NE Food Allergy Treatment Center claims a 95% success rate

[lakeswimr]

http://www.nefoodallergy.org/

They have been open 4 years now.  I'm considering this for my child.  What do you think?  I know people here have mixed opinions and have allergists with mixed opinions.  I know there have been other threads on this but I'd be very interested in hearing what people here think about this, especially their claim of a 95% success rate.

[momma2boys]

If they were close to me, I would definitely look into it.

[CMdeux]

I know that someone here did this with this group-- or at least was going to.

What does your regular allergist think of the idea with this clinic in particular?

That's what I'd base my decision upon, at least most heavily.

[Macabre]

Yes, one if us went there and her son did it successfully.

We (my son and I) are doing SLIT. long term SLIT (4+ year process)

Before I did this I would do some research on the development of other FAs and also EE. When we were looking at OIT, I thought my son was probably at a decreased risk of that. Pn was his only Remaining FA and he never had eczema. But that was just my speculation.

[LinksEtc]

The leading allergist gurus are saying OIT is not ready for clinical practice ... I wouldn't feel right encouraging anybody to go against their opinion.


http://www.jaci-inpractice.org/article/S2213-2198(13)00457-1/fulltext

http://www.asthmaallergieschildren.com/2012/05/11/oral-immunotherapy-for-food-allergy-not-ready-for-prime-time/

[lakeswimr]

His former allergist (who retired) was at first going to have DS do it and then he changed his mind and recommended against it.  The new allergist recommends doing it. 

Does eczema put a person at higher risk of developing EOE? 

[LinksEtc]

I think that one of the risks of OIT is that all of the risks may not be known or fully understood.


There was this thread on EE, but I don't know how eczema factors in.
Does SLIT cause Eosinophilic Esophagitis in some patients?

[hedgehog]

Have not read the whole thread, but yes, that is where I took DS.  He is doing great.  Still carries his epi, but has had no problems at all.  And the staff there is fantastic!  The nurses are wonderful.  The doctors have incredible experience and are among the best.  And one of them even helped me a bit when DD had her issues in Cuba. And he was also the first be to explain to me, in terms easy for a layperson to understand, why you can have a RAST test while on antihistamine, but not a skin test.  Even though she was not really their patient.  So please, if you are on the fence, at least go talk to them.  I cannot say enough about how great it has been.

[lakeswimr]

Thanks.  Our new allergist also wants me to used the baked milk and egg we are already doing to 'desensitize' or 'less sensitize' DS.  My former allergist who retired did not want us to do that.  He wanted us giving only the amounts of baked milk/egg that DS passed in a challenge and then we would see with him if he could tolerate more by skin testing other, less denatured forms and then adding them. 

So, the two allergists have different ways of thinking about this.

DS has so many FAs that the idea of desensitizing all of them is daunting.  It would take years and in the past, would have cost a ton of $.  But the NE FA website now says that they take most insurance. 

I have a friend who's son did the program there and failed.  He was having ana a lot.  It was with him that they found eating a large amount of carbs with the daily dose and avoiding exercise for 2 hours helped him not have ana with his daily dose.  It was weird.  He could sometimes tolerate it and sometimes now.  But the end result is that they still do not have to be as careful about minute amounts of xcontam.  He could not tolerate the 1 peanut/day dose, though, and finally dropped out after a very long time, maybe a year. 

He had the epi many times and should have had it many more and it was tremendously stressful for their family. 

I had the impression that the success rate was nowhere close to 95%.

I'm almost thinking doing it for milk would be better to start because DS can already have baked.  It would be nice to make that milk allergy just simply go away!

But then I think about what happened with DS's egg.  He had for sure reactions in the past including one of his worst ana reactions to a very tiny amount of baked egg.  Yearss later  he passed a challenge for hbe and at the end of the challenge he then ate many servings of angle food cake in the doctor's office so probably got another 5 egg whites in him from that.  (He was starving from not having breakfast), then ate all sorts of things with egg, then had reactions to super over cooked scrambled (dr's advice to try it), then reacted to hbe that he passed the challenge with, then reacted to even baked egg and egg noodle he had been eating fine with no reaction for weeks.  He reacted to a piece of brownie the size of my thumb nail.  I couldn't find an amount of baked good other than nilla wafers that worked for him.  I kept them in his diet to keep the egg door from slamming shut.  Then he tested neg again for hbe and the doctor, not believing that DS really reacted to egg at all since he passed a challenge, told me to feed it to him.  I didn't feel comfortable with that so I made bread with just the yolk and DS was fine.  I made bread with a whole egg and DS was fine.  I made a cake with one egg in the whole thing and baked it over 30 min at 350.  DS at about 1/8 of an egg in the cake he ate.  At first he had no symptoms at all but in the end he got swollen lips and an itchy, funny feeling mouth.  So, my son's theshold amount varied hugely.  Why is that?  What does that mean?  It's so weird.  I thought you either grew into or out of allergies.  I didn't think sensitivity could be like a wave where a tiny amount could make one react, then not, then again, then not.  Very weird. 

[hedgehog]

I have to go to work in a few minutes.  I will post more later.  And feel free to pm me, as well. In fact, if you would like to talk, we can arrange for that, too.

[CMdeux]

lakeswimr, I can tell you WHY our allergist (who is someone that you know, if by proxy) felt that DD was a VERY poor candidate for a desensitization protocol.  I say this because it sounds like it might be germane to your set of considerations in light of this:

So, my son's theshold amount varied hugely.  Why is that?  What does that mean?  It's so weird.

This is DD.

