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I heard from a work colleague about a 2020 episode that sounded simular to pandas but didn't see the show. She said they showed brain scans and discovered higher/lower levels of something as a culprit. I found a link on the abc site but won't get a chance to watch till tonight.

 

http://abc.go.com/shows/2020/listing/2014-05/23-2020-0523-the-children-who-break-away

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Most of that show, unfortunately, was just a regurgitation of a broadcast they did a few years ago, though they did dedicate a few minutes toward the end of the program "catching up" with those kids they featured, where/how they're doing now, etc.

 

They never mention any kind of PANDAs/PANs connection to the OCD, let alone investigate it. When the program first aired, I posted an email to 20/20 via ABC and told them about PANDAs and suggested they investigate it. Never heard a word back.

 

Interestingly, the research doctor they interviewed, Rosenberg, was interviewed for the original story, also. And both times, he had the results of brain scans (I think they're SPECT scans), and I think he's accessing them via coordination with Dr. Chunagi, who has done some scans of some PANDAS kids here on the forum. In the original story, Rosenberg commented on how he found unusual concentrations of glutamate (neurotransmitter) in the caudate nucleus of the kids with OCD as compared to "normal" kids. Which pricked my interest because Swedo, in a number of her presentations, provides a brain scan of one of her early patients for whom, prior to PEX treatment, the caudate nucleus was "inflamed" or larger than normal.

 

The "new" research finding that the teasers trumpet have to do with Rosenberg's more recent findings that the type of OCD (say, contamination versus "just right" OCD) can be identified by WHERE in the brain the atypical concentrations of glutamate are found. But the story didn't go into any greater detail, except to say that Rosenberg had just delivered these results in a presentation in New York the preceding week.

 

I Googled and tried to find a new paper by Rosenberg, but didn't come up with anything.

 

The story also didn't really go into any depth regarding the treatment(s) these kids have successfully received.

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I don't know who is treating these kids or how they got into the research project. Dr. Rosenberg does not treat. He's research only. At least one local doctor tried to refer his PANDAS patient with OCD to Dr. Rosenberg but it was a a no go.

 

Dr. Chugani's research seems to have stalled. I know for a fact he's got PANDAS kids that show inflammation in the basal ganglia and PANDAS kids that do not with his specialized tracer and PET scans.

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Thanks for that All,

 

We should get our DD's 30 vials of blood tests ordered by Dr. T back this week. I'm not so sure if any of them will show glutimate levels. DD is very sensivitive to something and we are hoping Dr. T will tell us what that something is.

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Most of that show, unfortunately, was just a regurgitation of a broadcast they did a few years ago, though they did dedicate a few minutes toward the end of the program "catching up" with those kids they featured, where/how they're doing now, etc.

 

They never mention any kind of PANDAs/PANs connection to the OCD, let alone investigate it. When the program first aired, I posted an email to 20/20 via ABC and told them about PANDAs and suggested they investigate it. Never heard a word back.

 

Interestingly, the research doctor they interviewed, Rosenberg, was interviewed for the original story, also. And both times, he had the results of brain scans (I think they're SPECT scans), and I think he's accessing them via coordination with Dr. Chunagi, who has done some scans of some PANDAS kids here on the forum. In the original story, Rosenberg commented on how he found unusual concentrations of glutamate (neurotransmitter) in the caudate nucleus of the kids with OCD as compared to "normal" kids. Which pricked my interest because Swedo, in a number of her presentations, provides a brain scan of one of her early patients for whom, prior to PEX treatment, the caudate nucleus was "inflamed" or larger than normal.

 

The "new" research finding that the teasers trumpet have to do with Rosenberg's more recent findings that the type of OCD (say, contamination versus "just right" OCD) can be identified by WHERE in the brain the atypical concentrations of glutamate are found. But the story didn't go into any greater detail, except to say that Rosenberg had just delivered these results in a presentation in New York the preceding week.

 

I Googled and tried to find a new paper by Rosenberg, but didn't come up with anything.

 

The story also didn't really go into any depth regarding the treatment(s) these kids have successfully received.

