I am so glad that you have a professional that you can trust; one who is in YOUR corner and has the same priorities that you do. 

I am the op.  Just wanted to give an update here.

We saw the second opinion allergist who is now our new allergist.  She seems wonderful, I was really impressed with her.

She was definitely concerned about the symptoms that were still occurring.  We are going to try to find a maintenance dose that does not give dd symptoms.

There is some ana risk.  She's heard of people who have tolerated a dose for a long time (years) and then, bam, ana - so she really seems to have a healthy respect for the risks involved.  We will see where this all leads, but it will probably be a long journey, so no quick answers.

What you describe does not sound like she outgrew her allergy.  It sounds like she ALMOST outgrew her allergy and is on her way to outgrowing it but most people who pass challenges and start adding a food back into their diet do not have those symptoms.  Those who do often get told by their allergists to hold off on the food a while longer or to lower the amount they are giving.  My son's allergist would have me stop the food entirely, I think, if that happened with him.  I would recommend being VERY careful. 

One more thought (and this is general, not necessarily specific in light of what you just posted above):

there may be reason to be VERY cautious about encouraging a child in the tween/teens to become somewhat cavalier about this constellation of symptoms.  I can think of two reasons why this makes me profoundly uneasy.

1.  In girls in particular, we (culturally, I mean) often train them to be socially gracious/submissive to begin with, and this kind of thing can be deadly with respect to anaphylaxis if they assimilate the message wholeheartedly-- that is, at what point DO the symptoms become "enough" to tell?  Enough to insist upon care?  Enough to over-ride another authority figure?  Where is that line if we deliberately encourage them to "ignore" or "don't bother me/your dad/your teacher/the nurse/the doctor" with that? 

1a.  Secondary to even food allergy concerns, this kind of "Ignore what you're feeling because {external authority} said so, and they know better than you do" has profoundly disturbing ramifications.  It teaches our kids to ignore their gut instincts in a very powerful and insidious way.  If it's necessary, so be it-- but I'd probably choose to address it VERY carefully, and make it clear that it's an exception, and NOT the 'rule.'  I can see this fueling intimate partner abuse in a very significant way.

2.  Depending upon history and other FA Dx, this may necessitate a kind of 'parsing' of symptoms and their probable causes (and likely sequelae) that teens and young adults may really not be yet equipped to be doing.  Or, for that matter, that there may BE no parsing.  After all, hives + oral tingling/itching is two systems... except that it's local and probably a matter of direct contact with the allergen...  is it systemic?  Or not?  Who knows, right?  In my own DD's case, however, there might be few other symptoms prior to abrupt and complete incapacitation and inability to care for herself, even insofar as calling for help and using an epipen. 

Anyway.  I'm pretty sure that our guest has considered a lot of these things.

I'm just adding to the implied (and wholly appropriate) caution in the original post.  There are a LOT of reasons to think that this kind of thing could be extremely dangerous.  Extremely.

Quote from: Janelle205 on February 10, 2013, 01:23:05 PM
Only thought I had was: Does she still have these symptoms if you give the allergen to her 'blind'?  I'm not suggesting this because I think that it's all in her (or your) head, but I think that is a question that my allergist would definitely ask.  And this may not be possible to test - I would be wary of giving something to an allergic person (especially a child) without telling them about it.  Just wondering if you had been able to rule out the possibility that it is psychosomatic.

This may well be an issue the new allergist will look into, and I'm fine with that as long as it's done in a respectful way.  DD is not really anxious about all this - she's been really great about everything.  Plus, some of her symptoms, I think, would be considered pretty objective as verse the tongue itching which is more subjective.

Anyway, this is my last post under this guest name, but it's been really helpful to share some of our story here.  Thanks again.

I'll be hoping that you get better answers from your second opinion.

The oral symptoms would really worry me - I don't think that you are being ridiculous at all.  My apple allergy started out as oral allergy syndrome, mouth and throat itching, hives.  I've now had contact ingestion anaphylaxis from processed apples.




Only thought I had was: Does she still have these symptoms if you give the allergen to her 'blind'?  I'm not suggesting this because I think that it's all in her (or your) head, but I think that is a question that my allergist would definitely ask.  And this may not be possible to test - I would be wary of giving something to an allergic person (especially a child) without telling them about it.  Just wondering if you had been able to rule out the possibility that it is psychosomatic.

