Wednesday, March 30, 2011

Our first ER visit from food allergies and Entenmann's Little Bites

So-in case you haven't heard, we had our first ER trip for a food allergy reaction yesterday and I'm happy to have our first dose of Epinephrine behind us but also VERY grateful that Alexa is almost 6 and this is the first time we have needed either for her food allergies.  It was scary but it was not as bad as I had imagined so for that I'm also very grateful.  Here's the story and my lessons learned for those of you who have not yet had this experience.  I purchased some Entenmann's Little Bites Muffins from Costco.  The box contained blueberry, chocolate chip, and fudge brownie.  It stated that it contained eggs but otherwise had no other allergy warning.  She has just started eating baked egg so I decided to give them a try.  As part of my usual protocol, I call any new companies to find out if they label for same facility, same equipment or "may contain" peanuts or nut.  For a reason I can not explain, I did not call or look up Entenmann's allergy policy before allowing Alexa to eat them.  Lesson #1-follow your allergy rules and stick to them!!   I gave her one Fudge Brownie Little Bite.  They are about 1 inch around and 1 inch thick.  She ate it and immediately said "Mom, my throat is itchy".  Uh-oh! I gave her 1 teaspoon of Benadryl and asked her to tell me if it got worse.  About 3 minutes later she said "my stomach hurts, I think I need to throw up." uh oh! That made my stomach turn.  We proceeded to the bathroom where I gave her a chewable Pepto Bismol and she decided she was ok and would not throw up- but as we were leaving the bathroom I noticed her forehead was all red and bumpy, then I noticed her upper lip was all red, just under her nose.  I lifted her shirt and sure enough the tell tale signs of a red rash was starting.  This was unlike any previous reactions she has had.  She did not have lip swelling, increased cough (she already had one), or "hives" yet just a weird red rash and red patches but I knew it was getting worse which told me "time for Epi soon".  I gave her another teaspoon of Benadryl and called the Doctor.  Her Dr. recommended that we head to the ER with Epi Pens in hand and if she got better we could always turn around.  As we were on the way to the hospital her "red" rash began to look purple, her hives increased and she got very sleepy-(which I have heard is not from the benadryl but part of the reaction itself).  I checked her pulse, which was strong, and told the driver to "hurry please" while I prayed NYC traffic would part for us and we would arrive quickly.  We were very lucky and we arrived faster than I anticipated and I rushed her in.   They took her pretty much right away (although they made me fill out a form first).  The nurse asked if I'd given her the Epi Pen and I said "No, but I'm about to".  His response was "well next time just give it to her and come".  Easy to say when you've never had to actually do it and the thought is terrifying!! Anyway the Dr. checked her out and said "yeah, she's pretty bad but not horrible, I think benadryl and steroids and we'll watch her." For a moment I was relieved but then I thought "wait, I've heard this tale before from other allergy Mom's and they have advised "don't wait for the Epi-it just delays them getting better and they suffer longer." so I decided to talk to the Dr. again.   In the meantime, Alexa was playing but getting worse, her hives were progressing and her face rash was more purple than before and they still had not given her any medications.  When the Dr. came over I said, "She's getting worse.  I know you don't want to give her Epinephrine, but I've think you should.  She has more than one system involved, she's getting worse even with benadryl and without it she's going to suffer longer."  She was a bit surprised but said, "Well, she'll get jittery and shaky." To which I said, "I'd rather have her shaky and jitter than suffering like this for hours and having it progress unexpectedly." She thought for a minute and said "Well, since she has more than one system involved and it seems to be progressing let's go ahead with the Epiphrine then." PHEW!!! I was still scared but a bit relieved too.  They moved her to a bed and gave her a dose of Epinephrin in her arm.  Literally within 2 minutes her color changed, her rash disappeared and her hives started to fade! Can you say MIRACLE drug? WOW! I was SO relieved.  They hooked her up to heart monitors and we listened to her heart race and flit around for about 10 minutes (which is scary because the monitor keeps setting off alarms and no one comes to check!!) but her color was fine and she was happily coloring so I didn't worry too much.  She was observed for 4 hours but we were very fortunate that she did not have a second, bi-anaphylactic response-thank goodness!! Oh and they gave her a dose of prednisolone (steroid) which she will take for 3 days.  She's tired today and her cough is worse but otherwise she is doing really well.

