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So, I just watched the Mystery Diagnosis episode last night, it was very interesting. I guess the part that confused me is that once Sammy went to Dr. N in New Jersey, she suspected it was PANDAS, but then ran a test that confirmed it was in fact PANDAS. So, what was that test and is it the same test everyone on this board has had? If so and the "test" proved it in Sammy's case, why are the results so dismissed and controversial?

 

Also, has anyone else been to Doctor N in NJ?

 

Again, I'm new to this discussion and Sammy's story, so I apologize if my question is dumb...

 

Thanks!

 

Lynn

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So, I just watched the Mystery Diagnosis episode last night, it was very interesting. I guess the part that confused me is that once Sammy went to Dr. N in New Jersey, she suspected it was PANDAS, but then ran a test that confirmed it was in fact PANDAS. So, what was that test and is it the same test everyone on this board has had? If so and the "test" proved it in Sammy's case, why are the results so dismissed and controversial?

 

Also, has anyone else been to Doctor N in NJ?

 

Again, I'm new to this discussion and Sammy's story, so I apologize if my question is dumb...

 

Thanks!

 

Lynn

Aaaaaaahhhhhhh! No, there IS NO LAB TEST THAT CONFIRMS PANDAS!!!! Dr. N ran ASO and AntiDnase titers, which were elevated in Sammy's case- but those certainly do not confirm PANDAS! Many children have those titers high w/o having PANDAS, and many children have PANDAS w/o high ASO and antiDnase titers. This was discussed here a lot when the SS book came out, because people were being told (by somebody who does not routinely post here) that they should get titers tested if they suspected PANDAS, and that you needed to have high titers for it to be PANDAS.

 

It IS very confusing!!!

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Thanks Peglem, your response was actually more inline with my initial understanding. I think watching the show confused me a little, it seemed like they did a test that "confirmed" it was PANDAS. Still, it is very confusing! :huh:

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There was somebody from this board who saw Dr. N- I don't think it was very satisfactory. Tried to find the post for you, but couldn't. It may be one of those that was deleted because it discussed an individual doctor- maybe that poster will see this and PM you.

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If you suspect pandas you might want to spend some time on http://www.pandasnetwork.org/index.html

 

Also at the top of the the PANDAS/PITAND page is a section called "helpful thread for pandas" there is a link to a page that has a diagnosis flow chart. Lot of other info too. That is the path most of us have taken to get here..not that we had that flow shart to follow, that would have made my life much easier if I had that a year ago! If you live near a pandas expert - found in Chicago, Maryland (and I think Boston and NY?) and there maybe one in Texas, I would go there if what I uncovered on pandasnetwork rang a bell.

 

It is very difficult to diagnose. My son did not have "sudden onset" it was more gradual, over a couple months. And I think he had "phases" he went through when he was younger that could have been pandas since he wa around 6, but the behaviors were subclinical - odd - but could be considered normal for his age. Until a year ago. Also, trying to prove you had strep - can be impossible. Some have throat culture positive, some have high titers (the test given to sammy), some have nothing to prove it - but that doesn't mean there wasn't one. Pandas shows up weeks after the strep (the first time(s)) .Then it seems many will react to people around them with strep or other illnesses as their faulty immune system trys to react.

 

Good luck and please don't hesitate to post your questions along the way. We're all here to help one another .

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So, I just watched the Mystery Diagnosis episode last night, it was very interesting. I guess the part that confused me is that once Sammy went to Dr. N in New Jersey, she suspected it was PANDAS, but then ran a test that confirmed it was in fact PANDAS. So, what was that test and is it the same test everyone on this board has had? If so and the "test" proved it in Sammy's case, why are the results so dismissed and controversial?

 

Also, has anyone else been to Doctor N in NJ?

 

Again, I'm new to this discussion and Sammy's story, so I apologize if my question is dumb...

 

Thanks!

 

Lynn

 

No question is dumb! I believe and I hope someone will confirm or correct me that she ran the strep tests (ASO and AntiDNase B...not sure if she did a throat culture?) that confirmed that Sammy had elevated titers and in fact had had a strep infection that had gone untreated as his Mom, nor Sammy knew he had strep as he was asymptomatic. This test unfortunately is not a definitive test to confirm PANDAS, but coupled with Sammy's other clinical symptoms and characteristics and the elevated titers, Dr. N confirmed that Sammy's neurological issues were indeed brought on by strep. Hope this helps and that I am correct?

