We’ve all heard the expression “a mother’s work is never done,” and as the mother of three young kids, I couldn’t agree more. But what rings even truer for me is “there’s never a day off for a food allergy mom.” My work as mom to 10-year-old Nina – the oldest of my three kids and the only one with a food allergy – is never “done” in a way that it is for my younger two, Daniella, age 8, and Mateo, age 3.
For Daniella and Mateo, a playdate is just a playdate. A field trip is a field trip. A summer camp is an exciting new opportunity: a time to make friends, spend time outdoors and learn new skills. For Nina, it’s a potential minefield. How do I make sure she has safe foods to eat? Who will step in if something goes wrong? Who will know where her epinephrine is? Who can I trust to not hesitate to use it? Most importantly: what do I do to make sure I get her back home safe and sound?
Summer camps make me more nervous than school, field trips, play dates and other activities because, in my experience, the counselors are often very young and the days are not always very structured. There’s more movement from one activity to another, less routine, less experienced supervision – it all leaves room for error.
Most troubling of all is an emerging trend I’ve noticed in the last couple of years that I hadn’t encountered in my previous six years working on food allergy safety: the reluctance of some summer camps to administer an epinephrine auto-injector, the only life-saving medication available to our kids with food allergies.
Known as the “guiding hand policy”, many food allergy families have encountered summer camp programs that have adopted a practice whereby their employees are told not to administer epinephrine directly to a child in need and instead to make the child hold the auto-injector, so that he or she is technically self-administering the medication. At most, employees are instructed to “guide the hand” of the child experiencing anaphylaxis.
Next page: We can change these wrongheaded policies
Valerie
My daughter (with peanut allergy) wanted to go to Girl Scout Day Camp two summers ago, when she was 6. I enrolled her and turned in all the forms for her Benadryl and EpiPen. I had one HECK of a time getting them to understand that the Bendaryl and EpiPen needed to stay WITH my daughter at all times (and not be kept in the camp office 1/2 mile away). And then I had to fight the “self administration” thing.
Thankfully, just a week earlier, I received your magazine with an article on Katie Compton having an anaphylactic reaction. I forwarded this photo to the camp director, stressing that when this reaction happens, SOMEONE ELSE has to step in and administer the EpiPen. Besides, what 6-year-old would willingly stick a needle into themselves?
http://singletrack.competitor.com/files/2011/04/2011-SOC-KC-Bee-23-634×421.jpg
In the end, my daughter went and enjoyed camp, but needless to say we didn’t go back. I didn’t feel that she was completely safe, or that my concerns were taken seriously. I just hope that my fight helped them to better understand the severity of allergies and the proper way to handle them.
Amanda
I am 21 and I have life threatening food allergies to dairy, nuts, and all legumes. When I went to summer camp as a kid the staff was just as clueless – the camp nurses said they wouldn’t administer an epi pen if I needed one because both the epi pens my mom had sent with us had my brother’s name on them (he also has several life threatening food allergies). Luckily that was easily solved by sending one with my name on it too. But it just shows that people really don’t understand the severity of allergic reactions. I have had 6 anaphylactic reactions in my life, and someone else had to administer the epi pen every time. When your hands and eyes are swollen, you’re about to pass out, and your nerves are insane, it’s pretty much impossible to give yourself an epi pen, let alone hold one firmly with your hand. I think this is a great article and it’s raising awareness about an important (and strangely contentious) issue.
Dave
As a thought experiment, encourage the camp director to think through a similar policy for defibrillator use. Life saving treatment on hand, but only if you can help yourself? That is crazy and inhumane! Especially given the minimal downside to giving epi unnecessarily.
Christine
I think you need to investigate a step further. Is it the camps making the policy because that’s “what they are comfortable with,” or will their insurance not cover them to administer medications. This may be the case in many municipal day camps, but I do not know for sure (I would like to know). I can’t speak to resident camps with medical personnel on staff. So, if it is an insurance issue, then what?