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Topic summary

Posted by LinksEtc
 - January 18, 2014, 09:25:10 PM
KFA's forum is private so I'm not going to quote anything, but this is a very interesting & related thread.

http://community.kidswithfoodallergies.org/topic/two-sides-to-desensitization-therapy
Posted by twinturbo
 - January 13, 2014, 12:22:53 PM
This should be archived for use as a tool to illustrate why studies do not equal truth, further why they should be questioned and in what way they should be challenged.
Posted by CMdeux
 - January 13, 2014, 12:14:31 PM
Yes it is.


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Based on our review of all available data, as well as our cumulative clinical experience, we estimate that the risk of reactions of all types, including severe anaphylaxis, is far higher in patients being treated with OIT than in patients who practice avoidance.



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Information also was not provided on the development of eosinophilic esophagitis, which had previously been reported by one of these practices to occur in at least 10% of their patients treated with peanut OIT.



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Because this was not a clinical trial, institutional review board and/or US Food and Drug Administration approval was not necessarily required. Although 2 sites did have institutional review board approval for OIT treatment, the other 3 only had approval for retrospective chart reviews.

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In the highlights of this report, the investigators conclude that "this study suggests that some allergists may be able to offer oral immunotherapy for peanut allergy." In fact, there are a variety of unproven therapies that we could offer but that does not necessarily mean that it is the right thing to do. Furthermore, very few, if any, of other unproven treatments for food allergy carry the risk of anaphylaxis. Even more importantly, this treatment is not only unproven in the short term, it is completely unproven with regard to longer-term results. This concern was clearly evidenced in the recent study by Keet et al8 on the long-term outcomes of milk OIT, in which they found that many patients regained significant reactivity, sometimes with very severe reactions, after having an apparent short-term treatment success. In our estimation, these long-term concerns are far more worrisome than the short-term concerns related simply to the risk of reactions while on treatment. The greatest risks of OIT may not be apparent until after treatment, when the patients may be at true risk of anaphylaxis but living with a false sense of security and potentially without epinephrine. These concerns are further magnified by studies demonstrating that protection after OIT may be lost with even brief periods of avoidance.

The above is PRECISELY the concern expressed by our own allergist, and it's based not only in a clear understanding of the literature in the area, but also on what gets said at poster sessions or over drinks at national meetings with other experts.  He is aware of a ton of anecdotal data that supports the notion that not all patients have stable threshold doses whilst on maintenance, and that furthermore, not all patients can "hold" a maintenance dose at all, and certainly not with any gap in dosing.  Some can, but some can't, and there seems no way to know who is who at the moment.

He has strongly discouraged us from seeking desensitization therapy-- out of concern for my DD.  I agree with him, in light of what we know about how her immune system seems to work.

Posted by LinksEtc
 - January 13, 2014, 10:39:39 AM
This is quite a strongly worded article.