which specialists work best with out of towners?

[dfw]

Trying to decide which PANDAS dr. would work best with someone out of state. We don't mind traveling for the first appointment, but would like to have access via phone/email for questions or sudden flare of symptoms.

 

Also would like to know how valuable it is to see a PANDAS dr. when your child is not in a full flare (but showing some symptoms) and not positive for strep or myco.

[beeskneesmommy]

Dr. Bouboulis, all the way. We saw him in person initially and scheduled phone conferences thereafter. We chose to do them every 4 wks. so we could make sure to keep excellent continuum of care. Ins. does not pay for phone consults so it is 125.00 every 15 mins. and I usually have to wait for his calls because he is really busy and almost always over an hour or 2 late (more if he has an emergency). However, I just schedule and plan to stay at home cleaning on those days. Re: value if child is not in full flare - previous medical records, especially labs, are pretty necessary to dx anyway, so as much as you can get together is important. In addition, make that appt. with whomever very fast because the wait list is generally more than 2 months for any PANDAS specialists, incl. Dr. B. He has taken our son further than any other doc and offers the sope of treatment choices (western med, not holistic). Hope that helps - PM me if you want more info.

[colleendonny]

We see Dr. Bouboulis too. We travel about 4 hours each way to see him. I think from now on though, we will do phone consults.

I do not see Dr. T, but I have great things about communication from him, but also things that are not so great.

 

It shouldn't matter if they are in a flare up or not. It's mostly a clinical diagnosis, and some blood tests can back it up.

[cobbiemommy]

We fly from Midwest to see Dr. B; so far worth every penny! We also flew to see Dr. K. He was good for us, but Dr B uncovered all the reasons that IVIg was necessary. That got us insurance approval. Did I mention he was worth every penny!

[ptcgirl]

Dr. B is our choice too. We travel from Georgia to CT to see him. Worth it. I think having regularly scheduled phone consults are important. I may do that too. We did one before and it was helpful. It isn't easy to get in touch with him otherwise since he is so busy with patients. I wonder if at some point he will limit new patients. I don't see how he can keep going at this rate. The first time we saw him my dd was not in a flare either, so I don't think that is a big deal. The important thing for us was establishing a relationship for future treatment which we REALLY wound up needing. Good luck in your decision.