the Yale study so I think she is pretty "in the loop" with things in the PANDAS world. We did not get a TON of new info. but she was great at looking at the big picture and discussing many things PANDAS and non-PANDAS related with my son, especially related to his education.

[tired mom]

Just a warning with Dr. Nicolaides...she (unless she's changed in the past few months) believes you need to have high strep titers to have PANDAS (or something to that effect). So, if your kid is one of those with low ASO or anti-dnase B, don't waste your time or $$ with her.

DITTO!!!!! Been there-Done that Waste of time and $$$$