Friday, May 18, 2012

Things I know about allergy testing and anaphylaxis

Don't panic, I'm not going to bore you with allergy crap all the time, I promise this won't become an allergy blog, just like it didn't become a Craniosynostosis blog or a breastfeeding blog or a food blog. It will remain a dribble shit blog bit of everything blog.

But, as a new 'allergy parent' I'm doing my bit for Food Allergy Awareness Week and linking up with Things I Know.

Tricky's recent trip to hospital with an anaphylaxis reaction to cashews got me thinking how little I really know about food allergies and testing, and how much I thought I knew after very poor education by the people in charge of his tests.

These are the Things I Know:


I know that allergy testing is bullshit if the child hasn't been exposed to the allergen previously.

I know that a negative result on an allergy test does not mean your child will not develop an allergy at some point.

I know that when the immunologist in charge of an entire allergy study tells you "No cashew or peanut allergy, so no need to worry" they mean "no need to worry right at this very moment, if your child eats a cashew in a year they may nearly die, sucks to be you".

I know that some medical professionals assume your knowledge base is the same as theirs and don't explain things as well as they should.

I know that if your child has a positive reaction to one nut, but has been eating other nuts without issue, you're meant to continue feeding it to them to reduce the likelihood of an allergy developing.

I know that going from a relaxed, free range parent with a "he'll be fine" attitude to a severe allergy parent is a very steep learning curve and will involve moments of "umm, did you check what's in that?" after you've fed it to your kid.

I know that when your child rubs his eyes and they look a teeny tiny bit puffy you will freak out and make a mental list of everything they've eaten then watch him like a hawk, EpiPen at the ready, only to realize he's actually just tired because it's bed time.

I know that when your partner doesn't take the bag with the Epi Pen in it when he goes out that you will get very, very angry, then realize you're both learning and it isn't second nature yet and feel bad that you got upset.

I know that the moment you become an allergy parent it consumes every waking hour while you research and try not to get overwhelmed by it all and become that boring as bat shit person who can only talk about her kid's damn allergy.

I know that I'm bored of me talking about allergies already.

What do you know?

36 comments:

  1. I know I am in the same boat as you and it gets easier xx

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  2. alexandriaemporiumMay 18, 2012 at 9:25 AM

    Hi Glowless, I know how you feel.  I have been an anaphylaxis allergy mum for nearly 9 years now (my son had his first anaphylaxis reaction at his 1st birthday party and we ended up in two hospitals in Melbourne that night! If you can imagine that!) It does get a bit less anxious, a bit, but the main thing is to just manage it really really well.  There is no such thing as a risk free environment and you should have to be prepared to jump into action if need be and don't ever trust anyone else to feed your child no matter how much they profess.  Love and light.  Mxx

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  3. I know that it doesn't take long for it to become second nature to look at every single label on every single food. I know that 'may contain traces of' and 'made on equipment that also processes' are some of the most annoying words ever, but I'm sure glad they are a legal requirement nowadays. I know that sometimes Allergy Awareness type posts may seem boring but will help some freaked-out parents out there. I know it can be scary and paranoia-inducing but soon it just becomes everyday life.

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  4. I know that it's not boring to read about allergies because when it's someone's reality it's so very, bloody serious that it affects everyone. My kids don't have allergies but they go to childcare and kinder and will go to school... The more educated everyone is, the better.

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  5. The epipen is the bane of my existence, I've forgotten it a couple of times and feel like the worst parent in the world when that happens.

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  6. I guess some might call me the 'boring as bat shit parent who only talks about her child's allergies' ?


    Those type of comments irk me.  The longer you have lived it, the more you will talk about it, as it's all about raising awareness and helping reduce the risk to our darling children.

    LIke someone else said, it does become second nature, but when things like daycare/kindy/school come up, it can feel like you are starting back at the beginning education wise.

