Fatal Reaction

[SilverLining]

I just left a message with our allergist to change both their plans.

I think I've read a few different people make similar comments.

Anyone willing to share, I would be interested to know how the allergists react.  Do they immediately agree, get talked into it, or feel you are over-reacting from a news article.  (To be clear, I do NOT feel this is over-reacting...just curious if doctors feel that way.

As for the allergist's comment McC, I took it differently.  I took it to mean that some clients don't carry epipens, so they go racing into the office with symptoms (giving hives as an example) instead of carrying their epipens.  I didn't read that as him trivializing hives. <shrug>

I read it the same as you did my3guys.

[my3guys]

I'll be curious what his response is too SL, and I'll share once we connect.  I remember talking about it with him years ago, and given ds' reaction history, we agreed that we didn't think it was warranted.  Now that he's been in school system for a while, I'm more comfortable with a more aggressive call for epi, because we don't have any frequently questionable events.  He's never reacted in school.

I realize, however, this thinking is kind of backwards.  Young kids have a high danger of ingesting something by accident.  Then again, he's almost a teenager -- and I feel like the danger is almost back to the toddler years, meaning he could do something foolish to try to fit in.

I talked with both FA boys tonight, different conversations due to their ages, but reminded them the importance of only eating food they're 1000% sure of.

[twinturbo]

DS1 has his first post-Sinai appointment tomorrow. We have a lot to cover--including a nut panel SPT so I don't know how much time I'll devote to it but I'd like DH to go over the Sinai EAP that calls for Benadryl + wait for known ingestion of peanut with history of clear multisystem anaphylaxis including respiratory distress. I was never comfortable with that especially given some shift in best practices over the last 1-2 years.

[shoshana]

this is so very sad and disturbing.  i know i am in the minority, but i sometimes wonder why people think it is being careful allowing your food allergic child to eat things made by other people, where the other people were obviously cooking things that had nuts.  we are all so careful calling companies and worrying about cross-contamination (and rightfully so).  i just don't feel that eating out is so special that i need to risk my kids life.  it's a pain, but we schlep safe food for her everywhere.

my heart does go out to the family.

[CMdeux]

We do, too, Shosh.

We also alienate pretty much everyone who knows us by doing so... which is keying me up to a pretty high pitch already this week given that during the next ten days, we'll be subjected to no less than five potlucks that we can't get out of.  So we'll go, bring food that is immediately contaminated (and therefore unsafe for anyone in our household), smile, and patiently explain why we aren't eating food others have prepared... and try to avoid the entire conversation about why we're also not eating what WE brought...

God, I hate potlucks.  I hate them.  They ruin social activities for us. 

[lakeswimr]

CM,

I am only repeating what my son's allergist and other allergists have said.  Some allergist agree with my son's allergist.  FAAN's official position was what you are saying.  If you read what I wrote, I said that I think my allergist would agree that it would be quite rare but in some cases benadryl could mask early symptoms that would indicate that a reaction is continuing.  He told me that sometimes the reaction starts with mild symptoms, benadryl is given so we don't see things such as perhaps the spread of hives (and Beandryl is good with stomach aches in many so you might not see that as soon), meanwhile the reaction can be building inside and then it seems that it comes on suddenly when in reality it was there all along.  I wasn't "assuming" anything.  I have to go by what my son's allergist recommends which is NO benadryl unless epi is given in case of known or suspected ingestion of a food allergen.  Benadryl is for being around cats or something like that or else only after the epi, never before.  From reading at another board it seems allergists are about 50/50 split on giving benadryl for minor symptoms and not.  Some are now taking benadryl entirely out of action plans. 

So, it isn't a matter that he claimed it happens all the time or would always happen but that he said it could mask ana sometimes so for him it isn't worth that risk and I'm going with his recommendations. 

This particular case is so tragic and so sad.  The girl looks like she was just lovely.  What a horrible thing to happen.  And you are right, it sounds like this happened so very quickly.  Our plan says to wait for symptoms even with known ingestion.  The school had it as epi for known ingestion and I didn't correct them, though.  I'm going to talk to DS's allergist about that. 

Sorry for the potlucks.  That stinks.  I always have to explain why we are leaving the food there and not taking it home.  I learned to keep a good chunk of it aside for DS.  He had ana at a potluck 1 1/2 years ago so I'm even less into them now.  He didn't eat anything.  It was contact ingestion.  I am very fine with leaving those things early or skipping.  Sorry you have so  many in a week! 

