You are right, though, that there is risk in not doing it, too. 

You have to go by what  your allergist recommends.  My allergist would stop your child from continuing if there were stomach aches due to what he says is a risk of developing EOE.  His opinion is that that is worse than a regular egg allergy.  Then you end up with both an egg allergy and EOE.  As I said elsewhere, I know someone who pushed through and her child crossed off two allergens from a long list.  It is a risk. 

Quote from: lakeswimr on August 22, 2013, 06:40:09 PM

BooandBriMom--pushing through stomach aches in things like your baked milk *may* lead to EOE so I'd talk to your allergist about that if you haven't already.  That said, I know someone who pushed through and now her child isn't allergic to milk or egg anymore.  But my son's allergist said he would recommend stopping totally if it caused stomach aches because there is research showing a tie to developing EOE/EOS, which would not be good at all.

Any history of EoE was an exclusion criteria for the FAHF-2 study. They talked about it at length. Still better than anaphylaxis IMO.

It's a delicate game, to push hard enough that you know it's not psychosomatic and that you're actually making progress, but not to push so hard that you end up with worse problems. As CM said, it's experimental. It's not for everyone. I think knowing your/your child's tolerance for risk is very important with all this stuff.

Hi Cricket!

I think you are very smart with how you are thinking about the emergency plan.  I would stick with your old plan.  It is pretty standard.  The new allergist's plan is not safe in my opinion.  I would print out the the FARE emergency action plan and the old FAAN emergency action plan if you wanted to show your new allergist how far his plan is from standard.  Waiting until someone has breathing trouble can easily mean waiting too long. 

I didn't read all the replies but I skimmed CM's and I think I agree with her.  I'm in a rush.  I wanted to say that it is common to brush off minor symptoms of a reaction to rule out psycho somatic reactions.  The reaction you describe, although systemic, sounds minor to me.  I guess it depends on how bad the stomach pain was.  It would have put us in a watch and wait position if it was minor.  DS had stomach pain for part of his milk challenge and we continued until he had throat tightness at which time he got the epi and his symptoms were gone in seconds.  That's pretty standard for a challenge in office (we were in hospital).

The food allergy fatality this summer is extremely unusual.  Anaphylaxis that happens that suddenly is pretty much unheard of.  My son's allergist did not change our emergency plan as a result of hearing about that fatality.  He said in all his many years of practice he hasn't ever heard of anaphylaxis happening the way it is reported to have happened and feels strongly that if a reaction is going to get bad people will have time to use the epi meaning we will see the systemic reaction and have time to use the epi. 

I would be honest with the allergist that you want to follow your old emergency plan all the time including during a challenge and as long as he agrees to that you could try.  Something like 80% of egg-allergic kids (maybe a bit less but a high percent) can tolerate baked egg so it could be worth doing.  Those who can eat baked egg are much more likely to outgrow. 
----------------

BooandBriMom--pushing through stomach aches in things like your baked milk *may* lead to EOE so I'd talk to your allergist about that if you haven't already.  That said, I know someone who pushed through and now her child isn't allergic to milk or egg anymore.  But my son's allergist said he would recommend stopping totally if it caused stomach aches because there is research showing a tie to developing EOE/EOS, which would not be good at all.

Cricket, I think it may be worth revisiting the usefulness of an emergency action plan. You may not need it for others in terms of caregiving, understood. But as a medical document dealing with difficult EMS and/or emergency room resident doctors who are critical of epinephrine use by 'anxious' parents, it can be a useful document. Paired with the anaphylaxis grading chart I've found it to be of extremely practical use in situations where seconds count and I need the people with the monitors and drugs and knowhow to be on board with me. In those instances I'm following doctor's orders. Anyone questioning it can look forward to having a meaningful conversation with the specialist we're established with on their own time.

Unfortunately, insurance coding matters as well in terms of covering a true emergency and also for documenting history later on. Having the written prescriptive orders prior to an instance could resolve an insurance challenge with a fax or emailed PDF.

 

... OR--

is your allergist willing to accept that you are NOT going to push that hard on the threshold, and that you would be willing to dose ONLY at a level that causes no reproducible symptoms?

