Ep.9 – Birthday Celebrations

Ep.9 – Birthday Celebrations

Main Topic(s)
Birthdays with food allergies

Shaun’s 1st Birthday

    • UNO Party!
    • 12 Food Allergies at the time
    • So many foods that we had not tried yet (barely on solid food)
    • Shaun’s first cake was actually a waffle 🙂
    • Creative improvisation is key!

Shaun’s 2nd Birthday

    • Pumpkin painting
    • All Shaun-safe food
    • Uncle Tommy’s gift for Shaun (Train)
    • Cornflake-Crumb chicken, veggies & quinoa

Shaun’s 3rd Birthday

    • 3 & 30 (shared party with John)
    • Baked Potato Bar!!
    • Everyone (including other non-allergy restrictions people) can pick toppings that are safe
    • Still made as much as possible Shaun-Safe
    • Remove all the food that Shaun would eat, prior to anyone else getting theirs (limits cross-contamination)

Shaun’s 4th Birthday

    • Play Set!
    • No meal, just snacks = All Shaun Safe
    • Build Day for the boys
    • Sleepover at Aunt Carol’s for Shaun

Shaun’s 5th Birthday

    • Shaun got to make Shaun-Safe cookies to bring to school
    • Dee’s Bakery – Cupcakes on 1st Friday Dinner
    • Shaun requested Brinner! (just like Dad 🙂

 

Tips
  • Test out your cake prior to the party (especially the first year/birthday party)
  • Simplify as much as possible
    • All Safe foods, no food at all, dessert/snacks only, etc.
  • Make your family your allies!
    • Supportive and understanding
    • They can help with prepping food in YOUR space (where you know it’s safer)
    • Non-food ways for them to help with a party

 

Shaun’s Facts

Unfortunately, Shaun has not been feeling well, so we did not record with him for this episode, we hope to have him healthy for the next one!

 

Community Connection

A couple of anecdotal stories about some interactions that we’ve had with people recently.

 

 

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Ep.8 – All About Eczema

Ep.8 – All About Eczema

 

Welcome to Episode 8! This week it’s all about eczema. We dive into our journey through it, what forms it can take, and some of our tips and tactics for dealing with it. As always, we’re not doctors or trained medical professionals. All of the tools and things we used/still used were provided by our doctors and medical care team, We ALWAYS recommend that you consult your doctors and care team before doing anything.

 

Main Topic(s)

October is National Eczema Awareness Month

  • The primary goal is to raise awareness
  • Eczema is part of the Atopic triad
  • What is eczema?
    • American Academy of Dermatology has some great resources

 

Eczema is part of Shaun’s Story

  • Our first and earliest indication that Shaun might have food allergies
  • We went to a dermatologist before we ever saw an allergist
  • An infant with eczema + winter (and no G.I. symptoms) was presumed to just be eczema

 

Care Plans (of which there are MANY)

  • Over the counter
  • Breast Milk
  • Natural Options
    • Oatmeal
    • Coconut Oil
    • Lavender
    • Sea Salt Baths
  • Prescription Topicals (Creams/Ointments/Oils)
  • Wet Wraps (also sometimes referred to as “Soak & Seal”)
  • Oral Medications
    • Antibiotic
    • Steroid
    • Antihistamine
  • Formula (Prescription & refined)

 

What we do now (maintenance)

 

Shaun’s Facts

 

Community Connection

Linda’s Sen. Blumenthal & Sen. Lesser Roundtable about drug pricing and legislation.

 

 

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Ep.7 – Allergy Q.O.L & Relationship Impact

Ep.7 – Allergy Q.O.L & Relationship Impact

 

For episode 7, we’re going to be diving a bit deeper into some quality of life impacts that come from an allergy diagnosis. Specifically, we go into how it can affect your relationship with your partner/spouse.

 

**Disclaimer** – We understand that there are many different types and styles of relationships between people/caregivers and we are not trying to offend anyone or devalue any of those other types of relationships. As we mention in the episode, our experience is from a heterosexual marriage raising a child with food allergies, and this is what most of this will be based upon. We do think that the core principles that we discuss are valuable to most types of other relationships as well though, and we hope that regardless of your situation, you are able to find something valuable to take away from this episode.

 

Main Topic(s)

Food Allergies Impact Quality of Life

  • Health
  • Emotions
  • Finances
  • Relationships (Marriage in particular)

 

Dr. Gupta

  • Dad’s feel less empowered but generally, have a better QOL
  • Mom’s feel more empowered but generally, have a lower QOL

 

Marriage Outside of Food Allergies is Hard on its Own

  • We all come with baggage, history, and experiences that impact the relationship
  • It’s hard work, under the best of circumstances
  • Marriage is not a fairy tale
  • Communication
  • Compromise
  • Growth
  • Then add kids and food allergies and it gets exponentially harder

 

Marriage and Stress With Food Allergies

  • Compounds the difficulty
  • Increases the struggle to communicate effectively
  • Stress causes people to revert back to old (often unhealthy) habits

 

How it has affected us and our relationship

 

We started going to counseling back in 2015 and still continue to go to this day!