In reference to this:"The "new" research finding that the teasers trumpet have to do with Rosenberg's more recent findings that the type of OCD (say, contamination versus "just right" OCD) can be identified by WHERE in the brain the atypical concentrations of glutamate are found. But the story didn't go into any greater detail, except to say that Rosenberg had just delivered these results in a presentation in New York the preceding week."

 

Did they have any remarkable ideas on how to treat these specific types of OCD?? Identifying where it occurs in the brain is all fine and good but if there is no specific treatment then it is just an interesting factoid, right?

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Disclaimer: I missed the first 20 minutes of the show. That said, I was disappointed that there didn't seem to be any indicator or discussion of any of root cause. Onset or otherwise. The CBT and some ERP training that they showed was quite painful to watch actually. Yes, it painted OCD in a light that I am sure the majority of people don't ever see, but the kids seemed to me to be absolutely struggling. As in, I wondered if they really were in need of medical treatment in order to even be healthy enough or "ready" to participate in therapy at that level (especially the young woman). Just my opinion...glad to see "it" out there in the more open, but I felt frustrated many times and wanted to blurt out "but why is this happening" or to ask "what other testing treatment have they had???"

 

The follow up success visits they had, while uplifting, still seemed a lot of pain in there...

 

Gee, I sound like a Debbie Downer, don't I?? Maybe it has something to do with the 4 page appeal letter that I finally just got finished to send to insurance to cover the $70k bill in IVIG that I stare at every month? Yeah, that must be what makes me feel kinda grumpy and pessimistic...right?

 

Carry on.... ; )

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In reference to this:"The "new" research finding that the teasers trumpet have to do with Rosenberg's more recent findings that the type of OCD (say, contamination versus "just right" OCD) can be identified by WHERE in the brain the atypical concentrations of glutamate are found. But the story didn't go into any greater detail, except to say that Rosenberg had just delivered these results in a presentation in New York the preceding week."

 

Did they have any remarkable ideas on how to treat these specific types of OCD?? Identifying where it occurs in the brain is all fine and good but if there is no specific treatment then it is just an interesting factoid, right?

 

 

Unfortunately, this story was VERY superficial though, as dcmom justly pointed out, it is, I think, helping to "demystify" and destigmatize OCD to those mass audiences who favor these "news" shows.

 

But no, there was almost nothing . . . other than recording portions of a handful of therapy sessions . . . that went further into the causes and/or treatments of the OCD. Thankfully, these kids generally seem to have pulled through the worst of their experiences thus far with grace and health and some "normalcy" in life, but the viewer got no real information as to how that all came about. Therapy? Psych meds? Miraculous "auto-improvement" (i.e., truly PANDAs or PANs, with the episode fading as the infectious trigger is dealt with)?

 

That's one of the reasons I was hoping to find a new paper by Rosenberg. His earlier research on the role of glutamate in OCD DID, in fact, suggest some viable treatment possibilities by way of glutamate modulators, including a certain class of antibiotics (beta lactams) and NAC. So while he is a researcher and not a treating physician, I think he might still likely have some things to say that could be useful to our community.

 

After I read his previous papers regarding glutamate and OCD, and the concentrations of glutamate in the caudate and putamen -- which corresponded with Swedo's findings with regard to the enlarged caudate and putamen -- I reached out to Rosenberg and Swedo both about the similarity in the findings and whether or not the glutamate might be the source of the inflammation that Swedo was seeing. Swedo's research partner at the time, Dr. Michael Grant, responded to me, as did Dr. Rosenberg, saying that it was an interesting observation and one that could be investigated further, but neither acknowledged that they would be doing so. :( In fact, Rosenberg told me that he was moving on . . . to studying the role of heredity in OCD and the production of brain glutamate. I'm assuming this latest finding of his announced on 20/20 was a finding that came via that undertaking.

 

I'll let you know if I'm able to find out anything further.

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Here's a link to very interesting link about glutimate.

 

http://www.dana.org/Cerebrum/2007/Protecting_the_Brain_from_a_Glutamate_Storm/

 

And what sounds like risky terrain for drugs, but also very interesting about NMDA receptor

 

http://forums.phoenixrising.me/index.php?threads/anyone-tried-ketamine.4020/

 

This may not be exactly what our kids suffer from but i think it has some insight s.

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