(This is the route that we've chosen, with our particular allergist's blessing and encouragement.)


Either way-- know going into baked milk/egg dosing knowing that it is experimental, highly empirical, and requires a fair degree of intestinal fortitude as a parent.  It's scary if you think too hard for too long about what you're doing. 

The thing is-- for Boo and I both, it was scarier to think about two or three years in the future WITHOUT doing whatever we could to alter a critical threshold dose in the meantime.  <shudders>

That balance was far different when my daughter was 8 than when she was 11.

One thing to consider is how you'd feel giving baked foods if your daughter actually *passes* a challenge.

We are doing this for baked milk now and it's not easy. For some doses, my son has had mild symptoms (itchy mouth, stomach ache). We certainly did not treat those symptoms with epinephrine - they've become somewhat expected by now.

Are you ready for that road?

Ahhh-- yes, that is VERY helpful information.

So.

What was coded as part of that reaction (and/or communicated in discussions about your DD as a patient) is that YOU reported X, Y, and Z "subjective" symptoms, your DD made it through the challenge, but vomited-- with multiple symptoms... but which resolved.

You don't mention epinephrine, so it probably wasn't in the picture-- just the steroids for the asthma and long-term control, right?

That's both good/bad and also probably indicates why the new allergist feels as s/he does.  From the doc's perspective, this was a MASSIVE dose of the allergen, and a very mild anaphylactic response, one that took a long time to manifest and was never "severe."

Not saying that is actually the case-- what is actually the case, it sounds, is that the nurse prevented anyone from getting full information to know, because she was SO convinced that your DD was experiencing psychosomatic symptoms due to YOUR anxiety, blah-blah-blah... (reading between the lines there, and gritting my teeth while I type that one, believe me... B.T.D.T.  GOSH that makes me angry, stuff like that.     )

On the one hand, your doc has the wrong idea.  Because she really DID react pretty promptly, and clearly she is still severely allergic to whole egg, and your response was not at all unwarranted or over-emotional, from what you're said.

On the other, your doc probably has the bigger picture more or less correct-- it did take a massive dose to elicit a reaction, and that reaction didn't threaten her life.  (Yes, I realize that is largely luck of the draw, and maybe you don't even KNOW for sure given the lack of BP/peak flow/pulse ox monitoring, thanks a lot Nurse Nasty...)

BUT  the odds are still something close to 100% in light of the end result-- that she would have great tolerance for low dose baked egg.  He's probably right about that. 

Emotionally, though, your daughter may be unwilling to trust YOU again, YOU may not be ready to trust another allergist to treat you respectfully during a challenge, etc.  It may just be too soon to try.  In addition, you may just not be all that comfortable doing such a challenge at all in the hands of someone associated with that previous office.  (Though it sounds as though you really like the doc there, and that the doc-to-doc connection is what exists with the current allergist.)

I'd be very angry too.

Honestly, I was none too pleased that OUR allergist was so dismissive (initially) of my DD's seemingly "impossible" aerosol reactivity with peanut.  He had to see it to believe it, and man was I ever insulted that he didn't take my word for it (I'm a scientist, and I was seriously angry to be treated to the "mom's a little hysterical" act).  But in fairness, once he DID see it-- he's been one of our staunchest advocates ever since, being willing to go to bat for her with schools, camps, the city, airlines, etc. etc. many times over the years.    Still.  There is that evil little part of me deep inside going "told-you-so-told-you-so" even though we have a terrific relationship with him now.  He did initially think we were a little bit crazy.  Then again, when you're an outlier among FA people, even, that is a pretty rational initial evaluation.  What happens to outliers in real life IS kind of bizarre and irrational-sounding unless you witness it yourself with a critical eye.  So I'd have approached us the same way, probably.

I had NO objection to him including a negative control as part of the blinded challenges that we've done with him- egg and hazelnut both, and sesame earlier under his advice.  It made us very much more comfortable that he would respond well to concerns about the earliest (often subjective) symptoms and not dismiss those as possibly somatic in origin.  In light of that experience, I think that ANYONE who has severe reaction history with an allergen probably ought to be using a blinded protocol in challenges.   It is just far better practice for everyone involved. 



