Desensitization Programs in the US -- OIT SLIT SCIT

[ajasfolks2]

PUtting Ehrlich's statement from March 2015 here.  Thought we already had link in this thread, but I quickly rechecked and did not see it.

http://asthmaallergieschildren.com/2015/03/11/old-allergists-and-new-treatments/

[ajasfolks2]

Related to the OIT 101 Facebook link and group:

There seem to be many recent instances where some pro-OIT group members and/or leaders have created "Look alike" food allergy groups at Facebook (to look like the frontpage of some of the bigger FB food allergy groups) . . . with the express purpose of a push to private practice OIT and perhaps discouraging balanced discussion and/or other treatments.

I find this just as concerning, if not more so, than FARE's link to Aimmune.

[ajasfolks2]

Linking again to another related thread here:

Aimmune, AR101 and CODIT: FARE

[ajasfolks2]

http://snacksafely.com/2015/10/breakthrough-food-allergy-therapies-and-the-big-business-behind-them/

I would assume a linkage between the lone commentor at bottom of this blog post and . . . well, I'll let readers here make that connection.

[lakeswimr]

PUtting Ehrlich's statement from March 2015 here.  Thought we already had link in this thread, but I quickly rechecked and did not see it.

http://asthmaallergieschildren.com/2015/03/11/old-allergists-and-new-treatments/

I think this is reasonable and I'm not a doctor or a research scientist so I can't comment on all aspects of all things regarding OIT.  I think that saying OIT 'isn't approved' and talking about the FDA is a bit misleading because I believe the FDA has said it won't ever approve OIT as it is done other than via a method like Aim mune because it is food, not medication so can't be approved via the FDA.  There is what seems to be substantial research by Dr. Nadeua for the past decade and she has done it in what seems to me to be the method that drugs are studied, stage one, stage two, etc. 

I agree with the recommendation that I'd only feel comfortable with OIT at a place like where we had it or Dr. Nadeau or other affiliated place. 

I think reasonable, respected allergists can have opposing and valid opinions on this topic. 

[lakeswimr]

Related to the OIT 101 Facebook link and group:

There seem to be many recent instances where some pro-OIT group members and/or leaders have created "Look alike" food allergy groups at Facebook (to look like the frontpage of some of the bigger FB food allergy groups) . . . with the express purpose of a push to private practice OIT and perhaps discouraging balanced discussion and/orother treatments.

I find this just as concerning, if not more so, than FARE's link to Aimmune.

If that is their leaders, that's really poor form.  I heard talk of it happening once to one group.  Has it happened many times?  Wow!  That does't seem legal. 

They do go to other places and try to educate everyone.  I think they believe info about OIT is being suppressed and they are helping educate the average FA person about the truth.  The assumption that this is built upon is that the rest of the FA community doesn't know what they know.   

[lakeswimr]

Did you see the recent issue of Allergic Living?  It was like half the magazine was an advertisement for Aim mune.  There was the opening by the editor praising it, the article on Aim mune itself that, and then an article from FARE pushing for it.  I didn't see a mention of the link between FARE an Aim mune.  I'm not actually down on Aim mune but something about all that didn't feel quite right to me.

I think Aim mune could help more people get OIT and I think that done properly, OIT will work on most, but not all, people with FAs.  I think it will make more doctors feel comfortable doing it.  Not all will want to do it or be ready for all that it involves, even if they use a pre-packaged pill.  I do not think using this pill is better than the way it is currently done in OIT clinics, though. 

[ajasfolks2]

Have not read recent issue of Allergic Living . . . on my desk.  Will put it in the car backpack so that I can read this coming week while waiting for kids at activities and being the driving-parent!

Thanks for that heads up!

[CMdeux]

I think reasonable, respected allergists can have opposing and valid opinions on this topic. 

Or even for different patients within their individual practices, maybe different opinions on OIT. 

I've been quite concerned by the notion (increasingly promoted) that OIT really can be "for everyone-- if they were, you know.. motivated enough to pursue desensitization..."

    Seems pretty clear from most of the researchers in this niche that this is not true-- and may never be true, either.  There are people for whom desensitization is not a good bet.  It's a lot nicer to pretend that isn't true-- but not "everyone" can be desensitized to environmental allergens, either.   Makes complete sense to me that some people have an immune system that wouldn't respond as expected to food allergen desensitization, either.

Kind of wish that there were a larger push to understand what the indicators/markers are for who those people are-- because while the notion that the status quo is "the worst that could happen" might be tempting-- I don't know that it's true, either.  There are people who have tried SCIT for aeroallergens with the best of intentions, and wound up really screwing up their immune systems as a result...  apparently permanently.

 

[lakeswimr]

I don't think any doctors are claiming OIT is for everyone.  NEFATC screens people and after screening they have over a 90% success rate with the remaining people.  That means their success rate would be lower, maybe 80 or 85% if they admitted everyone, I would guess.  Who knows.  Aimmune claims 80%, I believe.  4 of 5. 

It isn't about being dedicated or not.  It is a significant commitment that wouldn't work for everyone.  It might not be worth it for some and some won't even be accepted to programs depending on their reaction history.  It was hard for us and was a much bigger commitment than I anticipate before we started doing it.  It might not sound like it was but it really, really was.  We were very lucky.  Crossed off two allergens from our list.  Makes life much easier for us. 

[ajasfolks2]

Thought this might be appropriate in this thread as well as other places on boards.

When it comes to considering any "treament" or "therapy" or "cure,"  a person would be wise to step back and assess, especially with regard to the medical or care provider AND/OR the person(s) pushing for that course of treatment or action . . . perhaps beginning with a tool such as this easily understood assessment as to motivation / manipulation:

http://expandedconsciousness.com/2016/03/29/5-ways-to-tell-that-someone-is-trying-to-manipulate-you/

[ajasfolks2]

I think reasonable, respected allergists can have opposing and valid opinions on this topic.

Amen, sista.

 

[CMdeux]

I am so appreciative of the unfiltered and open dialogue that we've managed to have about emerging OIT (and related issues) here over the course of many years.


Just needed to say that.   

[lakeswimr]

Yes, I don't feel that long time members have tried to make me believe one way or the other about this topic.  I do feel people shared their opinions over time openly and honestly.  I like that our discussions have the question, 'what do we *really* know?' in them. 

[ajasfolks2]

(Pretty sure the link to this entire thread below is already in this thread somewhere . . . )

But wanted to re-share the link at a recent point . . . so folks might read from there forward as it relates to the issues of allergists and/or Desensitizaton Prog's, etc:

Re: Lala's DS-- passing a peanut challenge and REDEVELOPING the allergy