So, lessons I learned? Stick with your allergy rules and don't be afraid of the Epi-it's your best friend! Two of my food allergy rules that I broke yesterday, 1) no new foods after 1pm in the afternoon ( I gave her a new snack at 3:30pm) and 2) call or research each new company to confirm the allergy labelling policy (broke that one too! Never called or looked them up!).  While I was waiting for the Benadryl to kick in I looked up Entenmann's and if I had seen this first I would have NEVER given her those muffins.  They're policy is as follows: "



We assure you that we adhere to Good Manufacturing Practices as established by the FDA. We take abundant precaution to prevent cross contact of allergenic ingredients between batches and, our bakeries are inspected to ensure that they meet or exceed all regulatory and baking industry standards. We understand that highly sensitive consumers need to know when there is even the remotest possibility of inadvertent cross contact of allergenic ingredients during processing. To that end we disclose that the following allergenic ingredients are used in some of our manufacturing facilities and that inadvertent cross contact is remotely possible: milk, eggs, soy, almonds, walnuts, peanuts and hazelnuts (filberts). Wheat is used in all of our facilities and all of our products as an ingredient. Please refer to ingredient labels on our products for full disclosure of the ingredients used in that product.


If you are not familiar with food allergies, you are probably thinking, well that sounds good right?NOPE! It basically says, "we do what is required to clean the machines" or "we hose them down between runs, peanut/nut residue will remain on the machines and your food MAY contain the allergen".  It also tells me they don't label for same equipment or may contain which are two BIG ones with us-I don't even let her do "same facility"!  I'm 99% sure this reaction was peanut or some other nut and NOT egg related because her previous response to egg has always been fairly mild involving hives around her mouth and has responded to Benadryl quickly-especially baked egg.  This reaction was much more involved and complicated and continued to progress even with Benadryl.  I'm SO happy she is ok and very happy that the hospital staff listened to my concerns.  We've been really lucky that this was her first ER visit and first Epinphrine since being diagnosed more than 4 years ago.  Hope our next one is years away or NEVER! 

35 comments:

  1. I got chills just reading this. I'm SO proud of you for standing up for her with the ER doctor and letting them know that you are educated, informed and willing to advocate for your child. Great job, Mama! You kept your head and your cool and remembered the plan and made sure it was put in action. Celebrate that!

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  2. Thanks Lissa! It's great to hear feedback and support. Could have used a big HUG last night and an equally big glass of wine!! LOL!

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  3. As a fellow allergy mom I totally felt your anxiety while reading your story. I'm so sorry!!! I know how good a hug would have felt to give you. My then 9 month old daughter was in the ER with multiple systems involved and we almost lost her so I do know how you were feeling. You did good, Mom! You should be so proud of yourself! And yes, as scary as it is, the Epi is your best friend.
    Hugs,
    Jenny Nolan

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  4. Good job on trusting your instincts and standing up for what you knew to be best for your daughter. That was a wise move that paid off! I'm glad to hear that she's doing well, and had such a great reponse to the epinepherine (and so quickly too!) p.s. You're right about the exhaustion she experienced. My first reaction to peanuts was anaphylactic, and one of my first symptoms was instant, extreme exhaustion.

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  5. Way to stand your ground! So glad she is okay. This is exactly the kind of reminder I need sometimes when I just don't feel like dealing with another label/phone call, but you just never know. Thanks for sharing!

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  6. just read this story and have posted it to my face book page in the hope that others with school age kids that might come into contact with my 3 year old son will think twice about giving there kids food that is a 'may contain'. I once read an article that was aimed at parents of non- allergic kids. It said '....would you ever give your child a food that had an advisory on it saying 'may contain traces of glass'?' Obviously the answer was no. People with non- allergic kids don't realise the struggle face everyday trying to protect our wee ones. We just need to keep reminding them! So glad she is ok x

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  7. Thanks for sharing! I'm so glad your daughter is okay. My daughter is 12 and has had two ana episodes, the first at 3 and the second at 10. The first we gave Benadryl and rushed to the doctor, but the second progressed extremely rapidly and I gave Epi and called 911. It was scary but the ER doctor said we handled it perfectly. My only annoyance was that the 911 dispatcher instructed us not to give any further medications until the paramedics arrived (we had done one Epi but no Benadryl at that point) and I was like, "I am following the doctor's plan!" and gave her Benadryl too. It's amazing how health professionals are not always educated about anaphylaxis. The resident at the ER told us they would keep her for only 2 hours, but the attending extended it to 6, thank goodness. I was worried about a biphasic reaction.