    I think what annoys me most, are the ignorant people who don't care even a little bit even after talking to them about it.  What, it doesn't bother them that a person may die because of their severe life threatening allergy?
    And also the parents who insist on putting so much responsibility on others and expect others to provide for their allergic child.  This is insane, and most parents i know prepare all of their children's food and would never ask someone else to do so and there is always that doubt in your mind, is it completely safe.

    We are our children's voice and when you start feeling more comfortable about it you will come to realise just how much you will need to use that voice to help protect your child.

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  7. I know that when you send Tricky to school you need to find one that has a strict policy of no nuts, or whatever else he may be allergic to. 

    As a teacher I also unfortunately know some parents don't give a shit unless its their kid, so even though a school may politely ask for no nuts, unless it is a policy poor Tricky could very well come in contact with his allergens.  I taught computers for a while and one poor student kept having reactions after touching the keyboard and mouse.  Someone obviously had nutella or something of the like for lunch, and it may have been earlier in the week, but that is all it took. 

    I know that the world needs to be educated that anaphylaxis does not mean get a rash but actually means life threatening COULD DIE.

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  8. P.S. I know that you are an amazing mum just by reading your blog and that you will work it all out! xoxo

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  9. Glow, I'm not an allergy-parent (yet! touch wood) but I just want to say... this is your blog, this is a huge thing in your life right now, and I totally don't mind reading about it while you process. Also, I like learning things like this. My kids will be mates with kids like Tricky, the more I can learn to be able to welcome them into our home and family life the better. So thanks! 

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  10. ugh you poor thing :(

    Hopefully you'll get used to it?

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  11. We just found out one of our children has a peanut allergy. Although we were told it wasn't life threatening, it is still scary and has changed how we live.  Recently I was having dinner with one of my student's family and his father happens to be a physician.  While discussing my child's allergies, he told me that if a child has an aversion to a particular food, it is most likely because they have an allergy to it.  Looking back, my child never liked peanut butter as a small child.  She also doesn't care for shellfish, but will eat other fish.  Interesting how sometimes the human body tells us long before the doctor does!  Oh, and I'm still working on that epi-pen thing as well!  Good luck!  

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  12. I know that you and Tricky will be fine, it's scarey now but will soon be just a normal part of your life. My sister has anaphylaxis to egg and all nuts, her boys to egg and one to nuts. I've grown up living in a nut and egg free home since I was a toddler. And I have no problem with you talking about it, if it helps you and raises awareness it can only be a good thing xxoo

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  13. I have emailed you :) I need someone to teach me how to steer this bloody thing!

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  14. Wow what timing to have a first reaction - that must have been so horrible to go from such a high to such a low.
    Thank you for the advice, it is very much appreciated x

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  15. I feel so paranoid, Alana, I can't wait for that second nature part to kick in!!

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  16. Your comment has given me a much needed confidence boost, Amy, thank you. I was so worried of boring people with my conversations... wow, how bloody stupid and totally vain of me! I'm talking about my son's life and you're so right, I have to be his voice.

    I've found it quite hard to talk to my friends recently because this has been so big in my world, quite literally turned everything upside down, that at the moment it's all I can talk about and I feel like I'm a broken record. It's the same feeling I got when I first had Tricky and I found all my conversations revolved around him and his milestones.

    I process things by talking and writing about them, so for the time being I suppose they'll have to get used to it!

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  17. Oh wow, it's amazing how sensitive some of these kids can be! From the keyboard and mouse? How awful!
    I've only had dealings with friends kids who have sensitivities and mild allergies, where the rule was "try not to bring xyz and if you do, don't give it to Timmy". This is a completely different ball game and I'm dreading coming up against the "oh you're over protective" types because I might not be able to hold my tongue.

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  18. Thank you :) I'm just really conscious that people go to certain spaces for specific content, and this is the fourth time I've written about this in two weeks!

    I never thought of it as a way to let others know about their kids' future friends and classmates... that's made me feel much better :)

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  19. I dun wanna! :( *throws tantrum*

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  20. That's so interesting! I have never liked seafood and only in the last year when I was experimenting with new foods and flavours did I really try it properly and realized I was allergic to a lot of it!

