Thursday, May 3, 2012

Of anaphylaxis, ignored instincts and guilt

As far as mistakes go, I've made a lot. But none quite as grave and life threatening as this one.

I'm standing in the kitchen cooking up my favourite dish, chicken and cashew nut. From nowhere I get this gnawing feeling in my stomach that I shouldn't give it to Tricky despite him having been declared "not allergic" to cashews at a previous allergy test*.

But I don't listen to that internal voice. I push down my gut instinct and, with a haughty (and completely judgmental) "I'm not one of those paranoid parents", carry on.

We sit down as a family to eat. I love these moments, the three of us together, talking about our day and reconnecting. Tricky eats one cashew nut and looks unsure of it's texture. We laugh at the funny face he pulls and watch him enthusiastically spoon mound after mound of rice in to his gob. After a pretty standard bedtime routine, I put Tricky to bed without any fuss.

An hour passes and he cries out so I go in to check on him. He is scratching at his knees and elbows furiously - now someone else might have seen that first sign and known straight away something was wrong, but I've lost count of the number of nights Tricky has woken crying and clawing at his eczema so I don't think anything of it.

Instead, I sit with him in the dark, singing and massaging a soothing salve in to his inflamed skin, just as I always do, then leave the room telling him to go back to sleep. He coughs once or twice then falls back to sleep.

A short while later he wakes again, comes out to me wanting cuddles. Because I am still in "get him back to sleep" mode I don't turn a light on... if I had, I would have seen his face was swelling up and his body breaking out in hives. So we cuddle in the dark on the couch and after a few more coughs and being so clingy I decide that he is probably coming down with a cold. 

He coughs more. And more.

Less than five minutes pass.

He starts wheezing.

And it all starts clicking in my head. The scratching, the crying, the coughing, the wheezing. This isn't the beginning of a cold, this is an allergic reaction.

We consider calling an ambulance but think that since the allergy test has shown he isn't meant to be allergic, that this must only be a mild reaction, I'll drive him myself. So I do, picking up my parents on the way for support.

I feel like an idiot, but I'm not too concerned. A quick trip to the hospital and a dose of antihistamines, I think.

On the way there, Tricky gets itchier and he scratches his skin off parts of his arms and neck. What was once a faint hiss of a wheeze becomes louder and louder, clearly audible from the front seat.

Fuck. This is so much worse than I thought.

Triage takes all of two minutes before we are whisked through to a bed with a "we'll get your details in a minute" rush, and straight on to a monitor that showed his oxygen saturation at 89% and his blood pressure very low. What the hell is happening? My little boy is shutting down.

What have I done?

I hold him down while they jab the biggest needle in the world in to his tiny thigh. His scream pierces my soul and I squeeze him even tighter, smothering him with kisses in the vain hope that they'll help. I am barely holding it together when I look up and see my Mum starting to cry. It tips me over the edge and tears spring from my eyes. But they're not sad tears. They're angry tears. Embarrassed tears. Guilty tears.

How could I be so stupid? Why did I ignore that gut instinct? For a moment I let my thoughts run wild. What if he didn't get itchy? He wouldn't have cried and come out for cuddles... his airway would have just closed. Silently, without us knowing. What if, what if, what if?

My blood runs cold.

We're moved to the observation ward to stay the night. I sing and pat Tricky in an attempt to get him to settle, but he is, quite literally, full of adrenaline and isn't having a bar of it.

It's not until much later, in the early hours of the morning when he finally dozes off. He's still attached to the monitor and it alarms every hour or so as his oxygen levels fluctuate. They tell me he's fine, that it's just his sleep cycle, but I cannot look away from it, this machine that goes ping.

I manage to get about an hour of sleep before Tricky decides it is time to start the day.

I'm ladled with information on anaphylaxis and the use of an EpiPen. I'm given brochures and a DVD that I watch on a portable player as Tricky drives toy cars up and down the railings, unaware of how serious the situation is. We're given our EpiPen that he'll have to have with him at all times, a referral to an immunologist and we're told to never have cashews in the house again and avoid anything that contains tree nuts.

They bring us each breakfast. I read the label. May contain traces of tree nuts. Fuck you, world.

Got any allergy advice for us? I could really use some.
*I was told yesterday that initial allergy tests on children who haven't been exposed to an allergen aren't worth the paper they're printed on. The body doesn't always react on the first exposure, as was the case with Tricky, so it was the second exposure that caused anaphylaxis.

