Wednesday, August 22, 2012

Hope is the only thing more powerful than fear

My boy has been making his doctors scratch their heads of late. He's a riddle wrapped in a mystery inside an enigma... and I'm kinda excited because I HAVE A THEORY! You can call me Dr Glow.

A few months ago, we rushed Tricky to the hospital when he was struggling to breath and scratching at his body. They told us Tricks had an anaphylaxis reaction to something, more than likely cashew nuts (we'd just had chicken cashew nut).

He's been seeing the allergists at the hospital and has undergone a shed load of tests. OK so it's not really a shed load, it's only a few. But when you're using your full body weight to pin your screaming toddler down while someone pokes twelve needles in to him you tend to think all that effort was surely for more than a handful of bloody tests.

The results of these tests just aren't adding up and I have a theory. I've gone all CSI or Lorenzo's Oil or whatever and I'm hunting down this bastard that put my kid in hospital.

His skin prick test came back negative and it was declared a false negative. So a RAST test was ordered.

His RAST test ( radioallergosorbent test - big words!) came back with a high number for cashews (meaning anaphylaxis) and Allergist A told us to avoid not only the nut but traces of it and incidental contact. It meant having to ask my mothers group not to bring any "may contain" products in case any residue transferred from their children's hands to a toy, to Tricky to his mouth. Until he was old enough to know not to put anything in his mouth, or even touch his mouth without first washing his hands, this was how it was going to be. I was rather pissed off with the world, thinking he could end up in hospital just from learning how to share.


Then yesterday we got a very low RAST score. One that made Allergist B battle to try and not use the words "What the fuck?!".There are antibodies in his blood that react to cashew... but in theory, not enough for it to land him in hospital.

My brain has been going one million miles per hour since hearing this and has come up with an idea.

I'm wondering if maybe, just maybe, Tricky doesn't have a food allergy.

Writing those words makes my heart race and brings tears to my eyes. Because I could be right. And because I could be really wrong. I don't care that I could look like a dickhead, all I care about is my boy.

I think his first reaction, his "atypical anaphylaxis", might have been a serious asthma attack. He was given adrenaline in the emergency room - adrenaline reduces bronchial spasms and was the go-to treatment for asthma before Ventolin came on the scene. We went home after twelve hours and for the rest of the week he had a raspy cough and a minimal wheeze that we were told was to be expected after his throat swelling. We were back within the week with his first proper "asthma admission".

I think his second reaction, which was quite mild and was put down to a suspected trace exposure, was an asthma attack, too. It was just over a week after he'd had a major asthma attack - so major it required an ambulance. 

I think both attacks could have been brought on by something in the food, not necessarily cashews (a preservative? a colour?). I always need Ventolin after having anything with sulphur, including wine - which is why when I'm laughing after a few drinks I often end up having a coughing fit. I'm not allergic to it, I'm sensitive to it. I'm totally a sensitive gal, you see?

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And I even think the itching could have been an asthma related eczema flare and swelling due to him scratching so much. Every time I have asthma my neck and my back itch so badly I feel the need to ask complete strangers to help me scratch my back. My mum and my cousins have the same thing.

I want to believe this so much. SO MUCH. Part of me thinks I'm stupid and clutching at straws. Could two lots of emergency doctors have got it wrong? Could two allergists have gotten it wrong? They were going by what I said - that he'd eaten and then a short time later, couldn't breathe, was itchy and puffy. It looks like anaphylaxis... but what if it's not?

I don't want to spend the next two to three years before the standard food challenge test freaking out over every single thing he puts in his mouth if I don't have to. Allergist B agrees and Tricky will be admitted to hospital soon for a challenge where they'll feed him small amounts of cashews and watch him, with adrenaline and oxygen at the ready. Then we'll know for sure.

We've only walked this allergy path for a few months now and it might seem melodramatic but it's been really hard. Trying to marry the two worlds of the laid back "he'll be right" mama and becoming a helicopter parent the minute that food is around has been tough. I don't know how to be that person and I feel like I'm failing miserably. 

I know it's much more likely that it's me that has it wrong than an emergency room full of doctors and allergy specialists... but I can hope. And as they say, hope is the only thing more powerful than fear.

44 comments:

  1. Huge hugs. I had similar things with Mr N and pain in his legs. We finally got an answer and were able to fix the problem after about 3 years!


    It sounds like it could well be asthma, especially if you get similar symptoms. I hope they work out what it is.

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  2. whatever it is, I'm sending good thoughts to you and your sweet boy.

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  3. I spent over 10 years trying to determine what was making me sick. Finally, I found I had a number of food chemical intolerances. It may be worth your while to check out your hospitals in WA. I went to the allergy and intolerance unit at RPA in NSW but I am sure they would have something equivalent in WA.
    Either way asthma, allergy or intolerance keep pushing until you see an improvement. Mine was too easily shrugged off and it was my perseverance that found the solution in the end.

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  4. Kelley @ magnetoboldtooAugust 22, 2012 at 6:15 PM

    hoping and hoping and hoping that you are right. Asthma sucks syphillitic donkey dongas but way better than anaphylaxis. xx

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  5. I think that you should follow your gut... Explore and explore and ask ask ask... S
    Trust your gut. X

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  6. Good luck with sorting it out. I wouldn't just listen to what the doctors say, you know him best. You are the only constant who listens to a variety of experts, but then try to tie it together...

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  7. Natalie - Sanity Or BustAugust 22, 2012 at 7:12 PM

    I hope that whatever happens you have a definite answer.

