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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Last year I attended a conference at Brown on PANDAS. An IVIG study done at NIMH was presented and I am curious if anyone has seen any published information on this study. The results presented were not convincing that IVIG was effective in treating PANDAS. Many families are still paying large amounts of money for IVIG and fighting insurance companies. I'd love more information should anyone have found further information connected to this study.I do have the powerpoint but it is too large to attach. I am happy to share it through email.

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Hi Friends,

I figured out how to share this document ( don't mind the notes in the margins). I am trying to figure out the IVIG study results from NIMH. It seems as though the study in 1999 was successful but in 2015 it was not. I have not seen much published since I attended this conference and I am hoping that someone can help me better understand where things stand with it now. Has something been published and I missed it?

 

 

https://drive.google.com/file/d/0BzX097TgW8z8dy1oTTdGZC1EbDg/view?usp=sharing

Edited by Bearmom

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Thanks for sharing this. My son was in the 2011 study, so I was fascinated to see this. NIH promised to send me a copy of the final full report, once published. The last I heard from NIH was about nine months ago for a follow-up phone interview. They assured me I would be informed when the full details were finally disclosed. And I have received nothing yet.

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Surprised that the people in the study haven't gotten more info.

It sounds like the research went array and if kids didn't do well with placebo they were given ivig .. This would make the study invalid I'm guessing ??

I'm so confused by this entire study and it only makes me mad because it's so hard to people to believe in pandas that this community can't afford any blips!!

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Bearmom, do you think this is the study you're asking about? https://clinicaltrials.gov/ct2/show/NCT01281969

No results posted. Data completed last Dec but the study will not be finished until Dec 2016.

 

It's interesting to me that the PANDAS studies with IVIg are typically a one- or two- treatment deal, whereas in contrast, our doc is recommending a gradual dose ramp up and then every 3-4 wk at full dose to prevent IgG levels from going down. Perhaps that's because there's an immune deficiency in our case, but I wonder whether those patients for whom IVIg didn't work may have had a different experience with a more frequent dosing schedule of IVIg. So much is unknown!

 

As indicated by the reference to immune status of OCD patients toward the end of that conference link, it would seem wise to include the immune parameters of PANDAS patients enrolled in IVIg studies. Who has an official deficiency, an unofficial deficiency, or no deficiency, and among them who responded to what dose of IVIg, would all seem to be incredibly pertinent information. Little studies that don't do this, and give IVIg once or twice seem like random shots in the dark with regard to the odds of benefit. And that doesn't even get into other possible parameters, such as infection titers and genetic defects affecting methylation and so forth. I suspect that it's hard to design such a study; I just hope that study results don't provide misleading information, where one method of dosing doesn't work for a subgroup whereas another method of dosing might, if it were studied.

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Conclusion

IVIG was safe and well-tolerated. Between-group differences were smaller than anticipated, and the double-blind comparison failed to demonstrate superiority of IVIG over placebo. The observed open-label improvements indicate future trials would benefit from larger sample sizes designed in part to aid in the identification of biomarkers predictive of a positive response to immunotherapy. Future investigations focused on the natural history of PANDAS are also warranted.

 

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There is an interesting page on the Pandas Physician Network website analyzing the results of the study, explaining the (unfortunate) protocol choices that likely led to the unexpected set of results:

  • improvement in both the randomized arms ( abx vs. abx +IVIG), and the
  • lower-than-expected improvement during the blinded phase, while a >50% improvement during the open IVIG phase.
    (parents were only offered 2nd IVIG if their child had < 30% improvement on the 1st IVIG, so there was an unintended strong incentive to minimize (under-report) a positive response during the blinded part of the study). During the open phase (non-blinded) IVIG there was no incentive to under-report, so the 50% improvement is likely the true level.

 

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