New complacency in a child with a LTFA

[thegoodfight]

Hi there. I've posted many times before as eggallergymom, but I can't get my old sign on/password to work. My daughter is now 9, has a LTFA to eggs, asthma, and a history of anaphylaxis. She had a really frightening biphasic ana reaction a few years ago (exposure at school) and was so anxious about food and dying as a result that she didn't want to eat, couldn't sleep, and ultimately required counseling. Since then, the rule has been that she will only eat food that we provide. No exceptions. She brings safe treats to school parties, playdates and friends' parties, and I supply all of the snacks at her Girl Scout meetings. So this past weekend, my daughter made a big mistake and took (and ate) candy from one of her Girl Scout leaders. Fortunately, the candy didn't have any egg in it, but it was still a huge violation of that rule, and put her at real risk. I am not happy with the Girl Scout leader (she is an M.D. and knows well my DD's history), but I am really disappointed in my daughter, too. She said that the leader was giving candy to all of the other girls, so she wanted a piece, too. We talked at length about how dangerous that was, about how many candies contain egg, and about how that moment of enjoying being part of the group certainly isn't worth a trip to the hospital, or worse. I think she got it, but I would have sworn she understood this prior, too.
My daughter is a very bright and sensitive kid, and she is literally the last person I would have expected to become complacent about this allergy, given the ferocity of her anxiety a few years ago. Have you all encountered this? What do I do now? 

[CMdeux]

Well, here's the thing...


as they become adolescents, our role changes.  We move from "primary manager" to "coach" through those years.

Yes, this is nerve-wracking in the extreme-- as gut-wrenching in its own way as those toddler/preschooler years were, I'd say.   It is like watching them take their first steps all over again.... and knowing that our kids are taking them on the edge of a cliff that virtually nobody else around them is aware of...

Yes, autonomous decision-making IS normal.  If she's a "bright" 9yo who has lived her entire life with this, and reads labels at home... she may FEEL that she is completely competent to make such a decision (to trust another adult who has awareness, medical training, and experience). 

So I see this issue as one not only for her-- but also for you.  Some things that we started doing about this age that have been helpful in easing into this transition:

• emphasize that EVERY decision re: food is always going to be a "BIG" one.  NOT a kid-sized one like whether or not to call a friend now or after dinner.  As big as those decisions are-- does she REALLY feel ready to make them?  Probably not.  Does she feel ready to HELP you make some of them and learn how you do it?  Probably.


• pick a few things that are "probably" safe-- as in, ordinarily you'd opt to just do them-- and let your CHILD evaluate the risk using the information that you use.  RESPECT his/her decision, whatever it is.


• have your child begin doing one of your label read-throughs as  part of his/her chores-- we started this by having my DD 'read' labels either when shopping with me, or when I'd ask her to get me something in the kitchen

[thegoodfight]

Thanks, CM, those are good suggestions. My concern about the episode is that she didn't ask to see the candy label; she took the adult's word that it would be safe for her. It seems like it was a pretty impulsive decision. Nine year olds are impulsive people sometimes. The challenge being, of course, that impulsivity when it comes to food choices can be lethal for a kid with a LTFA. That's my struggle. I agree with the idea that she should have some degree of autonomy when it comes to these choices, but the stakes are just so high.

[CMdeux]

Right.  Just speaking as the parent of a strong-willed teen daughter, here... this is about when you have to step back and quit TELLING... and start having "conversations" that are more two-sided.

Rather than "That was a mistake.  What were you thinking??  What if..."

try "Do you think that was a good decision?  What was good/bad about it?  Why did you think that it would be okay?  Was that a correct set of assumptions?"

That forces her to be more thoughtful about the PROCESS of decision-making, which is what you're ultimately after.  If she's more thoughtful, that reduces that impulsivity.

On the extreme "safety" end of things, the answer is always-- "No thank you."  Obviously, that is NOT the choice she is always going to make as she gets older and goes places with her friends (as much as we as parents might wish that they would)...

on the other hand, if they get the idea that we are just the "No" people, then they may default to (highly flawed) adolescent reasoning on the subject.  "It'll be fiiiiiine!"  (Well, no-- not always.)

I'd try some role-playing and coaching.  What can she come up with that would have been better decision-making in this situation?

This is a problem mostly with girls (but also with some boys) as they become tweens-- they've spent their whole lives playing it safe on the sidelines, day after day after day... while they get left out.  They're TIRED of it.  It's as simple as that.  At the same time, they are also aging into a stage where they would-- LITERALLY-- rather die than call attention to themselves among a group of peers.  Some of them really do just that, as you're well aware.  I know that I am painfully well aware of it.  I discuss that openly with my DD.  IMMV, of course.

  I hope that before she opts to take a risk, she is thinking two things:   1) this is a BIG decision-- because it is a decision about food.  Life-or-death decision  2) is this worth anaphylaxing for?  How likely is that here?  How hard/embarrassing would it be? 

Emphasize that if she is making decisions about food on her own... she is also making the decision that she is ready to self-administer and call 911 for herself.  That comes as a package deal in a situation like this, as often as not.  That particular thing has given my own DD pause, because she knows how difficult that is when you're in the throes of a reaction. 

It's really uncomfortable when we have to hand over control of decision-making to our kids.  We know how flakey they are!!  OMG.  My DD cannot even remember to give her dog water without some reminders... and I trust her with THIS??     So yeah.  I get it.  But the thing is, she does have to make those decisions at some point... and by the time she is a young adult, they'll ALL be her decisions.  Plan that trajectory.

