You know, of all people, I have sent in unsafe snacks with ds this year.  We missed the first week of school.  We were stuck in California due to the hurricane.  I imagine this is when the usual allergy note was sent home.  Ds has no allergies and I sometimes give him protein bars for a snack, since he is a light eater.  They all have peanut flour or at least warnings, but usually peanut flour.  I do not give him onbviously nutty ones.

So, lunch tables switched after a couple of months and *then* I got a note to not send any nutty things in lunch, since he will be seated at the nut free table for awhile.  This is how they do it, assigned seating, and they rotate.  I was floored because I had no idea there was a food or peanut allergy in the class.  I am careful  about these things due to dd. 

So, if a PA parent who is attentive can mess this up, I am sure others do it all the time.  And really, the school just missed me when handing out information.  In a second grade classroom, this could have easily happened, switching the food somehow.  Ugh. 

So scary. 

becca

Quote from: lakeswimr on January 29, 2012, 07:37:43 PM
No epi at ER,either!  Sounds like doc gave plan to only epi if breathing trouble.  Waiting until then can be too late.  This case chills me because the symptoms, although systemic, sound mild and I have failed to give the epi (against our plan) in various times when DS had similar mild symptoms.  We were very lucky those times.  I have driven to the ER when I should have epid and called 911.  And the more times I did it and he was fine the more silly I felt giving the epi and calling 911, you know?  This shows that it isn't the least bit silly.  Systemic = epi and 911 and 4+ hour ER stay.  I am drilling that into my head.  I should print this news story and keep it with our emergency plan to remind me to be strong and follow the plan in the future if DS has another reaction.  It is so easy to blow of more mild symptoms.  Mild stomach ache and itchy mouth don't sound too bad but look at this story.  So glad the child is OK!

I could've written this exact post.  I'm very shaken up by this story, and remembering when we didn't epi once for "mild symptoms" with known peanut ingestion. Nine years in, I feel more relaxed about the whole allergy world, and I think I've become more complacent.  Sufficiently shaken out complacency now, printing this out for DH, and reviewing food rules with kids again!

Ditto.   
 

We have been so lucky.  Three times, we've been that lucky.  Three separate occasions where initially so mild symptoms (grade I, which are often hard to determine as even being allergy) went untreated... while they suddenly escalated into horrifyingly life-threatening (grade III-V) without warning-- and in just a matter of seconds.

Even grade IV anaphylaxis mostly self-resolves.  MOSTLY.  But sometimes it doesn't, and that sometimes is the event where only epinephrine can save the person (probably, anyway, and if administered in time).


Yes, I feel exceptionally fortunate to have my daughter still alive and well after some of the very foolish decisions we've made over the years.  VERY much dumb luck on our part.

No epi at ER,either!  Sounds like doc gave plan to only epi if breathing trouble.  Waiting until then can be too late.  This case chills me because the symptoms, although systemic, sound mild and I have failed to give the epi (against our plan) in various times when DS had similar mild symptoms.  We were very lucky those times.  I have driven to the ER when I should have epid and called 911.  And the more times I did it and he was fine the more silly I felt giving the epi and calling 911, you know?  This shows that it isn't the least bit silly.  Systemic = epi and 911 and 4+ hour ER stay.  I am drilling that into my head.  I should print this news story and keep it with our emergency plan to remind me to be strong and follow the plan in the future if DS has another reaction.  It is so easy to blow of more mild symptoms.  Mild stomach ache and itchy mouth don't sound too bad but look at this story.  So glad the child is OK! 

The Mom wrote a comment on the article...they just administered Benadryl in the office and then called the Mom, who then picked up her son and took him to the ER.  Wow!... so many things went wrong here...it was a known ingestion, office should have EpiPened and then called 911.

What I wish I knew ... How much time elapsed between throat tightening and CPR administration in the ER, and ICU-entry (i.e. any administration of drugs) -- the bolded sentences?  Is CPR supposed to help if one's throat is closed??

After 30 minutes in the emergency room, the child broke out in hives and his throat was tightening.

"It happened so fast. It was a nightmare," said Amy.

"I saw him in the ER. When I first walked in, his lungs had failed and they were beginning CPR," said Dr. Rob Chaplin, a critical care specialist at Children's.
.
.
.
Doctors rushed Max to intensive care where they continued CPR and administered a host of drugs to help Max breathe. His heart rate dropped extremely low.

