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Anyone know where Dr. T is?


JPdad
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I think it's kind of his thing to not return calls or emails, isn't it? I mean he diagnosed me then I never heard from him again. I tried: calling, faxing, emailing and leaving messages, I wouldn't ever get a response. I realized that this was not going to work if I was put on ivig and serious stuff.

 

Anyways, I think it's his modus operandi to never get back to people and it feels like I was "dropped" by my doctor.

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I don't want to say anything negative about the guy because he has helped my son very much, but his office is easily the most unprofessional doctors office I have ever encountered or heard of. Beyond not taking insurance, they don't even have a personalized answering machine message. The receptionist (Silky I think she calls herself) is not helpful or professional at all to put it mildly.

 

It's just very unprofessional and dissappointing to leave for weeks on end and not have somebody there to cover your practice and refill prescriptions for sick kids.

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I didn't want to say anything about the receptionist, but she is the worst I have ever encountered and I think it is a direct reflection of the doctors - he is the one who hired her and he has the power to shape up his office and hire the right people but doesn't. I wonder Why!?

 

My psychiatrist has 7 people on staff and it runs beautifully: 3 people working the front desk and answering phones, one girl filing all the times, a nurse in the office returning calls at ALL TIMES and filling prescriptions, and a P.A. seeing patients, plus a social worker who comes in 2x's a week to do referrals and other business. There really is no excuse.

 

As a sick patient, I could not keep up the task of constantly emailing, etc. etc.

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Dr. T has helped us tremendously. He was the one who prescribed the medication that turned things around for my son but as someone posted earlier, we have had some communication i. e not getting my message through (email etc...).

 

There have been a few times that I have been patched through to speak with him as I have had a question and didn't get through via email, but mainly our experience is that we need to book another appt/consult to have our questions answered.

 

That being said, he was the one who ran the tests we needed to figure out what was going on with our child, is very knowledgeable and you can get an initial appt quickly, which we desperately needed at the time.

Edited by cobygurl
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Agree with receptionist comments. Just awful.

However staffing issues did not seem to be a problem at all in terms of getting a response from the doctor when we had scheduled (read PAID) appointments. So I guess providing follow up care is not a part of the standard of care you've paid nearly $1000 for for the first two visits!

We were dropped after 10 days of abx, to which there was no significant response. We were left with nowhere to turn for next step.

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I was dropped after trialing valtrex and having a really bad reaction to it after 3 months. I ended up in the urgent care b/c the side effects were so bad. I called and they told me to stop taking it, never heard from them again.

 

@cobygurl I don't have another doctor. I've just been getting worse and worse since taking the valtrex (it didn't help at all). I am trying to get in with a doctor at NYU and one at Mayo but it could be many months before I hear back. There really aren't many adult doctors who understand neuro-immunology + neuro-auto immunity.

 

It was no problem getting the initial appt. and he responded right away to my very first email on a sunday, which impressed me. Never responded again.

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With all that said, I now question my diagnosis from him - very very sketchy situation.

 

Getting my initial lab work from him was the most brutal experience of my life (forgot to mention). I went to the lab 4 separate times and the lab people had to keep calling him constantly for over a month b/c things weren't right in the write up for my blood work. The lab lady would pester him constantly to get simple things done, then when I got my labs they took like 30 vials of blood which made me extremely ill for weeks; it was just a nightmare. I caught something being at the lab so much too.

 

That is why I am not pursuing a "pandas" doctor but rather someone who will look into everything. And I think it's better to see the doctor in person, over the phone did not work.

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I have gotten all my scripts immediately filled by Dr. T if the pharmacy FAXES in their request for the refill. That is how Silky coached me to do it and they haven't skipped a beat if they receive a fax.

 

Dr. T has helped us, but has also dropped completely off the radar over the last 3 months. Virtually no response to urgent emails, phone calls and the like. I too felt 'dropped'. But I understand he has had a family emergency and a deposition or some legal issues to deal with during this time as well. Not making excuses, but I think he takes on too much and he's just stretched too thin, and all of our kids are usually at crisis point when we are working w/ Dr's like him, right? So it's a bad combo.

 

That said he's uncovered some good info for us and ruled out a ton of things as well. All things considered I would work w/ him again.

 

Good luck, and there is a comprehensive PANS/PANDAS doctor directory on the pandasnetwork broken down by state which may be helpful if you are considering changing providers?

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