Locating a PANDAS specialist

[ExpatMom]

Hello,

I live in Saudi Arabia with my 10 year old son who has been suffering from TICS/anxiety for the last 5 years. I saw a program on TV a couple years ago about PANDAS. I thought might son might be suffering from it and mentioned it to his Psychiatrist, but she blew me off. I finally mentioned it to a Peds. Infectious Disease specialist and he tested my son's ASO titer, which was very high. We have seen a Pediatric Rheumatologist here but he is not sure how to proceed, although he feels my son definitely might have PANDAS. I would like to bring him to the US to see a specialist for evaluation. Can anyone recommend a doctor? Anywhere in the US is fine, although I am from Cincinnati and that would be convenient for me. I am desperate!! My son is currently experiencing an exacerbation of tics/anxiety and I feel helpless.

[kimballot]

HI - the PANDAS docs most often used are:

Dr B - Dr Bouboulis

Dr K - Dr. Kovacevic

Dr L - Dr Latimer

Dr T - Dr Triffileti

 

I'll send you a PM with some of my thoughts.

[Fixit]

HI - the PANDAS docs most often used are:

Dr B - Dr Bouboulis Conneticut

Dr K - Dr. Kovacevic Illinoies

Dr L - Dr Latimer Maryland

Dr T - Dr Triffileti New Jersey

 

I'll send you a PM with some of my thoughts.

 

those are the best most familiar

just adding in case you can see 2 or more...or if you have family somewhere in these areas

if you get to FL i truly recommend Scott smith in Melbourne....Works in a DAN office with other AUtism doctors

he's a PA with his own 2 panda kids...gets it...has many test to see other underlying issues..does do high dose ivig

[P_Mom]

Remember that Dr. Latimer is out indefinitely....I wouldn't suggest her right now.

[Stephanie2]

We use Scott Smith in Melbourne, FL. He is very thorough and does international phone consults.

Stephanie

 

HI - the PANDAS docs most often used are:

Dr B - Dr Bouboulis Conneticut

Dr K - Dr. Kovacevic Illinoies

Dr L - Dr Latimer Maryland

Dr T - Dr Triffileti New Jersey

 

I'll send you a PM with some of my thoughts.

 

those are the best most familiar

just adding in case you can see 2 or more...or if you have family somewhere in these areas

if you get to FL i truly recommend Scott smith in Melbourne....Works in a DAN office with other AUtism doctors

he's a PA with his own 2 panda kids...gets it...has many test to see other underlying issues..does do high dose ivig

[ExpatMom]

Thanks so much to everyone for your responses. I have already contacted a couple of the doctors recommended and have already received an email response from one. I am thinking of seeing Dr. K since he is in Chicago and close to Cincinnati-I can drive back and forth for appt.s if necessary. I am still not sure if my child has PANDAS, but reading all the posts here sure make me think that he definitely might have it. It all sounds so familiar to me. It might sound crazy, but I am hoping against hope that he actually has PANDAS so I might be able to finally find a way to help him. Thank you all for your continuing support.

[tpotter]

Dr. K. is absolutely wonderful, and the fact that you can drive back and forth is even better. I wonder if you can send away for Dr. Cunningham's test kit, also? Seems like you could have that information before you go to the doc.

[ExpatMom]

Thanks for your support. I am hoping to speak to Dr. K by phone to ask some of these quesitons. I am not sure if the Cunningham test is possible since I am in Saudi Arabia. My son is currently having an exacerbation so I am hoping to speak to someone quickly to see if I should come to the US to have the test done now or try some steroids/antibiotics and other labs from here first to see how he responds. Hopefully, I will get some answers soon. Thanks again for your post.

 

 

 

Dr. K. is absolutely wonderful, and the fact that you can drive back and forth is even better. I wonder if you can send away for Dr. Cunningham's test kit, also? Seems like you could have that information before you go to the doc.