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Another food allergy-related tragedy...

goodhealthgourmet Mar 15, 2013 09:26 AM

...and a reminder that vigilance is *not* an option.

http://abcnews.go.com/Health/Allergie...

  1. w
    wyogal Mar 15, 2013 09:29 AM

    ... and because one doesn't "taste" peanut, doesn't mean it is peanut free.
    So very sad.

    1. i
      ItalianNana Mar 15, 2013 12:16 PM

      I have seen your knowledgable posts scattered throughout CH. I know you are a Celiac and are also allergic to soy? As I'm fairly new to the site I don't know my way around completely yet so not sure of how/where to ask questions without hijacking topics. I am MOST interested in the results of your extensive GF baking and cooking trials. Is there a place to find them grouped?

      1. s
        sedimental Mar 15, 2013 06:59 PM

        How utterly tragic. I hope someone will read this with an allergy and carry a viable epi-pen at all times. It is so important to take allergies seriously.

        3 Replies
        1. re: sedimental
          goodhealthgourmet Mar 15, 2013 07:33 PM

          Re: the epi-pen, I can't believe his mother didn't at least *try* the one she had in the house - it expired two months ago, not two years. I would have told the first responders to shove it, and used that one. So horrifying.

          1. re: goodhealthgourmet
            s
            sedimental Mar 15, 2013 08:01 PM

            Yes, that was a real..."did I read that right"? Moment for me. Especially now that we know expiration dates are not meaningful with medications. That is not a judgement about mom, we do whatever we do...in the moment. It will be hard enough to come to acceptance that her beautiful boy died from a cookie.

            1. re: goodhealthgourmet
              sunshine842 Mar 16, 2013 02:11 AM

              I agree....even if it didn't do anything, at least it was an option.

              Of course, I'm the type who would have just used it, then called the ER.

          2. j
            jvanderh Apr 8, 2013 10:51 PM

            How tragic. When I was a kid, a neighborhood boy died from eating a snickers. I count myself so lucky that I don't have any life threatening allergies.

            1. Lillipop Apr 9, 2013 12:53 AM

              I am shocked that he ate that cookie without checking the packaging for any *contains nuts/peanuts* warning.I am a seasoned experienced veteran RN and this made me cry.Poor kid:(

              1. trolley Apr 20, 2013 07:59 PM

                i was so saddened by this. it seems every month i read about a child dying from food. what are we doing to our foods that's causing allergies to rise at such an alarming rate?

                i'm glad you posted this GHG, here bc it's always been a taboo topic here on CH until they formed this board. i've been told i should home school my child bc of his allergies. well, no one would dare to say that to a parent of a child with other disabilities but food is a touchy one.

                the other thing we need so much is education on this matter. i know two parents who have sent their kids to the hospital due to mild anaphylaxis. even after that, they still go eat at donut shops or buy baked goods from bakeries that aren't safe. these people are educated people otherwise. they are on my facebook and post pics of their kids eating at these places and i do question them nicely and try to be subtle yet, they don't seem to get it.

                9 Replies
                1. re: trolley
                  j
                  jvanderh Apr 21, 2013 05:52 PM

                  I think it's a tough call. You want your kids to be safe, but you don't want them to live in a bubble. Being able to have special food outings are a big part of childhood- food is a big part of socializing for most people, but feeling different and isolated at birthday parties, etc is especially painful for kids. Maybe they've decided to take reasonable precautions like carrying an epi pen, but not stop eating out at traditional restaurants altogether.

                  1. re: jvanderh
                    trolley Apr 21, 2013 11:04 PM

                    my son's allergies are only tree nuts (severely to cashews and pistachios) and peanuts. we still eat out as much as we can within our given limitations. we are not going to play with fire by going to thai or chinese but we do italian, pizza, and japanese often. with more neapolitan pizza places becoming popular we aren't just stuck eating slices. my son has to eat his own cake at parties. i can't risk it with his tree nut allergies. however, i do ask the host parent what kind of cake they're serving and i try to match what they're serving in a cupcake for him. most of our friends will not serve peanut butter or tree nuts at their parties anyway.

                    i know both families and neither carries and epi pen. i've asked them why and they just say they haven't gotten around to getting it. they say "oh i know i should get one, i'm so bad!" no child deserves to die or suffer from the food they consume but after the first reaction, it's the parents' responsibility to take precautions like get an epi pen. and also teach their kids how to self regulate and ask before they eat something unknown and you can only do that when unknown foods are served. we even have playdates with friends and they bring a peanut butter sandwich. we wipe the kid down afterwards but my child learns to not get too close and keep his hands to himself when eating. self advocacy has to start early. i fear that these kids aren't getting the right lessons to keep themselves safe in the future.

