Anyone know where Dr. T is?

[MomWithOCDSon]

I get the frustration with a doctor who appears unresponsive, especially when you need him most. However . . . I feel the need to express an opinion. Can I encourage everyone to take their "gripes" about any particular doctor to PM, rather than in public? New folks who come on board and want some "inside scoop" on any doctor they're considering could do the same, so the necessary and appropriate information and support can still get where it needs to go . . . just more quietly.

 

Dr. T. is one among a few doctors, Achilles heel and all, who has stuck his neck out repeatedly to try and help move the diagnosis and treatment of PANDAS forward. However imperfect his methods and communication, he has nonetheless helped many.

 

But not unlike any number of practitioners in any number of fields, he is not the right fit for every body. But I'm guessing that many of us know that upon a first meeting with a doctor or a dentist or whatever . . . you walk into the office and the receptionist isn't friendly, or the environment feels "tired" or dated, or they've misplaced the lab work you faxed over in advance, or your dental x-rays have gone missing, or the doctor is running an hour behind schedule, or whatever. And something is a "red flag" for you, right off the bat. These things rarely occur in a vacuum; you can usually see some of it coming. But maybe, when it comes to docs who may help us in caring for our PANDAS kids, we're willing to overlook more of the things we'd typically expect from a professional environment/provider in exchange for hopefully finding someone who will help us set aside our "desperation." Because, as well all know, these guys are rare.

 

In the end, though, it doesn't seem entirely fair to lambaste one of these providers after the fact, and in the public square. So I'd like to suggest that you express your dismay/disappointment directly to him and/or his office. PM another forum member with a similar experience so they know they're not alone. And, ultimately, if you feel that the cons outweigh the pros, and you cannot tolerate the "trade-off" regarding the shortcomings versus the support you get from any provider, it is probably time to move on and find someone who fits/serves your needs better. I know in the PANDAS world, that can be much easier said than done. But "bad-mouthing" a provider here doesn't, in the end, fix any problem or solve anyone's need; and it potentially drives a needed provider, however flawed, out of the fold. He'd be better for hearing directly from you how he or his office has let you down, so that he has a chance to make changes, if he's willing and able. And if he's not, well then, you have your answer there, as well.

 

Sorry . . . don't mean to come off as the "school marm." I just think we need to be as constructive as possible, whenever possible.

 

Everybody hang in there!

Edited September 18, 2013 by MomWithOCDSon

[Guest]

But I feel like it's important for others to know our experiences so the same thing doesn't happen or so consumers can be better prepared. People have done the same with doctors at NYU on this forum and I was actually glad to see their experience and take that into consideration.

 

Nothing I've posted here has been exaggerated, it is completely factual information. I have heard the same things from many other patients too, which is sad. I do think that someone needs to let him know, but ultimately as I said before, the office, the staff, the communication, is ultimately the doctor's responsibility.

 

I think with shaping up of all these issues, he could help many more people.

 

I also hope this information can be relayed to him somehow.

[airial95]

I both agree and disagree with MomwithOCDson. I do think it is important to protect the few docs we have, but I think there are a few caveats to that.

 

First being - it should apply equally across the board (and I know you agree with me there). All to often some docs are protected where others who are also well respected pans experts are openly bashed because they were too cautious, too aggressive, don't test deep enough for Lyme, etc... with no one speaking up. It should be uniform across the board.

 

Second: I feel like we should be far more private about treatment protocols and insurance coding than anything. That's the type of thing that is going to get noticed and get them into trouble - not administrative hiccups. Not only does this cause problems potentially with insurance companies and state boards, it can cause problems for new parents. Each doc does treat differently, and has different "protocols" - but one thing that is not reflected often enough is that most (if not all) of the good pans docs treat the individual child and individual symptoms case by case - so what they did for my child may be totally different than what they do for others based on individual circumstances. We often see people gripe because "they heard Dr so and so does IVIG but he won't order it for my kid" - no two patients are alike and none of these experts take a cookie cutter approach.

 

On the other hand, its precisely the type of administrative problems and overall impressions I feel should be shared, it protects the docs from scrutiny for treating outside the "box" (long term abx, etc) but gives people an insight into some of those red flags prior to choosing an expert. Many of these docs don't take insurance, and many people cannot afford costly payments for initial appointments just to find out the doctor is not responsive, or difficult to get labs and refills from, etc...

 

Ive been around here long enough to see this pattern repeated over and over - one doctor becomes the "doc du jour" that is overwhelmingly recommended, and gets flooded with new patients. They all genuinely care about helping our children and become overloaded, which leads to scheduling patients months out, difficulty in getting a hold of them, unresonpisveness in general. Some have even had to go so far as to stop taking new patients. And then collectively a new "doc du jour" is chosen, the pattern repeats, and the last popular doc can catch up.

 

When we constantly only post good positive experiences with doctors, instead of balanced reality based info - it props them up to unrealistic proportions, and sets up new parents foe disappointment when dealing with them.

 

That's just my option in, and you all know what they say - opinions are like @$$ holes - everybody's got one!!

