Dr. B or Dr. T?

[monarchcat]

I've been thinking that it's time to get ourselves to one of the "big guns" and get our kids under the care of a dr that knows PANDAS inside and out. I had a phone consult w/ dr. L initially but then had trouble getting a hold of her again so I dropped it. I've been working with our ped who is willing to listen to my recommendations but knows very little about PANDAS.

 

I am in Massachusetts so I'm thinking either Dr. T in New Jersey or Dr. B in Connecticut.

 

Now that my daughter is showing clear signs of PANDAS, too, this just can't wait any more. I can't keep being the only "expert" in my children's lives. I fell like I've taken this as far as I can and now we need to definitely take the next step.

 

So... for those who have seen Dr. T and/or Dr. B, can you tell me a bit why you chose who you did? Do their treatment approaches differ? Do they recommend IVIG or PEX usually?

 

Any info would be great so I can try to make a decision and then make an appt.

[Phasmid]

Hi- I will pm you...

 

Mary

[Doug]

We went to Dr K he has been doing this for a long time..

we are 12 weeks post ivig and going great.

He Never left our side unless for lunch or to check on a different

kiddo,but he was always there..

Tracie

Edited May 7, 2010 by Doug

[monarchcat]

Thanks for the responses and the PMs. I realize now that this kind of "this doctor vs. that doctor" post is somewhat frowned upon (I had forgotten about a previous post discouraging this kind of thing), and I can understand why. I really appreciate those who replied and those who PM'd me and I still welcome any feedback via PM.

 

We owe so much to the few doctors that are willing to put themselves out there and treat PANDAS with knowledge, compassion and a drive to further the understanding and treatment of this beastly disease. They are all amazing!