101 comments:

  1. Oh darl, fucking tree nut allergies.  I feel your pain.  It's a ridiculously unknown science.  My Mr 10 has a tree nut allergy.  We found out when he was 18 months old when my MIL gave him a cashew.  Cashews are his biggest allergen, shocking, but we didn't know at the time.  He now has an Epi Pen and we are used to having it with us always.  He has now learned to read every label, every ingredient before he puts it in his mouth.  He has learned to do this because it's been so long.  You will get there, promise xx  The other thing is, he has never been allergic to peanuts.  8 years of yearly allergy tests and NOT ONCE have those things come up as an allergen.  Until this year.  Can you imagine if we had've let him have peanut butter because the allergy test said he could!! Fuckers.  Those tests aren't worth the paper they're written on, it's true.  I would stay away from ALL nuts.  Full stop.  The Anaphylaxis Association in NSW is fantastic and the President, Maria Said, talks to you on the phone and is wonderful.  xxx Good luck and please get in touch if you want to know more @redundantmother 

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  2. It can not get much scarier! 

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  3. Well I've been there babe. And just about everything contains the warning: May contain traces of tree nuts.
    It's trial and error and sharing advice, not having any kind of nut products in the house. I know that good Western companies like Kellogg's have nut-free polices in their factories (I've asked them). Workers can't even take nuts to work. But they still have to legally have to have the disclaimer on the packaging. Chase is highly allergic but we've never had a reaction to a product from Kelloggs, Cadbury's, Uncle Toby's, Sanitarium et. If they don't contain nuts obviously. But they still have the warning.
    Eating out and travelling is difficult. Different implements have to be used. Eg, a wok can't be reused if it's cooked a dish with nuts in it. That's tricky. I can't eat nuts if I'm seeing Chase at any stage because I could kiss him and cause a reaction (each reaction will be worse we've been told). The school has banned nuts, but some parents still include products. Chase has to stay away from those kids. The kids themselves are good and don't tease him or threaten him with them as happens in some schools. (Oh yes). He has an action plan and carries a bumbag with epipen at all times at school.
    It's hard, and scary.
    Chase is really good at avoiding products and if in doubt goes without. He remembers almost dying and never wants that to happen again. It's hard but the alternative is unthinkable.
    The scary thing is that others sometimes thing we're being over-dramatic and I've lost count of the times, even at family gatherings, that things containing nuts will be served and just casually mentioned, if at all.
    I'm glad Tricky is okay, and don't beat yourself up. Your instincts were right all along. xo

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  4. Jess@diaryofasahmMay 3, 2012 at 9:05 AM

    Oh Glow, what a disgustingly horrible thing to happen! So glad you clicked when you did and he was ok.

    Don't beat yourself up too much. We all make those stupid decision, usually when being high and mighty. The what it's didn't happen, and you know now, which is the important thing. Xxx

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  5. You will probably hear this a lot today but you shouldn't blame yourself. You'd had him tested and didn't know the failing of these tests until after. We are always second guessing ourselves, not wanting to give in to paranoia, and generally that's a good way to go. It won't help you to focus on the 'what ifs' or on beating yourself up. I think it is lucky you found this out at home, with a meal you had prepared, and you knew what it was that caused it, rather than when he was at someone else's place, in someone's else's care, at a party etc.

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  6. Similar thing happened to me with my daughter when I gave her a scrambled egg one night for dinner. She'd had bits and pieces of egg before, but never a whole egg. She threw it up an hour later and I put her back to bed, thinking she was just getting sick. I went in and out with her all night, as she was really restless, But I was just thinking she was unwell, so I never turned the light on. When I went in the next morning her face looked like it belonged to a blowfish. Freaking scary. Fortunately her airways were fine. But it is the most terrifying thing in the world- and you never stop the bloody mother guilt.

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  7. Becky from BeckyandJamesMay 3, 2012 at 9:13 AM

    Oh, what a horrid experience! I have no advice as we've not had anything like this happen (touch wood). I know people who have kids with allergies and it terrifies me so much that I don't invite them over, just in case I make a mistake.
    Sending you and Tricky loads of hugs x

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  8. Fark ... ing ... hell!! I am super paranoid about nuts - Jaden is nearly three and I still don't let him anywhere near them although I am sure he has had some in fruit toast and the odd dip here and there. Your experience is making me think I should drive to PMH, park in the car park and then give him a handful to try.