I really wasn't offended or anything by your response-- just wanted to make sure that my posts weren't rubbing salt into an open wound.  A challenge gone wrong like that is a horrible experience.

Quote from: Macabre on August 22, 2013, 08:39:54 AM
CM wow--I am so glad you are here.

I echo this.

CMDeux, I did NOT feel defensive at all OR annoyed, etc. by your questions.  I'm really sorry that it came across that way.  I interpreted your questions as trying to get more details so that you had a fuller picture of my DD's allergies and of what happened.  I hadn't intended to be defensive in supplying those details.  I imagine the emotion that you picked up was the overall emotion I feel about my daughter's previous IOFC and my concern with how this new allergist would manage an IOFC.  I have to admit I spend more nights than I care to admit fearful that my daughter could end up having a fatal reaction.  I apologize that the emotional angst (I'm picturing how defensive I feel even to this date v.a.v. the dismissive nurse) and thinking that emotion probably pervaded my response, though please let me clarify the feeling wasn't in any way connected to your questions.  Again, I'm thrilled that you seek to understand better and more so that you provide more informed guidance!  I feel privileged!

I will respond more later, but to address one quick question, I do know that the IOFC in Chicago was coded as an anaphylactic reaction.  The M.D. and fellow only came in after my daughter vomited.  At that point, the nurse, who dismissed the mouth pain, the stomach pain, etc., told me that she failed the challenge and did get the M.D. and fellow.  The M.D. and fellow rushed in.  They moved us to a different examining room.  This dismissive nurse acted really annoyed and told another nurse who started to put a pulse ox monitor on my daughter not to.  This other nurse acted shocked, but removed the pulse ox from my daughter.  (Are you getting a fuller picture of WHY emotion probably pervades when I start writing about this?)  The M.D. and fellow came in and told me that my daughter had had an anaphylactic reaction.  They told me it was "good news" because she made it all the way to the end of the challenge.  I retorted that she had complained of mouth pain and stomach pain from the first bite.  The M.D. said that may have been a sign that she was having an allergic reaction.  (This M.D. is the most patient, calm doctor I think I've ever met.)  The M.D. then said that they were giving her steroids now and doses to take home because of J's asthma.  We stayed at this allergist's office six hours total. 

Our new allergist never asked to have my daughter's medical records.

I'll write more later. 

But thank you everyone for the helpful responses!  And again, CMDeux, I'm sorry that the emotion I feel about this came across as a defensiveness or annoyance with your questions.  That's actually the opposite of how I feel about you or your questions.   

Take care! 

CM wow--I am so glad you are here.

One other thought-- we were once burned by this, too-- what exactly took place when your DD reacted at that challenge?

Obviously-- the nurse was not terribly helpful nor understanding.  But what happened then?

Did the doc EVER observe your child?  How was the result coded in her chart?  Do you know?

Because your current allergist could be basing the opinion that a baked challenge would be "no big deal" on something (incorrect, perhaps) in that charting.  Man, I hate to think that this got coded as "Mom freaked out, we ended the challenge" but I've seen some weird things over the years.  I sure hope that isn't so.


ETA:  a "bite" of egg is probably something on the order of 1400 mg (or more) of pure protein-- a whole egg is around 60 g, and about 12% of that is protein. The reason that I mention that is that a baked dose (even a full serving of something made normally) is likely to be WAY under 400 mg.

Also-- there is a LOT of ground in between "continued avoidance" and "eating baked egg freely."    My DD avoids ingestion about as much as she ever has, and I daresay about like your DD does.  EXCEPT for that controlled (very low) dose.


My personal advice to you, based on both your posts and what we know having lived through a lot of years with a really hair-trigger egg allergy?

1.  Hold off for now.  You are new to the area, it would feel unsafe to you to dose at home (we're a 50 minute helicopter ride to the nearest pediatric hospital, fwiw, and we're not what is considered "far" from medical care-- but if we'd just moved from 10 minutes away, yeah-- it would FEEL remote).  Of course, we ARE only a few minutes to the nearest emergency room-- and most of them DO have more than adequate facilities and expertise for managing anaphylaxis, believe it or not.  But until you feel safe enough doing it at home, there isn't any point in doing the challenge-- and I can pretty much guarantee that your new allergist will have a lot of respect for you if you say that in just those terms.  It's pragmatic and realistic.