[T_Anna]

This board is about learning and supporting.

 

In July, I posted a negative experience about a specific doctor in NY and I learned from the experience. My comments had hurt a member and I had made generalities about about the doctor, staff and hospital. It was wrong. My experience was fact, but not my inferred "warning" to others.

 

The forum was supportive, in the end everyone will have to make their own way.

 

I have received many PM's with treatment and doctor suggestions, that is the best way to get honest and relevant information IMO.

 

My issue with paying for calls:

If I call a lawyer, I pay by the minute.

If I hire a mechanic to work on my car, I pay by the hour (+ parts).

If I make a call/appointment to talk to a doctor it's the same.

 

T.Anna

DS15 - who didn't tic last night (2nd pill of minocycline), too early, but I figured some good news is good too.

[nicklemama]

Herein lies the problem.....too many kids with PANS, too few doctors who know how / are willing to treat. They get overwhelmed with patients. Dr T tries to see everyone quickly. You must wait months to see a couple of the others. None of the others are available for the volume of phone consults as Dr T. He takes on too much, out of the goodness of his heart. His office staff leave something to be desired, as we've heard and I've heard similar complaints about the other's staff.

 

We all need doctors available now due to the nature of our children's illness. There aren't enough docs to go around and have it now, unfortunately. I encourage every one to continue to search locally for help. It has taken me three years and many dead ends, but I finally found someone willing. Now I'm not under even more additional pressure worrying about contacting my doc and will she/he get back to me. Keep looking while you are using one of the big names and maybe you will find that needle in the haystack.

 

I would also like to remind everyone that any doctor who is treating PANS is sticking his/her neck, reputation and medical practice on the line for our children. We cannot afford to lose one of them.

[otksmama]

There are certain standards of care and ethical practices that must be adhered to from any healthcare provider, regardless of any risks they are willing to take upon themselves. I will not accept sub-standard care for my child. I do not have endless resources to doctor shop, particularly among those who do not take insurance. Dr. T told us to follow up with him after 10 days of antibiotics. We did, multiple times, without response. His secretary informed me I should get a refill and continue to administer them to my child. She is NOT authorized to do this and if anyone will get him into trouble, it is this person. Unless she, too, is a registered healthcare provider of some sort and I have yet to learn of this fact. In the meantime, I see no one here "lambasting" Dr. T. I'm sure he has all but good intentions as a human being, but that is not what I've paid money for. Someone made a comparison to paying for other services. Again, word of mouth gets around the community about people with good business practices. We learn the good and the bad and have the opportunity to make our own informed decisions before we get our cars repaired, do we not? Why are we not doing the same when it comes to our children's health? I am not here to harm or destroy anyone's reputation. At the same time, I will share what I've experienced with others so perhaps they can make informed decisions as they begin in this journey. This CAN be done in a respectful way. If anyone was like me when this exacerbation hit, I was in a panic and did not know what to ask. My mission was to get help. I would not have thought to ask questions in a PM type of forum. I needed to act and act quickly, and sometimes a quick check of the forum is the best I can do. I have no qualms in sharing my disappointments with anyone directly. But how do I do this when he won't respond to my efforts to communicate?

[airial95]

I didn't mean to imply I have a problem with DR's charging for phone calls, quite the contrary, T.Anna I quite agree with you (and as a consulting engineer who bills out $150/hr I too must charge for phone calls).

 

My point was that many folks don't have unlimited resources to pay out of pocket for multiple docs to find the right fit and just to find out if red flags are present so sharing administrative issues and overall generally impressions/opinions is s good resource for folks.

 

And I couldn't agree with nicklemamma more - keep looking for local help. Too often I see here and in other forums where new films say their ped dx'd and are willing to treat and they are overwhelmingly encouraged to not waste their time with the local doc and run to the experts - which leads to the overload of the current docs and continuning lack of local knowledge. Our ped dx'd our son, after 6 months we called in an expert to consult, after 2 years we called in a second expert. Our ped remained our goto guy the whole time. He wqs always available and while he would call our experts, he would never hold off treatment waiting for a response. Now my ped is just as knowledgeable as the experts, and every other specialist we work with are amazed at how well he handled our case. 4 years ago here, folks were encouraged to work with their local docs first if they were open and willing to learn. Now the immediate response is to cut and run to the precious few experts. We're creating an unsustainable pattern where we overwhelm the docs above without bringing new docs into the fold to learn and treat.

 

And because I knew I had a responsive ped, learning the limitations of the various experts here (too conservative and difficult to get a hold of when needed, respectively) I chose our experts based on our needs and what we could tolerate. If we didn't have our local support, a doc out of state that is difficult to contact would not have been an option for us.

 

Full disclosure - we have never been a Dr. T patient so none of this is a direct reflection, just my opinions and personal experiences.

 

And now I will try not to fall of my soapbox.

[airial95]

Sorry for all the typos...typing from my damn smartphone. Considering it auto corrects everything incorrectly, why is it called a "smart"phone?

