Dr. T in Ramsey - everybody must read

[PIK]

I asked for further help from Dr. T in Ramsey after having seen him and shelled out a LOT of money for a consult a few months ago. I made it clear that I was not able to pay him further and that I needed his guidance, at least in finding another doctor. I also made it clear to him that the general consensus on this board from numerous people in private messages to me is that [Edited by admin] but I was giving him the benefit of the doubt.

 

While I was there, a father called about his child, and the secretary lied that they were busy with "overseas" calls.

 

What Dr T. and his secretary don't know is that the other person present during our meeting is an attorney.

 

Feel free to PM me.

Edited July 22, 2014 by Sheila Rogers
This post was toned down.

[PIK]

Yes - please feel free to PM me for further info about my expensive and unfruitful visit with Dr. T. It seems that despite being the Land of the Free, this board is monitored and censored.

[Sheila]

Yes pik, this board is and always has been monitored,

 

Though we are sympathetic to your situation, we try to be evenhanded in the public information that is shared about various physicians as well as other people.

 

We have an advisory board that sets policy and we do our best to follow it. Part of that policy is:

 

• Text should not be defamatory, harsh, accusatory, intimidating, slanderous, an invasive of a person's privacy, or violate any law. Doing so may lead to you being banned (and your service provider may be informed). The IP address of all posts is recorded to aid in enforcing these conditions.
• You agree that the webmaster, administrator, and moderators of this forum have the right to remove, edit, move, or close any topic at any time should they see fit.

In particular, though we can't claim to catch every negative post, we try to make sure that material that is against the guidelines does not remain in a public venue in which a person being criticized is not able to defend him or herself.

 

We always appreciate when members alert us to posts that need moderator attention.

 

We felt that the material that was left on your posts after editing was sufficient for you to get your point across.

 

As a reminder, everyone is asked to please adhere to these guidelines, found in full here. Thank you in advance for your help with this issue!

 

Sheila

[WorriedDADNMOM]

pik---I am sorry for your experience. While I have no direct dealings with Dr T, he is an advocate for our Pandas kiddos and He has discussed pandas with our doc, whom is a good one. Many of these pandas friendly docs are just flat out overwhelmed right now. My doc, whom we see, took 2.5 or so days to respond to an email this week. 2011 it was within the same day or early next am. I would probably stand by our doc thru thick and thin no matter what......because he has been so good. Dr T....is a neurologist, but that is only a part of this battle. Really an Integrative Pedi or DAN are the only docs doc that can/are willing to attack this from an integrative, comprehensive manner.......but your situation may be a little different. Keep your head up and keep plugging away and advocating for your kiddos.

 

However I might be able to help, please let me know. If you need anything, please pm me.

[PIK]

I don't think he is a bad person. I just told him the truth about what input I had received from others on this board about him, but that I had given him the benefit of the doubt in going to see him, and he told me not to contact him again.

 

I was very disappointed, or appalled rather, that they tried to get me to pay again to discuss results. The truth is, I did not pay again, he e-mailed me info in the end, but I called like five times.

 

Furthermore, I think doctors fall into a realm of society that don't do what they do for money - thus I feel he was obligated to at least lead me in the right direction as regards medical care, even if he had nothing to gain and actually was offended by my e-mail.

 

I firmly believe I had PANDAS as a teenager as well as rheumatic fever and all associated strep sequelae. I went through a period of hallucinations and psychosis at 28 which seem to be completely unrelated (i.e. helped or not) to what medication I was on. When I mentioned the olfactory hallucinations I had to a priest, he urged me to look into seizures. When I read about "psychic seizures" I was absolutely floored. What was being described is exactly what I had experienced, and I wanted his input. I don't know who else to discuss this with, and who can guide me in the right direction as regards seeking treatment and/or diagnosis clarification, but I'm certainly not going to pay $400 to have someone tell me what kind of doctor to see.

