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Hello All,

Some of you might have read my recent regarding locating a doctor in the USA. As I mentioned before, I am living in Saudi Arabia and my 10 year old son seems to fit the PANDAS diagnosis, although he has not been officially diagnosed and has not yet received any treatment other than psych meds from a doctor here. Recently, he was in a bit of a remission and then he was sick with high fever followed by skin rash and all his symptoms, especially severe anxiety, have come back. This is when I started looking for a doctor in the US. I contacted two doctors by email, asking about a possible telephone consult. Both doctors responded promptly, but I had decided to talk to Dr. K because he is in Chicago, which isn't too far from my family in Cincinnati. He asked me to call his secretary to make an appt. However, when I called her, she immediately told me that it would cost 500USD, which is fine, but then she went on to say that they ONLY accept a check or money order. I explained to her that I am outside the USA and it would take a long time for a check to arrive, couldn't I pay by paypal or something. She said no, and that it would most likely take AT LEAST 10 days anyway before Dr. K could even speak to me. I told her that my son is currently having a severe exacerbation(he has stopped eating again)and I wanted to talk to Dr. K quickly to see if there are any labs etc...I should have done while he is in the middle of an exacerbation or even bring him to the US. Her response was, "what makes you think he has PANDAS???" . I have to say I was a bit put off by all this. So, she then suggested that I email Dr. K again and explain the situation and see if he has any suggestions on what I should do ( wait around for a telephone consult, come to the states, etc...) I did email him right away, but so far no response. However, I just sent the email so he probably hasn't seen it yet. The problem is that since my son has stopped eating I am going to have to take some kind of action soon. His psychiatrist said we will be forced to put him back on antidepressants if he doesn't eat. He just got off them a couple months ago. I was hoping to get a quick treatment plan and maybe avoid that. Now I am not sure what to do. Is it always this difficult??? Anybody out there a patient of Dr. K??? I am not sure whether to wait it out for Dr. K or try the other doc??? Any suggestions?? Thanks!

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We contacted Dr. Trifiletti by phone and email and he was fantastic. Responded immediately, held a telephone consultation, and prescribed meds and lab tests that we could start right away.

 

I have heard from others that he prefers meds over IVIG. I don't know if that's true. Since I don't want to go the IVIG route at this point, that was fine by me.

 

Here is his contact info.

 

He is in New Jersey, so "doable" from Cincinnati if needed. The Jersey Shore in summer is lovely (IMHO, but I'm from there!), if you need an excuse to go there.

 

http://www.site.neurokidsr.us/

 

-- lfran

 

 

Hello All,

Some of you might have read my recent regarding locating a doctor in the USA. As I mentioned before, I am living in Saudi Arabia and my 10 year old son seems to fit the PANDAS diagnosis, although he has not been officially diagnosed and has not yet received any treatment other than psych meds from a doctor here. Recently, he was in a bit of a remission and then he was sick with high fever followed by skin rash and all his symptoms, especially severe anxiety, have come back. This is when I started looking for a doctor in the US. I contacted two doctors by email, asking about a possible telephone consult. Both doctors responded promptly, but I had decided to talk to Dr. K because he is in Chicago, which isn't too far from my family in Cincinnati. He asked me to call his secretary to make an appt. However, when I called her, she immediately told me that it would cost 500USD, which is fine, but then she went on to say that they ONLY accept a check or money order. I explained to her that I am outside the USA and it would take a long time for a check to arrive, couldn't I pay by paypal or something. She said no, and that it would most likely take AT LEAST 10 days anyway before Dr. K could even speak to me. I told her that my son is currently having a severe exacerbation(he has stopped eating again)and I wanted to talk to Dr. K quickly to see if there are any labs etc...I should have done while he is in the middle of an exacerbation or even bring him to the US. Her response was, "what makes you think he has PANDAS???" . I have to say I was a bit put off by all this. So, she then suggested that I email Dr. K again and explain the situation and see if he has any suggestions on what I should do ( wait around for a telephone consult, come to the states, etc...) I did email him right away, but so far no response. However, I just sent the email so he probably hasn't seen it yet. The problem is that since my son has stopped eating I am going to have to take some kind of action soon. His psychiatrist said we will be forced to put him back on antidepressants if he doesn't eat. He just got off them a couple months ago. I was hoping to get a quick treatment plan and maybe avoid that. Now I am not sure what to do. Is it always this difficult??? Anybody out there a patient of Dr. K??? I am not sure whether to wait it out for Dr. K or try the other doc??? Any suggestions?? Thanks!

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My frank assessment is, despite being on the cutting edge of the PANDAS field and very responsive via email, Dr. K.'s office is a little "old fashioned" in the way they do things, particularly administratively. Other than email, I don't believe they maintain computer records, Dr. K. is not a "member" of a national lab group (Quest Diagnostics) where we had our lab work done, though most every other doctor in our metropolitan area is, and when we received our bill for the remainder of his fee that went unpaid by insurance, it was handwritten on one of those "triplicate" pads with carbon-copy qualities. Meanwhile, every other medical professional we've seen in this ordeal generates records and bills via computer, etc.

 

That being said, not ONE of our other doctors is reachable via email, and Dr. K. has always been very responsive to us in that regard; I don't believe I've ever gone longer than a couple of days without a response, and that includes the time period before we were even among his official patient load. So, though his administrative staff may not be entirely "modernized," I would take her suggestion to move past her and email Dr. K. directly.

 

In addition, as noted by Lfran, I know Dr. T. is very responsive, also, and might be a good alternative for you. Good luck!

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Many thanks to Ifran and MomWithOCDson for your suggestions. I called Dr. Trifiletti's office yesterday to see how long it would take to get an appt. for a telephone consult and he actually answered the phone. I thought I had the wrong number there for a minute!! He was so nice and spent some time talking with me. I have an appt. to speak to him again tonight for the actual consult. So, I am cautiously optimistic that I can start working on something that might help my son. Thanks to everyone for all the helpful posts.

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