Welcome to the club where nobody wants the free membership card. First, take a deep breath and know you aren’t alone.
There are Facebook groups, local allergy alliances, national non-profits you can join for support and of course, there’s me. I’ve been where you are right now. I know how it feels. I ran the gamut of shock, sadness, optimism, overwhelm, despair, hope and eventually freedom. Here’s a couple of suggestions, mom-to-mom.
After you take that deep breath and if you’re like me, swipe away a couple tears, head your butt straight to the pharmacy to fill that Epipen prescription. Don’t even think about not doing. Don’t tell yourself the allergy isn’t that bad. What may be hives today could be full anaphylaxis tomorrow and preparedness is the difference between life and death. They will come in packs of two. DON’T separate them. They come in packs of two because in the event that they need to be used and one fails or there’s a bi-phasic reaction, you will need both. Now, watch the video on how to use it and practice with the trainer. (be sure it’s the trainer…oops!) Figure out how you will keep your child still while injecting because most will try and fight. If your child is old enough, have them practice using it, too. Repeat after me: epinephrine is our friend. We will not be scared to use it.
Here is a great resource to print and share with your child’s school and caregivers, from FARE. http://www.foodallergy.org/file/emergency-care-plan.pdf
Start in your own pantry with reading labels. Don’t just read what is in the allergy statement in big, bold print, but read the entire ingredient list. If your child is old enough, show them what they are looking for, too. My son couldn’t read yet but could spot “peanut” written on something a mile away. He was a great advocate for himself and you want your child to learn that skill. Food allergy kids learn about life and death far too soon, but they also learn to ask questions and even refuse food if in doubt. They become champions of their own health.
For school-aged children, you will want to set up a meeting with their teacher and the school nurse to be sure they know the signs and symptoms of anaphylaxis and have a copy of your emergency plan. You want to leave them a set of Epipens and be sure they have been trained in how to use them properly. Talk to your child about not sharing food or eating treats at school that have not been approved by you. Now, hopefully your child’s teacher is on the ball and she/he can regulate this, too. If not, keep a stash of safe snacks in your child’s class that can be substituted for unsafe treats.
Check the resources tab on the top of the page for some additional sites that can help you on your new journey.
If you are a long time reader of my blog, you’ll know that my son is free of his allergy now after years of contact reactions and anxiety. We chose to move 700 miles away from our friends and home in order to take part in a desensitization treatment that ultimately changed his life. Despite this, I will always be an allergy mom. I will always remember what it was like to read labels, jump every time the school called my cell phone and bake safe cupcakes late at night before a birthday party. My purpose is to help others who are still in the trenches. XOXOXO