 

My dissatisfaction has a lot to do with my general dissatisfaction with the healthcare system in this country. I think it is unethical for ANY doctor to be permitted to charge $400 for a visit, and to be out-of-network at that. If any patient requires treatment or any type of input, I feel that they should be able to get it. It's a human right, and no one should be able to profit from others' illness and misfortune, and be allowed to hoard any helpful knowledge they might have and be protective of it in such a sickly way.

[nicklemama]

You may feel doctors charges are outrageous and unethical but in this country doctors can charge what they like. In my mind, $400 for an hours service from a doctor who doesn't take insurance and has special training is worth more than paying a pediatrician who takes insurance $150 (less what insurance covers) for 15 minutes and getting nowhere because they have zero knowledge of PANDAS.

 

I understand your frustration but blasting a doctor because you disagree with their charges doesn't get you very far. We do not see Dr T but we do see another doctor locally who does not take insurance. Most of us are in that boat.

[oivay]

I just wanted to say that Dr. T was enormously helpful to us. He went far above and beyond what would've been expected of him, and without him, I think it's likely my daughter would continue to suffer from the debilitating effects of Pandas and Sydenham's.

 

He was the only one who had any clue at all what was wrong with her, and the only one who was able to successfully treat her. (And we had been to tons of doctors.) It can sometimes take a bit of time for him to get back to you, but he always responded in times of crisis. At one point, he even gave me his personal cell number and offered to come to our house if the medication didn't work and I was unable to transport her. He's worth his weight in gold, and I think whatever he charges these days is well worth it. I'd give him the shirt off my back.

[4Nikki]

The CIA says they do not believe in coincidence so if you are trying to figure something out, it's probably a good go by.

 

Initially I sent an email to Dr. T. office to ask for a phone consultation. I was surprised to got a response within first hour. I was sent the phone number to call and make an appointment. I was told the first consult would be $450 and the succeeding would be $300. Seemed reasonable for a office that did not accept insurance. (Which by the way, was promptly charged without invoice/receipt after phone call consult.) Set up the initial consult date. I provided the office with a complete history write-up on DD, blood work, mri etc. I did this to get the general questions and the just of DD's issues out of the way. During the first consult, I had to go over what I sent in the history write-up (I didn't think I would have to do this but then again this is nothing new. I think based on experience, that most people don't read first. So I just chalked it up to a waste of time/money.) Dr. T. ordered a plethora of blood tests. The second consultation, Dr. T sent a copy of the blood test results and a possible diagnosis. He gave advise about treatments explaining it would be good to see if DD responds and said he would do a short follow-up after the treatment was done to determine the next steps which he also discussed as said he would order some blood tests after to recheck levels. This could have taken 10 minutes but the conversation lasted quite some time rehashing, again, what was in the initial history write-up. The follow-up after the second consultation didn't happen. I sent follow-up emails explaining DD's reactions day by day but received no follow-up reply. After repeated calls to his secretary and repeated promises to talk with Dr. T. and repeated promises to return my calls regarding the follow up, nothing. I then proceeded to ask for copies of the charges (invoice, typically business do this without asking before making charges or at least provide a receipt) I wanted the receipts so I could try to get some reimbursement from my insurance and set up another paid consultation to get the follow up treatment. Ah, about 6 weeks after, I was sent the copy I requested in the mail but only the invoice for the last charge.

 

Now all of this could easily be explained, if this were say a poor office manager, but whatever the case, it became clear to me that the office "policy" is not make any phone consultation appointments, even for a few minutes, without their being a charge involved. (I premise this conclusion by the first statement and grief over trying to make follow up.) I can't say that this is completely unethical on Dr. T's part, but I will say for someone to have a persona helping our kiddo's that the office policy certainly appears to be apathetic. My general perspective is, If you have to do so much to figure something out about a business, I would suspect something. My first thought is that it's his staff sucks at managing the business but I couldn't tell you what's truely amiss about his office.

 

With what seems to be his current policy, I would recommend, if you need to consult Dr. T and have to use the phone, that you plan on having a budget of at least $1200 to get you though the initial diagnosis and treatment. Budget much more, if your going to have him start from the beginning.

