tag:blogger.com,1999:blog-272905162914577099.post8103013308390579276..comments2023-06-24T07:01:51.675-07:00Comments on Food Allergy Bitch: Why We Don't Use Epinephrine EnoughFood Allergy Bitchhttp://www.blogger.com/profile/10243380102426383939noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-272905162914577099.post-13884430667692269952012-08-25T17:14:11.060-07:002012-08-25T17:14:11.060-07:00I can obviously only plead the fifth on this entir...I can obviously only plead the fifth on this entire post.<br /><br />I *have* been guilty, guilty, guilty of not using epinephrine... and if I'm brutally honest, it's probably been well over a dozen times, at least in hindsight.<br /><br />The problem is that it's just so seldom that clear when it's happening.<br /><br />Our only real indicator is the suddenness of onset. There's nothing else like it. The bad news there is that there's also NO TIME TO EVALUATE what is happening. Bummer, that. Yes, really, it's often a sense of "Wait-- wait-- I know this one! Wait a minute... WHAT THE HELL???" as my daughter bypasses all of those nice tidy grade 1 and 2 symptoms of anaphylaxis... and proceeds to keel over unconscious.<br /><br />Even worse, the very first symptom in the past several very severe anaphylactic reactions, and the common feature in ALL of them since my daughter was about seven? Cognitive impairment from crashing blood pressure, ultimately severe enough to cause a loss of consciousness if she remains upright.<br /><br />In other words, not only are there no peripheral symptoms, but the one telltale symptom is the one that robs the person of the ability to self-treat or self-advocate effectively, and provides very few signals to anyone else that something is amiss at all.<br /><br />Scary, scary, scary. <br /><br />For help with interpreting what you're seeing and what it means (this may be the same chart posted above by the FAB)...<br /><br />http://pediatrics.aappublications.org/cgi/content-nw/full/111/Supplement_3/1601/T2<br /><br />and the plain-English version:<br /><br />http://the-clarkes.org/stuff/ana.html<br /><br /><br />PS. My 13yo DD *loves* the idea that she might be able to tuck one of the new autoinjectors into a 'cute' purse rather than a bulky one. I love the idea that like an AED, it may give even a completely untrained bystander who sees her collapse a chance to help save her life (she wears a MedicAlert bracelet).Unknownhttps://www.blogger.com/profile/02423370032348321418noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-62917452054599308872012-08-21T09:06:35.383-07:002012-08-21T09:06:35.383-07:00I don't mind at all - thank you! It's defi...I don't mind at all - thank you! It's definitely an important message. <br /><br />One of the saddest parts about teenage food allergy deaths is that all the peripheral symptoms can be gone, so a food-allergy reaction looks like asthma. It's so important that parents of older children know it's a possibility. Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-54695669294409378292012-08-21T08:38:01.523-07:002012-08-21T08:38:01.523-07:00My daughter found a tiny bit of peanut when she wa...My daughter found a tiny bit of peanut when she was a toddler and my husband and I sat there staring at her for 20 minutes, waiting to see what would happen. Our conversation went something like "do you think her cheek looks puffy?" "I don't know, maybe a bit" "she seems to be breathing fine" "maybe we should just give her the pen anyways" Well, she eventually showed her first symptom (lip swelling) and we gave her the pen and went to the ER. We had been through many reactions before that, but hesitated because she had always gotten a rash and vomiting. I'm glad you wrote this post, because I don't think many parents probably really understand how much a reaction may change until it happens to them. I'm going to share on my blog if you don't mind.Aggiehttps://www.blogger.com/profile/10268751100596240161noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-27338895459864852582012-08-14T14:06:56.386-07:002012-08-14T14:06:56.386-07:00Okay, I was confused on the fever. Yes, I am gett...Okay, I was confused on the fever. Yes, I am getting information from several sources. I forgot to mention I am a senior nursing student so I feel like I have a slight advantage there when it comes to finding and understanding medical advice. What I also forgot to mention is that when I took my son to a new doctor (hoping she would be better) she couldn't even give me an allergy action plan for school. She acted as if she had never seen one before and didn't know what it was. I am just more and more surprised by the lack of knowledge and preparedness of medical professionals every day. No doctor has even told me how or when to use an epi pen. I have never even been shown how to use an inhaler without asking. Now that I am in nursing school and doing more of my own research I know the questions to ask but there are so many out there who don't and it could be too late for their child when they find out.htg20https://www.blogger.com/profile/10234105818218286282noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-49296573501834262702012-08-14T13:01:25.045-07:002012-08-14T13:01:25.045-07:00On a more practical note, the cost of this device ...On a more practical note, the cost of this device will probably be pretty expensive -- most likely more than the epi-pen, but at the very minimum comparatively priced. Insurance companies won't want to pay for it.ElleMohttps://www.blogger.com/profile/01023612052478838943noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-24274472324382305052012-08-14T06:12:31.651-07:002012-08-14T06:12:31.651-07:00Thanks, Nicole!
