Desensitization Programs in the US -- OIT SLIT SCIT

[aggiedog]

I understand what you're saying.  But I didn't want to wait for dd to get out of childhood before enough science had been done to prove it was completely safe/effective/etc for her specifically.

I looked at the risks of not doing it, and balanced them with the known risks for doing it.  Accidental exposure, limited experiences at camp/friends' houses, added stress of checking food at restaurants, difficulty traveling long distances vs reaction to a dose, eosinophilic esophagitis (both of which had small percentages), the possiblity she never gets to stop her PN daily dose, more unknowns

[ninjaroll]

Forgive me, aggie, but I'm not seeing how your choice opposes the peer review process.  You made an informed choice, one that no one else is judging, but for those that actually need more data our needs can't be defined by yours.  That should be acceptable to everyone because we're each attending to our own needs by subset.

[aggiedog]

Actually, I'm thinking we are saying the same thing.  I would have totally appreciated peer review, years of data, and the sure knowledge that what we did was the best for dd.  I simply did not want to wait the years it would take.  We did her OIT in 3rd grade.  I wanted her childhood to be as safe as I could make it, weighing what we knew at the time.

I so wish there was more, good research out there.  I think it is hard to get those types of projects off the ground.  Experimental medicine on children?  That aren't actively going to die if you don't do something (as opposed to cancer research.)

So first they build up lots of anecdotal experience, and smaller programs like my dd's.  I hope her experience leads to better research to help generations after her, I truly do.

[ninjaroll]

I'd have to disagree because much like CMdeux I must consider the skewing effect of exclusion criteria, and the lack of cross-section and longitude.  I could be wrong but I do believe she and I are of like mind that it's the lack of discipline in anecdotal experience that is expressly making OIT increasingly inaccessible to children in our subset.  And for another whole set of standard deviations from the mean, my children's inability due to developmental disability to cooperate with regimens as studied. 

The most I can say is that I do appreciate the net benefit for the subset of children that OIT seems to work the best for.  The rest of us not in that population, for now, will have to wait.

[aggiedog]

I get it.  As a physician, though, so much of what I do is not backed by peer reviewed, double blind, placebo controlled science.  If I was limited to that, I'd have very little to offer my patients.  There is what is ideal, and there is reality.

I do hope they can do more research, find which antigenic sub groups respond better or worse to different treatments, and the other myriad of questions that surround FA's.

[CMdeux]

I really appreciate your perspective, Aggie.  It's not that different from mine, I think-- difference was that our gut said one thing after looking at the knowns versus the unknowns, talking it over with our allergist and discussing DD's individual history, etc. etc.

And it wasn't what your family went with. 



COULD our DD have been desensitized successfully?  It's difficult to say, IMO.  Maybe.  But we already knew that we'd have to be prepared to "pay ANY price."  ANY price.  And I don't mean financially.

Apparently, egg desensitization came with the baggage of destabilizing her immune system such that she developed animal allergies, and with upped doses, her asthma has also worsened to the point that it's very definitely a major problem in her life now.  Could have been adolescence-- or it could have been tweaking her immune system.  We'll never know, but her history sure argues powerfully for the latter* in this instance.  Which is why we judged it to not be a good bet for her personally.

"Worse" isn't an option for peanut/treenuts-- or just staying alive will be so complex that being a functional, working adult isn't a real option.    SLIT, I think that there's a lot of data (now) to support, and the safety seems to be there.  I might well have been okay with that.  But OIT using an aggressive protocol and high doses... hmmm-- no.  DD is an outlier-- and outliers do need to be wary for a lot longer than most people when it comes to new medical treatments.  They may be outliers for reasons that matter a lot when it comes to mechanistic/molecular aspects of revolutionary treatment.  KWIM?  I tend to think that this probably IS fine for those who are below the most sensitive quartile of the normal distribution (in terms of reaction threshold/reactivity).  There's just so darned little right now to say who those people ARE who should not do this.  Is it those who are in the most sensitive 1%?  5%?  Those with the most severe reaction history?  Those with unstable reaction thresholds and asthma? Severe reactions to trace quantities (ppm or lower)?  Not clear-- but it seems likely that at least some of those people are poor risks.



