Friday, December 7, 2012

Coconut Trial - Follow Up

As I mentioned in my original post, I feel I need to explain a little more of the situation, because some expressed concern over the fact that I did this food trial at home.  I know this is my fault, because I didn't fully explain the back-story, and somehow was assuming that (1) you could all read my mind (silly me!) and (2) you had been following my blog from the beginning.  I apologize for that, because I should know better and new readers (hopefully) come along, every day.  I was caught up in the excitement of having a new food available for my daughter and wanted to share that news, and forgot about the greater scope of things, for a moment.  For that I am sorry, but I am here to fill in the gaps.  It is also my fault, because I wrote:
So, after having the allergist tell me, again, at my daughter's 4-year appointment, to go ahead and try coconut or sesame, at home (which I still find surprising, but OK!), I decided to try coconut.   
There's me saying, right there, that even I think I should not be doing this trial at home!  I left out so much of the story, and it wasn't until I saw my post through someone else's eyes that I realized that.  The part I was surprised about, mostly, was that she wanted me to test sesame at home, because her blood test value was 15.5, which was a little too high for my comfort level.  Here is some of the information that I left out of the story, from the decision-making process:
  • Please note, this was a food trial and not a food challenge.  What's the difference? Well, to me, a food trial is when you try a new food, that you've never eaten before, that you have no real expectation of an anaphylactic reaction.  (The most I expected was a delayed eczema rash, which is why I was avoiding quite a few of these foods, all along, in the first place.)  A food challenge is when you have a documented food allergy, say a history of anaphylactic reactions, either with or without skin/blood test confirmation, and you are seeking to challenge that allergy with the food, to see if the allergy still exists.  Now, I understand that a food challenge is also done when you have just a blood test result and you want to add the confirmation of the oral food challenge to bring the 2 pieces together to form a true food allergy diagnosis.  However, usually someone would have tested for the food item based upon an initial suspicion, based upon an observed past reaction.  I made the mistake (yes, I will have yet another post spinning off from this, where I now feel that some of the blood testing I did was a mistake) of testing foods that I had no need to be testing.  I tested foods my daughter had never eaten, and I had no reason to suspect an anaphylactic reaction.  So, I really should not even have a blood test value for coconut in my hands.    
  • However, given that I did have a blood test value for coconut, I compared it against the thresholds for the likelihood of a true allergy.  Her value was 5.89 and the cutoff for egg is 7, 14 for peanut and 15 for milk.  Given that my daughter's confirmed allergies, for which we've been to the ER, have values of 28 and 50+, a value of 5.89 did not seem that high.  Lately, I have been dealing with excessive fears, and have been working on overcoming them.  I feel I have become too restrictive in limiting her diet.  I believe that I am absolutely appropriate with the level of vigilance I have around her peanut, egg, milk, flax and mustard allergies, because I have seen their effects (or have state-of-the-art component testing results for her peanut allergy), but for those with low test values, I am finding they are not anaphylaxis risks, and I need to loosen up on those, because she is restricted enough, as it is.
  • Also, a research study showed "there is no evidence of increased coconut allergy in children allergic to tree nuts or peanuts."
  • This is a paraphrasing of a conversation I had with the allergist:  
    • Me: I want to trial coconut, oats, sesame...
    • Allergist:  Looking at her blood test values, I think you can do these, safely, at home.
    • Me: Are you sure?  That makes me nervous.  I mean, the coconut and oats don't, but what about sesame?  Don't you think 15.5 is a little high?
    • Allergist:  This is why we don't like for people to test a wide assortment of foods [I had tested these with another allergist], because you can test a long list of foods and get positive results that don't mean anything.  You could have a moderately positive value and eat the food just fine.
    • Me:  Yes, but conversely, you could have a low test value and still have a reaction.
    • Allergist: True, but then you're never going to know with any food and the truth is you are just going to have to try new foods with her some day, that is just the way it is, and if you want to trial every single food, here in the office, you will be in here every day.  I think the risk is low, but if for some reason something happens, you know what to do.  You know the treatment protocol, how to administer epinephrine, you are prepared to deal with it.  
  • At first, I thought that was pretty crazy, but after I thought about it some more, I figured she was right.  I am on my own on a daily basis.  I cannot run down to the allergist's office every time I want to try a new food.  For example, I wanted to try cauliflower.  Was I supposed to run out and get a blood test, first?  No, I just had to give it a try.  I tried broccoli, first, and it gave her an eczema flare, later that night.  Trial and error.  I am not new to this and need to stop worrying like this is the great unknown.  Not every food is as volatile as a peanut.  These foods (though I will probably still ask to do sesame in her office - it's a seed and the value is over 15) are not high risk and I am just as prepared to deal with the fallout as the doctor's office.  I have 5 EpiPens in this house, antihistamines, asthma medications, etc.  I am down the street from Fire/Police/EMS.  I also truly was not expecting a major reaction, though my irrational nerves sure like to shake as if it was a possibility.  The rational part of me knew this was a safe and reasonable trial, otherwise I would not have been proceeding.
  • I think I just got so used to dealing with peanuts, eggs, milk, etc., and I lost sight of the fact that not every new food is dangerous.  Even though I know full well that any person can have an anaphylactic allergy to any food, even rice, I don't need to start out with the expectation that every new food is a high anaphylaxis risk.  I need to be prepared for reactions, of course, at all times, but I still need to keep introducing foods, otherwise her nutritional options will remain very limited.  
  • So, I just wanted to explain that a lot of thought, analysis, research and consultation went into this decision and this was not a "food challenge" of an existing food allergy done at home, which should never be attempted.  If your child has a peanut allergy, for example, don't try giving them a tiny piece of peanut to "see if they still have a peanut allergy".  This scenario was nothing like that and I apologize if there was any confusion.  If you have any questions or concerns, consult a board certified allergist.  

No comments:

Post a Comment