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New Food Allergy Action Plan from FARE...And It's...Confusing

I was very happy to see a notification in my Facebook feed that FARE has come out with a revised allergy action plan document. This one does a better job than the old form of pointing out severe symptoms. It also addresses instructions for all three of the major brands of epinephrine injector and gives important after-care instructions, the most crucial of which is that a person having a reaction should lay down and stay down.

But I do have to bitch a little about the form. Look at how the top of the form is laid out:

Do you see the issue? By putting the check boxes for when to give epinephrine inside of the symptoms boxes, it may confuse people into believing that epinephrine should be given immediately, even if the allergen was only likely eaten, for mild symptoms. What about if symptoms are severe but the allergen was only likely?

The better way to have done this would be to give each decision point its own area on a chart. All they would need to do is move the two check boxes ABOVE the severe/mild symptoms area, up in the same area where the asthma check box already is.

But my bigger-picture issue with the check boxes is that there are many more than just two decision points when it comes to deciding whether to give epinephrine. Does every allergen get treated the same? Every reaction history? How likely does the exposure need to be (especially for kids who don't get tell-tale hives)? What do you do if the kid has asthma and wheezing is the only symptom?

Here are the main three decision points (plus one I added for type of allergen) that I think the FARE form check boxes were trying to cover:

    NOTE: This is NOT medical advice! Really! I am putting this out there for discussion purposes and I expect each of you to talk this through with your doctor. 

    That said...I hope we can all agree that the first two lines are no-brainers. Personally, I think the third line should be a no-brainer, especially given the recent stories. But it's the next three lines where things get complicated. These are the situations each parent has to walk through with their own physician.

    There is a balance here, and clearly many FA parents need to be strongly encouraged not to be afraid to use epinephrine. The drug is woefully under-utilized during reactions: in one study, only about 1 in 3 people received epinephrine before arriving in the ER. At the same time, none of us want to be over-reacting and giving epinephrine every time our kid sniffles and might have touched a ball on the playground that another child also touched. (If you haven't read my previous post on why we hesitate to give epinephrine, now might be a good time.)

    Now, let's talk about the form.

    The form check boxes definitely need to be far simpler than the matrix above. One of my big issues with the new FARE form is this business about whether the child has actually eaten the allergen. What does "likely eaten" even mean? I definitely don't think the nurse should be running around, quizzing the kids the child ate lunch with!

    I also think the FARE group assumed that any allergy that justifies an epinephrine injector in the first place can probably be assumed to have the potential to cause a severe allergy. Finally, we want nurses to err on the side of administering epinephrine in an uncertain situation. Given all that, here is how I would have structured the top of that form:

    This form takes the decision point about whether an allergen was consumed out of the equation. It also gives a place for a doctor to indicate the need to be more aggressive with treatment in specific situations where nurses typically take a wait-and-see approach. Finally (my pet peeve), it reminds people that hives are not always present during severe reactions.

    FARE committee: if you're out there, I know you likely agonized over this form. I am being critical because I care. Because this is so very important. And because, as I said above, if I don't get it after 13 years of dealing with schools, others are also going to be confused.

    And plus, you know me. I always have an opinion. 

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