*when she started allergy shots, her sensitivity to all of her food allergens worsened-- which would have been difficult to fathom, frankly-- and she "redeveloped" the milk allergy she'd outgrown.  At least it wasn't wheat-- but the effect has been nearly permanent, since she's been off of shots for 4y and still doesn't have normal milk tolerance back.  {sigh}

[aggiedog]

I get that, too, CM.  Fortunately, dd was only PA when we started and has never had asthma.  She is not one of the 1%, AFAIK.  I'll admit, she somehow developed a mild allergy to pecans and walnuts during the treatment.  From the OIT?  We'll never know, but it's definitely possible.

I would have not been willing to pay any price, not even close.  Your dd, and others, are indeed in a separate class.  It was a good decision for our family.  I would never assume it would be the best decision for all families.  I do hope her data, and the rest from her clinic, can be used in the future, to determine who is a good candidate and who isn't. 

As for OIT vs SLIT, I don't think there was anyone within driving distance doing SLIT when we did dd's OIT.  I would not have been against considering that instead, if it had been a real option.  As it was, we drove 4 hours each way, once a week for 5 months.  She missed every monday for most of 3rd grade. Also not ideal, but that was the trade off.  I know that's not in the same class as severe reactions by any means, but it was not a light decision even just based on time and money.

[ajasfolks2]

Just wanted to be sure link to this Facebook group was in here for those wanting more details and discussion as to OIT:

Group is called .

Link to closed group is


Note:  not endorsing, just sharing the link.  Link removed by member.

Edited 4/3/2016 to remove link.  Given some of what has been observed for behavior and read as to posts in that group lately, I cannot in good conscience leave that link in this post.  Search for group via name, if you wish.  But the lack of balance in the discussions there and concerns raised about commercial profiting and/or other unexplained motivations there means that the link needs to be gone from my post.

[TwoDDs]

This discussion was very helpful to me.  Thanks.

[TwoDDs]

A warning.  The facebook group kicked me out (without so much as a how do you do) for pooh-poohing the idea that this 2014 article discussing the apparent the relationship between OIT and EOE was a scare tactic posted by big pharma to keep us all in line.  (My comment, something along the lines of - The article is not terribly scary and if that was their intent, big pharma needs better editors - was perhaps a bit condescending).   The leaders seem a little fringe - but most of the folks on there seemed like they were just trying to do their best and the group has a good list of doctors doing OIT.

http://allergicliving.com/2014/03/18/those-who-outgrow-food-allergy-can-risk-eoe/

[Macabre]

So there is a doc here who is doing it. And he is covered by our insurance, whereas where we've been going for SLIT for four years is not anymore.

[Macabre]

Yeah, TwoDDs--it seems to be a group that only posts good news and celebrates the founder of the group. asking critical questions should be welcomed, but so far, I'm not seeing that. Still, for finding out info about OIT, more helpful than our thread. 

[TwoDDs]

Yes, prior to being kicked out, I found two doctors/groups within 4 to 5 hour commutes (we live on top of Dr. Wood and I tend to agree that his influence is keeping local practitioners/groups from offering OIT) and have submitted some initial labs to one of them.  He was kind enough to call me back to discuss whether my daughter would be excluded from consideration (no) and whether or not he would be willing to consider treating more than peanut allergy (yes, but only on a case by case basis and only one at a time after additional testing).  So, I think I got what I needed before I mouthed off and lost my access.

DD isn't terribly interested - but, I think that will change as she spends more time with friends as opposed to family who generally discount going anywhere that isn't more safe.  We'll see.  I'd like her to start this summer - since it will require missing a couple of school days a month and next year is 7th grade, really has got to be the last grade that schedule will be easily manageable - not that one couldn't do it in later years, just that I feel this will be the last grade where it could be easy.

[ajasfolks2]

Sorry you were banned and lost the useful things there . . .

Gee, reminds me of banning way back when!  (8 1/2 years now!!)

[ajasfolks2]

Frustrated. 

Just the facts, ma'am.  That's all I want.