[qannie47]

Feel I must chime in here..How can he just "drop" somebody who is suffering. That is just horrible. Sorry, but when I read this thread it really burned me up. About 3 months ago, when I was considering getting a second opinion, and called his office. I wanted to speak with him and we set up a time for me to call back. Then I was notified that this conversation via telephone was going to have to cost me $250. pre-paid. I promptly said , NO THANKS. I later got an unsolicited call from Dr. Lechtman out of Yale. The man called me himself. He had heard about my ds from his research team. His message said, " I have heard that you have a son with Panda's and that you have some questions. I would like to talk to you and see if I can be of help and answer any questions myself for you. Here is my direct number...." I called him, he answered, and spent a half hour on the phone with me. NO money, just genuine concern and a desire to help. That is the kind of doc that I would entrust my sons health with. I've called him one time since then, and again, took my call, and talked with me. no. $$$$$ I only tell this story because I just have no tolerance for a doctor who could leave any child/concerened parent hanging. It is his job to have protocol in place for his patients when he is out of the office, or whatever.

[tpotter]

I have held off making comments on this thread, but feel I need to. I personally do not have a problem with a doctor charging for a phone consult, especially when in private practice. Dr. Lechtman works at a research facility and, I believe in charge of the IVIG study, so I can understand how he was able to offer free consult services. I don't think anyone here would question any of us wanting to be paid for any type of work we provide.

 

But, I also think this is getting off topic.

 

I have been hesitant to get involved in this conversation, because I truly believe that we are all going to have different experiences with different doctors, and that we need to be careful about what we say about any of them, because for the most part they have stuck their necks out for us.

 

But, that being said, when there is a common problem, such as not returning phone calls, I do believe it is important for people to be aware.

 

Yes, I have had this problem with several doctors, and wasted way too much crucial time and money and only increasing my own stress by waiting for responses that were never going to come. And, that was when there were no other PANDAS docs. There really is no excuse for that.

 

But, what I found several years ago, when I had this problem, was that when a question was posed, I would PM whoever asked the question, and let him/her know that I had some personal information to share. I would then note on the thread, that "I PM'd you." to let that person know to watch for it.

 

I agree with Ophelia22 that people need to, and deserve to know, and that none of us can afford to spend the time or money chasing drs. who may be a problem. But, I also think that there are ways that we can provide that information privately.

[tpotter]

Ooops...it posted twice.

Edited September 18, 2013 by tpotter

[Guest]

All of this information is something I wish I'd known before-hand. But if the consensus is to share it privately, I will do that next time. Complete compliance here!

 

 

Though I am speaking as the VERY sick patient. You can't imagine how difficult and stressful it was for me to make the constant phone calls, write the emails, send the faxes, try to keep my phone on even if it wakes me up b/c I HAVE to get that phone call - it will be my only chance. And to feel like I was dropped, it was very hurtful, and I've since gotten much more sick.

 

I can't drive either so I had to get people to drive me to the lab over and over and over and it made me really sick. So I think my perspective is even more unique as the patient because I don't have someone making the calls for me.

 

In regards to local stuff, I've exhausted ALL local resources for the past decade without any smidgen of help. My city is just really lame on rare diseases and complexity, really lame.

 

Didn't mean to hurt any feelings.

[qannie47]

I Really don't get in the habit of posting such negative posts, it just hit a nerve...I hope I did not offend anyone. This has always been a very positive forum.

[MomWithOCDSon]

Ophelia, Qannie and others --

 

I can only speak for myself; I was never offended. I do truly empathize with everyone here who's had trouble getting treatment, who's had trouble feeling as though ANY doctor "gets it" or cares or has the time and resources to care "enough." This PANDAS/PANS thing stinks, and the scarcity of caregivers only exacerbates the problem.

 

And I don't condone doctors who are unresponsive, unreachable, hopelessly disorganized, employ unprofessional staff, etc., either. But I guess I vote with my feet, as it were, and I'm usually pretty vocal (if you can imagine ;-) ) with the actual office, as well. I feel as though that's a better "bang for my buck" in the end.

 

I don't want to "silence" anyone, and I'm not suggesting that providers with deficits should not be identified, either. But if we do it one-on-one, via PM and the like, there's less opportunity for "information" to morph into the realm of "gossip" or "venting," and personal experiences and impressions of a handful of unhappy people to "outshout" the other handful -- or potentially more -- whose experiences were far more positive. Again, despite the issues, this doctor and others who've faced their own share of criticisms have, in fact, helped many, many people, but those families are not necessarily active on the forum any longer. So we wind up with what I think is a somewhat "unbalanced" representation in the end.

 

So I like tpotter's post/PM methodology. :-)

[tpotter]

I don't think anyone is offended, in fact, this has been one of the lesser "negative" postings over the years (lol). In fact, it didn't even result in being shut down...that's pretty good, if you know what I mean!

 

But, although I realized that I had to let others know some of my experiences, because they were so bad, I think that if we all decide to PM 1 or 2 people who post about questions about docs, then parents and patients will get the message, and we won't have to do it publicly.