KLJ reacted to melmix in PANDAS Dr. Recommendation on east coast
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.
KLJ reacted to pr40 in PANDAS Dr. Recommendation on east coast
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.
KLJ reacted to nicklemama in PANDAS Dr. Recommendation on east coast
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.
KLJ reacted to T_Mom in IVIG made symptoms worse…will PEX help?
Great information in the posts above.
My youngest d had IVIG and the first time it had a VERY positive effect, then two years later she had IVIG again and this time her symptoms became worse. She then had pex and it helped a great deal. She is much, much better 6 months later.
I think asking Dr Elia is a great idea, and/or pursuing additional autoimmune testing to rule out any other identifiable autoimmune issues.
I appreciate especially the "Grand Rounds" video posted by PowPow. As parents really need to ask the treating docs to run the tests which might shed light on whether or not there is an identifiable autoimmune basis for the neuropsych issues experienced by our kids.
The response to immune modulating treatments is key. Dr. K recommended the "trial" of steroids -- and if there was a reaction THEN IVIG...that made sense 5 years ago to me, and it still makes sense...
Our experience has been that both daughters had pex and yes, in our situation it did help.