    Big loves for you and Tricky xx

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  8. Thanks Natalie. I'll become a super sleuth and find out! xxx

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  9. Thank you, Lou Lou. You're so right, I'm the only one who hears all the different opinions because none of the doctors we've ever dealt with have ever read his file before seeing him. x

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  10. I have so many questions to ask them, just waiting for our new appointment date to be sent to us. The oral challenge is pretty definitive, so we'll know either way then.

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  11. Oh wow, Becc, that's a long time and yet I've heard stories like this before. People being lumped in to the "too hard" basket and having to do all the work themselves to finally find out what is wrong.
    He's under the care of the Childhood Allergy Institute and the Anaphylaxis Clinic at the major hospital. But we'll go private for a second opinion if the next lot of tests are inconclusive.
    Thank you so much x

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  12. Thank you so much, Tiff. Your girl is never far from our thoughts x

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  13. So good to hear it's fixed but GAH 3 years to figure it out must have been frustrating! x

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  14. Hoping you are right. My 12yr old was diagosed peanut anaphylactic at 18 mo, unfortunately, it now includes intolerances to other nuts as well. My theories involve a chicken pox episode and 12 mo immunisations conspiracies. The upside has been a diet with very little processed foods, and there is so much more variety of foods available now for us. A life of strict avoidance is achievable. Whenever he sees a doctor, my son is always asked whether he has asthma as well, thankfully he doesn't. On the other hand my 16 yr old aquatic loving daughter says her exposure to chlorine has caused her to develop asthma- you cant win can you! One step and meal at a time.

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  15. Hi love. The mama is almost always right, we have the innate ability to detect the bullshit when it comes to our kids. We beat the doctors best guesses 99% of the time, in my own experience. Trust it and go with it. See where the journey goes. Doctors get it wrong a lot. Always let them know your thoughts. Speak out. Push them. Gawd I'm a skeptical bitch....Good luck. Big love to you and tricky x

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  16. Makes sense to me clever lady! Fingers crossed it is the lesser of the 2 evils x

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  17. Here's hoping you're right too. And that whatever transpires they give you the best information possible for keeping your little fella healthy.

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  18. flyingdrunkenmonkeyAugust 22, 2012 at 8:32 PM

    I know how hard it has been for you and I really hope you have an answer soon xxxx

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  19. Good luck, Glow. I hope you the challenge gives you a definitive answer.

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  20. I like your thinking!
    Trust your gut, it's telling you something. And from one allergy mum to another, I really hope what you're thinking is right. Food allergies are a lot more of a pain than people realise. Especially when they're young. Greenie is only just now starting to understand he has to ask about foods and check with me first if he's not sure i.e. he's had it before.

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  21. Keeping my fingers crossed for you that you're right!

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  22. Maternal instinct is a powerful thing. Trust your gut, and take your opinions and shout them to the Doctors. The worst that can happen is that you're wrong, and the doctors would prove that to you if so. The best that can happen is that you're right, and you can relieve yourself of the allergy drama. But you should never hide your maternal instinct, a mother always knows x

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  23. I agree with Kelly. Trust your maternal instincts. Doctors have a lot of medical knowledge, but they only see your child for brief visits. You may not have their knowledge, but you birthed him, nursed him, held him every day of his life. You know him in a way no doctor ever can and your instincts work 24/7 to protect him.

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  24. That's an interesting theory. I don't know anything about asthma, but my Mum is asthmatic and can't eat tomato sauce without having a coughing/choking fit. I hope you find the answer soon! (and may the odds be ever in your favor)

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  25. You know your son and your family's medical history better than the doctors. Hopefully the tests will prove you right and you can stop second-guessing yourself and them. Good luck :-)

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  26. I hope that they can give you a more definite answer soon. But I agree ... go with your gut. Make them consider it as a possibility and investigate it. Worst case ... if gives you some peace of mind .. best case it helps solve the problem ... Both sound like positive outcomes.

    Good Luck!

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  27. I agree, Bronwyn, either way it's going to be positive. Thank you :)

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  28. I have everything crossed. EVERYTHING.

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  29. Hunger Games FTW! A lot of tomato sauces have MSG in them which heaps of asthmatics are sensitive to. I used to be but have grown out of that :)

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  30. The last time I ignored that instinct he ended up in hospital, so I've learned first hand just how strong it is. Thank you Kelly x

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  31. Thanks K. I've never had a good relationship with medical professionals, mainly for that reason. I'm too skeptical to trust them but too gutless to stand up to them. I will have to learn!

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  32. Thanks, Jen. It would be so awesome.

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  33. They are a PITA for sure. I think it will be a lot easier once he's old enough & can understand a lot more. Right now he just thinks "WHY CAN'T I HAVE ANY CAKE?! GIVE IT TO MEEEEEEEEEEEE"

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  34. Thank you! Either way, we'll know.

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  35. Thanks Cassie. Fingers crossed, hey? x

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  36. Yes, that's the next hurdle. Information that isn't conflicting would be ace.

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  37. Taryn I love you! Thank you so much for this. I'm skeptical too and have very little faith in the medical community - I've had good doctors but they tend to not be as memorable as the horrid ones, so in my mind it's quite unfavourably balanced.

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  38. One step and meal at a time is a great philosophy, Luise! The lack of processed foods is definitely an upside to the allergy lifestyle and I'm loving seeing all the new allergy friendly foods coming out so that there is still some convenience foods for when we just can't be bothered to cook! It's such a rapidly growing market unfortunately.

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  39. I hope they can solve this and you can stop panicking about lil Tricky. He's such a lil trooper.

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  40. Poor little darling and how utterly frightening for you. I hope you get your definitive answer soon, after all, knowledge is power. In the mean time, keep safe little Tricky :-)

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  41. Thanks hon. Hope you & your mum are well xxx

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  42. Fingers crossed. Either way, you're right. Knowing will give us a way forward x

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