                    1. re: trolley
                      sunshine842 Apr 22, 2013 03:52 AM

                      I cannot imagine having a family member with a life-threatening allergy and not getting around to having an epipen.

                      1. re: trolley
                        goodhealthgourmet Apr 22, 2013 11:58 AM

                        i've asked them why and they just say they haven't gotten around to getting it. they say "oh i know i should get one, i'm so bad!"
                        ~~~~~~~
                        That's unconscionable.

                        1. re: goodhealthgourmet
                          j
                          jvanderh Apr 23, 2013 02:24 AM

                          Yeah, that's really shocking.

                          Trolley, it sounds like you do a great job of making sure your son has fun while keeping him safe!

                        2. re: trolley
                          b
                          BackBite Apr 22, 2013 04:58 PM

                          I've recently been diagnosed with sudden-onset adult allergy to tree nuts. Since I did go into anaphalaxis, the allergy doc strongly advised against de-sensitizing and that I carry an epi-pen with me at all times. One lives in my purse, the other here at the house in the medicine closet.

                          As an adult, I can tell you that it was easily one of the scariest things that has ever happened to me. Home alone and thankfully had children's liquid benadryl on hand. I gave it a few minutes to work, and was happy that it at least made it easier to breathe and stop getting sick. Yes, the doctor lectured me and said I should have just called 911, especially when I am home alone (which is a lot, husband travels quite a bit for work on extended trips) and even said if I have to use the epi-pen that I dose myself and immediately call 911 so that I can be monitored at the ER.

                          After his lecture and that experience, I absolutely can't imagine a family just blowing off something so serious. Benadryl doesn't always work, and anaphlaxis happens FAST!

                          1. re: BackBite
                            mcf Apr 26, 2013 12:50 PM

                            I think if it throw you into anaphylaxis, that's a really good reason to try desensitization, but under clinical supervision in an in patient or ambulatory care setting to start for safety.

                            I know someone whose child was insanely allergic to almost everything, though in his the reactions were more behavioral than anything else. He got sublingual drops after they used needle stick testing on his arm to find his neutralization doses. They never expected him to ever be able to touch wheat or nuts, I think it was, he even reacted to cinnamon, but within just a few months, he had dramatic improvements and tolerated everything he was treated for.

                            I suspect a similar method is what researchers were reporting earlier in the year.

                            I'd rather risk a supervised test than anaphylaxis in a world full of hidden risks. Just my $.02.

                            http://www.nytimes.com/2013/03/10/mag...

                            But this quote isn't true, since my friend's child was treated two decades ago by an pediatrician using environmental medicine testing and treatment for multiple food allergies at once:

                            "Kim’s question intrigued Nadeau. Could patients be desensitized to more than one allergen at a time? No one had ever tried it, but more than a third of children with food allergies are allergic to more than one food."

                            1. re: mcf
                              goodhealthgourmet Apr 26, 2013 02:20 PM

                              Yeah, that quote was odd. Low dose immunotherapy - which involves multiple allergens at once, including foods - was developed 10 years ago.

                          2. re: trolley
                            pinehurst Apr 22, 2013 05:32 PM

                            It's child endangerment, which is against the law.

                      2. melpy Apr 22, 2013 12:01 PM

                        How did she not know that the allergy could cause death? What did she think the epi-pen was supposed to do?

                        9 Replies
                        1. re: melpy
                          trolley Apr 22, 2013 05:18 PM

                          this is my point that i was trying to make melpy. i know two families both very educated yet when it comes to things like food allergies they act like they can barely read so i'm not surprised that the mom just didn't understand. and there's a lot of misinformation out there and our allergist says bc immunology/allergy information is changing all the time and with the sudden increase in people afflicted, even doctors can't answer some questions.