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  9. Oh that's so frightening! Please don't beat yourself up! I would have done the same thing - especially seeing as he'd been allergy tested. I would have told myself I was being stupid and still given my kids the food. I'm glad Tricky is OK, but tree nut allergies sound like they SUCK!

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  10. I've heard of a few mothers' groups holding Peanut Parties - I think it's actually a really good idea. But from my experience I'd say do it TWICE!

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  11. Same, Becky, I've always hated the idea of kids and allergies. The other day I took pikelets to mothers' group and forgot all about one girls sensitivity to dairy. I felt so terrible that everyone got some pikelets but her - and hers is just a sensitivity, not an allergy!

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  12. Oh Glow!
    What you did was so human... Mums are so, so, sooo human!
    Our eldest had a similar reaction to shellfish, I waited out the hives too and felt just as guilty as you do, but Please, please, please don't.
    Woulda shoulda coulda but did! You did what you needed to do.
    If I didn't ignore that gut feeling some of the time, my children would do NOTHING!!!
    You are an amazing mama.
    Xxx

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  13. OMG snap! The mother guilt is doing my head in right now x

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  14. That's such a good point, Rachel, I didn't think about that. He ate all the local food in Malaysia... and now I've just gone with another what if. Sigh!

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  15. Ha ha yes - it did occur to me that I might have to do it twice!

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  16. Oh WOW so scary! Tricky's had peanut butter (again, after coming up negative on the test) and didn't react - which was the other factor in me ignoring that gut feeling thinking I was just being stupid.

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  17. I put my faith in the medical professional and their tests. I know they're not infallible but I still feel so angry that they didn't tell me about first and second exposure differences.

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  18. Bronnie it runs so deep doesn't it? I've always been afraid of Tricky developing allergies because I'm allergic to so many things (though only have anaphylaxis reactions to some seafood). After the testing I was so happy, giddy even, that he missed the bullet.
    I will have to pick your brain x

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  19. Ya huh! Freaked me right out!

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  20. that must have been absolutely terrifying for you! How did the test get it so wrong? I thought the test was 100% right??!! glad hes ok x

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  21. I am going to whore this out.
    I studied briefly about the allergies and intolerances with children. I do not understand why parents give people high allergen food so freely and quickly. There are so few you have to be careful with that really kids don't go without.

    But like you, Greenie has had a full allergen test. Came back clear for nuts. We have considered giving him nuts several times. In the end I've just given him something else because I am too scared to see him react the way he did with the egg.
    He didn't go into anaphylactic shock, but he got a rash an hour after having less than a teaspoon of my scrambled egg. Half an hour after we first noticed the blotchy angry rash he wouldn't stop itching at (like your care with Tricky, we have eczema, so I figured it was just that and told him not to scratch it), his ear was bright red and about triple the size it normally is. We had been at the library all morning and were thining he might have been bitten by a bug so we searched while we continued with the activities. 15 mins after noticing his ear it was his cheeks that had swollen, so we left as I called our GP who is always booked out weeks in advence, and I explained tothe receptionist my fears and she said to come straight in how long would I be? Luckily Mr Black was nearby so I left Bluey with my mum, and RAN my heart out to him screaming at him to get in the car and start it. Just as I went to put Greenie in he vomited everywhere. I rubbed his little 11month old back and got in next to him in the car.
    The lucky thing is the vomiting seemed to help, by the time we got to the doctors the swelling was starting to go down, but it still shakes me up to think about his little body that day. He showed the signs. Signs I knew, but I so quickly brushed them off as something else. So....with that, I have so so much love for you. Tricky is fine. He probably thought it was fun to stay in the hospital and get all the attention he did. But as a mother, it makes you question what the fuck you're doing even though it's beyond your control. Shit happens, we can't predict it all, and the important thing is he's going to be ok. *hugs*

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  22. That's so awful, how scary and horrible. Stop beating yourself up, please! You're only human and it's so easy to say "I should have known" after the fact. xx

    Now, Tricky is the same age as my son, and my son has never had an allergy test - was that something your doc recommended? Something you decided on because you have allergies yourself? (I'm worried I should have had my son tested now!) We have a childhood allergy researcher in our mum's group and she recommends trying all the foods which cause allergies VERY early, as there is no evidence that it causes allergies due to early exposure but some evidence that waiting until the child is 3 or 4 to try egg for the first time (for example) can cause allergies to form. So I've given my son peanut butter, eggs, fish - everything I can think of... my husband has even crunched up some nuts for him to try once (but maybe we should try twice!). Such a scary story to read - hope Tricky is fine and you are ok too! xx

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  23. hi, I just fell here from Edenland's page- I just want to tell you, you won the lottery!!! This could have turned out differently, but it didn't, which makes this the best day of your life because **IT** (that we dare not speak of) didn't happen. Guilt won't help you, but lighting a candle and thanking the universe might.

