2017-18 School Year Update
Seven days into the new school year, I was feeling pretty accomplished. I sent off one seventh grader to her bus, kissed my fourth grader goodbye at our door as she left to bus with her dad, and managed to keep them both on their allergy shot schedules (more or less). I even kept the 504 meeting to within the time limit and bragged about how amazing and independent my daughter has become with the school's safety and care.
Then she came home from school and I fed her a snack bar with cashews in it. For real. You can read a bit about the reaction, if you want, on Freedible (I'm nvanhoey). Long story short, she is doing great and recovered physically and emotionally 100%. (I'm getting there.)
This post update came about because I've just now stopped to think about whether this pocket card would have walked Jo through giving herself an Epi, if necessary. And I'm happy to say that it completely aligns with the grey area that was her reaction!
If she had to make the decision alone to Epi or not, she should have erred on the side of using it. Always, if she eats the food and isn't well. But in this case, she had one very major symptom (a deep red rash all over her body) that continued to worsen and one major symptom (extreme vomiting) that stopped quickly. Two major symptoms = EpiPen.
We didn't, though. Because the vomiting stopped, and because she never had airway/breathing symptoms, we headed to an urgent care to monitor the rash instead. And that was okay, because I was there to make that call and she had multiple health care experts monitoring her. But Epi would have been okay, too, and would have been the very safest thing for her to do if alone.
So, now we know:
1) She's still allergic to cashews.
2) The pocket card would work for her decision making all alone.
3) She's still most likely to get fed an unsafe food right at home from her mom. Ah, parenting with food allergies! :-}
I posted early this spring about advance planning for my tween's food allergies: updated 504 accommodations, learning to self-inject EpiPens, and the like. As we face growing older with food allergies, I find myself unable to rely on the basic parent-centered tenets I used in the playdate phase of life:
Now, we are shifting to tenets of self care, so soon and too suddenly (for me, at least!):
Mostly, this is going well. I have found myself searching out resources again, though, much like when we first found out about the severity of these food allergies. This time, I have a ton of great places to go already---from Kids With Food Allergies to the AAFA, FARE, ACAAI, and more. Still, I sometimes come up short with just where we need help (like when we looked for role-playing examples of how a child can speak with an adult who really isn't understanding the seriousness of her food avoidance needs).
My latest search is for a pocket card about when to use the EpiPen.
We figured out quickly that Jo needs not only to know HOW to use the pen correctly but also WHEN. And, truly, that's something that is still unclear to a lot of adults, especially when we are in the middle of a scary situation. To ask a child of any age to do it too weighs on my shoulders. Knowing how and when to do this goes hand in hand with her independence, though, and the card has to be small enough to go with her pens but in clear enough language for anyone of any age to understand it quickly. That's a lot to ask from a 3x5 piece of paper!
I've found some great posters, action plans, and other full-page resources from the usual amazing sites:
This 2013 ACAAI anaphylaxis card via Kids With Food Allergies comes close to what I'm seeking, but it doesn't give as much clarity as I'd like for our specific needs. Something between these medical basics and the details of the posters would be ideal, really.
So, for now, I decided to make our own personalized, plain-language "When to Use Epi" card and try it out for the summer. After talking through scenarios with Jo and her allergist, I decided to include more common food experiences that might not need epinephrine but might be confusing to a tween with food allergies when a parent isn't nearby. We'll laminate a copy of this for her new purse-pack and for the swim bag.
I've added the downloadable PDF version of our front-back card here in case any of you are seeking similar* portable cheat sheets for your growing kids with food allergies.
*Medical disclaimer time: The instructions I put on OUR card are instructions from OUR allergist to my daughter for her particular situation at this particular time. Although anaphylaxis does have some consistent presentations, its triggers, speed of onset, and treatment plans vary slightly for every person and situation. Please feel free to use this card only as an example of how you might formulate your own card with your allergist's help. I highly suggest taking any example of your own to the allergist for approval, too.
Hi, I'm Nicole.
ABOUT THE BLOG
An apothecary is a person or a place. Either one implies healing and relates to pharmacy in its truest sense, as a source of treatment and advice.
This blog is my way of uniting my pharmacy training with my efforts to provide a healthy and safe lifestyle for my family. In true apothecary form, I research and prescribe alternative ingredients that work just right in each specific recipe, and I would like to share the results with anyone who needs help making their own family’s kitchen allergy safe and heart healthy.
Nicole Van Hoey's books on Goodreads
Bakery Bites: Breads and Treats Without Dairy, Eggs, Nuts, Seeds, or Soy
ratings: 1 (avg rating 5.00)
Kitchen Adventures With Multiple Food Allergies: A Recipe Collection for Celebrations Without Dairy, Eggs, Peanuts, Tree Nuts, Seeds, or Soy