Saturday, February 2, 2013

anaphylaxis sucks

I was thinking today about the things I need to get organised for the boys going back to school next week and realised that in addition to the stationery and labelling clothes, there are a few things that not many other mums will be having to do.  The main one is that I've just ordered a new epipen from the allergy pharmacy.  Then I need to update and print out his anaphylaxis action plan and package it up with a new asthma inhaler and antihistamine to take to school.  We have one kit for school and one for home so that (in theory) there will always be one nearby when we need it.

The worst thing that happened on our holiday was that on R's 7th birthday, he went for a swim at the beach and came home coughing, wheezing and his face started swelling up. He was having a full blown anaphylactic allergic reaction. We injected  him with adrenaline (using his epipen) and called an ambulance. That may sound straight forward but it was the scariest thing B & I have ever experienced. It's been a month and I still well up with tears thinking about it, I cried last night explaining it to my cousins.



I haven't blogged this yet as I'm still feeling quite fragile about the whole thing.  I do feel that I need to share our experience though, although part of me wishes it away... like if I don't blog it then it didn't really happen.  I think a lot of people don't get how serious allergies can be and how quickly things can go wrong.


Knowing what was going on and what the consequences were, was terrifying. You see those smiles in the photo above? They're not happy smiles. They're the kind of smile where you don't show your teeth, your lips are too tight and your eyes quiver. Your child could be dying in front of you and you don't want them to worry, so you smile to make them feel safe. R knew. He knew and was giving that smile back to us.

Where we were staying was quite remote.  Having said that the ambulance driver made the 30 minute winding road journey in 20 minutes!  The adrenaline had already worked it's magic though and he was able to breathe again quite quickly.  R and I went on a two hour ambulance drive to the nearest hospital where we stayed a while to make sure that he didn't have a secondary reaction.  This was only the second time we have had to administer adrenalin in the 6 years since he was diagnosed with serious allergy to cows milk protein (dairy).

The bizarre thing is that in this instance we don't know what he was reacting too. All the food he'd eaten that day was food he'd had before without reacting to.  There were heaps of jelly fish on the beach and it seems that they could have been to blame.  The other option that the immunology specialist mentioned is something called "exercise induced anaphylaxis" which can come on after someone eats wheat and then exercises.  It's all very strange and we feel a little more nervous about the whole thing. We have to make sure that the epipen goes everywhere with him now.  Usually we didn't take it with us for a stroll on the beach or to the pool as we thought that if he wasn't eating he'd be fine.

Now we're not so sure.

15 comments:

  1. Oh Meg what an awful experience. So glad R recovered.
    Hugs to you x

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  2. nanarobyn1:00 PM

    I am so proud of this young man. He handles his health issues so well and adult like, a lot to do with his parents I know. I have never once heard him say "it's not fair I can't have....." when all children round him are eating icecreams, chocolate etc. He handled this emergency brilliantly, better than the rest of us, and as usual very appreciative of what everyone did for him. Big hugs, love you all so much XOXOXOXO

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  3. Oh Meg - that must have been so scary, especially being so remote and not knowing what set it off (and on his birthday too - poor boy). Life just doesnt get any easier with Allergy Kids huh.

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  4. yikes You poor thing!

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  5. Oh jeepers, very scary, must have been a relief to see that ambulance after a 20 minute wait!! What a brave little guy Reuben is. And you guys.

    Just saw your comments on my blog...definitely going to try the food coloring with the dinosaurs and then the salt :). And yes I did make the duvet covers etc. I am starting a business from home, called Love From Friday, making kids bed linen and accessories. These are my first creations. Thanks for your feedback. xx

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  6. Grandpa1:37 PM

    He's a brave wee man with a wonderful spirit and loving nature - Grandpa loves him ( and all his grandchildren ) very much, L & C Grandpa xxooxx

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  7. Anonymous6:07 PM

    I found your blog last year sometime via the Allergy NZ Facebook group (you posted a link to a recipe for dairy-free ice-cream, I think) and have checked back from time to time to enjoy what cool things your wonderful creative family have been up to. I am so sorry to read this post. My son is nine, and severely allergic to dairy, egg and peanuts. We've carried EpiPens faithfully for years now, and not had to use one, but anaphylaxis is a fear never far from my mind. Just wanted to send a hug - it must have been so scary, especially as it wasn't a food-induced scenario. Those twenty minutes waiting for an ambulance must have been the longest of your life. We live rurally on the Coromandel and I don't miss too much about living in Auckland, but proximity to medical attention is one thing that does worry me here. Anyway, hope that you're all recovering from the shock of the unwanted birthday surprise.
    Cara xx (Being a technophobe, I've never commented on a blog before and am not completely sure you'll ever see this... a bit confused by the "select profile" thing I'm seeing below! Here's hoping...)

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  8. Oh Meg! I'm so sorry that you all, in particular R, had to go through all of that! And I truly hope you never have to again!! I completely understand how difficult it is to talk trhough a traumatic experience that happened to your child!

    You've just reminded me that I need to get the kids asthma packs set up and ready for school!!

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  9. Gentle hugs from here too. Seeing the smiles made me tear up just thinking about it. You are both so brave. I think you are very special the way you share and help the rest of us get a better understanding of what life is like with an allergy.

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  10. Nanna and Poppa7:00 AM

    Dearest Megan, our thoughts were with you and Brenton experiencing an attack. We felt so helpless when the first episode happened and our hearts go out to you. Wish we could give R a hug right now, he is such a brave wee man. Hugs to all of you. Hang in there and hope that R grows out of such violent reactions. Nana & Poppa xx

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  11. Thanks everyone for all the love. He's totally fine now of course :o) Hi Cara too. We were staying in Opito Bay near Whitianga and were taken to Thames hospital.

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  12. Oh no, that is so terrifying.
    I can understand why you are feeling so fragile about it, it must have been so frightening.
    Your poor wee boy, and poor you

    Something happened at the end of our holiday that I haven't shared because it was a terrifying experience for us and I have been having regular panic attacks since.

    Much love to you guys

    Hugs xx

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  13. Sarah7:04 AM

    Oh Megs, how awful! He's such a brave little man who handles all of this really well which is a testament to you & B being great parents. You can't protect him from this, but you can teach him how to deal with it in a mature, sensible & constructive way, which is what you have done. *Big hugs* Catch up soon! SMx

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  14. Oh my gosh. That SUCKS alright!!!
    Scary scary scary.
    Those tight smiles brought tears to my eyes.
    Love you guys loads.
    xx

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  15. Oh my gosh Meg
    I understand I really do
    Allergies suck and anaphylactic allergies suck big
    My allergy is bees
    Huge love and hugs xxxxxxx

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so lovely to hear from you xx