We know that there are times when her pn threshold is high enough to tolerate some amounts of contact/aerosol exposure.  We also had the very bizarre experience of having a previously outgrown-in-infancy milk allergy RESURFACE clinically (but with negative spt) after she started aeroallergen SCIT at 5-6yo.  She experienced ana from SCIT quite regularly the first 3y until our allergist (an immunotherapy guru himself) figured out how to tweak things so that she could tolerate them better.

Milk allergy has only NOW really retreated to anything close to "normal."  This was the real deal-- hives from contact, even baked milk or XC would cause systemic rxn at one point.  It was beyond bizarre.

Okay, so with that in mind, we challenged baked egg at VERY low dose four years ago, when she was ten.  I detailed this process here.    I trusted no commercial products because the amount was so low and needed to be so precise for so long.  She was eating 1/90th of an egg-- 80 milligrams-- daily for a long time.  Even so, this dose caused her to ana again to an allergy injection.  (Mild, but CLEARLY systemic rxn).  It also increased her pn sensitivity significantly-- this was the same year that she had a horrific reaction to what we suspect was a tiny, tiny ingestion from contact at a school-wide event.  LOC, very very scary.

So clearly her egg and milk allergies are not NORMAL TOLERANCE.  They may never be.

After talking it over with her allergist, we both agreed that pn desensitization would probably enhance the risk of fatal ana during dosing to a level that HE couldn't possibly live with-- he urged us NOT NOT NOT to do it-- with her.  Based on her history, her threshold moves around, and her reaction history is vicious. 


Even after 2y of daily dosing with egg at levels under 1/50th of an egg, being off of that dose for 3 weeks meant that she didn't HOLD the tolerance completely.  (red flag number two)  It needed to be daily dosing.


So what have we done with milk and egg, then, in light of this?  We don't SHOVE on the threshold.  Again, this is something that we've had a lot of conversations with Dr. Awesome about over the years.  He now feels that the only good way to desensitize some people is to BBQ them.  Low and slow. 

  We just keep it WAY within what we know she tolerates day to day, and keep a closer eye on things when she's under some kind of immunological strain-- illness, pollen assault, lack of sleep, extreme stress, etc.    She can eat things with XC warnings, but DD has never eaten anything with large amounts of egg in them.  She has eaten (local brand) donuts (egg yolk, about the tenth ingredient), Hawaiian rolls (whole egg, again WAY down the list... but even so, my teen figured out the hard way that eating TEN of them was a bad idea and it gave her a wicked stomachache and headache)...

Milk, she regulates.  Egg, we help her regulate because it seems (for her) to be trickier.    It's only been in the past year that she hasn't had a weighed daily dose of baked egg, and TOTAL avoidance otherwise.  er-- at least what total avoidance looks like in most people with egg allergy, let me say.

Here's how I picture this with kids like her-- and allergist seemed to like my analogy:

the allergies are like a raft made of logs loosely tied to one another; if you push DOWN on one part of it too hard, another part is going to pop back up above the waterline, and you can't always predict where.

[CMdeux]

Oh, and it's not so simple as "I can tolerate this dose" and "I can't tolerate this dose."

It seems to be a boxcar average of consumption over some unit of time in addition to tolerating a particular FORM or DOSE.

DD's tolerance for milk seems (as of right now) to be about 2c of milk (protein equivalent) over about 2-3 days.

Does that make sense?

So if DD has chocolate milk heated up for breakfast, she can't also have cheese with lunch.   Definitely not yogurt or kefir later in the day.  We don't keep regular milk in the house-- we do keep half-and-half, and I buy single serving chocolate milk for her a few times a month.   She eats most of her bandwidth there in cheese, which she loves.

If she eats two donuts, then we probably won't risk egg XC pasta with dinner.  She really doesn't eat things MADE with eggs; that is, we don't cook with them for her, and probably never will. 

On the other hand, doing this low-and-slow approach seems to minimize EE risk, and it also reduces risk from contact very significantly.  I've mentioned how life-altering it has been at some length.  Egg was seriously restrictive at one time.  WAY way, way worse than pn or shellfish.  WAY worse in terms of quality of life.

All of that to say that I can see your allergist's point.

[twinturbo]

I may be paraphrasing one of the papers from a Japanese allergist collective incorrectly, but from what I read and if I understood it correctly enough the philosophy deviated most significantly from the US protocols in the individual was encouraged to consume allergen any and all forms possible, as long as it was in relative terms to the individual's tolerance. It was not the hard protocols for dosing so it would be fair to say it was based more on the individual's tolerance than force feeding the regimented amount of allergen. Less of a one size fits all protocol even if it amounts to one group on 1/8 baked egg, 1/6, 1/2, etc.

@lakeswmr Well, I think in comparison with a lot of the general population entering that treatment center you know the risks better than most. I'm not going to list the risks because I think we're all aware here. Although OIT may not be ready for general roll out it doesn't mean one treatment protocol may not be better than another. On the other hand that 95% percent success rate is meaningless without context in population, MFA, long term follow up, definition of success, again stuff we all know, right?

With MFA I might be inclined to ask them about their experience with MFA, particularly their set up in administration for cross-contamination of other allergens. Dr. Nadeau might not be a bad person to query on OIT for MFA it does seem to be her emerging specialty.

[hedgehog]

I am glad to hear that they now take most insurance.  I think DH may be responsible for that.

I would never suggest that it right for everyone.  I know it is certainly not one-size-fits-all.  But I would strongly encourage anyone who might be interested to look into it.  They are really excellent there.  So even though I know it is not right for everyone, I highly recommend NEFATC if it might be the right thing for you.

[lakeswimr]

This was very helpful.  thank you all.  CM-your raft analogy makes sense to me and so does the 'full bucket' type experiences you described. 

Twinturbo--good idea to ask about mfa and protocols to prevent xcontam with other allergens, etc. 

Hedgehog, thank you for the encouragement. 

I'm considering it.  Thank you all!