26 June 2012

May today bring answers - updated Tues pm

File:Signs and symptoms of anaphylaxis.png


Three times since May 7th I have been in an ambulance. The first reaction was in the middle of the night with me initially thinking it was my heart. I won't lie, that night was pretty scary. Medical conjecture was an insect had bitten me but no bite mark could be found. We agreed I'd carry an EpiPen and emergency kit and if it ever happened again I'd be tested. One month later on June 6th, at school while in the courtyard, the symptoms returned full force. EpiPen used, 911 called, transport to the ER and another 5 hours being observed.  An appointment made for testing. Five days later at home, late morning and the symptoms start up. Really not wanting to do the whole 911/ambulance thing again I decided to drive to Urgent Care near the house and let them handle it. Ugh, they called the EMTs and I got to ride once again to the ER. Consensus at this point is that the third attack was not a new one but a biphasic anaphylaxis, a continuation of the June 6th one. I was being tapered off the steroids and antihistamines and evidently had gone low enough for the attack to break through @@ So I've been on a "maintenance" dose of both meds until last Thursday. Every day I felt the symptoms but at "controllable" or "maintainable" levels. Going off the meds kinda freaked me out but I know I can't stay on steroids. We do have a dr approved plan in place, if a reaction starts I monitor it, if needed take Benedryl then have someone take me to the ER to just sit in the waiting room until I know I need medical attention. Sounds dicey but really I will be in close proximity to the care I might need but by not registering I don't have to stay 5 hours if not needed.  Unfortunately Saturday night I had a pretty strong reaction so took 50 mg of Benedryl and went and sat in the ER to determine if I really needed the EPIpen. In truth, it was a pretty intense reaction and I wavered about self injecting but ultimately after an hour I was much better and Stephen and I went home. The allergist knows I had to take meds and said they will have to do a histamine challenge before the testing but hopefully we can move forward.  This morning I am being tested and I am praying that the allergen can be identified. I would be ecstatic of it was identified AND something I can control but I will be thankful for identification. My attacks occurred under very different circumstances, I have been told there is a likelihood they may not figure this out.  The cause remains unknown in 32-50% of cases, referred to as "idiopathic anaphylaxis".  I have too many times in my life managed to be in the 1-2% of people something can occur with so my hopes are a bit dulled by that stat.


Tuesday afternoon update: The skin tests were not done since the antihistamine could have compromised the results plus he thought it was pointless. He had blood (6 vials!!) taken for testing of food allergies. He thinks he knows what it is but can't be sure until we get the results next Tuesday. Although it's a toughie, I have persistently prayed that it be identifiable and I would be thankful. So if the tests are conclusive there will be some pretty big changes but I will lift praises. Thanks so much for ya'lls prayers and concerns!

15 comments:

  1. Oh Beverly, my heart goes out to you. What an awful predicament to be in. We know so much about medical science, but there is so much we don't know. I'm praying that they figure something out for you. And soon.
    Hugs
    Rinda

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  2. hope you find an answer... I remember the first time a wasp stung me, it's a pretty scary experience when you don't know what's going on.

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  3. Bev, I'm stunned to read this and I'm very much hoping that you get the answers you need today. Gosh, you have been having a scary time of it - please do let us know how you get on. I'll be thinking of you today

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  4. Bev, I'm so sorry to read this. I know how scary this can be. My son has a life-threatening peanut allergy and it's the scares thing to witness. The allergy testing can be long and frustrating. It took us years to find out he was also allergic to corn. They are making so many remarkable discoveries every year, so even if you don't get an answer now don't give up hope. My thoughts and prayers are with you. I hope the testing goes well.

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  5. Beverly, praying you get some answers today...I hadn't realised you had had so many attacks in such a short space of time..let us know how you get on
    Alison xx

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  6. Hope everything goes OK. Thinking about you and hugs from over here xx

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  7. Oh Beverly! Not again!!! I'm praying for an answer soon.
    Hugs,
    Ann

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  8. Beverly this is distressing news to read, it must be so frightening to be living through all these tests and the uncertainty of the results. I hope the allergen is easily identified and that you can put some treament and lifestyle changes into place very soon.

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  9. Oh my gosh, Beverly. This is so scarey! I am wishing, praying, keeping my fingers crossed that you have answers very soon, and that whatever this is will be soon resolved. I'll be thinking of you, dear friend!!! xo

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  10. It sounds positive that the Dr thinks he knows what it is..hopefully he will be proved right and you will be able to make the necessary adjustments to your lifestyle!
    Alison xx

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  11. I will be thinking of you while you are waiting for your results. The "Sweet One" has taught both of us so much about food allergies and reading labels, and lifestlye changes...this will just be a new chapter in your life.

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  12. Goodness Beverly, that must be so scary. I hope a concrete reason is found for you and you can adjust things accordingly. Sending you love xx

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  13. Beverly I am sorry to hear of your health scare and I hope you will find some answers soon. Allergies can be very tricky!

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  14. Oh Beverly, I'm just getting caught up on some blog reading. I am standing with you in prayer for an identifiable cause & remedy!

    I've also been wondering how your sister & parents are doing?

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  15. I really hope that they can identify something as I know all too well how frustrating it is to be told 'we don't know why this happened'. The symptoms you get are just so scary and I'm really sorry to hear you are going through all this at the moment. Keep us informed, and try to stay out of that ER!

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