Who are the best docs for consultation?

[purple66p]

We saw our family doc yesterday and she seemed open to PANDAS. I love this doc; she's been taking care of all of us for 10 years, always gives hugs and asks how everyone if the family is doing. She was not very familiar with PANDAS but as soon as I made the appointment she started researching. I left her with a stack of journal articles to read and my letter from Dr. Cunningham. She wants to research further before starting treatment but is very willing to work with us. Yeah!

 

I told her about the standard treatments as I understand them. I suggested starting with Amoxicillin XR & let her know that some folks had to go to high doses or add Azithromycin. (She seemed worried about the clavulanate causing diarrhea--anyone have problems with this?) I also discussed the steroid burst and she seemed OK with 5 days but worried about longer. (My son has had periods of what we've called mania in the past.) And then I told her about long-term IVIg and/or PEX. She made a face then and said "I hope we don't have to go that far." She's very interested in seeing the Cunningham results.

 

Anyway, to get to the point, she asked me for doctors that she could call to consult with. I'm perusing the boards and it seems like Latimer, Kovacevic, Trifiletti, and Dr. Infante would all be good. I don't know which to suggest first, although I'm leaning to the latter since he is closest to us geographically and he came highly recommended by someone on the board. (Not that the others aren't highly recommended!)

[fuelforall]

Anyway, to get to the point, she asked me for doctors that she could call to consult with. I'm perusing the boards and it seems like Latimer, Kovacevic, Trifiletti, and Dr. Infante would all be good. I don't know which to suggest first, although I'm leaning to the latter since he is closest to us geographically and he came highly recommended by someone on the board. (Not that the others aren't highly recommended!)

 

 

 

Dr Bouboulis in Connecticut is also a good bet. I would say Kovacevic as he has done a lot of phone consults and cuts to the quick. He's treated a lot of kids.

[dcmom]

I think it is great your ped wants to help. My advice, however would be to see one of the pandas docs, and use the ped for local support - if at all possible.