                          1. re: trolley
                            j
                            jlhinwa Apr 26, 2013 02:53 PM

                            My daughter goes to school with a kid who is allergic to mangos. Mom is a pediatrician and does not have an epi-pen at school because she "doesn't trust anyone else to administer meds to her kids." There are three different forms that ask about allergies--one is the general enrollment, one is the hot lunch form, and the last is emergency contact info. Neither mom nor dad (also a doctor) thought to include this information nor did they inform their daughter's teacher (or anyone else on faculty/staff, for that matter) about the allergy. And then they got royally pissed when the school lunch had a substitution of mangos one day. Ummm, the kid is 10 years old and IMO is old enough to be alert for foods she can't tolerate. There is no excuse for not informing the school of the allergy nor having an epi-pen available. It was a friend of the 10-year-old that saved the day by pointing out the mangos in the fruit salad before Katie ate them.

                            Ridiculous, and even worse, very negligent.

                            1. re: jlhinwa
                              jw615 Apr 26, 2013 04:20 PM

                              As someone who has worked at camps and in outdoor ed programs, this kind of lack of information is way more common than one might expect or hope.

                              With my outdoor ed program, we got new kids every three days, so we really needed to know about health issues - not a lot of time to figure it out. I've had parents not give info about allergies, seizures, asthma, deafness (luckily you can figure this out pretty quickly), haemophilia, tube feedings, and tons of other things.

                              1. re: jw615
                                p
                                pedalfaster May 7, 2013 12:05 PM

                                I wonder how many of these kids are "tagged" (if that is a good word?).
                                As an adult with possibly fatal health "issues" -- I wear my stupid ID whenever I am out in public (I run and ride bicycles).
                                I once asked a friend, who is an EMT, his opinion and he nodded and said "yep, we know what those are" and then flashed his "RoadID".
                                My stainless dog-tag hangs from a thin chain on my neck. I jingle like a dog when I run. If it saves my life some day, it will be soooo worth it.

                                1. re: pedalfaster
                                  mcf May 7, 2013 02:07 PM

                                  Just in case you ever want to give up the jiggling jingle: http://www.elegantmedicalalert.com/me...

                                  I may get one, too. I no longer wear my alert bracelet because ER folks totally ignored it, IME. But I feel like I should have something.

                                  1. re: pedalfaster
                                    h
                                    Hobbert May 10, 2013 08:04 AM

                                    I'm an EMT and we definitely check for them. When I teach new EMT's, I have them incorporate it into an initial assessment. And Road ID's are awesome!

                                2. re: jlhinwa
                                  hotoynoodle Apr 27, 2013 05:40 AM

                                  i was waiting on a mother and her 3 daughters one time. all the girls seemed to be between 8 and 14ish. mom ordered everybody's food, girls were well-behaved. nice all-around.

                                  we drop the plates, and as one girl is about to dig in, the mom frantically waves me over. "SHE'LL DIE IF SHE EATS THOSE PEANUTS!!!!!" there were chopped nuts on top of the dish as a garnish AND they were listed as an ingredient in the menu description. mother never said a peep about the kid's allergies AND the girl seemed oblivious to the danger.

                                  nothing happened, but who knows about the next time?

                                  1. re: hotoynoodle
                                    trolley Apr 27, 2013 08:11 AM

                                    i don't get it hotoynoodle. as a parent with a child who can possibly die from eating certain foods i'm very vigilant and there is not a time he's not right next to his epi pen. we even have old ones lying around bc even old adrenaline is better than none. when we go out to eat we always make sure we communicate his allergies to our server even if it's our regular spot. btw, we only go to a handful of places (pizza, sushi, italian, burger) and one's that can accomodate his needs. we obviously don't go to thai, chinese, bakeries, or vegan and demand that the utensils and prep pans be free of nuts. there's a bit of common sense that's required here too. we have a hand that's been dealt to us and work from there in a realistic way.

                                    1. re: trolley
                                      hotoynoodle Apr 27, 2013 02:20 PM

                                      i was quite shocked, and frankly a little scared, afterward. how could she be so cavalier? if the menu had not said nuts, i could "almost" see it, but it was printed plain as day.