Thank you all for your sharing your thoughts with me.  I'll let you know how the second opinion goes.

I don't know the answer to your question.  Based on what happened to my DD, I would suggest treading very carefully.

DD passed a baked egg challenge.  After 6 months, she passed an open food challenge eating a hard boiled egg.  Yolk first and then egg white.  She passed.  A month later, she no longer wanted egg to touch her mouth and would not eat pancakes.  They bothered her mouth.  She did eat meatloaf and baked good with egg.  A year later after my pleading with the allergist, they retested and her blood tests came back with high numbers.

So, DD is considered allergic to direct egg.  If the egg protein is mixed with wheat protein and heated for a long period of time (unlike pancakes) she can tolerate it and still does to this day.

For her, in my opinion, the repeated exposure came with warnings and those warnings were difficult to ignore.

So for her, yes, her situation is much better, but did she outgrow?  I'd have to say...NO!

No problem.   


My answer is that this is probably somewhat EASIER with a child/parent team that has experience with oral allergy syndrome-- because those are the types of symptoms that you have to put up with during desensitization, basically.

Some other things that make me VERY nervous about this with a known anaphylaxis trigger, though-- and maybe this doesn't apply to our OP, but I mention them here anyway...

hormonal fluctuations during puberty (esp. in girls)
illness/other tweaks to threshold

We've opted (with our allergist's encouragement) to stay AWAY from doses which elicit anything resembling objective symptoms.  The reason is that we feel that this is flirting with an unexpected drop in triggering dose on the wrong day. 

We had to do this for years with milk, but that one didn't really scare me (because DD didn't have anaphylaxis Hx with it) the way too high an egg dose does.   

In your shoes, I might make controlled-dose baked goods so that you KNOW about what the threshold is, and so that you control how much is getting ingested.  I'll also say that dilution in other foodstuffs can help with the oral symptoms, so maybe making cookies or mini-muffins with a very small amount of the allergen is an option. 

HTH. 

Do you trust primary ped to submit if you help word? The only requirement is that it come from a medical professional.

Boo - thanks for your response.  It's so funny, I read your blog post last night after posting this and found it so interesting.  We are not in a desensitization program, but I do feel we have been left alone in this zone.  I have imposed limits on myself when feeding dd although allergist doesn't think it's necessary.  I only feed it to her when I can keep an eye on her for several hours, I stop when I see enough of those mild symptoms, her asthma must be ok, always epi.  Now that the 2nd opinion is coming up, I'm thinking about this allergy and my bad experience with "my" allergist more than is probably healthy.  I just have to wait to get the expert opinion, but it's getting harder to be patient now that I may get some answers soon.


edited at the OP's request to remove identifying information about physician

Well...this is the dilemma raised by the FARE survey question about "would you eat a food containing some allergen if you could be assured it wouldn't cause a reaction?" From what I've heard, mast cells in the mouth and throat are the last cells to become desensitized. As we've gone through baked milk dosing, my son almost always has symptoms still in the mouth and throat. However, once the food reaches the stomach, acids break down the protein and there's no further problem (at least for him...so far).

From what I've seen, most allergic parents aren't willing to travel this path. If it's the only path through to desensitization, there are going to be a lot of kids who stay allergic all their lives.

One of the positives of the FAHF-2 treatment is that it doesn't require actually consuming the allergenic food to achieve (at least some) desensitization.

There's a section of AAAAI.org where a medical professional can submit a vexing question to other experts. It might be worth getting your allergist to submit an accurate inquiry there for another opinion/data point.

I've mentioned parts of my story on the board before, but basically dd passed an IOFC but is still having symptoms.  We are going to an allergist soon for a second opinion, but I'm just wondering if anybody else has had a similar experience.

Two of her most common symptoms are contact hives around the mouth and an itchy tongue.  These things happen almost every time she eats her former(?) allergen.

How long does it take before these types of symptoms typically resolve in the case of outgrowing?

Please note (especially newbies)- this is a unique situation - these types of symptoms should always be evaluated by a doctor (an allergist is best).  These symptoms can indicate a life-threatening allergy and the offending food should be strictly avoided while waiting to see a doctor.