 

WOW...somehow missed all the other responses to this thread before I typed mine!

Edited by saidie10
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We live in Texas and after the run around from psychologists, neurologists, psychiatrists, and mentions of hospital settings (we were unable to find any PANDAS doctors here in Texas)...our pediatrician was able to get a phone conference with Dr N in NJ. She was very nice and helped in getting our pediatrician "on board". We were new to all of this and after all of the refusal to acknowledge our desperation and being told over and over "controversial" and "don't believe in this illness"...quite frankly she was the first one that began the turn around on getting help for us. Our pediatrician put out son on Augmentin XR 1000 twice a day and he responded right away. Within a week the “Tourretts like movements and behaviors” and face tics began to fade and are now gone. Each day he improves, however we are planning on contacting Dr. K because we want to run our information by a true PANDAS specialist to see if maybe we are missing something. Dr. K's website says that eventually ALL patients become non responders to antibiotics....would like to know more about what that means and if he is returning to us...do we still go with the IVIG or is that for children that are not responding to antibiotics? Still so much to learn!

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When you find that out, please let us know. I'm pinning my hopes on antibiotics!

We live in Texas and after the run around from psychologists, neurologists, psychiatrists, and mentions of hospital settings (we were unable to find any PANDAS doctors here in Texas)...our pediatrician was able to get a phone conference with Dr N in NJ. She was very nice and helped in getting our pediatrician "on board". We were new to all of this and after all of the refusal to acknowledge our desperation and being told over and over "controversial" and "don't believe in this illness"...quite frankly she was the first one that began the turn around on getting help for us. Our pediatrician put out son on Augmentin XR 1000 twice a day and he responded right away. Within a week the “Tourretts like movements and behaviors” and face tics began to fade and are now gone. Each day he improves, however we are planning on contacting Dr. K because we want to run our information by a true PANDAS specialist to see if maybe we are missing something. Dr. K's website says that eventually ALL patients become non responders to antibiotics....would like to know more about what that means and if he is returning to us...do we still go with the IVIG or is that for children that are not responding to antibiotics? Still so much to learn!
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It is my understanding that the dr. you are asking about thinks you need high titers (ASO/anti-dnase b ) to have PANDAS, doesn't know (maybe she does now?) about the Cunningham test, and doesn't do IVIG or PEX. So, in IMO, she might be helpful to a select group of PANDAS patients (those with classic symptoms, easy to diagnose, high titers, that respond well to antibiotics w/out other immune therapies.) I have also heard she is VERY expensive.

 

I also don't know if she does a complete workup (immue etc, lyme) that you would get from Dr. Trifiletti (NJ) or Dr. B. (CT). Some on this forum have seen both Dr. T. (a pediatric neurologist) and DR. B (an immunologist), since they have different specialties.

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From what I read in the book:

 

Sammy did NOT have a throat culture (since Beth stated a blood test is "far more accurate"). Also, there is no mention of checking other household contacts (to check for strep carriers)...so I must assume that was not done.

Edited by EAMom
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We had a phone consult with the dr you are inquiring about back in October. It was very disappointing, as it appeared she did not read the vast amount of information I had compiled and emailed to her early. After an hour she decided my son did not appear to have PANDAS, as he did not currently have strep, and his tics began several years before his first confirmed strep throat culture and sudden onset. She did not pay attention to his "viral" pharyngitis (i.e. high fever, swollen glands and sore throat but negative rapid test - no culture done) that occurred a few months before the tics. Our psychiatrist who participated in the consult was a bit disappointed as well, as she questioned his diagnostic criteria (Swedo's) and did not hear us describing OCD (we were) but focused on the rages. She did know of the CamKinase test and did suggest this. She recommended getting off SSRIs and going on a mood stabilizer (read - bipolar), which we tried to no improvement. She did suggest 6-8 week antibiotic trial if the first did not work... So that is our experience. I think our son's case history is so long and complex, it made getting an accurate diagnosis very difficult (as yet another PANDAS expert suspected the exact same thing as the dr you are inquiring about). My sense is that if you are a newer onset with a clear cut strep history, you will be more successful with this Dr. If you have a longer history and more complexity, you may be helped further by those drs with more experience in that realm.

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