                                      i have only ever worked in fine dining and the kitchens and chefs are scrupulous abouy avoiding cross-contamination in cases like this.

                                      i felt terrible for that child.

                            2. goodhealthgourmet Apr 25, 2013 07:43 PM

                              Terrific article in yesterday's Huff Post written by a "food allergy mom":
                              http://www.huffingtonpost.com/carissa...

                              1. jw615 Apr 26, 2013 02:42 PM

                                For anyone with an allergy that might be holding off on filling an Epi-Pen script, if you go to the Epi-Pen website, there is a number that you can call to get a co-pay card that will take up to $100 off your out-of-pocket cost. If you have decent prescription coverage, this should make it free.

                                Yeah, it's a total pain to throw them away with out using them, but as someone who has needed mine, it is truly a life-saver and usually works so quickly.

                                I didn't even notice the needle (which may have been because I wasn't really breathing, but...) I've actually had people say to me: "I can't imagine giving myself a shot...I would just die." That is actually the other option...

                                10 Replies
                                1. re: jw615
                                  mcf Apr 26, 2013 03:32 PM

                                  I give myself allergy shots at home, after having had incredibly effective rapid desensitization by my wonderful immunologist. Given myself B12 shots and others in the past. I think the last thing I'd worry about if I needed an Epi-Pen would be the needle. I also don't really worry about the expiration date, but my allergist includes a vial of adrenaline in every box of serum he sends me after re-testing me.

                                  Thanks for the coupon info, though. I have high co-pays since my husband's company got bought by a much less generous company.

                                  1. re: mcf
                                    jw615 Apr 26, 2013 04:17 PM

                                    I don't really stress about the expiration date, but since my job includes a lot of excursions where I'm not necessarily able to keep the pens within the recommended temp range, I make sure to replace within a month or so of the date. That being said, if all that I had was an expired one, I'd definitely use it, no questions asked.

                                    However, I'm considered pretty high risk (multiple allergies, history of severe reactions, asthma, taking a med that inhibits the action of epinephrine) so depending on where I am and what I'm doing, I also have to carry up to eight on doctor's orders, so I'm a little outside of the 'normal' range.

                                    So glad to hear that the rapid desensitization worked for you. I had to stop injections after multiple severe reactions.

                                    1. re: jw615
                                      mcf Apr 26, 2013 05:14 PM

                                      That's got to be really hard. I think what's so useful about the clinical ecology method of testing is that when they test they find the dose at which you don't have a reaction right then and there and that's your starting sublingual dose.

                                      Do you have mast cell activation disorder or mastocytosis by any chance?

                                      1. re: mcf
                                        jw615 Apr 26, 2013 07:56 PM

                                        Not to my knowledge - the doc did mention it once, but never really went anywhere with it.

                                        With the immunotherapy I did have periods with no reactions, but was never able to continually tolerate it. My asthma is really unstable, and my tolerance of various things seem to depend on how things are going with that as well. I might be able to tolerate it now if we tried, but that's probably only because I've been on constant prednisone for over a year and a half.

                                        1. re: jw615
                                          mcf Apr 27, 2013 08:26 AM

                                          It could be worth looking into the masto and mmad groups. Email me if you'd like to discuss a little more, your pattern sounds very familiar based upon a friend's experience.

                                        2. re: mcf
                                          LMAshton Jun 8, 2013 05:39 PM

                                          It didn't really twig for me that mast cell activation disorder was tied to allergies. I've been hearing about it for the last month or two because of another board I'm on that's about a particular genetic defect I have that seems to have a high association with MCAD, but I didn't quite make the association I needed to. Now I know I need to research this more thoroughly. Thanks.

                                          1. re: LMAshton
                                            mcf Jun 8, 2013 06:40 PM

                                            Sure, good luck! There's a tie in with Cushing's and HPA axis disorders, I know. And certain clotting issues crop up often, I believe.

                                            I recall someone on a Cushing's forum named "allergy girl" who had it all... after pituitary surgery, she could eat everything without a problem.

                                            No one is doing any clinical studies of it any more, but I really think various manifestations of glucocorticoid resistance syndrome play a huge role.

                                            There is also a condition known as "food induced Cushing's syndrome." I'm sure there are all sorts of ways that the HPA control of immunity can go askew and produce hyper reactivity.

