JenniferG Posted April 24, 2011 Report Posted April 24, 2011 I have left Dr. T 4 voicemail messages and 2 emails. Is he OK? Has anyone heard anything?
tpotter Posted April 25, 2011 Report Posted April 25, 2011 Join the club (a lot of us have had this problem over the years.)
Guest pandas16 Posted April 26, 2011 Report Posted April 26, 2011 I think Dr. T is great. I've had trouble getting a hold of him- well more my mom when I was really sick but I don't think he would purposely not answer anyone. I hope he's okay.
Christianmom Posted April 26, 2011 Report Posted April 26, 2011 You might have to schedule a phone consult to get a hold of him. I have had to do that. Also, he is often free Friday afternoons and will answer the phone. Sometimes he is working Saturdays and will answer the phone then. If you leave a message with Anna enough times, he should call you back. If it is an emergency and you say so in the heading of your e-mail, he will answer you right away. You have to be careful that your e-mail doesn't ask a lot of questions. He doesn't have time to answer them. You have to make a consult for that. I guess I can understand that, but it is frustrating that he doesn't answer at all, even with a brief message asking you to make an appointment.
dcmom Posted April 26, 2011 Report Posted April 26, 2011 I want to chime in. ALL of the pandas docs have their "issues", unfortunately. Maybe that is what makes them able to think out of the box, be compassionate beyond the level of their peers, and treat our kids. Dr T is EXTREMELY smart, and very kind. If you keep at it, he will come through for you. I find, personally, that it is not a bad idea (albeit expensive) to have more than one "pandas doc" on your team- as it is a complicated, and at times urgent illness. Anyway- I did just talk to him, he is around, so keep trying
nicklemama Posted April 26, 2011 Report Posted April 26, 2011 Christianmom gave good advice for getting in touch w/ Dr T. He diagnosed my son and I am forever in his debt, after going from dr to dr for a year. He has been directing DS's treatment for 6 months now. We don't live anywhere close to him, so, next week, DS has IVIG w/ Dr K. I plan to use both dr's. They both have their strong points. I would say to try and remember, these are very forward thinking doctors and they are in very high demand. They are well known, and we all know they are among the very few who treat PANDAS. I imagine they are bursting at the seems w/ PANDAS patients. If DS is about to run out of an rx, I put urgent in the title. I always get a reply. I use my "urgents" infrequently and only when I absolutely have to. I have averaged having a consult once every three months.
JackZ Posted April 28, 2011 Report Posted April 28, 2011 Dr T is a very nice man and he is a very nice doctor and he cured my son. If you have to reach him email him, email him again and then call him if its an EMERGENCY!! Don't call him for basic things or else the people who have an actual emergency will have there kids suffer.
Jessy982 Posted April 28, 2011 Report Posted April 28, 2011 Dr. T. is a great man and he diagnosed my daughter with PANDAS and hes steadily helping her out. I have seen no problems whatsoever in the time of her infection from Dr T.
Zmom Posted April 28, 2011 Report Posted April 28, 2011 I would like to "chime in" on this discussion. Dr. T. is not only a brilliant doctor, but a compassionate and wonderful human being. He has gone above and beyond what any physician would do for a patient. He has returned my panic called late at night and on weekends (even holidays). He has "seen us" for emergency appointments on a Sunday and or the same day as a crisis. The "key" to getting in touch is using the word "URGENT" or "EMERGENCY" sparingly. Yes, there are times it takes a while for a response, but the true emergencies are called back on immediately! We parents are here to be a resource for each other, for support and venting. Dr. T. who is not only on the front lines of trying to cure our children, but is also working to try to prevent other children from experiencing what we all go through. The research is the important stuff. The sooner more research is done, the more accepted the PANDAS diagnosis will be. I commend Dr. T. for what he is doing for all of us. He is a true healer, not a business man. Sometimes not being business savvy makes the best doctors, but frustrates us as consumers. My email is pandas.livingston@gmail.com and I would be happy to share experiences, vent, and communicate with anyone who wants to. My son who is in what we call "remission" (since November) would also be happy to correspond and answer questions. He is one of the older ones (17) who was diagnosed about a year ago by Dr. T. The positive diagnosis and treatment has made a huge difference in our lives. Our family is thankful for Dr. Trifiletti!!!
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