2.  DO NOT yet talk to the new allergist about the failed challenge in terms of setting up another one.  Wait until you can do so somewhat dispassionately-- and until he's had a chance to see that you are not neurotic and paranoid.  (back to my thoughts above-- if you have a way of finding OUT what is in that chart, I would... when you can)  That's going to be a much better starting place.  When you do talk to them, focus on what THEY will do, not what the other group DID do.

3.  Your excuse can be that so soon after a fail, you/your child just aren't comfortable, and want to establish a patient relationship first.  Maybe you want to wait until your daughter is closer to adolescence-- homeschooling buys you time to be patient, after all.  There is a LOT of trust required in an IOFC, and a good allergist will respect that.  I have to go in trusting that our allergist will do everything humanly possible to save my child if something goes horribly wrong. 

4.  Consider whether or not you're a bit traumatized by what happened during that challenge.  Because it wasn't full-scale, intubation-and-ICU anaphylaxis, it may seem like you shouldn't be-- but anaphylaxis is a scary thing no matter what.  Having set your child up to do that challenge-- guilt, much?  Take care of YOU here, too.     We always go into a food challenge with the mind-set that it will be a fail.

Another option is to ask frank questions about how your allergist knows others in the field.

Ours, for example, knows the group at Sinai (having trained there), was previously at NE Allergy Associates, knows Dr.'s Burks, Wood, Sicherer and Wasserman via having worked with them all.  So he knows them well enough to pick up the phone and chat (and has).    I consider this to be a tremendous bonus, given the small area that we live in (similar to the OP's situation).

We're not "shared" with one of those gurus-- but we are lucky enough to have an allergist who readily admits when something puzzles him-- and he's more than willing to ask if anyone else DOES know.   

QuoteIt is true she did not suffer a catastrophic anaphylaxis reaction during the IOFC.

I'm sorry if my question seems to have left you feeling some what defensive.  That certainly isn't my intention.    I'm trying to tread gently here-- I know that you've understandably got some raw nerves after a failed challenge-- and hey-- maybe you just really aren't emotionally ready YOURSELF to contemplate doing a baked egg challenge at this point... which is FINE.

I understand that you are extremely vigilant, but still-- this is a child who has a severe egg allergy, yes? (Clearly.)  I understand (and already assumed, actually) that you control what she eats VERY carefully.  I expect that her ingestion of egg is pretty much zero via your caution.  Sorry that wasn't more clear in my initial response.

  I was more considering environmental exposures.  Mystery reactions in places where egg is a possible culprit.  Shopping cart handles, library books, the mail, etc. etc. That kind of thing.

You presumably do allow her to leave the house, right?    If so, and you don't see a lot of contact reactions, then-- again, with complete respect for the fact that she is VERY allergic... she's probably encountering low-milligram amounts environmentally at least occasionally.

Meaning-- she doesn't seem to be at anaphylaxis risk from contact alone in everyday settings.  (Again-- I'm assuming that like most people with food anaphylaxis, you're pretty avid about handwashing-- but I know 8yo's too, having had one myself).

  It's actually REALLY good news if that hasn't even been the case in the wake of a major fail like this, because that kind of thing can "reset" the allergy and make things worse for some people for a while.  The fact that it didn't is a great thing. 

It's also true that she actually ATE scrambled eggs.  ATE them-- without needing to be hospitalized or anything in the process of failing that challenge.  I'm just considering this to be kind of awesome, relatively speaking!!    So you do have information from that challenge.  She can't eat straight eggs.  She also managed to eat a bite of pretty much pure egg (what is that-- 400 mg??)  without a grade IV-V anaphylactic reaction. 