Hopefully, by the time your son i...Thanks, Nicole!<br /><br />Hopefully, by the time your son is on his own, there will be a cure and this will all be a quaint memory. :)Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-6055261695175517952012-08-14T06:11:25.505-07:002012-08-14T06:11:25.505-07:00Josh, underlying this post was the new study that ...Josh, underlying this post was the new study that came out that showed people don't use epinephrine enough:<br /><br />http://www.reuters.com/article/2012/06/25/us-care-for-babies-idUSBRE85O0TD20120625<br /><br />You're not alone! Obviously, I also have waited too long. I've also not given it at all when I should have. <br /><br />The chat board comments about this study tend to be "what's wrong with people that they don't use epinephrine?" That's why I think it's important to admit that I sometimes feel clueless, even after 17 years of this. It can seem on the internet like everyone else knows what they're doing and I think it makes less confident moms not want to admit to their confusion and hesitation. (And I honestly think the moms who are acting superior are just doing it to make themselves feel better -- no one is an expert at this.) <br /><br />My doctor once told me that he'd let me know if I was giving epinephrine too much and I should just do my best and trust my instincts. It's all we can do! Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-66831672774696347202012-08-14T05:59:51.176-07:002012-08-14T05:59:51.176-07:00htg20, I want to make sure I was clear: if there&#...htg20, I want to make sure I was clear: if there's a *fever* involved, it's probably NOT anaphylaxis. <br /><br />This is a very good resource:<br /><br />http://www.aaaai.org/Aaaai/media/MediaLibrary/PDF%20Documents/Immunotherapy%20Forms/7b-World-Allergy-Organization-Systemic-Reaction-Grading-systemx.pdf<br /><br />FAAN's page has the "when to use" chart:<br /><br />http://www.foodallergy.org/section/a<br /><br />Beyond that, I really think it's crucial that every parent sit down with their doctor (make an appointment just for this if necessary) and talk through the action plan. Because it's specific, it will allows you to have all the conversations about what a drop in blood pressure looks like, or whether hives and a known peanut exposure is enough. A great deal of it depends on your CHILD'S history, which is why the idea of getting medical advice from blogs or chat boards is not good. My kid will not react like your kid.<br /><br />Each child has mast cells that are triggered when an allergic reaction occurs, and that's what creates the symptoms. Each child's cells are different. The cells may even be triggered differently depending on the *allergen*! <br /><br />There's just no substitute for a good doctor's help. If you don't have one, you have to work until you find one. <br /><br />Please don't let the post stress you out. I do think it's important to talk about when to use epinephrine *before* you need it, but you have to do it in small steps. Food Allergy Bitchhttps://www.blogger.com/profile/10243380102426383939noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-49052120492438752782012-08-13T21:12:23.380-07:002012-08-13T21:12:23.380-07:00I have nearly taken too long to give it to my son ...I have nearly taken too long to give it to my son before. I've reached the point where I accept that he's going to get stuck by me unnecessarily from time to time over the course of his life. Josh Ghttps://www.blogger.com/profile/15216549168025609196noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-56913531945671839522012-08-13T19:14:47.438-07:002012-08-13T19:14:47.438-07:00Oh my, I have so many questions and am more confus...Oh my, I have so many questions and am more confused than I ever was (not by your post). We have never had to use the epi pen and I thought I knew to use it when he was having difficulty breathing but now I have learned that could either never happen or be too late. I am not sure if I learned this from your blog or another source but I also know that children may die of a sudden drop in blood pressure rather than airway constriction. Again, I'm so confused. Could you give me some sources that I can read up on about when to use an epi? And what is this about a fever? My son is 7 and allergic to diary,some nuts (including peanuts but not almonds surprisingly) and eggs. He has eaten eggs (they gave him an itchy mouth). Dairy can make him sneeze and have lots of mucous, vomit and/or have diarrhea. He has never eaten peanuts but has broken out in hives locally when they touched his skin (same with dairy). htg20https://www.blogger.com/profile/10234105818218286282noreply@blogger.comtag:blogger.com,1999:blog-272905162914577099.post-43533864111054337012012-08-13T19:04:22.610-07:002012-08-13T19:04:22.610-07:00I can so relate to...."when is it real....whe...I can so relate to...."when is it real....when is it bad enough....and I hope never....when is it too late." My son is 6, so I still have some control... I dread the day when he is on his own. Love your blog.<br />From, Nicole.....someone who really "gets it".....NicoleC.https://www.blogger.com/profile/16271391484410259152noreply@blogger.com