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  24. Oh sweetie, I'm so sorry. How incredibly scary. Please don't beat yourself up about this. How could you have known? In the end, you got him the care he needed and he's okay. Deep breaths, sweets, deep breaths. x

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  25. Tricky had the original allergy test done because he was part of an egg allergy study at the Childhood Allergy Research Institute that aims to prove exactly what your friend said, that early exposure can help prevent an allergy developing. As soon as he started solids he had a teaspoon of egg (or control powder, we don't know - it was a double blind study) a day, and after he turned one he had to have a whole egg three times a week until he was 18months. At the end of it he had a full allergy screen. He qualified for the study because I have allergies (just dust mites/cats/dogs/pollens etc) and he has eczema.

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  26. shit.  I had no idea.  Here I was wallowing in my shit and you were in this.  Neck deep and screaming.

    :(

    And yes, fuck you world.

    xx

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  27. You are so so SO right, Carmen. If we look through the grey often a little bit of it is a silver lining.

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  28. *inhales deeeeeeeeeeeeeeeply*

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  29. Holy moley. Frightening. One of our kids had an allergic reaction to medicine. His face swelled, rashes and his throat started to close. So fricken frightening. Im glad he's okay.

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  30. I put my trust, and (melodramatic warning) Tricky's life, in those test results and the advice of the Allergy Institute. I thought I was being so stupid to hesitate giving him the dish and actually thought to myself "no, the test said he'd be fine, stop worrying about nothing". It's not their "fault" but I do wish the advice they'd given was more accurate.
    That would have been SO scary with Greenie - especially because he was so little!
    And yep, Tricky loved the hospital. Nurses fussing over him and a bunch of toys to play with.
    xxxxxxxxxxxxx

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  31.  Now puff, puff, puff, puff....oh wait. That's childbirth. Never mind.

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  32. Oh Glow what an awful experience for you all. Thankfully you are armed with tithe knowledge now. I am glad other mums of nut free children have posted. Please let me know if I can help in anyway.

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  33. also I hope Tricky is ok now? Did they tell you to have antihistamines on hand with you as well? I know a few nut free mums do that and it can help if you ae worried he may have ingested nuts.

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  34. but of course ask medical folk first! I just realised that diqus and ipad don't play very well together hence my replies to my comment. 

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  35. Remember that in the end YOU did react and did an excellent job of getting Tricky to that hospital as quickly as you did. You are an excellent mother and you should be praised for that. I admire mother's like you. And in my opinion Mother's Day is every day. Bless. xx

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  36. Oh god, terrifying. 

    The thought of this has me in chills and cold sweats.My bother-in-law (spelt like that on purpose, he's 15) is allergic to tree nuts. He has had a fair few near misses. He just returned from a three week school trip to London and New York (the spoilt little turd. God I love him though.)  I'm telling you this random anecdote so you know that:a) This will probably happen again, no matter how vigilant you are. Those times, like this time, will not mean you are a bad mother. Far from it. b) This is something that you and Tricky can live and thrive with. It will be tough, but it is do-able.  Good luck, Glow.

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  37. BIG HUGS FOR YOU ALL, what a scary experience indeed!  I have grown up with allergies surrounding me, my sister is highly allergic to nuts, fish, all animals, msg, cucumber (I know this because I gave her a facial one day in our teens and applied cucumber to her eyes, 20 minutes later took them off and her eyes swollen and cant see out of them, so much for relaxation!).  
    My son is highly allergic to cashews also, such a scary thing when the grandparents (inlaws) that think nothing of it would sneak him one every now and again!  WTF, I think they must of missed the bit when I said please dont feed him those it may close up his airways and kill him!! hmmmm
    My sister's daughter is highly allergic to the same as my sister but she also can not have milk products, she starts to throw up instantly such a sad thing to see them go through.
    Some people are very naive about the whole allergic thing and do not take great care in preparing food.  As long as you educate him as to what he can and can not eat and as he gets older to read the labels. My niece will always read a label of something she has not eaten before.  
    Your little one will be fine and still be able to enjoy the yummy things in the world, he will not miss out :)

