Current thoughts on clinical trials and other treatments (Dr. Li or Stanford OIT

[CMdeux]

Oh, I am sorry, Hedgie.  that your DS is probably fine anyway since you've had almost NO trouble so far.

For those doing this, I'm curious about how the risks/benefits were explained as part of informed consent.  For example, was the possibility of developing EE discussed?

We've been doing highly heat-treated egg dosing (baked egg) for a few years now.  We were not really "warned" about EE with it-- but that was because it really wasn't (quite) recognized that it WAS a substantial risk at the time.  We were concerned with the fallout associated with tweaking DD's immune system with immunotherapy for an anaphylaxis trigger.  There was a lot of very good, open communication re: that at the time-- DD's volatility in a global sense did seem to rise that first six months. 

I don't KNOW that this is the case, but I have my suspicions that we might have traded fuller pollen desensitization for the egg desensitization, much as we initially traded SCIT for a re-emergent (and potent) milk allergy when DD was 5-9 yo. 

All of that is purely idiosyncratic, and much of it is highly reproducible in her-- but NOT stuff that is seen in other patients in studies.  But it's a large part of the reason that we've all concluded with some reluctance that she is not likely to be a very good candidate for nut desensitization orally.  We simply don't know what we'd be trading for, and it could be REALLY big...  and her threshold REALLY moves around with peanut and cashew both-- that much we already know from environmental exposures, reaction history, etc.

Dr. Awesome definitely talked to us some about how things were going-- we were lucky in that we were seeing him weekly anyway since DD was still undergoing SCIT for aeroallergens.  Egg treatment added an extra year to that, btw, because he had to step her dosing down for a few months when she started dosing with egg.  Total burden seems to be a thing with her.  The reason why we have NOT pushed egg dosing into "normative" range is twofold-- her personal history suggests that this is a tightrope act-- why make it higher??-- and the possibility of EE, which seems to be more robustly associated with higher concentration regimens for OIT.

Incidentally, I do not believe that DD has developed true "tolerance" (that is, like non-allergic, normal tolerance) for ANY food that she has ever been truly allergic to since she outgrew wheat as a toddler.  That is; she is not highly reactive toward milk or soy, certainly, but she definitely has a limit on consumption, too.   She gets those things pretty regularly, and we don't fear them, by any means, but if it's been a while, there's a certain awareness in the backs of our heads, too.  Her IgE-mediated immune system is inherently unstable.  That's all there is to it, in her case.  I suspect that it's a genetic variant that will eventually be associated with very severe atopy.

[Macabre]

I asked about it. There had been no incidence of it.

[aouda]

Does anyone have thoughts on this ... ?  A paper from last last year shows that FAHF-2 doesn't work (under the protocol the researchers devised).  Does anyone know what they're doing at Mt. Sinai now?  Upping dose, extending ramp-up time?

Safety, clinical, and immunologic efficacy of a Chinese herbal medicine (Food Allergy Herbal Formula-2) for food allergy