Underreported Allergic Reactions in the ER

This has been gnawing at me for quite a long time, so I need to get this post out on "paper".  I wrote this post 8 months ago, about figuring out the link between my daughter's frequent ear infections and bouts of bronchitis, with her food allergies.  The incident with the flax seed that I mentioned has caused me quite a bit of mental anguish, as I've gone over the events of that day and night, over and over in my mind.

I wrote in my post, "I believe it was a all part of her reaction to the flax seed ingestion.  The immediate reaction was vomiting, but she obviously didn't go into anaphylaxis.  I believe it triggered an asthmatic flare which caused the bronchitis."  Now, I am convinced that was an anaphylactic reaction, after all, and we were just extremely lucky.  Just because she survived without epinephrine doesn't mean that it wasn't anaphylaxis.  That incident happened on 10/29/2010.  I didn't have her blood testing done for flax seed until 6/28/2011, which was 8 months down the road.  All that time I avoided flax seed, but I thought it just aggravated her eczema, from the first time I tried it as an egg replacer.  See, I had tried it once, and she got a little rash.  I tried it another time and I believe she said her tummy hurt and she might have thrown up, but that was so long ago.  When this "corn muffin incident" happened in October 2010, I thought she was just getting a stomach bug or something and then when she was having trouble breathing, I was so focused on that and thought it was "just an asthma issue," since it was happening so many hours later, in the evening.  I didn't see a connection to the flax seed, at all, because at the time, I had not confirmed her flax seed allergy.

If I had known she had a confirmed 28.2 IgE (Very High) value for flax seed and she had the symptoms of vomiting, a rash and subsequent breathing problems, I would have been giving her the EpiPen and we would have been dialing 911.  (Of course, I would not have given her a corn muffin made with flax seed to begin with, but that's beside the point.)

So, when we did take her to the ER, we didn't say anything about being there for a food allergy issue, because we didn't know that was the cause of her issues.  She was treated and diagnosed with the ear infection and bronchitis, but as I've said, those are symptoms and not final diagnoses.  What we were really being treated for was anaphylaxis.  We just didn't know it.  So, her medical records don't show it and it certainly didn't get reported to the CDC as such.  This statistic from the Food Allergy & Anaphylaxis Network is one that I often quote:

"The CDC reported that food allergies result in more than 300,000 ambulatory-care visits a year among children under the age of 18. ^1"

However, I can't help but think of how many other visits should be added to that figure that are really caused by food allergies, but not reported that way, because we just don't realize the link at the time.

The other day, Kids with Food Allergies posted this "Did You Know?" link on their FB page, that reads:

Anaphylaxis, a serious allergic reaction, can occur as:

• A single reaction that occurs immediately after exposure to the allergenic food and gets better with or without treatment within the first minutes to hours. Symptoms do not recur later in relation to that episode. 

• Two reactions. The first reaction includes an initial set of symptoms that seem to improve and go away but then reappear. The second reaction can occur between 8 and 72 hours after the first reaction. 

• A single, long-lasting reaction that continues for hours or days following the initial reaction.

That was when I was 100% convinced, beyond the shadow of a doubt, that my daughter had either two reactions (since she seemed "fine" after throwing up), or through a long, drawn out, anaphylactic reaction to flax seed.  It started with vomiting and a rash, then later that night it progressed into breathing problems.  It masked itself as a "just having had too much corn muffins" or just an "asthma flare" and that is what scares me the most.  This incident was so traumatic for me, but much more so, after the fact, when I came to realize how close I was to losing her, and I will discuss that in yet another post, because this incident touches so many topics and there are so many "lessons learned" in these situations.  My point for this post, though, is that, as I said, I believe there are thousands of cases such as ours that are not in the counts of "food allergy related" visits, because we simply weren't aware of the root cause of the problem.