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  8. Thank you everyone for your posts and replies. The online allergy community is SO great at supporting each other!! Beth-thanks for sharing your story. Because so many of you post your experiences I have learned from you all what I should look for, when to worry, and how to advocate for my child. I worry that another caregiver may have delayed responding since she did not, as the Dr. said, "look horrible" but I know my child and she was declining pretty fast. Another 10 minutes could have been a very different story. Today I am sharing this with all of my child's care givers and reviewing our action plans to be sure everyone knows how to care for her. oh-and no new foods for a week or so ;-)

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  9. Thanks for posting this. My 10 year old son is severely allergic to peanuts, although he's never had a reaction since his first (controlled) exposure at age 3. I confess that I'm sometimes tempted to ignore the "may contain" warnings, because oftentimes I think companies put them on to cover their backsides, not because of any real risk. BUT, having read your post, we won't let ourselves take that risk -- clearly there is something to it.

    It was also good to hear how the whole trip to the ER progressed for you and how you handled it (very well, by the way!), in case we ever have to go through the same thing.

    Lisa

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  10. thanks for posting this. I too have ignored the may contain warnings because sometimes I feel getting my boy who is 4.5 to eat anything is difficult enough and again these companies are protecting themselves. However having read anges339 comment and analogy "would we feed our kids something that may contain glass really did it for me". I am far from ignorant on this issue but am angry that I have been slack. Thank you

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  11. Thanks for posting. You just lived out one of my concerns/fears. We've had our ER visits and many doses of Benadryl along the way, but haven't had to use the epi-pen. Hoping not to, but if ever needed, also hope we'll realize when its time (versus waiting for things to get better when they don't). You were clearly prepared, and a good advocate in the ER.

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  12. Thanks for posting. You just lived out one of my concerns/fears. We've had our ER visits and many doses of Benadryl along the way, but haven't had to use the epi-pen. Hoping not to, but if ever needed, also hope we'll realize when its time (versus waiting for things to get better when they don't). You were clearly prepared, and a good advocate in the ER.

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  13. Aileen-thanks for your comments. Honestly, I had the Epi Pens in hand but couldn't make the call to use them-I was afraid. As I said, at first I was relieved they didn't want to give her epinephrine but when I saw how she was continuing to get worse I realized it was time. Being in the ER made it less scary-and they gave it to her like a shot instead of with the pen which was no big deal for her since she takes shots easily. Seeing how fast she recovered after giving it I will NEVER hesitate again if she is progressing. Also-practice with your old Epi Pens on a grapefruit. I did it twice and now I know what to expect and feel more in control. Good luck and my you NEVER need them!!

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  14. Thank you so much for posting this very important information . My son has a fatal peanut allergy so I understand all of your concerns . An allergist once told me this information " if it says 'may contain nuts' , regard that as it DOES have nuts " . We must all remain vigilant about reading labels and asking questions !

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  15. What a frightening experience! I rushed my 2.5 yr old son to the ER a few months ago as soon as he started to develop a face full of hives and swelling eyes. I pulled over long enough to get some benadryl into him, but his eyes were swollen shut and his lips swelling by the time we got to the ER. Thank God he ended up being all right, but I hesitated with the epi because I was uncertain. The doctor told me that it's always better to err on the side of caution and give the epi if you're unsure. She said that if you begin to think that you might need to use the epi-pen, you go ahead and use it. It is so scary to be in that situation though!

    I really wish that companies would take this more seriously and post the "may contain" and "shared facilities" clearly on the label.
    Jennifer

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  16. Great post...maybe you'd share it with the food allergy blog carnival? Today's the last day to submit, and I'm short on submissions that aren't spam! Thanks!

    http://blogcarnival.com/bc/cprof_2597.html

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  17. Libby-thanks and sure I'd be happy to share it!! I'll go onto the site later and post it. THanks for the suggestion!