[Macabre]

About potlucks---

We have breakfast and a lite lunch at our church every Sunday. I don't know if I have been to a function at the church that hasn't involved food (not taking into account weekly communion).

[Momcat]

It's very tragic, but the fact is that eating a random unlabeled dessert is not careful. It's as if she had darted out into the freeway. Being careful every other time you crossed the street will not help you in that case.

[maeve]

No hives doesn't mean no reaction.

My very smart 12-year-old DD reminded me of this when I had my recent reaction to an antibiotic (one I had taken without problem in the past).  I had intense itching--though not all over--and no hives.  She reminded me that there didn't need to be hives for it to be a reaction.  I'd also had an itchy throat and when I took the second dose I had coughing as well as the itching and throat symptoms.  My reaction resolved on its own.  Folks from here that are also on Facebook chided me to call the doctor. 

I was so pleased with DD, though with reminding me that sometimes a reaction doesn't present classically.

[CMdeux]

It's very tragic, but the fact is that eating a random unlabeled dessert is not careful. It's as if she had darted out into the freeway. Being careful every other time you crossed the street will not help you in that case.

That does assume that:

a) she didn't discuss ingredients with anyone, and
b) that if she had, that she'd have received accurate information in return.

Both are huge pitfalls.  But the alternative is "trust no one."

I'm often viewed as pretty extreme for taking that stance-- even here, and even among people who know that we do it because of my DD's ample reaction history and sensitivity.

Many of our members (and their kids) do trust others to prepare food for them.  In light of the reports about this family's level of vigilance/care prior to this, I have to think that one of several things happened here:

a) Mom and Dad were told one thing and something else occurred (oh, just Rice Krispie Treats-- maybe S'mores.  You know, that kind of thing)

b) 13yo DD is getting a LITTLE bit more leash at this age... but please note, both parents were present-- which is entirely consistent with a pretty rigorous standard of management

c) 13yo, feeling very virtuous and responsible, asks about the treats and is reassured (probably by another adolescent-- or maybe a clueless adult) that they are "just RKT's"  so she bites into one.  Why?  Well, in part because she was 13.  She didn't WANT to make a big deal about it and ruin what had been a perfect day.  We've been through this ourselves-- DD will make a decision (or one of us will, frankly) which is about just being TIRED. OF. LIVING. LIKE. THIS.  It's why I hate potlucks-- please see above.  Everyone URGES you to trust them-- they go out of their way and are then OFFENDED when you still refuse to take your life and put it into their hands.  I completely get why a lapse like this could happen in an instant.  I really do.


Honestly, I can see this happening to about 60-70% of the kids who are part of even THIS community under the right set of circumstances.   Even my daughter.

 

[twinturbo]

I found out just yesterday FOUR months after the fact that the school left it up to DS1 whether to drink lemonade made for their class by upper classmen. No call to me despite how much I rode them daily about food. No matter how often I have him repeat daily before going to school to only eat out of his lunchbox. The attrition of being left out got to him. In his 6/7 year old mind it made sense that he's not allergic to lemons. He was burnt out and wanted the lemonade everyone else was drinking.

[lakeswimr]

To me it isn't about trust.  It is about a level of understanding about xcont that I find difficult to impossible to convey.   I didn't even gent until I messed up and fed my friends son something I made that I forgot had one of his allergens.  He had similar allergies and I forgot about one.    So careful with my child hat I was over confident.   I used to make 'gluten free' things for another friend, too until I realized pretty near everything in my kitchen for sugar to salt and more is xcontam wheat from when I bake and cool.  Probably even
My oil!  So to expect others to get it t hat level seems unrealistic to me.  Dr woods story of his colleague messing up is a good example.  Unless I felt a person truly understood xont and was willing to use new flour, new sugar, probably a new pan as many have had crust food residue in corners I don't think I would feel comfortable.  When we eat out we hose things that are lowest risk and don't have the risks of baked goods from other people's homes. 

[ajasfolks2]

Crossposting.

Putting this link here.

Tragic Loss of Sacramento Teen Reveals Flaws in Anaphylaxis Guidelines

by Dr. Mark Greenwald

http://epicentermedical.com/tragic-loss-of-sacramento-teen-reveals-flaws-in-anaphylaxis-guidelines/

[GoingNuts]

Thank you for posting ajas.  Really sensible, IMHO.

[SilverLining]

am I the only one who thinks someone (even a doctor) who was NOT there and has not met the patient before or after her death should NOT be giving advice to everyone, that they also have never met?