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Author Topic: Looking for Advice  (Read 1337 times)

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kwc

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Looking for Advice
« on: June 28, 2017, 11:36:35 AM »
16 year old son almost completed baked egg food challenge last year. Annual check up this week.  Looking for recommendations for next steps.  I'm being told that new labs may be ordered.  Anyone else have similar story and would like to offer input?  Junior in high school and would love to see him without the allergy in college.  Egg oral immunotheraphy?  Any other ideas or suggestions?
Thanks

Offline spacecanada

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Re: Looking for Advice
« Reply #1 on: June 28, 2017, 03:58:07 PM »
Welcome!  These are all great questions to ask your allergist at your follow-up appointment.  Did your son fail the baked egg challenge?  What were your allergist's comments on how to manage the allergy after that? 

Oral immunotherapy (OIT) is very experimental and not yet FDA-approved.  Some allergists do it, with varying protocols, risks, and results.  You will want to do extensive research to see if it is right for you and your son. 

Unfortunately, there is no cure for food allergies - even OIT isn't a 'cure'.  None of us want them, but we educate ourselves and others, take reasonable precautions to stay safe, and carry epinephrine on our person 24/7 in case of emergencies.  Typically, growing out of food allergies happens in early childhood and during puberty; rarely does it happen in older teens and adults.  There are some great resources within this forum on how to manage food allergies as a teen and into university and college.  I encourage you to read through some of those threads for helpful advice.  (I'm sure someone can provide links.)

There are many great people on this forum, with far more knowledge and experience than myself.  Some of them and/or their children have even grown out of their egg allergies. 
anaphylaxis to tree nuts, peanuts, and potatoes; severe dairy intolerance; vegan (preference)
family members allergic to dairy, egg, peanut, sesame, shellfish

kwc

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Re: Looking for Advice
« Reply #2 on: June 30, 2017, 03:18:29 PM »
Been reading the forum for years but after annual visit yesterday was wondering if I may have missed something on OIT.  Allergist said there were no treatments available. Perhaps may have meant not FDA approved.  Bake challenge last year went well but towards the end started getting stomach ache, lethargic, and Dr. administered Epi.  Dr. is recommending blood tests again before deciding on another baked challenge.  Of course everyone knows the cost of the blood test, and given his lower levels the last two years, would like to do another baked challenge.  Is this unusual or standard procedure to always do blood test annually before baked food challenges?
Thanks for the reply.

Offline spacecanada

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Re: Looking for Advice
« Reply #3 on: June 30, 2017, 04:19:47 PM »
I live in Canada, so we don't have to pay for tests or challenges. But yes, generally blood and skin testing are done before all challenges to confirm levels are low enough that a test is worthwhile. If levels are super high there really isn't any point to challenging the allergy unless there is no reaction history.
anaphylaxis to tree nuts, peanuts, and potatoes; severe dairy intolerance; vegan (preference)
family members allergic to dairy, egg, peanut, sesame, shellfish

Offline CMdeux

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Re: Looking for Advice
« Reply #4 on: July 08, 2017, 01:51:20 AM »
I'm assuming that this is an allergist that you've had for quite some time, then?


I guess a lot depends upon your son's history with egg-- but-- it's my understanding that pushing on the tolerance once there is SOME tolerance via a baked egg challenge (not really "can this person eat normally prepared, eggy foods..." but more like "what can this person tolerate WELL with pretty much complete safety?") then that dose can be regularly, safely administered pretty much daily... and THAT can cause the tolerance to permanently shift in the direction we all want (that is, little to no risk from xc, and maybe, maybe, maybe the ability to even "outgrow" the way that most people think about it).

Seriously-- avoidance only works for preventing reactions.  It darned sure doesn't help with outgrowing or improving tolerance. 

