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LeRoy Girls "Cured"

 

I doubt any of us will ever know the real story behind all of this.

 

 

I'm interested to see how it will all play out long term.

 

In our case, symptoms came back about 4 times over the course of a a little over a year, about every 3 mos, and were much worse when we initially discontinued abx.

We were symptom free within a couple of days with abx and steroids for most of the episodes, until the last one, when we did PEX.

 

 

With the kids Dr. Conversion Disorder is treating, they seem to be using psych meds, psychotherapy, and disconnecting them from the internet.

Is this a long term strategy? What happens when it recurs, and we pretty much all have seen.

 

As far as the ones Dr. T is treating, I'm assuming Dr. T will keep them on long term abx, which will probably help tremendously.

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LeRoy Girls "Cured"

 

I doubt any of us will ever know the real story behind all of this.

 

 

I'm interested to see how it will all play out long term.

 

In our case, symptoms came back about 4 times over the course of a a little over a year, about every 3 mos, and were much worse when we initially discontinued abx.

We were symptom free within a couple of days with abx and steroids for most of the episodes, until the last one, when we did PEX.

 

 

With the kids Dr. Conversion Disorder is treating, they seem to be using psych meds, psychotherapy, and disconnecting them from the internet.

Is this a long term strategy? What happens when it recurs, and we pretty much all have seen.

 

As far as the ones Dr. T is treating, I'm assuming Dr. T will keep them on long term abx, which will probably help tremendously.

 

I think this story is a repeat of a earlier one?

 

It is also unclear to me if some of the girls who have seen Dr. T. are also still going to Dent?

 

One of the moms of the girls who saw Dr. T. posted on FB. She knows of 4 girls that saw Dr. T. and all 4 they are doing well on antibiotics. (She doesn't know the other girls, they may also be doing well, she just doesn't know them.)

 

I wonder if the girls who are "Dent only" will be "cured" of their complex tics but have residual long term OCD and anxiety (like those with Sydenham's Chorea), and whether they will be on psych. drugs long term to mask those symptoms? With SC, motor symptoms can resolve spontaneously after several months, but the comorbid psych. symptoms can persist for decades.

 

I do think it's strange that 11 of the teens are still going to Dent...? (esp. with the offers from NIMH and Dr. T.)

 

I know one of the girls (this in the news) that was going to Dent (the one with the bruised face--from falling and blacking out) was on 9 medications to control her symptoms. I don't know if she is still a Dent patient.

 

Here's a video from one of the Corinth girls...it sounds like she is also doing better, and planning on seeing Dr. T. I know she was on a bunch of meds (from prior visits to Neuros...mentioned in her vids), but it looks like she's now off of them, but was recently in the hospital. http://www.youtube.com/user/rodeocowgirl131#p/u/0/sr4M4DBtIks

Edited by EAMom
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Anyone out there feel like the timing of all of this sudden "new" information (the NIMH update, the OCD Foundation paper, the newly defined PANS, etc) is curious?? I just can't help but feel that maybe the fear that something strep or infection related was really going on at LeRoy helped move the process along. Over the past year it has been like watching paint dry in relation to the relatively little information that really is out there on PANDAS. Then almost overnight it is as if there have been giant leaps forward almost as if the pipeline is being primed. Sorry to be so suspect but something in my gut causes me to question- do they know more than they are saying?

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Anyone out there feel like the timing of all of this sudden "new" information (the NIMH update, the OCD Foundation paper, the newly defined PANS, etc) is curious?? I just can't help but feel that maybe the fear that something strep or infection related was really going on at LeRoy helped move the process along. Over the past year it has been like watching paint dry in relation to the relatively little information that really is out there on PANDAS. Then almost overnight it is as if there have been giant leaps forward almost as if the pipeline is being primed. Sorry to be so suspect but something in my gut causes me to question- do they know more than they are saying?

 

There have definitlye been a lot of great PANDAS awareness stuff in the news, Scientific American, Parents Magazine, and the newest article Today Health.

 

The Scientific American article was a direct response to Le Roy. I believe the Today Health also came out b/c of Le Roy.

 

The PANS article was due to come out anyway, so I think some of the changes are coincidental.

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At some point, every PANDAS parent gets that "conspiracy" paranoia Sequin. Or maybe we are just "curious" by nature. ;) And if everybody paid as much attention to the PANDAS news as we do, there would be a run on the dr's offices. Sadly, it doesn't make it thru the filter of most because something "rare" like PANDAS would never happen to them.

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