Ep.4 – Label Reading (Pt.1)

Ep.4 – Label Reading (Pt.1)

 

Welcome back to episode 4! This is going to be part one of a two-part segment about reading labels. We’re starting off here focusing primarily on the Top-8 food allergens recognized by the FDA. In part two we will go more in-depth with foods that are outside the Top-8.

 

Main Topic(s)

  • Avoiding Food – Necessary to avoiding a Food Allergy reaction.
    • Must be able to confidently read food labels
  • Every Label Every time
    • No matter how many times you have used the product, always read it
    • Manufacturers and/or distributors can change ingredients or processes without warning!
  • Food Allergy Labeling Consumer Protection Act (FALCPA; 2004)
    • Covers the Top-8 (Milk, Egg, Peanut, Tree Nut, Soy, Wheat, Fish, and Shellfish *but not molluscan shellfish)
    • Ingredient List (Common Names)
    • “Contains” (we usually look at this first)
    • Ingredient List (Expanded or alternate names of Top-8)
  • “Other” statements are NOT mandatory & NOT regulated (e.g. “may contain”)
    • “Egg-Free” may be true for the ingredients, but not for the facility where a product is produced
    • “Other” statements cannot indicate the amount of an allergen or the risk of exposure
    • The absence of an advisory label does not mean the product is safe
    • Work with your doctor to help decide what to try and when
  • Get to know less common/alternative names for food allergens
    • FARE has a great list here
  • Contact the manufacturer(s)
    • More info on this in part two

 

Tips

  • Pay attention to food-allergy recalls
    • FARE Allergy Alerts here
    • FARE newsletter here
  • Packaging can be deceiving
  • Double-check any imported products
  • Whenever possible, have a second person look at the label
  • When in doubt…we don’t eat or try a new food

 

** It’s ok to cry in the grocery store (because you found something or because you found nothing) **

 

Shaun’s Facts

 

Community Connection

 

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Ep.3 Initial Diagnosis (and Life After It)

Ep.3 Initial Diagnosis (and Life After It)

Welcome to our 3rd Episode! This one is all about receiving an initial allergy diagnosis, and some of the emotions involved, as well as coping with new life changes and routines.

 

Two Key Take-Aways:
  • You’re not alone!
  • Ideas about where to start

 

Finally getting a list of foods to avoid
  • Helpful: Because you have a known list of allergens to work with
  • Stressful: Reality sets in when you start learning what it’s going to take to feed yourself/your child
    • Can feel isolating (Especially if you have little experience with food allergies)
    • Daunting (So many variables involved)
    • Sadness (Reality vs. expectations you may have had)
  • Roughly five meals a day (Breakfast / AM Snack / Lunch / PM Snack / Dinner)
    • Exhaustion

 

Where To Start?
  • Food
    • Back to basics (Single-ingredient/whole foods)
      • It’s not forever but can sustain you until you have more knowledge and experience
    • Cross Contact
    • Reading Labels
  • Find Support

 

Information
  • Good vs. Bad Info (always do your research/validation of articles & “facts” you read online)
  • Write down questions for your doctor(s)
  • FARE – Life with food allergies -> Newly Diagnosed
  • FAACT – Newly Diagnosed

~ It may be tempting to read everything BUT might cause undue stress! (e.g., reading about options for 504 plans when your child is only ten months old) ~

 

~ Shaun’s Facts ~

 

Community Connection – AssureTech Mobile App
  • AppStore Download Link Here
  • Translates 130+ Allergens in 15 Languages
  • Displays a Translated “Help” message + Auto-Injector Instructions
  • Locates the Nearest Hospital and can Call Transport
  • They’re continually looking for allergy community members to assist with testing/developing new aspects of their apps
    • If you’re interested, you can sign up to be a tester HERE

 

 

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Ep.2 Back to School!

Ep.2 Back to School!

Welcome back to episode 2!

We’ll be talking about some of our back to school prep, and hear some of Shaun’s perspective as well.

Intro

 

Main Topic: Back to School!

Our second year

Our school choice (why Montessori)

 

Last Year
  • Surprised by unexpected lottery selection
  • No Med Forms Prepared
  • No 504 in place
  • Didn’t know the teacher(s)
  • But no lunch (1/2 day to start)

 

This Year
  • 504 Setup (and revised from the initial plan)
  • We know the teacher (Same teacher multiple years at Montessori)
  • We knew it was happening and had time to plan
  • We know what he needs
    • Classroom
    • Forms
    • Medications
    • Food/Snacks
*We’ve already established our network of allies*

 

Allies (will be a recurring theme)
  • Why make them?
  • How to make them
    • Listen!
    • Inform
    • Offer Help
    • Thank them!
  • Teachers, Staff, Nurse(s), PTA, Students)

 

*Set the tone!* 

You will likely be working with these people for years. So it is helpful not to start off with a relationship on a contentious note.