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  18. So glad Alexa is doing well and this is a happy ending! I also often try to rationalize using my Epi-Pen when I have a reaction -- I'm ANA to tree nut and a grown woman -- but the post-Epi discomfort is always better than the alternative of suffering for hours with the swelling, itchy and uncertainty "is this going to get worse?" Having this experience under your belt is a good thing - it will indeed give you confidence to use it without a doctor being there. It is also good that Alexa now knows what to expect and won't be as anxious. Good for you in speaking up at the ER -- your instincts serve you well indeed!

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  19. Good call - you know your child best. My son is allergic to ibuprofen and cortisone - and am surprised at how many times people in a medical setting have told me that this is not possible!

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  20. What I don't understand is why the product didn't have labeling on the packaging. I've never had a reaction to anything that didn't have a warning label on it, and neither did my kids. I thought it was required by law that they label the top allergens even if it's only a potential cross contamination. *confused*

    If it wasn't labeled properly, they need to recall those items immediately for undeclared allergens.

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  21. Jennifer-I was traveling and just returned. Are you in the US? Labeling for same facility, same equipment and even "may contain" are all VOLUNTARY here! They have to list ingredients in plain English "milk" vs "casein" but do NOT have to list any other warning regarding cross contamination. After looking online I've found several complaints about Entenmann's products and reactions. This is why as a policy, I call each new company I use. While I was traveling I was going to give my daughter some mini bagel pizzas and found out they don't label at ALL and that their factory changes what they make so often they could not label! SCARY!! Glad I called first! Hope that helps clear it up a bit!

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  22. Thanks so much for this information. My son was just diagnosed with a peanut allergy this summer, and he is 5 1/2 years old. He's eaten peanuts his whole life and this came out of the blue!

    I am sitting her with the bag of Little Bites, which I also bought from Costco. It does not mention any of the "made in the same facility.." lines that many of the entenmanns products have. So I assumed that that were made in a different facility. I did not realize either that the labeling was voluntary. That is so interesting and GREAT to know. Wonder why the label some boxes of their products and not all.

    Thanks for your post-- I am not letting him eat this and it will be returned to Costco tomorrow.

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  23. One other thought--I saw your daughter is also allergic to soy. In the ingredients it lists soy lecithin and soybean oil. Could those have possible been the trigger, rather than the nut possibility? Just curious.

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  24. So glad this post helped! I love hearing from other allergy moms especially when I can help!! Funny-the other day my husband bought chocolate chip cookes from Entenmans for my son. I freaked. I said "do you realize those are the brand that sent Alexa to the ER? I don't want those anywhere near her-or in our home" he was like "oh, but he box says 'may contain coconut' and nothing else." I was please to see that SOME of their boxes have warnings but then why don't ALL of them? I'm going to email the company. I suggest you do as well.

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  25. Nope-she can tolerate soybean oil and soy lecithin. Soy gives her a tummy ache but not anaphylaxis. It could have been egg but she's never reacted that way to egg either. Egg is usually one or 2 hives and easily treatable with benadryl. Definitely seemed like a nut reaction.

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  26. So glad she is fine! Reactions can vary, so it may have been due to the egg. Sometimes, it can be a hive or 2, sometimes full blown anaphylaxis. I'm always reminded of BJ Horn's story. It may have been a nut reaction, too.
    I tend to buy natural brands at the health food store because a live person usually answers the phone & can answer my ? While I'm waiting, instead of in 3 weeks!!!

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  27. You did a great job and was a great advocate for your daughter. It is true, unsless you have a child with food allergies or have them yourself, it is hard to find true empathy. I'm actually quite surprised that entemanns does not need to list allergy information on their packaging. I thought that was required on all labeling. My daughter, now 10, is allergic to tree nuts, fish and sesame. She is okay if the label says "made in a facility that also processes", but i never give it to her if it says "may contain". Up until now, i have been trusting these labels. My daughter recently had a severe reaction eating a plain bagel with creamcheese for a local bagel store. her dr ran blood work shortly after the event to see what the reaction was from. most people said it had to be a sesame cross contact. it was in fact from fish, possibly lox or whitefish salad. I would not rule out the egg allergy with her as they say second reactions are usually worse than the first. Maybe you could check with yor doctor to see if there is any way you could check what it was she reacted to. Shame on entamenns. that information should be listed.

