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PANDAS specialist NYC area?


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My DS (14.5) was diagnosed in November 2012 with PANDAS and OCD. We are working with Dr. T for the PANDAS and seeing a CBT therapist for the OCD. Lately, I have been getting frustrated with the haphazard mishmash of treatment.

 

Unfortunately, Dr. T has been going through a family crisis and has been impossible to reach. The CBT does not seem to be helping anymore. He is still stuck in the bathroom for 1-3 hours a night and his showers are reliably 45 minutes, which means that he doesn't get to bed until 2-3am (especially since we are at the therapist 3 times a week until 9ish). He is currently not on ANY meds beside the Luvox (motrin and culturelle). We ran new blood tests that are currently sitting at Dr.T's office and that I am begging to have sent so I can at least compare them with tests run 2 months ago.

 

We are desperate to help DS quickly. As you know it is so hard to watch him miss school so often (especially since he loves going), but as the week progresses he has a harder and harder time fighting the accumulating sleep deprivation.

 

Questions:

1. What PANDAS specialists are in the greater NYC area (besides Dr. T)?

2. What centers for CBT have people used and loved (I'm willing to travel with him and do a intensive program, if it works)?

3. Any other suggestions?

 

My lay diagnosis is that DS (who wrestles) is being exposed to many illnesses (everyone seems to be sick) and should be on some prophylactic abx at least. The CBT therapist, who is well versed in PANDAS, thinks it's that DS is a perfectionist and obstinate. This is dragging on and it's not fair to DS if there is more/different that we can try.

 

Thanks for reading.

T.Anna

DS 14.5

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Dr. Denis Bouboulis in Darien and Stamford, CT. He will get you what you need. I suggest a multidisciplinary approach which has worked beautifully for us. We see Bouboulis, Latimer, Elia, O'Connor in CT, MD, DE and NC respectively. Traveling is par for the course and at least Dr. B is not too far out of NYC. Worth the trip. Website below. Warm wishes, Kath

 

http://www.advanced-allergy.com/

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Thanks.

 

I don't mind traveling, but why consult with four? Do they all treat different issues or have different expertise?

 

Who would you start with? Honestly, it seems crazy that in all of NY metro area there are zero PANS specialists.

 

Sorry about the direct questions, just loosing my sanity.

 

Thanks again,

 

T.Anna

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T.Anna --

 

For the best in intensive ERP therapy, I would contact Dr. Eric Storch and the University of South Florida Rothman Center. He and his team are the best in this respect, and many families here who've gone down to the program have experienced wonderful results.

 

Depending on how quickly you can get in, you might also make an appointment to see Dr. Murphy, also at USF, while there; she is a noted PANDAS/PANS specialist.

 

For NYC, unfortunately, I don't know any others beyond what you've already tried and has been suggested. Did you check the Pinned Threads here on the forum? There's one titled "PANDAS Doctors Who Have Helped Us," and there might be a name or two there that hasn't "hit the mainstream," so to speak.

 

So sorry things continue to be hard for your DS and you. This condition totally stinks. :(

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We are Dr B too, we have other docs for Lyme, supplements etc. the team approach seems to work best. We have a great group that does CBT in white plains, if its close enough I will pm you the details. They have a couple of therapists who work with pandas. Sorry you are going thru this

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Thanks. The University of South Florida Rothman Center sounds like an amazing place. Is there a central thread with kids'/parents' experiences there?

 

Tonight I went to talk to a friend's father who is an adult psychologist with a lot of OCD experience. He had an interesting observation: he said we are treating the body (PANS) and the OCD obsessions/rituals, but we were not dealing with the human himself. That it seemed that no one was delving into how DS felt (not in relation to OCD). His view was that these conditions are usually a combination of many components and that DS seems extremely burdened by guilt about the time/energy DH and I are investing. Also DS has said in the past that he feels that OCD/PANDAS is a punishment for something he has done, and it doesn't seem as through the why was ever delved into.

 

I think he may be on to something. DS will go talk to him Monday and I'm curious to see how that works. I'm just really burnt out with the intensive CBT we've been doing with almost no results.

 

Anyone have success when changing gears or adding an old school therapist to the mix?

 

Thanks again,

T.Anna

DS 14.5

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Thanks. The University of South Florida Rothman Center sounds like an amazing place. Is there a central thread with kids'/parents' experiences there?

 

Tonight I went to talk to a friend's father who is an adult psychologist with a lot of OCD experience. He had an interesting observation: he said we are treating the body (PANS) and the OCD obsessions/rituals, but we were not dealing with the human himself. That it seemed that no one was delving into how DS felt (not in relation to OCD). His view was that these conditions are usually a combination of many components and that DS seems extremely burdened by guilt about the time/energy DH and I are investing. Also DS has said in the past that he feels that OCD/PANDAS is a punishment for something he has done, and it doesn't seem as through the why was ever delved into.

 

I think he may be on to something. DS will go talk to him Monday and I'm curious to see how that works. I'm just really burnt out with the intensive CBT we've been doing with almost no results.

 

Anyone have success when changing gears or adding an old school therapist to the mix?

 

Thanks again,

T.Anna

DS 14.5

 

I do think your new guy may be on to something. Our older kids, I think, have a level of awareness and maybe even some element of "guilt" over what they're going through and what they're putting us through, especially when they're past the worst of it all. And ERP isn't really designed to deal with that.

 

About a year or so ago -- some 2 years into our PANDAS journey -- we added a therapist who, in addition to ERP, also does ACT -- Acceptance Commitment Therapy. It's more of a "talk-based," mindfulness therapy and thus far, in conjunction with a therapist our DS likes and trusts, it does seem to have helped with some of the additional issues, feelings, concerns he's been dealing with.

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