PANDAS Dr. Recommendation on east coast

[KLJ]

We are looking for a "responsive" PANDAS doctor on the east coast. We live in the Washington, DC area and our current doctor, Dr. Latimer, is unreachable no matter how many times we call and leave messages with receptionist, voice mail, or on their online patient portal. Our son is having a PANDAS flare up and is suicidal, homicidal, food restriction, etc. and we need to consult about options (change in abx, additional abx, steroid). He is on daily abx, IVIG 11/13, PEX 2/14. Thank you!

 

[melmix]

I am so sorry for what you are going through. I live about 20 mins from Dr T so we see him. He used to have a different office staff where it was really hard to get a call back or to get a hold of him but he just switched a few weeks ago and it has gotten better. Since I live close I make a lot of appts. and I can usually get in within the week. He does work on Sat. and Sun. also. If I remember correctly he is at a conference (I think in DC) two days this week so he may be a bit more packed but you could call tomorrow and see. My husband works out of DC and we do this ride regularly - it is 4 hrs on a great day and up to 5 or over if you hit bad traffic or construction. Not sure if he is right for you but it is an option. Also I used to live in the town Dr B works in and that is just about another hour from here is you want to make that drive (never seen him and don't know about his response time). There is also a specialist at Yale which is just a bit further north than Darien where Dr B is.

Good luck.

Melmix

[pr40]

if he is her patient, while you look for other options, would showing up in her office and going as far as threatening legal action help? I would do it without second thoughts, politely but firmly. you really don't have that many other options.

[nicklemama]

Unfortunately, it seems most of them have issues with office management. If you can get to Dr T, in person, he is a good option. There is also Dr. Bouboulis in Connecticut. His office staff seems to have their difficulties too. The new PANDAS clinic is open at Mass Gen. I don't know how quickly you can get in to MGH or Dr. Bouboulis. If this is an emergency, I believe Dr T will do his best to see you ASAP. Three are others in your region but I don't know how quickly you can see them.

[BeeRae22]

Here is a link that may help http://www.latitudes.org/forums/index.php?showtopic=5023 this is from this forum under the "useful links" topic

 

I didn't have any luck getting in to see Dr. Bouboulis myself, even when dd was in crisis.

 

I've heard great things re: Nancy O'Hara in Wilton, CT but have no personal experiences myself.

 

Took my dd to Yale for 5+ months and wish I hadn't wasted my time. Not sure which "specialist" Melmix is referring to, but if it's Dr. Leckman than move on.... While he seems to be a super nice guy, caring, etc. he hasn't been seeing patients as far as I'm aware, and his research has gone in other directions since his days of doing ivig trials.

 

You might want to try Dr Tom Moorcroft in Berlin, CT if you can get in. He is fantastic.

 

Good luck!

[MaryAW]

We see Dr. B, and his office has the same issues. This is what I do. I call every 15 minutes throughout the day until a person answers. I do not leave messages. It sounds ridiculous, but it seems the only way to get through. I just keep the phone with me and hit redial constantly. Sometimes it's taken me 2 days to get through!

 

I would advise staying away from Yale - a complete waste of time and it sounds like you don't have time. Maybe try calling the NIMH and ask Dr. Swedo what you should do. Maybe someone there can help guide you.

 

Link to PANDAS Network directory of providers:

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/

 

You probably know this already, but ibuprofen during flares is hugely helpful.

[PowPow]

Please consider duke's neuroimmunology clinic. They do not treat pandas (as that name specifically) but several "pandas"pts (including my own child) have been found to have underlying disease causing pans. My children also had ivig, pex, steroids.

I can share more specifics about duke, privately, if you like or go to aealliance.org

Edited January 19, 2015 by powpow

[Thesuzie]

We have seen all of these dr.'s mentioned and have pulled what we could from each one. However, as mentioned, also have experienced roadblocks along the way. If you are seeking a "responsive" pandas doctor, I agree, Dr. Tom Moorcroft is exceptional. You will get a call back and you will also get a follow up call a few days later. He is very knowledgable and thorough. His staff are all very kind.