Yes it is hard to know when to Epi sometimes. Which is why we follow this rule:  if two body systems, orvid known ingestion and one symptom is mouth/throat then Epi. And we've done it--a few times--even when we've had two body systems and no known ingestion.

It's a mathematical formula for us. Takes the guesswork out.

The safe snack list and safe snack box are both subject to error.  Mistakes can get made with either one of these.  But more importantly, I think they send the wrong message.  If the parent of the allergy child wants all class treat food approved by her, then giving the allergy child a safe snack box gives tacit permission to break the rule of the parent approving safe class treat food.

One time when dd was in preschool, no 504, a child traded dd`s safe cupcake brought by me for the birthday cupcake from the birthday child that was on this other kid`s plate.  It happened so fast that dd never noticed.  If I had not been standing there, she would have eaten it.  It would have been epi and the ER.  So in this case in Omaha with the 7 year old, they were all sitting there in the dark.  I can see how the child with the allergies would not notice that there had been a food switch, if that is what happened.

Quote from: lakeswimr on January 27, 2012, 03:33:16 PM
This is so scary.  There are times I should have epid and did not.  The symptoms were minor but if I went strictly by our very conservative plan I would have epid.  DS hates getting it and argues against it.  The idea of being seemingly fine for that long with just minor symptoms (I read it as minor stomach ache and itchiness) to nearly dying in seconds is very scary. 

This story is why I don't trust other people.  I don't want any allergens at parties at all.  I want my child fully included but if I can't be there I don't trust anyone else.  I don't want anyone serving him food.  I want him eating out of his lunch box or from a container I send that no one else touches.  Being safe trumps being included.  Checking food labels wasn't enough to keep this child safe.  If he had had his own plastic container with food chances are he would not have accidentally eaten the granola bar.

In the article it states:  "The snack somehow made its way out of another child's lunch box and onto Max's plate. In the darkness of the classroom movie party, the boy took a tiny bite."

This was the case of another family not following the rules for a peanut-free class.  This granola bar wasn't part of the "approved" treats for this movie in the class.  It does show, though, how because the class is eating food another child who might not like what is served may feel that it's OK to break out another snack from their lunch box/backpack--a snack that has not been vetted. 

Every year that DD has been in school, another family has not followed the guidelines about food in the classroom.  This is why I've been reticient to do a safe snack list and don't put items that can easily be confused, such as granola bars, on the list.

Yes, I really wish that I could bottle what the ER staff saw so that every FA family had it available as an "Elixir of Enlightenment" for use with schools, family, physicians, basically anyone that is clueless and/or obstructionist.   

Better still if, before any human being could open his or her mouth to trash "neurotic" FA parents and over-protective measures versus the "rights" of others.... that a lightning bolt would shoot down out of the blue and instantaneously provide such a person with a firsthand witnessing of events like these.  The sheer horror of it is hard to convey in words.  I just want to scream when I read things like this... I want to shout to EVERYONE, EVERYWHERE--  that this!!!!!!-- THIS is what we are up against.  FOR REAL-- every meal, every surface, every location, every MINUTE of every day, this is our reality.  And that if I seem to others to be something of a pain in the backside about food-food-food everywhere, all the time, maybe they ought to walk a few miles in my daughter's shoes and see the world through her eyes and ours before they say even ONE more word about the rights of others to live without being 'inconvenienced' by her safe inclusion in activities that have no business involving food to start with.

  I'm so sick to death of people not understanding what they are choosing to do-- oh, who am I kidding?  INSIST UPON, in spite of pleading and begging otherwise when they include food in activities that also involve children with known LTFA.  It's an unecessary risk.  They wouldn't take it on in a million years if they knew just how real it was.  I'm sure of it.  Nobody in their right MIND would.  That's my litmus test, personally.  When I (well, or DD does, at this point) explain the situation, and the person still has the CAJONES (pardon my language) to say "Oh, sure-- but the other kids can still have _______ and she can just be careful, right?" I know in that moment that they can't get it and never will, short of seeing my daughter fighting for her life right in front of them as the direct and obvious result of their willful stupidity in insisting on food-food-food-food...

  I'm often told by those same people that I just need to "understand" where they are coming from and be willing to "compromise."  Well, hey-- news flash.  I know where they are coming from.  A place of IGNORANCE.  Because I used to live there, too, tyvm-- before I had the epiphany of watching my kid almost die a few times.  Until they can comprehend just how little it takes (and really, in this particular instance, this was a MASSIVE ingestion-- way more than DD has ever eaten-- EVER) then I have nowhere to go with people like this because they truly can't wrap their heads around it.  They really do, on some level, think that we're exaggerating.  Because their own experience insists that it's impossible for what we say to be real.  Makes me crazy.   