And yeah, I hear ya on not sending your kid to college with a LTFA to egg or milk.  {shudders}

Anyway.  My 0,02 is that some allergists take the attitude that there isn't a great OIT protocol out there for people with anaphylaxis hx-- well, maybe there is, and maybe there isn't, but we sure (still) don't know who can do such a protocol successfully and who can't.  Still.  What IS known is that very low-dose immunotherapy done over a very long time (years) DOES work, and it's really safe.  SLIT, for example, has been used this way in Europe for a long time (decades). 

There is just one place in the US doing SLIT for food allergens to my knowledge.  It is in LaCrosse WI.    Some allergists will do OIT protocols-- but do understand that these are definitely not risk-free, though most have a decent to great safety record.

On the other hand, the school of allergists from Mount Sinai training tend to take the view that there is a lot which is unknown about this-- that is, how tolerance does/doesn't become established, etc.  They tend to view challenges as less black-and-white-- more of a matter of establishing that the specific parameters of the challenge may have been below a threshold dose-- or not.

It sounds, certainly, as though your son's challenge pushed him over that threshold.  But it also sounds as though it might just have been a matter of a dose that was just too, too much.  Maybe half that much egg.... or half the concentration... or a quarter of it would have been okay?

Hard to know.    What WAS the challenge, if you don;t mind saying?  That might give me some idea whether I think your allergist is being too conservative, or just being black-and-white in his/her thinking.

But this is how we managed to basically home-brew at-home-OIT for egg that went on for five long years.  We never pushed the dose too high.  The most we ever did was about 180, 200 mg a day, in a tiny serving of VERY overcooked brownies.  For the first two years, I think DD ate less than a dozen eggs.  No-- total.  I made brownies for her doses, and made double batches which I weighed, cut up, and froze in batches for those daily doses-- starting with 1/90th of an egg.    Yes, well-cooked. 

   For years, if we tried to push the dose higher than ~200mg, or if there was other stuff happening (like living with a dog she became allergic to, etc.) then her tolerance would drop, and she's get the itchy mouth, stomachaches, etc. again.    We'd back the dose down a bit for a week or two...   but it was like clockwork; every day, she did that dose.


 At the end of that, however, she was apparently no longer allergic and passed an open challenge, NO problem.  For real.  The way that I tested this was the way that some of the OIT protocols have been set up-- at the end of each year of dosing, we'd try having her go off of those doses for a few weeks, then "rechallenge" by having her do that regular dose.  If she had any symptoms at all, then we knew that her tolerance wasn't stable, see-- she needed the daily dosing to MAINTAIN it. 

We waited until she could be off of that daily dose for months before we tried seeing what her tolerance was actually like with another challenge (which she passed). 



My daughter EATS EGGS. 

I'm not saying that anyone should do this without their allergist being a partner-- obviously NOT.  Just that having an allergist who wasn't looking for "pass-- or fail?" when DD challenged baked egg-- that was what set this up for success in the long run, I think.  We didn't try to take the dose too high initially.  We were also pretty cautious because of DD's history, which included pretty convincing anaphylaxis from traces of egg.  She has a history of unstable eliciting/threshold doses for her food allergens, and she's asthmatic.  All of this meant that she was not likely a good OIT candidate-- but maybe a good SLIT one instead.  So that was the approach we took.



DD18 still has to be careful how MUCH egg she gets in a 2-3 day window, just like she does with milk.  However, we no longer WORRY about the allergen, and as you know, that is huge.


Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

kwc

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Re: Looking for Advice
« Reply #5 on: July 10, 2017, 02:44:40 PM »
Really great informative post and appreciate your response.  I have inquired with my wife as to the recipe for the baked egg challenge.  We prepared it at home but I don't remember at this time.  We have used the same allergist for years and is conservative in nature.  We have 2 boys (13 & 16) with egg allergies and the oldest is the only one that has had the baked egg challenge.  I will post the recipe when I get it. 
Thanks

kwc

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Re: Looking for Advice
« Reply #6 on: July 14, 2017, 04:16:37 PM »
Still looking for the recipe for the baked challenge and will post once I find.  I asked for my oldest son's test results for the last 3 years and have included as an fyi.  He is 16.
2016  Egg Yolk= 1.37 kU/L  Egg White = 2.03 kU/L
2015  Egg Yolk =1.19          Egg White = 1.81
2014  Egg Yolk =1.78          Egg White = 2.60

Offline CMdeux

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Re: Looking for Advice
« Reply #7 on: July 15, 2017, 02:32:15 AM »
Well, I can tell you that those are WELL under a 50% expectation for a food challenge pass, so...