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  38. So, so scary for you all. Allregies, they're nasty little shits! My small one has eczema and had a dairy alergy she has thankfulky grown out of. Effing scary. Don't let the guilt get you - I think I would have done and reacted in exactly the same way as you x

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  39. Oh Glow big hugs. My sister has anaphylaxis to egg and nuts and I've grown up with reading labels etc etc, now one of her boys has anaphylaxis to nuts. What's irks me more than anything is that people don't know the difference to intolerance versus anaphylaxsis, they pass it off as 'just an allergy' but until you see someone like Tricky and my sister barely being able to breath then you will know the difference. It's scary for you now but will soon just be an everyday part of your life and as Tricky grows up he will learn to ask about food, just as my 5 year old nephew does. You're a fab Mum don't doubt yourself xxoo

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  40. You need two EpiPens per newest ASCIA recommendations. You get 2 on PBS. Please ask for that ASAP.

    My 6 yo has anaphylaxis w sesame. It's very stressful ESP when young. You'll find lots of good advice but my urgent recommendation, in addition to the extra pen, is to talk to Tricky to the extent he can express himself about the feeling he had when he was starting to feel sick and the name that feeling together. My son made the throat clutch gagging throat clearing noise to des rive the sound and named it 'sesame egg' after his allergies. We then spoke a lot about what sesame egg felt like and told that code word to all caters so the he could help us identify when he had the feeling and we could take action. Keep talking about it so he remembers the feeling. Try not to include the anxiety side of it of you can.

    This was so so helpful, especially because he coughs and itches generally and anaphylaxis doesn't necessarily start with hives as a warning - his went right to breathing and hoarse voice. Hives didn't come till after EpiPen took over.

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  41. This is such brilliant advice, Jilly, thank you so much! I've just had a big chat to him, which was met with many giggles on his part, but I'll keep going!

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  42. My son Curly (4yo) had an allergic reaction from a nut last year. We knew he was ok with peanuts, he's had peanuts and peanut butter before and so we thought he was good with any nuts. And then last year I bought some brownies from a popular patisserie. I wasn't sure which nuts were in them and i didn't ask because to me my son was ok with nuts. He found them in the fridge and asked for one and I let him have a piece. 15 minutes later he came to me saying he was hurting. His tongue was swollen and his lips were huge. He was rubbing his eyes which were getting red. I rushed him to the doctor, my hubby met us there. He got some anti-histamine and it went away. 

    On my way home I stopped at the shop and asked what nuts were in the brownies. The girl hesitated, thought for a second and said "Peanuts" but when I got home and looked through the brownies, they were walnuts only. I think they girl assumed I was going to buy and thought that saying peanuts would save me grief. 

    So we're staying from all nuts, even peanuts, for now and making sure we always have anti-histamine in the house. I used to suffer from allergy from artificial colourings and preservatives... my doctor fed me anti-histamine once a day for 12 months. It went away. (DO NOT DO THIS WITHOUT DOCTOR SAYING SO)

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  43. Far out. When your mum started crying I did too! What a horrific experience! So glad it turned out ok, sorry for the unavoidable worry you are going to have now. Don't beat yourself up about a thing. 

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  44. whiningattheworldMay 3, 2012 at 7:42 PM

    Very scary.
    I hope that you and Tricky are feeling better.
    Don't feel bad. I think the majority of people have ignored their instincts at some point in their lives and you acted based on the advice you had been given.
    Don't beat yourself up.

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  45. christiechildhood101May 3, 2012 at 8:05 PM

    I have tears, there is just so much for us (as mothers) to fear and so often we tell ourselves not to be silly, that it will be okay. I am just so glad that Tricky is okay and now that you know you can be well armed (and as he grows, help Tricky to be as well) to reduce the likelihood of future incidents xx

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  46. Daisy it was so scary, I've never seen doctors move that fast before.

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  47. It's really reassuring to hear that other people have waited not knowing what was happening, because I'm still feeling so bad about it. I am so worried about being labeled as an overprotective mum... I'm not sure what it stems from but it's probably to do with me having the most overprotective parents ever.