   That doesn't mean that your child is "less allergic."  Not one bit.  It means that her threshold is possibly higher than you had previously estimated, though, right?  (Which should be REALLY good news, because it potentially means that a lot fewer things that she can't avoid-- environmental residue, I mean-- could be lethal...     )

Again, not that she's not allergic-- but that is a pretty good indication that she could probably tolerate some dose of baked egg.  It might be low, but it's probably something you could handle at home.  Because that TOLERATED dose would be one that resulted in NO symptoms.  One that is LOWER than what you know she could tolerate. 

   My DD is absolutely still allergic to egg.  No doubt in my mind.   But she no longer seems to react to others eating eggy stuff around her, doesn't pop out in hives when we're at the grocery store near the deli or bakery, etc. (ALL of those things were true previously, and she reacted-- universally-- to anything run on shared lines, couldn't eat in restaurants, etc.)

Her starting baked egg dose was 1/95th of a regular medium egg, baked into a "family-size" (9X11) brownie mix at 370F for thirty minutes (which was ten longer and 10F higher than called for).   Honestly, her threshold dose was so low (she reacted-- floridly-- to a skin prick with low-egg flu vaccine the year that we challenged her) that I never in a million years thought that she'd pass a baked egg challenge.  Blew me away that she tolerated it.    She only ever had any symptoms at all about a year in when we had a sort of perfect storm with the start of tree pollen season, an allergy shot, and a brewing upper-respiratory bug all on the same afternoon.  She had an itchy mouth that day and the following one-- the doc cut her SCIT dose back and the next allergy shot was fine.    We've withdrawn her from dosing twice now-- once for three weeks after the first 20 months of dosing-- and she had itchy mouth again when we started dosing again-- so we (meaning the allergist and I) opted to NOT NOT NOT push that dose any higher since it doesn't seem that she is a person who "holds" the dose well. 

She's now been off of her daily egg dose for four months, and I'm about to start her out at that lowest dose again in a two more weeks, and climb back to where it was (250 mg of egg, or about 1/30th of an egg, baked into a mini-muffin).  We shall see.

Just to point out-- this kind of thing can be VERY low risk.  Depending upon where your allergist was trained--and with whom-- s/he may be more or less inclined that direction.  It sounds like the previous group was a SUPER-aggressive one w.r.t. challenges,  and that this one may be less so.  That would probably suit your needs better. 

One last thought-- what convinced me to try this with my own daughter, then 11?

My DD:  Would you do it with your son?

A:  I already did.  I'd never have suggested it to you and your parents otherwise.

  I wish everyone had an allergist like ours.

It's also okay to get to know the nursing staff with the new allergist-- ours are AWESOME.  They are very very vigilant with DD, knowing her history (which is not unlike your DD's).  I can't IMAGINE one of them not checking DD's blood pressure under the circumstances you describe-- they'd certainly draw epinephrine for her and call the doc.  We KNOW-- because they have.


I might not be ready to do a baked challenge so soon after a fail-- and so soon after getting a new allergist-- but I'd sure be planning it for the coming year or so. 

It's also probably something that would make her teens a lot safer.  (Thus my seeming pushiness-- and probably your new allergist's, too.) Keeping avoidance at crazy-high levels beyond what avoids overt reactions can keep threshold doses dangerously, crazily low-- or push them that direction if they aren't already there.  You probably know that, but I'm mentioning it in case you don't.  Avoiding ALL risk now may be trading it for increased risk during adolescence-- and that's not good, either, obviously.  Teens WILL take more risks that we'd like.  Being nervy enough to tackle baked egg challenge and dosing (in spite of our very real and very realistic fears-- which you know well) is what allowed my DD and I to go to EUROPE.  NO way would that have been possible with the kind of threshold she had at your DD's age.  It has given DD enough "normal" that she doesn't press the boundaries as much as we'd feared as she is gaining independence.  (She's 14 now, and we never lose sight of the fact that she IS the poster child for a FA death.  ) 

 

A mutual patient is what you would expect based on the term. Primarily we established with Sicherer at Mt Sinai routing all big ticket items through them. RAST, SPT, IOFC were all for Sicherer and the Mt Sinai team under their protocols including labs. For either minor issues like flu shots (at the time it was still done at allergist's office), prescriptions, or for more urgent needs like next day follow up office appointment after a reaction or anything it wasn't worth the commuter flight into NYC we saw the local guy.