Total rant.  I know.  Sorry.  It's just all so bloody unecessary, and it makes me FURIOUS.

This is so scary.  There are times I should have epid and did not.  The symptoms were minor but if I went strictly by our very conservative plan I would have epid.  DS hates getting it and argues against it.  The idea of being seemingly fine for that long with just minor symptoms (I read it as minor stomach ache and itchiness) to nearly dying in seconds is very scary. 

This story is why I don't trust other people.  I don't want any allergens at parties at all.  I want my child fully included but if I can't be there I don't trust anyone else.  I don't want anyone serving him food.  I want him eating out of his lunch box or from a container I send that no one else touches.  Being safe trumps being included.  Checking food labels wasn't enough to keep this child safe.  If he had had his own plastic container with food chances are he would not have accidentally eaten the granola bar.

Quote from: socks on a rooster on January 26, 2012, 11:38:51 PM
Wow, did Carefulmom nail it recently when she was saying in another thread how "safe" lists aren't very safe. This boy got someone's snack IN THE DARKENED ROOM watching a movie.

http://www.ketv.com/r/30307603/detail.html#.TyHcChQh2No.facebook

Really.  I have always thought that all these safe snack boxes do is enable them to have more food activities without feeling guilty.  That is a horrible story.  So scary.  That child could have so easily died.  Many hospitals do not have ECMO.

 

"Anaphylaxis.  It's not what you think.  Until, OMG! OMG! OMG!-- it is-- but by then it might be too late to stop."

That pretty much sums it up nicely.  Each and every one of my DD's major reactions (since the first one) have been completely mindboggling in their ferocity and astonishing in terms of speed at that point. 

Each and every time, it was seconds from an idly curious "huh... I wonder what..." (meaning, completely nonspecific symptoms that may or may not have even BEEN allergy-related, nevermind FOOD related) to OMG! OMG! OMG! Someone HELP-- she's crashing!!     We have seldom been able to pinpoint just what the trigger was in most of these cases... just that it is "probably" peanut contamination, given the circumstances-- but there's never been an overt ingestion source to tie it to since the first reaction to pn.  Very anxiety-provoking, that, because basically, what environment DOES NOT pose that sort of risk, short of other pn-free homes?

I find it so incredibly frustrating to try to communicate this reality to other caregivers.  That if something seems "off" they may only have a few seconds to wonder why before they will be handling a situation that looks and feels remarkably, and terrifyingly, like imminent death.  There is something about it which simply does not compute until you've seen it happen with your own eyes.  It doesn't seem to matter who you are or what your background is.  I can tell that even our allergist (and he's VERY good) hasn't ever seen it happen firsthand.  Oh, he believes us-- but only because he's so well-versed in the theoretical and because he knows me and my DH well, and he is experienced and sensitive enough to register my inner PANIC when I notice anything that could be impending anaphylaxis symptoms in DD.  He can put those things together to get a sense of the underlying history behind that panic.  But he doesn't get it (not in that visceral sense) because he's not seen it.

The doctor in the story has seen it.  Now-- he gets it.    How incredibly fortunate that this happened where pediatric ECMO was available.  I'm so glad that this little boy didn't die.  I think that this story emphasizes once more just why we are so careful and so suspicious of others... 

About a year ago, dd ingested milk protein during lunch at school (crumbs dropped onto her food most probably), and she developed an itchy throat. She was given Benedryl, observed and returned to class because dd said she was fine. The timeline is sketchy to me now, but by the time I picked her up (it was a minimum day) she looked lethargic and shortly after getting home she said, "Mom, listen." She had wheezing and stridor, no other symptoms at all. It was so scary how stealthily it can happen, and I am SO grateful that it was minimum day and I was there when the wheezing developed. So, I know personally that the "avalanche" of anaphylaxis can begin slowly, but gain speed quickly.

Just looked at the article again, and now there is a very long comment placed by the boy's mom's best friend explaining what exactly happened.  Sounds like they did give him benadryl, and in reading I can see why it was a tough call whether to epi.  I guess it's hard to say what any of us would do in that situation unless it happened.  Just thankful he's ok.