[my3guys]

I really like your advice CM, and it's very well -timed for me too!  My DS and DH went to get some frozen yogurt at a place we frequent this weekend...and neither of them  read the label on the different flavor choices.  I don't recall them having flavors with egg the last time we went...so I only reminded them to get the separated toppings underneath the counter.  Well, he came home and started complaining of a stomach ache, I asked him what flavor he had, went on the website, and sure enough it had egg.  Luckily (?) that just resulted in benadryl, chased by zyrtec and tums a few hours later as he had a horrendous stomach ache for about 5 hours.

He's always so careful....and then he wasn't. And my DH was there to boot!

To the OP,  I remember your dd's reaction and subsequent anxiety very well.  In one way, it's good to see that her anxiety has lessened.  But you certainly don't want her taking risks either!

[thegoodfight]

So sorry to hear about your son, my3guys. How scary, and how similar to what my daughter did! She's only lucky that what she ate was safe. I am glad your son is okay, though a five hour stomach ache sounds pretty wretched.

CM, you channeled my daughter a bit there. One of the things she said Friday after I read her the riot act (yep, I did), was, "But I am SOOOO TIRED of having this allergy!"  And I know that she is, and I know that it sucks to always be the kid eating something different than her friends. The whole thing sucks. But I also know that it's unlikely she'll ever outgrow this allergy, which means she needs to learn to live with it. Maybe medicine will catch up to her at some point, but the allergist has spoken pretty plainly to her about the realities of the kind of allergy that she has.

Out of sensitivity to her anxiety about death after that big ana reaction, I haven't shared the news stories with her that I know we've all read about kids who haven't fared as well after not making great food choices. I am thinking maybe it's time to share a bit of that information with her. Not to "scare her straight", but just to reinforce to a now older child that every decision DOES matter.

Thanks so much for your thoughtful responses!

[my3guys]

Thanks, and hope you got through to your dd.  I hear my ds say that alot about his allergies lately too, he's just sick of them.  And I have to say...I've gotten pretty good at moving on autopilot, doing what I need to do (well most of the time) to keep him safe, that I've kind of blocked out the emotional aspect of it.  I don't know that the allergic person ever has that luxury...

[YouKnowWho]

Last year our school had Rita's for field day.  No warning ahead of time.  (That has since changed with much resentment towards my family, thanks PTA).  It occurred when Ritas offered a PB flavored ice.

DS1 opted to take part in the treat - spoke with the teacher about understanding the risks, chose a flavor he had before and overall, I think made a good choice (risk, benefit).

DS2 opted to take part in the treat - didn't ask the teacher, chose a new exciting flavor and was proud he didn't have the PB flavor they had.  Are you kidding me child?  Remember that we skipped Rita's twice prior because they had the PB flavor in the cooler?  Not a good choice and put himself at serious risk (Sorry but 100 kids lined up for Ritas and they have PB - cross contamination nightmare).  He was read the riot act.

Turns out, that "brownish" flavor was not PB but mango (he is not allergic to tree nuts and yes, mango is not a tree nut but it is cross reactive with some).  Regardless the principal got an earful from me about allowing the kids to partake especially those with IHP's that specifically say not to.

Prior to that, the school had a "Cultural Arts Day" that had lots of crafts from around the world and our typical US culture was celebrated with popcorn and snow cones.

DS1 was asked if he would like either, even offered just the ice without flavoring.  He knew nothing about the ingredients, cross contamination, etc - he chose his safe pop corn and Skittles instead.  WTG child - you weighed the risk, benefit and understood you didn't have enough input to make an informed decision.

DS2 - enjoyed both treats 



It is not often that I play child against child but I used both times as a learning lesson.  In some ways, DS2's peanut allergy is easier than DS1's allergies to wheat, rye, barley and egg because peanut is most likely to be clearly listed whereas gluten is subjective and barley can take on a million other names.  I also understand that at the school level, peanuts are better recognized as the serious risk.

DS2 got to hear me praise DS1 for his reasoning skills in regards to opting for a flavor of Ritas that he has had prior as opposed to taking a chance with a new flavor (or worse, choosing to eat with PB in the same cooler).  We had a lesson on cross contamination and why we are weird about using spoons in jelly jars as opposed to knives.  He also heard me praise DS1 for opting not to partake in the other event and using his safe treats instead.  And I also reminded them if they ever feel slighted by what they didn't get at school, party, etc to let me know and I would do my best to make it up to them (which both have done within reason).

I have made an effort to remind them almost constantly that even those who have allergies or deal with allergies, handle them differently.  And yes, I know so and so is allergic to peanuts but his mom handles his allergy differently (and no, I didn't say that I found her sniffing bakery cookies to determine if they had peanuts to be dangerous).  We do it our way and it has kept you safe so far (this is where DS1 reminds everyone that I once forgot to read a label and almost killed him) and that just because a label reads safe, there are other factors that may make it not safe (DS1 brings up the broth he reacted to that clearly reads safe for his allergens and he reacts to everytime).  And then the whole, just because so and so is allowed to jump off a bridge that doesn't mean you should.

It is finally sinking in for DS2, finally.  I have my doubts sometimes but the difference between this time last year and now has brought about huge maturity changes.

[CMdeux]

You know, though.... something that we have found to be the case when dealing with the same set of allergies in the same child at different points, YKW? 

It was paradoxically-- easier-- when DD was allergic to soy/wheat because there were so many risks that simply weren't even on the radar.   The hard stuff was already just "NO" with respect to her other allergies.  Geeez, we had no idea how hard the egg allergies were in terms of parsing risk in that one until she wasn't allergic to wheat anymore.

It was weird.  There were actually times when I was exasperated that it seemed so much more complicated to have taken away the wheat allergy... it opened up a world of risks to parse, and the uninitiated all thought that stuff "should" be fine... but we had to weigh each and every one of them individually.  Nightmarish.