                                            1. re: mcf
                                              LMAshton Jun 9, 2013 04:57 AM

                                              My particular genetic defect is Ehlers Danlos Syndrome, which in and of itself can cause hundreds of other things. It's a collagen defect. Mast cells, I just read today, mostly exist in collagen. Funny the little links...

                                              1. re: LMAshton
                                                mcf Jun 9, 2013 08:30 AM

                                                Yer not kidding, and I'm sorry you're dealing with that. Here's the first thing I got a hit on: http://www.ednf.org/index.php?option=...

                                                1. re: mcf
                                                  LMAshton Jun 9, 2013 04:09 PM

                                                  That website in general has pretty good info on EDS. I haven't read through it all, of course. Brain fog is a part of my EDS experience... :)

                                  2. trolley Apr 27, 2013 07:59 AM

                                    http://www.sltrib.com/sltrib/news/562...

                                    another death. here sounds like the child put the peanut butter pretzel in his mouth only. so sad.

                                    3 Replies
                                    1. re: trolley
                                      goodhealthgourmet Apr 27, 2013 09:18 AM

                                      Ugh. Once again, WHY didn't he have an Epi-pen with him, and WHY did the host parents not know about his allergy? My heart breaks for the parents every time I read one of these stories.

                                      1. re: goodhealthgourmet
                                        jw615 Apr 27, 2013 09:14 PM

                                        I really think that the best thing to do is start kids with self carrying epinephrine as early as possible. There are lots of products that make this pretty easy. I have a carrier that clips to a belt loop, which we hang on a hook next to the door to the garage. This way I always see it before I leave, and it has a spot in the house where it can be easily located.

                                        I've only forgotten mine on a few occasions, but our rule is that no-epi means no food. If I've left it at home, I eat nothing until I get one or get home.

                                      2. re: trolley
                                        jenscats5 May 19, 2013 02:14 PM

                                        Absolutely horrifying! And in one of the comments, a parent said they put off for NINE MONTHS buying an epi-pen for their 2yo daughter. Tragic....

                                      3. r
                                        redips Jun 8, 2013 07:13 PM

                                        This article was a little weird.

                                        1. The article states that the boy died from the cookie because it contained peanut oil... That doesn't make sense. From what I understand, there are no allergens in oil. The allergy is derived from the protein. Right?

                                        2. The article states that the kid, who obviously knew he had a serious peanut allergy, carelessly ate a cookie?

                                        3. The mother is quoted in saying "I didnt know someone could die from a nut allergy. I feel foolish". Wait... what?

                                        Doesn't seem to add up.

                                        1 Reply
                                        1. re: redips
                                          goodhealthgourmet Jun 9, 2013 06:18 PM

                                          Only highly refined & processed peanut oil is considered safe for *most* peanut-allergic individuals. Peanut oil that is cold pressed, expeller pressed or extruded still contains allergenic protein fractions and will likely cause a reaction.

                                          Don't get me started on the mother's comment...

                                        2. s
                                          subal Jun 8, 2013 07:43 PM

                                          I have a high allergy to peanuts, walnuts, almonds, hazelnuts....
                                          But any thing cooked in peanut oil does not bother me.
                                          I have not tried the other nut oils.

                                          1. m
                                            Maggiethecat Jun 23, 2013 07:11 PM

                                            I am mildly allergic to most nuts (all except cashews) and have been for, I think, all my life. I say "I think" because my mom never realized, and still doesn't really accept/understand, my allergies. When I was a kid, there were several things, including nuts, that I didn't like to eat because they made me "feel sick." She thought I was being "picky" and would sometimes force me to eat them anyway. I would get very itchy around my face/mouth/nose/throat/ears but it was not visible and I never actually got sick to my stomach so she dismissed my claims of getting sick. Now, I am trying to eat low-carb and gluten free so have been cooking with stuff like coconut flour. She continues to ask me (more than once) if I have tried almond flour, despite me telling her every single time that I can't eat almond flour since I am allergic to it.

                                            So, sadly, I can understand the mother in this article not realizing allergies can be fatal. I am lucky that my own allergies are not life-threatening (at least they have not been so far) as I'm not entirely sure I would have made it to adulthood in my mother's household otherwise.

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