It was a happy arrangement because the local office didn't have to process all the stuff that takes up so much of their time relatively speaking, and Mt Sinai is absolutely happy to fill prescriptions but it didn't make sense because they didn't know our local pharmacies. Our agreement was to have a routine appointment with local guy once per year to keep him updated with how things were going. What was nice is he of course knew of Sicherer but Sicherer also knew of him by name, explaining we weren't the first mutual patient between them.

My insurance plan is not an HMO, FWIW. We buy the optioned one to have a wider network.

Thank you so much to everyone for all the responses.  A few quick clarifications and responses.  I would love to hear more about "mutual patients."  We homeschool, so the action plan isn't relevant to us right now.  (I'm always with her.)   I have considered just giving her an Epi Pen during an IOFC.  I was thinking of discussing with the allergist the possibility of me just giving her an Epi Pen, with him understanding that I was doing what I felt I needed to do for my daughter, even if he didn't feel Epi Pen was necessary.

CMDeux, I especially appreciate your thoughtful and informative reply.  To clarify, 

My daughter is 8 years old now.  Her IOFC with the over-supply of egg (and yes it was an open challenge) occurred when she is 8.

She has had no reaction to egg since the IOFC because I am incredibly vigilant in avoiding all contact and sufficiently informed by now to know what products contain traces of eggs, to which she has had horrible reactions, and avoid them.   Her lack of reaction doesn't bespeak tolerance.  It bespeaks our lifestyle built on avoidance of her allergens. 

From what I understand, she quickly met the definition of anaphylaxis during the IOFC -- mouth pain and stomach pain.  The nurse never consulted the MD and dismissed the symptoms as "anxiety, etc."  It is true she did not suffer a catastrophic anaphylaxis reaction during the IOFC. 

I'm assuming the baked egg challenge would be me supplying a muffin, etc.  We're supposed to have RAST drawn and then discuss the results.  I'm confident that since her RAST at age 5 with the IOFC was negligible that her RAST score for egg will support an IOFC for baked egg. 

I have not discussed with our new pediatric allergist my discomfort with how the IOFC in Chicago was handled.  I feel angry every time I think about it.  I'm concerned with my ability to discuss it without alienating this new pediatric allergist.  I do feel I need to try to find a relationship-preserving way to let him know that I'm not going to allow an IOFC to continue if my daughter has allergic symptoms.  I would LOVE to hear advice on specifically how to approach this in a diplomatic, relationship-preserving way.  (During the IOFC in Chicago, we had a 20 minute wait between doses and no observation.  My repeated calls to the nurse that my daughter was having problems were dismissed by the nurse without any consultation with the doctors, and the nurse continued to bring in more egg.) 

I appreciate what you're saying about having emergency treatment measure, additional monitoring equipment, close proximity to the ER, etc., might make a physician more comfortable with managing a reaction without epinephrine.  I would see him in his office 1 block from a Children's hospital (at my instigation, not his, though I change offices all the time so it's not a problem.)  I would like to find out more about his monitoring protocol, emergency equipment, etc.  He trained at a pretty major teaching hospital, so I would think he would be well-prepared. 

I REALLY like the idea of explaining to him that with the recent death in CA I feel nervous about delaying epinephrine and asking him if he can agree in advance to handle anaphylaxis more aggressively than he might otherwise feel the need to.  I really like that idea.  His daughter shares many of my daughter's allergies, so I'm hoping that as a parent of a child with anaphylaxis that he can appreciate we all constantly manage risk and draw different lines in the sand of where we feel comfortable or don't. 

The idea of finding the tolerated dose is insightful and helpful.  We live in a more rural area now so that I can homeschool long-term.  The tradeoff is we are about 30 minutes to the Children's Hospital, which leaves me feeling a need to be extremely conservative with risks.  I would be afraid to try any challenge at home with our circumstances of distance from treatment and of historic reactions to trace amounts.  I appreciate the suggestion, though.  For others closer to medical treatment, that suggestion probably will be highly useful. 

Thank you!

Not to derail this thread, but TT, I'd be interested in more info on your mutual patient arrangement with Siani.