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  48. I contacted the allergist today and they said that testing of an allergy before the child has been exposed to it almost always gives a negative result - it's often on the second exposure that a reaction will occur. But NO ONE told me that so I took their "negative" as truth and acted accordingly.

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  49. Penny that's awful. Medicine is meant to help, it obviously didn't get the memo.

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  50. Nell this is awesome advice, thank you! I will go and get some antihistamine to keep with the EpiPen

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  51. Thank you, Eileen. Tricky actually did wake up with a cold today... I *knew* he was getting one the other night. So I kinda got it right :P

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  52. Thank you :) I must say it's thrown me quite a bit and today I had a giant woe is us moment in the shops as I searched for foods that didn't have tree nuts. Then I managed to snap myself out of it with the thought that it could be a LOT worse.

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  53. Oh god they sneak him cashews?! That's pathetic. I remember hearing someone order food a few years ago, they must have been on a first date, and they were asking for no nuts and the boyfriend said "you can pick them out, stop being so demanding". Even back then when I had experience I knew you didn't muck around with nut allergies!

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  54. I'm so glad she's grown out of her allergies Ms Mandie! I was desensitized to my allergies with weekly injections, but I don't think it can be done for severe ones unfortunately :(

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  55. Sending you both big squishy hugs Glow. We know tricky is going to be ok, because his mumma no doubt has spent all day researching and getting educated about this. But I just want to make sure Glow is going to be ok... and taking care of HERSELF as well. love and light beautiful. be kind to yourself. xoxox

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  56. I tend to not take the "just an allergy" sensitivities too seriously (because I have some and know they're more of a pain than a danger), but it was drilled in to me that if someone tells you they will have an anaphylaxis reaction that you do not take any chances, ever. Now, to teach tricky to read...

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  57. An allergist will actually tell you to keep giving peanuts so that the body keeps up it's tolerance levels - it's what they told me today on the phone because Tricky can eat peanuts without a problem. But right now my mind is screaming "NO NUTS EVER!!!"

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  58. Oh, Lee! I was being so brave until I saw her crumple. Well, if I'm honest I was *pretending* to be brave.

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  59. Today I contacted the allergy team that saw him initially and after telling them what happened they have said they'll change their procedures to make sure it's explained that a negative result doesn't necessarily mean anything.

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  60. whiningattheworldMay 3, 2012 at 8:54 PM

    Excellent news.

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  61. That's exactly it, Christie. That fear manifested a very sheltered childhood for me so I strive to be a realist to ensure Tricky can explore the world and learn without me hovering over him. But I'll be hovering over the food choices from now on, that's for sure x

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  62. OMG!!!! You poor baby! That's horrific.  Huge cuddles for you and Tricky. Huge cuddles...

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  63. Terrifying. Sammy had an allergic reaction to a wasp sting about 2 months ago. His breathing wasn't affected, fortunately (not nearly so bad as poor Tricky). But it took less than 3 minutes for him to be covered in hives, his entire hand, arm and up to his neck and jaw were horribly swollen (he was stung on the tip of his finger).  It took a week of antihistamines before his swelling or itching went down. His arm stayed hot the entire time.


    It makes me nervous - that was just his first exposure. I am already worried about next time and wondering why I was so determined to be calm and treat him myself. Maybe I ought to have taken him to a Dr and had him tested, to at least know if it has the potential to turn sinister. 
    Glad he's ok now. I'm sorry for the fright you must have had (God, "Fright". As though that can come even close to what you felt).

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  64. I have no advice but this post hit home with me. We had this happen to MissE. We had cold rock ice cream (no nuts) on the way home in the car she said her throat was sore. Not long after that she said she felt sick. Not long after that we were going to the hospital me regretting not calling the ambulance because she was weazing and couldnt wake her. She soon threw up over me and the entire waiting room.  We got told off by the nurse because she refused to have the antihistamine. "ill make her have it" not long later she gave up. MissE started to get better. We still have no idea what it was but im very paranoid about what she has now. Slowly shes had nearly everything she had that day. She has a mild contact allergy to a certain preservative but thats it. 
    Such a horrible thing to go through. Big hugs dont blame yourself x

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  65. Oh Glow. That's really bloody scary. I know you know you shouldn't blame yourself, but I also understand why you will for a while. I know that feeling of mother guilt all too well (also from not turning the light on in the night).