 

Shaun weighs in.

 

Senator Blumenthal’s Press Conference.
  • Link to the press conference (Link)
  • See minute 16:20 for Linda and Shaun
  • Great experience for Shaun!

 

 

P.S. Apologies if you can hear the Bluejay squawking outside our window, he was not cool.

 

 

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Meet the Art of Allergies Family: Podcast Style

Meet the Art of Allergies Family: Podcast Style

Welcome to our very first episode of The Art of Allergies Podcast!

 

Thank you all for coming on this journey with us so far, and we hope to continue putting out valuable content now in Podcast form as well 🙂

This is mine and Linda’s first foray into the Podcasting world as well, so please bear with us as we get our sound and production dialed into where we really want it to be.

 

In this inaugural episode:
  • Our Story
    • Our current day-jobs
    • How We Met
    • Shaun (obviously) and if you haven’t seen it already we have a Meet Shaun! post to get some more of his story

 

  • We know First-hand (Most of our content is derived from our own experiences)

 

  • Our Hope for this Podcast (and all of our content)
    • To provide support & insights based on our experiences
    • To be a lifeline for families
    • To be a resource for educators
    • To be a touchstone for knowledge seekers

 

  • Why The Art of Allergies (Mirroring our blog post)

 

  • Shaun’s Fierce Dino Fact!
    • And a little bit of Shaun’s allergy story from his perspective

 

  • Community Connection – Each episode we will be including a connection, feedback, and/or resource we use or find valuable.
    • AllergyEats
    • Paul Antico (CEO)
    • Great resource
    • Always looking for new data/contributors
      • Make an account and rate restaurants you’ve been too if you can!
    • They use these ratings to further build their database and to work with restaurants on becoming allergy-friendly
    • The emphasis is on “comfortable restaurants”
      • This helps keep a mindset of constant vigilance

 

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Learning to Live With No Answers

Learning to Live With No Answers

 

Is that a hive? Eczema? Other unspecified rash? All of the above?

 

 

Having food allergies involves numerous changes to your lifestyle and approach to everything. Especially if multiple food allergies are involved.

After the months it took to get Shaun’s skin cleared up, and finally getting the laundry list of allergies he has, we spent the next several months in a panic every time he had a single hive or eczema flare.

 

What did we feed him?

 

Double-check all ingredients and packaging

 

Pace around with the Epi-Pen and watch for more or anaphylactic symptoms

 

We finally reached a breaking point. We consulted with Shaun’s allergist and she helped ease our minds a bit. Here is the big take-away:

 

Not every hive means anaphylaxis.

 

This is incredibly important. 

 

Our allergist describes Shaun, like many others with food allergies, as a “hive-y kid”. Meaning he is probably just going to get random hives, sometimes for no reason at all. More than that, we will likely never know why he got that random hive, or what triggered it.

Shaun gets random hives (anywhere from 1 to 3 or more) almost on a daily basis! On top of all the normal levels of parental exhaustion, there would simply be no way to investigate and figure out the root cause of why he gets every single one of the hives he gets.

 

There’s good news in this though!

 

In time, you will learn your own situation and how reaction(s) present themselves. At this point, 4 years later, we can generally tell when Shaun gets a random hive, if it is truly random, or if he is actually having a reaction to something.

We are also fortunate that in Shaun’s case, he is not going to have an anaphylactic reaction unless he ingests something. So at most, we’re going to have to deal with his skin reacting (hives, eczema, swelling or some combination). But we shouldn’t have to Epi him for a contact reaction.

 

This is another HUGE reason that Linda and I constantly talk about teaching your child to self-advocate. We’ve practiced with Shaun since he was old enough to talk. Ways to describe how he is feeling if things are itchy, burning, prickly, bumpy, rough, etc. This not only helps him tell us when he is feeling those things but also helps us to determine the severity of the situation. This is an integral part of us figuring out when he is having a genuine reaction or when he is having a random hive or symptom that will pass either on its own or with minor intervention from us.

 

Early on, there is definitely a lot of frustration, worry, and anxiety over what’s happening, and why it’s happening. In a lot of cases, you won’t ever get an answer. The trick is balancing preparation, awareness, and responses to ensure that you’re able to handle whatever situation you’re presented with, in a way that’s best for everyone, and sustainable long-term. 

 

 

Living with allergies is an art after all.

 

 

 

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