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Anypne interested in trying to get Dr K to visit us in the northeast?


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I did a phone consult about 4 months ago with Dr K and was very impressed with him. We would like to consult with him again, but flying out to Chicago is too costly at this time, and a phone consult goes for about $325 - $350.

 

I was wondering, if there's enough parents out here in the Northeast (NJ, NY, PA, MD etc) who would be interesed in seeing him but can't afford to fly out to Chicago, maybe we can fly him here? If there's enough parents who are interested, maybe we can fly him in and set up 6 - 10 appointments in one day? I haven't asked him yet, but was first wondering if there's any interest from our end?

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Pesonally, if I lived in the Northeast I'd probably just head over to Dr. Latimer (or potentially Dr. Leckman if I were near CT). One nice thing about Dr. Latimer is that she seems to have good sucess with getting PEX/IVIG covered by insurance. I think the track record of coverage with Dr. K. has been a little more hit/miss...that's my impression at least.

 

There's also Dr. Trifiletti in NJ...although I haven't heard from parents that have seen him much.

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I agree withbx EA Mom.

 

We are from NJ and live in DC. We see Dr Latimer regularly, and are scheduled for pex. Insurance is covering it! She also will do IVIG, abx, and steroids (all tailored to your case). We have also seen Dr Trifiletti in NJ. He is very knowledgeable and experienced with pandas (has a 21 yr old patient he has been treating since she was really young). He will def do abx and steroids, now that he is in his own practice, maybe he would do pex or ivig (at Columbia, or maybe Georgetown?).

 

Both doctors are extremely compassionate.

 

There is also a well regarded DAN Dr in Stockton, NJ Dr Stuart Freedenfeld, who told me he treats many pandas patients. Then of course Saving Sammy's Dr Nicolaides.

 

If you are in the NY/PA/DC area you are actually better off than most!

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Then of course Saving Sammy's Dr Nicolaides.

 

Although I have heard she hasn't actually treated that many PANDAS patients. Also, she just uses Augmentin...no pex/ivig/steroids (probably no azith if augmentin doesn't work) etc. I would suspect she would also have a long wait list after the book. I don't know if anyone would really have much to gain from seeing her if you can get your own ped to write a script for high doses of Augmentin.

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Dr. Leckman won't "treat" pandas kids. He referred us to an excellent immunologist in Darien, CT one hour from NYC. His name in Dr. Denis Bouboulis. We did first ivig in Chicago with Dr. K in August and just completed our second with Dr. B today. He is very compassionate, believes in pandas and does emails and phonecalls. He consulted with Dr. K for an hour to learn more about his protocol, etc. We are Dr. B's third pandas case. The nurse who attended to us today was sweet...I asked her, "Do you know much about Pandas?" She said, "Nope, but I am learning very quickly." She was treating 2 others pandas kid at the same time.

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Dr. Leckman won't "treat" pandas kids. He referred us to an excellent immunologist in Darien, CT one hour from NYC. His name in Dr. Denis Bouboulis. We did first ivig in Chicago with Dr. K in August and just completed our second with Dr. B today. He is very compassionate, believes in pandas and does emails and phonecalls. He consulted with Dr. K for an hour to learn more about his protocol, etc. We are Dr. B's third pandas case. The nurse who attended to us today was sweet...I asked her, "Do you know much about Pandas?" She said, "Nope, but I am learning very quickly." She was treating 2 others pandas kid at the same time.

 

Hmmm...I heard from another poster a little while back that their child was on Azith. and IVIG from Leckman. Well, as long as he is sending you somewhere good! I think there is a thread of helpful pandas docs....maybe you could add this guy to the list.

 

You might also e-mail Diana Pohlman at pandasnetwork.org I think she is has a list, so she can put him on it.

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What an amazing idea. I would like to ask others in the forum from the west coast that would be interested in flying him here after he goes to the NorthEast. Has he done this for other people? I have not been able to find anyone here on the west coast that is really knowledgeable about PANDAS.

 

This was really a good suggestion.

 

 

I did a phone consult about 4 months ago with Dr K and was very impressed with him. We would like to consult with him again, but flying out to Chicago is too costly at this time, and a phone consult goes for about $325 - $350.

 

I was wondering, if there's enough parents out here in the Northeast (NJ, NY, PA, MD etc) who would be interesed in seeing him but can't afford to fly out to Chicago, maybe we can fly him here? If there's enough parents who are interested, maybe we can fly him in and set up 6 - 10 appointments in one day? I haven't asked him yet, but was first wondering if there's any interest from our end?

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yes, I was just going to say the same thing. It would be certainly okay for just consult and conferece type thing, but he may not be able to prescribe anything outside of his state. I'd think he'd actually have to set up shop so to speak, with some other doctor's office.

 

 

 

Faith

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Copied the whole post and sent it to Diana.

 

Thanks. I wonder what is up with Dr. Leckman.

Hi - We saw Dr. Leckman in August, prior to seeing Dr. K. for our first ivig. We were "interviewed" at length for about 4 hours at Yale by him while one of his staffies played with our daughter. He believes in Pandas, but I don't believe he has seen a full-blown pandas case until my daughter....oh, lucky him! Anyway, he did not offer too much, other than verbal support, and told us we were probably doing the right thing making the trip to Chicago. Yale does not do ivig for Pandas at this time. Dr. Leckman was trying to get research funding for a study on pandas, but the cash never came through, so that's why I think he's kind of done. There may be other politics. He was very helpful to us giving us abx and pred until we could do ivig, so I will always be very appreciative of that, since no other blockhead doctor was willing to up to that point. Sorry for the sarcasm...I'm a bit tired today. Anyway, i send him updates on my daughter periodically, per our agreement.

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He was very helpful to us giving us abx and pred until we could do ivig, so I will always be very appreciative of that, since no other blockhead doctor was willing to up to that point. Sorry for the sarcasm...I'm a bit tired today.
:lol: I love that term "blockhead doctor"!!

 

Geesh...so Leckman can't do IVIG unless he's got a study?

 

I know for a while he was talking to other docs...helping people to get abs. I wonder if he's still doing that?

 

Anyway, i send him updates on my daughter periodically, per our agreement.

 

good! maybe he'll learn something from her.

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