tag:blogger.com,1999:blog-3739118490318763551.post3617411955191903455..comments2023-07-12T22:49:14.635+08:00Comments on Where's My Glow? : Of anaphylaxis, ignored instincts and guiltGlowhttp://www.blogger.com/profile/08156015996147898156noreply@blogger.comBlogger98125tag:blogger.com,1999:blog-3739118490318763551.post-63526360027007852872012-05-30T23:10:54.854+08:002012-05-30T23:10:54.854+08:00Thanks, Mrs T. It's starting to sink in that I...Thanks, Mrs T. It's starting to sink in that I need to let it go and move on. Feeling guilty about it will do nothing but eat me up inside. xGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-29606749812851265692012-05-30T18:48:55.587+08:002012-05-30T18:48:55.587+08:00Hey
Thanks for sharing that! Wow what a crazy exp...Hey <br />Thanks for sharing that! Wow what a crazy experience to go through, I'm a doctor (GP) and still hearing that story gave me the chills.<br />Have had two patients with anaphylaxis ever<br />and probably wouldn't recognise the signs in my own kids, as I'm also intent on NOT being a paranoid mother. But I think after reading your post, my awareness will change.<br /><br />Anyway, I know others have said it, but DON'T you dare blame yourself at all.<br />At the end of the day, YOU recognised the symptoms in time to get Tricky the right treatment BEFORE it was too late.<br />the way I see it, you didn't make any mistake, you did the right thing just in time.Mrstbloggerhttp://www.mygoinggreenblog.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-47083536768204185022012-05-19T06:46:36.287+08:002012-05-19T06:46:36.287+08:00Yeah age and severity can definitely play a part i...Yeah age and severity can definitely play a part in waiting times. I hope they don't keep you waiting too long. Our initial wait time was 13 or 14 months. I asked to be put on a cancellation wait list, then she had her second and worst reaction 9 months later, so I phoned them to update them and we were seen a month or so later. <br /><br /><br />There are some allergy storybooks out there too. That would be great for your son I think. Even though we have rarely pointed nuts out to our daughter she can recognise them. Must have been from the storybooks and looking through the supermarket catalogues. I try to make an effort now to ask her, what is that and she tells me (she is 5 next month).Amyhttp://theramblingsofamummy.blogspot.com.au/noreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-25882807047786094092012-05-18T22:09:40.080+08:002012-05-18T22:09:40.080+08:00Amy, you're an absolute legend. Thank you SO m...Amy, you're an absolute legend. Thank you SO much! For now we've decided to teach him to say "no nuts" when we're out because he's too little to understand what different nuts are.<br /><br />Still waiting on an appointment with the immunologist, though apparently you skip the big waiting list if it's a severe reaction like he had.<br /><br />Thanks again :)Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-17332459449374032292012-05-18T19:32:09.417+08:002012-05-18T19:32:09.417+08:00I forgot to mention. The may contain traces of nu...I forgot to mention. The may contain traces of nuts type warnings are currently NOT MANDATORY, they are purely voluntary.<br /><br /><br />The only mandatory labeling is that if a product contains one of the top 8 or whatever it is food allergens AS AN ADDED INGREDIENT, it must be listed under ALLERGY ADVICE or similar.<br /><br />But say a product that doesn't have nuts as an ingredient but may pick up traces due to the factory, this does NOT have to be listed anywhere. So like I mentioned in my last post, the presence of or the absence of this warning should both be treated with caution.Amyhttp://theramblingsofamummy.blogspot.com.au/noreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-70036614189007869952012-05-18T19:28:36.640+08:002012-05-18T19:28:36.640+08:00I'm glad your son is okay. Re: the first expo...I'm glad your son is okay. Re: the first exposure and second exposure thing, really it means nothing. People can consume something many many times and then one day develop an allergy to it. <br /><br />Finding a good immunologist is essential, there are so many things to learn and so many hidden things you wouldn't even think to look for.<br /><br />Even though this resource is out of date, some product information would still be accurate <br />http://www.sswahs.nsw.gov.au/rpa/allergy/resources/allergy/allergenfreeshoppinglist.pdf Just make sure you read the labels in case ingredient information has changed or warnings have changed.<br /><br />Off the top of my head, avoid anything that lists hydrolised vegetable protein (unless it states its source and it's not nuts). Natural flavours can be a problem if source is not mentioned.<br />As for the 'may contain traces' warnings, you will get mixed advice from specialists and parents, but imo, you are better to NOT let your son consume products containing this warning for any nuts and if a product doesn't list nuts as an ingredient and DOESN'T have this warning it does NOT mean it is safe. In these cases I phone the manufacturer and ask them for further details. Sometimes they have these details at hand, othertimes they have to call you back. You get use to asking about what is processed on the same lines, are nuts processed in the same factory etc etc.