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  21. Cheers, Leanne. Writing about things is how I process them. I think an egg allergy would be tough... all I can think about is no cakes!

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  22. Map Guy was distraught when he realized :(

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  23. This makes me feel better, thank you!

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  24. It always amazed me how the mums in my mum's group managed with allergies. We had one boy who was wheat, dairy, egg and nut free. And yet we still managed amazing birthday cakes! He has grown out of a lot of his allergies, but the juggle she must have gone through! Not to mention the eczema and asthma that tends to go along with these things. 

    Allergy mums, I take my hat off to you!

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  25. I have NO idea how the parents with multi allergy kids do it! In my mothers' group there is a girl with a dairy sensitivity, so she's had standard birthday cakes etc and just put up with an upset tummy and a rash mouth. For cake, I think I'd do the same!!! :P

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  26. Hopefully you will never have to find out.  It is difficult the more things you have to avoid.


    My daughter has to avoid gluten, cocoa, cows milk, peas, whiting, eggs, nuts, but only the nuts are the life threatening one (and gluten while not life threatening is a serious one due to complications that may come with prolonged exposure......she has coeliac disease).

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  27. Linking in from TIK - sending lots of love, hugs and positive energy as you travel this road.  I know that it isn't easy but as you learn more it will become easier.
    Me

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  28. I know that Tricky has the best mum ever. You and Mapguy would move heaven and earth for your son. You are the best. I would be overly cautious ..no, more than that paranoid until…until some time passes without incident..but then again..Oh, I just saw Bianca's comment, so I hope that is reassuring.
    Love D xx

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  29. I know that I should ignore friends and in laws when they claim "He'll get over it, every child does" FFS people need to STFU (sorry, ranting!) 

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  30. The second nature thing kicks in sooner than you think and your little one will become well versed in the whole thing. My little 9 year old is so diligent with his nut allergy. He knows how serious it is and always does the Epipen check before we leave the house.  His attention to product labels impresses me so much. He's caught me out a few times, bringing to my attention that I was offering him something with traces of nuts in it! Teach him well. Once you change your home habits and the pantry, it will become second nature and just become your way of life. I keep reminding my little one, when he has to miss on a birthday cake or some treat, that at least he's not having to stick insulin needles in himself 3 times a day. Best wishes, A-M xx

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  31. I know that some allergists are arrogant.  I took Kass as a little one to be tested as she was bitten by an ant and half her face swelled up within 24 hours.  The allergist did the skin prick testing and apparently she's not allergic to anything.  So off I go on my merry way trusting the dr.   Then after having a paediatrician say to me on numerous occasions she is a very allergic looking child and if he was me he would get her retested, I took her back to said allergist and was greeted with a 'What are you doing here again?  I saw her and she's fine.'  He reluctantly did more skin prick tests and again she showed nothing and he huffed and puffed on about how allergies just don't develop willy nilly.

    Gabriel was also tested by the same allergist and showed nothing.  Recently his ENT has suggested that he be tested for allergies as he has severe allergic rhinitis and shows common signs of some form of allergy.  
    Anyway,  this has turned into a rant.  Thankfully neither of my kids have had anaphylaxis and I think my lucky stars for that.

    I also know (as a teacher) that some parents can be right arses about allergies too.  They have total disregard for the safety of other people's children with allergies and consistently send in banned foods.

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  32. Thank you, Denyse :) I can't wait to speak with Bianca, I have no experience with this and it will be so good to speak to someone who has been there, done that!

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  33. I don't know how I will ignore things like that - I know it's not very common to outgrow such severe allergies (smaller sensitivities, sure).

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  34. That's awesome, A-M. We've taught Tricky to say "no nuts" even though he's not entirely sure what it means... I hope he's as diligent as your little guy when he's older x

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  35. Gosh this is me... after three children with minimal issues... the fourth was a shock with his anaphylaxis to egg and strawberries!  

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