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  28. Thank you! I can't believe it's been a year since this happened. When I saw our allergist that August she was aghast to learn that the ER Dr. did not give her Epinephrine and that I had to ask for it. She called the hospital to voice her concerns. The strange thing with the labeling is that SOME boxes say "may contain" or "same facility" but not all of their labeling is consistent. They are required by law to list allergens but the "may contain", "same equipment" and "same facility" are all voluntary. I very rarely allow her to eat products in the the same facility as nuts or peanuts unless I know the company's policy for dealing with xcontamination. For example, one company runs items containing allergens at end of the day and all in once batch, then the machines are cleaned. So I let her eat from them. Also, I know now that it HAD to be a nut xcontamination because she has eaten baked egg a few times since then and only experienced a mild stomach ache. We've decide to continue to avoid egg for another year but we think her allergy is improving and that she may be able to add baked egg back into her diet. Only time will tell. Hope we don't see the ER for ANA for another 10 years!!

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    1. thanks for responding. as an allergy mom i know how scary this situation is and how fragile our children are. information is our and their best friend. My daughter is sometimes afraid to eat food that i know is safe for her. i'll tell her its safe, but i can tell on her face she is afraid to eat it. in those situations i always tell her if she doesn't feel safe eating it then she shouldn't. i always want her to trust her instincts. i'll also be training her this year on how to administer her own epi. i pray for a cure.

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  29. same writer as above....my daughter with the tree nut allergy does eat those entamenns little bites all the time. if you find out anything more about the cause of reaction or ingredients in the brownies can you please post. thank you for sharing.

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  30. My daughter just had a allergic reaction to these as well. The plant is in Mexico I found out and who knows what or if they follow guidelines. I called the companyl and they confirmed that tree nuts and peanuts are in the factory. I am so upset that they
    Can not label them correctly and that they feel it is ok to play with someone else's life. I will be researching this more and continue to call and complain to the company.

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  31. So sorry to hear about your daughter's reaction! Thank you for the information. I didn't even bother researching afterwards I was so dismayed I knew I would never use them or trust them again. Some of their products are labeled well (same facility, same equipment) others not labelled at all. I give up.

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  32. So sorry to read about your daughter's reaction. I gave my daughter Entenmann's Powdered Donuts recently and she became nauseous immediately afterward. Luckily that's the extent of her reaction and I only had to give her Benadryl. I showed her allergist the statement from their website and he was really surprised that it wasn't on the package. He tested her for coconut just to rule it out, but it was negative. I've always trusted the packaging labels, but not anymore. I certainly won't buy any Entenmann's products again.

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  33. Thank you so much for sharing your story & especially for giving details on how her symptoms progressed. I too have been on a food allergy journey for 4 years. I am so thankful that we've not had to use the epi yet. That in itself is a big accomplishment for any mother! Good job to you! I am so sorry that your daughter has experienced this. I don't know why, but I don't think I've ever thought about checking the tummy for a rash. I've always thought I'd notice a big reaction on my daughters face. The information is certainly useful. I've asked my doctor how I would know when it's time to give the epi and he's always said, "you'll just know."

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  34. My daughter is 16 with a severe allergy to yellow 5 dye, and I am allergic to peanut/tree nuts. We carry an epi-pen everywhere we go and check labels always. With my daughter, I have to call the manufacturer of antibiotics because many of the inactive ingredients contain yellow 5 dye or one of its many different names. Plus, the inactive ingredients can vary between manufacturers. Keep in mind, the epi-pen injector does not hurt when it is injected, as I have had to self-inject before. The force of adrenalin pumping and hand slamming into the thigh to inject the medication can hurt more than the injection itself. However, I do often have leg pain the next day for about 48 hours that is taken care of with over the counter pain meds. I would ask you doctor the best place to administer your daughter's epi, as both my doctor and my daughter's doctor recommended the thigh instead of the arm.

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