 

Did Dr. T. Help? I'd say yes. but he didn't do anything beyond any other doctor we have seen other than having seemly having more experience with DD symptoms. Is he worth it? I'd again I'd say yes, but only because we have something to chase at finding tangable help for DD.

[SSS]

We pay for our healthcare in this country (US).

 

My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN,

 

we only get 80% of every insurance approved Dr. appointment/hospital stay covered.

80%! Last year it was 90%, now 80%.

 

Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said:

She has PANDAS. I can't help you.

 

He billed our insurance company I don't know what, but I got my 20% bill for around $80.

So, $80. bill, after my monthly fee, $2,500 deductible, for a 15 minute conversation of:

Can't help, bye-bye.

 

So you see Pik, welcome to American healthcare 2014.

It is what it is.

[4Nikki]

SSS most any of us have the same story about doctors that don't know what to do. Even the ones that are eager to start but give up. As parents we are the voice of our children. We need to Do our due diligence in seeking a doctor that can help. There are some, even some that are part of the group insurance. When you find one that is unavailable, "I can't accept any more patients" insist! DW, can get overly passionate at times but it produce results. I have similar health plan. The FSA account really helps, only this was my first year and didn't put enough into it. DD already reached the maximum out of pocket by the third month and we don't pay deductible s any more for the rest of the year.

Edited July 25, 2014 by 4nikki

[WorriedDADNMOM]

I want to 2nd what Nicklemama said......."You get what you pay for" and a little spin on it..."you don't get what you don't pay for"

 

I told an ID doc to take roughly 800.00 worth of bills and "stick them anywhere the sun won't shine"....pretty much that way. I even told our initial pedi, whom charged me after insurance a 100.00 bill the same thing for telling my dd to put a smooth rock in her pocket to deal with the post strep and EBV anxiety. This is not health care as it should be. I have spent roughly 15k on a good doc for tests, visits, supplements with good results for three kiddos. I refused payment on about 1000.00 to docs who gave me NOTHING. You tell me where the value is. I have said this before, how can you put a value on your child being happy, healthy and thriving.......or even your family functioning well.

 

Also, when we are not in control of the money(insurance co is) your not paying, so the docs are not beholden to you as a patient....but to the insurance company. Thus, you don't get the care you may need, want or deserve.

 

SSS-----you have a good plan....my plan is 900.00 a month for as 12k deductible.....Gotta love and thank Obamacare!!!! 120% increase in monthly premium and 20% increase in deductible.However, If I were you.....refuse the payment for failure to render services.

 

PIK-----unethical is allowing insurance companies and the govt to dictate and or deny care (think Justina Pelletier) that is deemed necessary by a doctor and a patient wanting it. I would argue these doctors helping our kiddos are far more reasonably priced than ones that are charging insurance companies 3 times that amount and settling on whatever they can get for poor/no service and poor health outcome.

 

4nikki------amen......If we won't fight for our selves and our kiddos, no one else will.

 

pik, I know and feel your frustration. However, you really need to think about the hoarding of info. It is not the docs whom are treating pandas. Our DAN Integrative pedi has been very forthcoming and thorough. But our initial peds said......You gotta get all these specialist on board....I was not on board......I just wanted to try long term abx, as we had seen improvements on it. IMHO....your demonizing the wrong people...

 

Finally........If and when we go to a single govt payer health system.....we will be in trouble. Then, you will have limited choices and I would think many of the alternative docs will be run out of business due to taxes being too high and not enough funds by regular folk to pay for their services........unless your uber wealthy....like congress or Hollywood......

[DanL]

Dr T was helpful. Emailed and got a response quickly. Set up a phone consult couple days later. He response to emails. Cost $450 and ordered blood work.

Seems like he cares

[afsml]

Sorry about your experience. So far Dr. T is one of the only MDs who responded promptly for my pleas for help. He gave valuable advise and helped me get started in getting treatment for my son. I would discuss your concerns with Dr. T. So far I have found him to be caring, patient, very hard working and truly committed to helping people.