<br /><br />If you want to join a private facebook group, I have found this one to be extremely supportive <br />https://www.facebook.com/groups/110760385678767/ and the information shared is good, unlike some other public pages who tend to take risks with what they give their children.<br /><br />My daughters specialist told us that the best chances of outgrowing your food allergy is to have STRICT AVOIDANCE of the allergen. So this means for us ALL NUTS. The reason for this is, there are so many mixed nut products on the market, that sourcing one particular type of nut that hasn't been cross contaminated with another type of nut is difficult to find. And really the only way to guarantee that it is safe imo is if it was batch tested.<br /><br />Also brand wise don't be fooled. Terrific companies for prepackaged food are Freedom Foods and Orgran. But not all of their products are labelled nut free, but some people don't realise this and use regardless. An example is the Freedom Foods vege spread. People assume because it's Freedom Foods that it's nut free. The issue here is and I have had this conversation with Freedom Foods (whom I love!) is that their vege spread is not currently BATCH TESTED. So while there should be no traces of nuts in the product, they will not and cannot guarantee it. The good news though is, they do plan on batch testing in the very near future and labeling it nut free also.<br /><br />Another product to watch out for is Eskal Free Nut Butter. Alot of people with allergies to both peanuts and tree nuts consume this. Bad move! If you look at the packaging it makes NO mention of being free of tree nuts. It only mentions that it is free of peanuts and processed in a peanut free facility. I phoned the Australian distributor and they could not guarantee me that it was free of tree nuts........ The only product like this that is definitely free of both is Sunbutter which is only available in the U.S. :/<br /><br />Okay I have waffled enough lol. Good luck with everything and be prepared for constant education of yourself adn your son. He may not understand now, but still talk to him about it and start educating him like he does understand. There are some great products on the market too to help in your journey.Amyhttp://theramblingsofamummy.blogspot.com.au/noreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-60988708132274186282012-05-13T16:57:57.950+08:002012-05-13T16:57:57.950+08:00Paula that's so horrible! I've been told t...Paula that's so horrible! I've been told to watch for mangoes for Tricky because they're related to cashews, but he's already tried it with no reaction so fingers crossed it stays that way.Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-52779445426221182252012-05-13T15:05:19.096+08:002012-05-13T15:05:19.096+08:00I suffer from anaphylaxis myself so I'm right ...I suffer from anaphylaxis myself so I'm right with you in giving it the big Fuck Off. <br />I guess I'm lucky given my allergy is fruit based and being Mango its generally only a factor while in Season. I passed 2 sets of allergy tests and it was only when I ended up in intensive care that a clinical immunologist diagonsed anaphylaxis .Paulahttp://www.akapenny.com/noreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-51507374399973811872012-05-08T15:57:06.958+08:002012-05-08T15:57:06.958+08:00Re-grouped, fallen apart, and trying to re-group a...Re-grouped, fallen apart, and trying to re-group again. It's like a fucking merry go round... it ain't so merry xxxGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-22506865766621825752012-05-08T15:56:34.783+08:002012-05-08T15:56:34.783+08:00Hindsight is 20/20... my current vision, not so go...Hindsight is 20/20... my current vision, not so good.Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-69183148139130967412012-05-08T15:56:03.758+08:002012-05-08T15:56:03.758+08:00I have been reading everything and YEP, it ALL has...I have been reading everything and YEP, it ALL has it on there... but that's such a great tip - we scan the may contain and not the ingredients, d'oh! <br /><br />Thanks so much Natalie xGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-39153783110029240552012-05-08T15:54:54.536+08:002012-05-08T15:54:54.536+08:00I have such issues with trusting professionals... ...I have such issues with trusting professionals... and the time I did it this happened. Sigh.Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-51995053180767437712012-05-08T15:54:20.064+08:002012-05-08T15:54:20.064+08:00It wasn't until this weekend's hospital tr...It wasn't until this weekend's hospital trip I even knew that there was such a thing as viral asthma - I've had asthma all my life and thought you either had it or you didn't. So much for being informed, hey? Thanks love xGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-61807231530745788222012-05-08T15:52:25.473+08:002012-05-08T15:52:25.473+08:00So scary, Grace! I'm just so thankful it prese...So scary, Grace! I'm just so thankful it presented now and not when we were in Malaysia and Tricky was eating all the local food (which obviously didn't have cashews in it!) - if he'd reacted there I wouldn't have known who to call.Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-85089454070434831382012-05-08T15:51:19.885+08:002012-05-08T15:51:19.885+08:00I cannot believe they didn't mention that the ...I cannot believe they didn't mention that the test would react negative without prior exposure or that therefore the results can change as an allergy develops. I'm not stupid, but I don't have a concept of allergies and it was their job to tell me that when I was asking questions rather than sending me away with a "you don't have to worry about it". <br />Turns out our weekend wasn't hospital free... but that's another story :(Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-75612553228717673872012-05-08T15:49:23.569+08:002012-05-08T15:49:23.569+08:00Thanks, Kylie. I have put on boxing gloves because...Thanks, Kylie. I have put on boxing gloves because bare knuckle beating might bruise :PGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-39260861771569444482012-05-08T15:48:52.554+08:002012-05-08T15:48:52.554+08:00They don't tell us these things, Kate, and it ...They don't tell us these things, Kate, and it really annoys me. We're not medical professionals, how are we supposed to know when these things don't fall in to the 'common sense' realm?Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-37057115214503971842012-05-08T15:44:44.729+08:002012-05-08T15:44:44.729+08:00My mum keeps picking up products and exclaiming &q...My mum keeps picking up products and exclaiming "MOOOOOORE tree nuts! OMG what is HAPPENING?". And people wonder where I get my melodramatic streak from.Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-25400964345649292442012-05-08T15:44:05.231+08:002012-05-08T15:44:05.231+08:00A week out from it and the self blame has diminish...A week out from it and the self blame has diminished a bit... not entirely, but it'll get there I hope.Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-45844041182172747862012-05-08T15:13:19.472+08:002012-05-08T15:13:19.472+08:00OMG Jocelyn how scary! Especially to not know what...OMG Jocelyn how scary! Especially to not know what it was :( I have lumped myself in to the paranoid parent group now, I'm freaking out left right and centre :(Glowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-62567631888202722862012-05-08T15:08:07.804+08:002012-05-08T15:08:07.804+08:00It's amazing how fast it can happen, Melissa! ...It's amazing how fast it can happen, Melissa! I'm not normally a paranoid person, but after seeing how bad it can get in such a short amount of time, and being told each exposure gets worse, I'd definitely be leaning towards getting Sammy tested to see how bad he reacts to a prick test xxxGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-78436820573647949392012-05-08T15:04:11.612+08:002012-05-08T15:04:11.612+08:00The cuddles haven't stopped around here - they...The cuddles haven't stopped around here - they make everything a bit better :) xGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-82377144545380074682012-05-08T15:03:50.795+08:002012-05-08T15:03:50.795+08:00I'll be OK, now that we're a week out from...I'll be OK, now that we're a week out from it and I can see it without the cloud of anger and guilt, I can see that this is quite possibly a good thing - now, if he tries something else and happens to be allergic we have an EpiPen on hand and know exactly what to do :) xxxGlowlesshttp://www.wheresmyglow.comnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-10908478887606708372012-05-07T21:22:53.644+08:002012-05-07T21:22:53.644+08:00All I can say is that hindsight is a wonderful thi...All I can say is that hindsight is a wonderful thing. You are an amazing mother to your beautiful boy and this sounds like an experience that no parent should have to go through!Sarahnoreply@blogger.comtag:blogger.com,1999:blog-3739118490318763551.post-4318454163188742892012-05-06T22:16:07.463+08:002012-05-06T22:16:07.463+08:00*hugs* It's certainly a crappy situation! At t...*hugs* It's certainly a crappy situation! At the end of the day, you are only human. You were relying on what the tests had said, and it probably would have happened eventually. He was bound to try a cashew sometime. The thing that matters is that he is safe now & you know for the future.<br />You will find that pretty much everything you read will say 'may contain traces of tree nuts'. It's a way to cover their ass as they use the same equipment for a range of food. Make sure you read the listed ingredients. I woke up one morning and just scanned for the 'may contain...', not looking properly at the ingredients and ate a cereal that contained nuts & ended up in hospital. <br /><br />Hope that you & Tricky are doing well. xoxNatalie Mulfordhttp://extralargeaslife.com/noreply@blogger.com