    Glad Tricky is ok. And now you're armed with information you can protect him xx

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  66. holy shit! how terrifying. and fucking tree nuts or traces of them seem to be in fucking everything. it is great that you are such an amazing cook. You'll be able to make all his muesli bars and snacks yourself. which is something, I guess. 
    sending love. I don't have any advice. 

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  67. Faaaaaaaaark, you poor thing, how very frightening. And so unnecessary. I've heard that people don't present with an allergic reaction to the first bee sting if they're allergic, it's the second that shows but never thought it would mean allergy tests were redundant. 

    Gut feeling is so powerful. I've ignored it once with my Mr 3 and we ended up in the hospital too. There's so much pressure not to be that over-protective Mum. We should be allowed to protect our children without fear of judgement.  

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  68. Holy shizen. That must have been so TERRIFYING. I'm sorry I don't have any advice for you, except this: don't beat yourself up. 

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  69. Oh this story gives me shivers. I'm so glad he is doing better. What a crazy turn of events, poor little ting! Don't you think they should have mentioned the ol' 'oh if he hasn't had it before this test is worthless' thing? Sounds like you did a great job, so nice to have the support of your parents. Have a hospital free weekend...

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  70. Oh, Glow...that so sucks. Just sucks! What a horrible and terrifying ordeal!  K-Bear is egg and nut allergic and it's a real bitch. He has 6 monthly skin prick tests. At the last test, we also had to get blood tests for him.
    He's slowly growing out of them but we're not banking on being in the clear just yet.
    We are paranoid parents at restaurants, with daycare centres, at birthday parties, with our relatives, when visiting friends and I don't care what anyone says.  Nut allergies - all allergies -  are friggin' scary.

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  71. Oh crap! If it's any consolation we've had so much 'viral asthma' that I do the same as you now. If it were anything else it would be a while before I realised. Thankfully you're ok.....

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  72. How frightening , you trust the professionals but they don't give you the disclaimer .
    I 've heard this same problem a few times ( and seen it in hospitals)
    Glad you acted quickly on your gut instincts

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  73. Oh really? I didn't know to continue giving. I should look into this a bit more. 

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  74. *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.
    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. 

    Hope that you & Tricky are doing well. xox

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  75. 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!

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  76. FUCKING HELL. Can't believe I missed this. 

    Oh Glow, sweetheart ... what a thing to go through!! What a scare - you poor things, all of you. I hope you're ok, that you've re-grouped.xxxxx

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  77. 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 :) xxx

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  78. The cuddles haven't stopped around here - they make everything a bit better :) x

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  79. 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 xxx

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  80. 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 :(

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  81. A week out from it and the self blame has diminished a bit... not entirely, but it'll get there I hope.

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  82. 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.

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  83. 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?

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  84. Thanks, Kylie. I have put on boxing gloves because bare knuckle beating might bruise :P

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  85. 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".
    Turns out our weekend wasn't hospital free... but that's another story :(

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  86. 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.

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  87. 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 x

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  88. I have such issues with trusting professionals... and the time I did it this happened. Sigh.

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  89. 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!

    Thanks so much Natalie x

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  90. Hindsight is 20/20... my current vision, not so good.

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  91. Re-grouped, fallen apart, and trying to re-group again. It's like a fucking merry go round... it ain't so merry xxx

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  92. I suffer from anaphylaxis myself so I'm right with you in giving it the big Fuck Off.
    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 .

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  93. 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.

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  94. 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.  

    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.

    Even though this resource is out of date, some product information would still be accurate 
    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.

    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.
    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.

    If you want to join a private facebook group, I have found this one to be extremely supportive 
    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.

    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.

    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.

    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. :/

    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.

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  95. I forgot to mention.  The may contain traces of nuts type warnings are currently NOT MANDATORY, they are purely voluntary.


    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.

    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.

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  96. 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.

    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.

    Thanks again :)

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  97. 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.  


    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).

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  98. Hey
    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.
    Have had two patients with anaphylaxis ever
    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.

    Anyway, I know others have said it, but DON'T you dare blame yourself at all.
    At the end of the day, YOU recognised the symptoms in time to get Tricky the right treatment BEFORE it was too late.
    the way I see it, you didn't make any mistake, you did the right thing just in time.

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  99. 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. x

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