We recently found out one of my children has a severe allergy to fire ant bites. After one evening playing outside with neighbors, my child became erratic and crazy and covered head to toe in hives about 20 minutes after being bitten by a fire ant. All six of the neighborhood kids had come to report they’d been bitten earlier. Each child had ONE single bite which rarely happens–it’s usually more. That one bite put my child into an anaphylactic reaction. I didn’t know it was an anaphylactic reaction at the time however, because he was not breathing any different than normal. So, low and behold, we did not make a late night trip to the ER and instead did the double dose of Benadryl and monitored his breathing. This leads me to the number one thing I learned as a new allergy parent:
Anaphylaxis Doesn’t Always Look How You Think
When most of us hear the term “anaphylaxis” we think of someone having difficulty breathing. Many people are surprised to learn that it can affect other systems in your body such as neurological with symptoms like confusion, anxiety, erratic behavior, cardiovascular leading to becoming pale, faint or dizzy, weak pulse, or even affect the gut with severe vomiting etc. These are in addition to the common systems everyone knows about becoming affected: breathing issues, throat/mouth swelling and hives on the skin. Whenever more than one system is affected, it is anaphylaxis according to my doctor.
Talk to People Who Have Been There/Done That
All that night I stayed awake. I basically pulled an all-nighter while catching a few cat naps beside by child. I sought advice from friends via social media. Immediately, I had a handful of people that had been through similar experiences to virtually hold my hand that evening. Seek comfort and commiseration and advice and all.of.the.things from friends/acquaintances that have been there. By the next morning I had a wealth of knowledge shared with me, resources to look up and read about allergies, and a solid game plan of what I would be expecting to hear and things I should be asking at the Pediatrician’s office the next morning and at the expected upcoming visit to a pediatric allergist.
Allergies Can Be Confusing
To my logical mind and to my engineer husband it was very hard to sit and listen to the specialist say that blood test results can yield false positives. Or false negatives. Or that you can become allergic to anything at any given time. Or that you can also become UNallergic to anything at any given time. And that while ALMOST every time you have a subsequent exposure that the reaction will be worst than the previous reaction, that it isn’t always true and could prove to not have a worse reaction. Bottom line is that there is a big margin when testing and predicting allergic reactions. That doesn’t sit well in the minds of people who like things to line up perfectly.
You’re Going to Have Some Baggage (Literally)
Gone are the days of carrying nothing but your phone and keys while out and about with the kids. If your child becomes dependent on an epi-pen get online fast and order a carrying case. Epi pen cases are available on Amazon, medical supply companies, Etsy. . . anywhere. They have bright cute ones or solid neutral colored ones–some even have a temperature strip inside them. Get one with a loop on it and with a clip on it and with little compartments and pockets inside–all the bells and whistles. Get it embroidered with your child’s name and allergy if you want. Or just go super simple and use a small zippered pencil bag or cosmetic bag. Get a fanny pack. Wear it and own it. Just know that you have to keep the epi-pen on you at all times forever and forever. And at a reasonable temperature range meaning it can’t be left inside the car. Ever. And if you are going to the beach or park or zoo or any outdoor festival then be prepared to carry an insulated bag–think: small lunch box. I polled a bunch of fellow allergy friends and read up on allergy social media groups and there is a range of parenting philosophy about how doing this, but the fact is, if you store the epi-pen out of temperature range it may not work and that is just not a risk worth taking if your child has a life threatening allergy. With a thermometer I tested my car. Even after just a few minutes on a sunny day in early spring my car reached internal temperatures above the safe range of storing the epi-pen. I like to shop and spend money, so I took full advantage of my weakness and bought multiple cases, and a new purse among a few other small things just to make life easier for toting around the epi-pens. I also ordered an engraved id tag (meant to really be a dog tag to clip on a collar) and printed other tags to hang on zipper pulls that label and serve as a notification to strangers that an Epi-Pen is in the bag.
Make Sure the Doctor You Choose is Someone you Like and Trust
Even if your child is not a candidate for immunotherapy (allergy shots) you will be a frequent patient at the allergist office. Take advice from friends, coworkers, and strangers, and of course get your pediatrician to make recommendations. After researching with your insurance then make your decision. Don’t be afraid to try another doctor if you don’t mesh with the first one. My family’s philosophy is to use pediatric trained specialists in the appropriate field but not everyone feels so strongly. We lucked out that the doctor we decided upon seems to be a perfect fit for our family. Since my child gets the weekly allergy shots we have quickly become familiar with everyone in the office and let me just tell you that if I didn’t like something about the office or facilities or people working there it would make this process miserable. We have a prepacked backpack that we bring along to the appointments each week and the kids do their homework first then their fun activities/games in the bag. And then of course they get a treat at the end.
When you get a diagnosis of a life threatening allergy it’s hard at first. Let yourself freak out a little. Cry. Mourn a little that your child is not perfect and that life is changed. Then channel your inner neurotic side and over-prepare and organize yourself. Over-educate your child, your family and any current and future caregivers. Then proceed to go about life as usual with epi-pens in tow.
A few other tips I’ve picked up along the way:
- Nurses, Lab technicians and Doctors all assume that everyone hates needles and they will be thrown for a huge loop if your child is not. Please stand firm and don’t let them introduce or project a fear of needles if your child does not already have this.
- Don’t ever stab yourself with the epi-pen if you have to use it for real. Don’t practice with real ones. Use the included Blank to practice.
- Awareness and avoidance is key for many. Be obnoxious with strangers and others around your kids.
- Don’t expect your kid to care as much about the severity of their allergy as you care.
- Prepare to go to battle with schools. (To be continued possibly)
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