(I think that for egg white it's about 6.0-- that's my recollection, anyway.)


That isn't to say that it couldn't be a fail with lower IgE values, of course. 

Was this an open challenge?  That is, was your son aware of when he was being given the challenge dose of egg? 

Our allergist will only do baked egg challenges blind and with a control, particularly when the patient (or parents) are nervous about a fail.  That is, he mixes the allergen into a carrier-- and you don't know when he begins offering the allergen, since the first dose (or three) of the afternoon is without the allergen mixed in.


Resistance isn't futile.  It's voltage divided by current. 

Western U.S.

kw

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Re: Looking for Advice
« Reply #8 on: July 17, 2017, 02:23:26 PM »
Our allergist opposed the blind test.  We recommended it, but she was in favor of having him knowing it had eggs.  We read a lot about blind challenges and thought that would be the way to go due to anxiety issues before. 

Offline hk

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Re: Looking for Advice
« Reply #9 on: July 26, 2017, 11:39:32 PM »
My 13 yo dd will be graduating from egg OIT this week.  She failed a baked egg challenge on the first tiny bite about 18 months ago.  Now she has more or less breezed through egg OIT in 3 1/2 months.  She had two minor reactions in the office early on in the treatment.  Our allergist offers OIT and SLIT to every food.  We will be moving on to peanuts/tree nuts/sesame combined next and then one more phase (probably SLIT) to her remaining allergens.  She was cleared for cross-contamination to egg a few weeks ago and it has been life changing for our entire family!  best of luck to you!

CMDeux - I almost never come on here anymore.  I had no idea that your daughter is eating eggs now.  That's wonderful!
DD (13 yo) - peanut, tree nut, egg, sesame, avocado, cherries, mango and possibly fish?
Me - EoE

kwc

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Re: Looking for Advice
« Reply #10 on: July 28, 2017, 02:45:44 PM »
When you say graduating from OIT what exactly do you mean?  Research through the years I recall that you have to have egg in your system to stay reaction free?  Is that correct?  Also, what were the IgE levels when you started OIT? Last question is what part of the country do you live and how did you find a Dr. to do the OIT?

Thanks for the info!
Kelly

Offline hk

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Re: Looking for Advice
« Reply #11 on: August 04, 2017, 06:15:49 PM »
Yes, she still has to consume egg.  It is twice a day dosing for the first month after "graduating" and then it is reduced to once daily if she can do that and remain reaction free. 

She worked her way up from .1 ml of 1/100th of an egg to 30 grams of egg twice a day. 

We are in the Bay Area and our doctor has offices here and in Oregon and Washington.  People come to him from around the country.  Our regular allergist started offering OIT earlier this year, but we opted to go with a different doctor due to his experience.  There is a list of doctors who are considered experts at OIT and I will try to find it for you.

My dd was invited to do a multi-allergen OIT clinical trial at Stanford (and I know several people who did it this way), but I did not have a comfort level with that and felt that their protocol was extremely aggressive and obviously it can't be as flexible as private practice OIT.
DD (13 yo) - peanut, tree nut, egg, sesame, avocado, cherries, mango and possibly fish?
Me - EoE

kwc

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Re: Looking for Advice
« Reply #12 on: August 07, 2017, 09:44:31 AM »
hk,
Thanks for the information.  We are located in Kentucky and see an allergist in Southern Indiana.