 

Linda’s advice to the wives/moms

John’s advice to the husbands/dads

 

Shaun’s Facts

Apologies for the awkward cut this week. Given the material, it was more challenging than usual to find a good place to get Shaun’s segment in.

 

Community Connection

Again with how heavy the topc was for this episode, we are just using a short and sweet story of an experience we had with Shaun this past week.

 

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Ep.6 – Halloween & Teal Pumpkins!

Ep.6 – Halloween & Teal Pumpkins!

 

Welcome to episode 6! This one is going to be about Halloween and the Teal Pumpkin Project! We know it’s a bit early, but we wanted to talk about it early enough that anyone who wanted to participate this year with the Teal Pumpkin Project would have the time and access to resources to do so 🙂

 

 

Main Topic(s)
Halloween!
  • Why we (and especially Linda) love Halloween, and what it means for our family
  • How to cope with what your expectations for the Holiday might have been, compared to what they are/will be posted allergy diagnosis
  • How well-intentioned people tried to “comfort” us

 

TIME!
  • Everything in allergy life (and life in general) happen at a much slower pace than we want it to
  • Allergies will likely change/shift over time
  • Substitutions get easier the more familiar you are with your specific allergy situation
  • Forming NEW and unique traditions with time

 

How We Celebrate
  • Shaun’s costumes are homemade
  • We move family dinner on the week of Halloween to the day of Halloween so the family can participate
  • We do a costume reveal and special photos for Shaun with each new costume
  • How we Trick-or-Treat with Shaun
  • The Candy Trade (how we swap things with Shaun so he can end up with safe treats)

 

Shaun’s Facts

 

Community Connection

F.A.R.E Teal Pumpkin Project

 

Linda’s 2017 FB Post about the Teal Pumpkin Project:

I have read a lot of mixed reviews this year about FAREs Teal Pumpkin Project. Many people feel that my child’s food allergies are “not their problem”, and that providing a non-food treat for a food allergy child on Halloween teaches them that the world will always accommodate them.…

Now you might be surprised to hear that I don’t believe people who hold this opinion are entirely wrong. But, as always, there is a middle ground. Here are my thoughts:
You absolutely do not have to accommodate my food allergy child by participating in the teal pumpkin project. Whether you don’t like the idea, don’t have the time or money, or just plain prefer orange pumpkins, no one if forcing you to participate. And when we trick or treat on Halloween, with our EPI pens in tow, my child will collect candy unsafe for him and trade it in for his safe treats when we get back to the house. This way he gets to participate in a modified way, hopefully teaching him that he will have to modify his experience often to navigate food (and life) safely. This is so important for him to learn.

But, if you participate you sure will make my son’s night if you hand him something that is safe for him! It will show him that there are people who understand his food allergies significance in our life. And hopefully, teach him that being considerate and kind makes a difference. This is so important for him to learn.

So to all those who choose not to participate, I understand. And thank you for teaching my son about personal responsibility, fairness (because when it comes to food for him a fair alternative is not always equal and that is okay) and life!

And to all those who will be placing a teal pumpkin outside their house this year, thanks to you for teaching my son about community and kindness!!!

Happy Haunting
LC

 

 

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Ep.5 – Reading Labels (Pt.2)

Ep.5 – Reading Labels (Pt.2)

 

Here is part two of our Label Reading episodes! This second part focuses on non-top-8 food allergens.

 

Main Topic(s)

  • What are the Top 8 (quick recap)
    • All of these are required by law to be identified on food labels
  • Non-top-8 Allergens are not required to be called out specifically on labels
    • This makes label reading a bit trickier as allergens could be hidden in a few additional places
  • Common places for allergens to hide:
    • “Natural Flavors”
      • A catch-all term for any natural ingredient presents risks especially for seeds and fruit allergies
    • “Spices”
      • Similar to natural flavors, but can contain multiple mixtures of spices (e.g. Italian bread crumbs)
    • “Modified Food Starch” – Can take multiple forms
      • Wheat
      • Corn
      • Potato
      • Tapioca
      • Rice
      • Mostly used as binders in foods
  • Calling Manufacturers
    • Not all Manufacturers will respond the same
    • The WAY you ask questions is important (especially with companies that have proprietary recipes)
      • Have your product/label with the ingredients in front of you when you call
      • Explain you’re a FA Parent and ask them to write down the list of allergens you’re going to give them
      • Repetition of your allergy list the same way every time can help with memory
      • Have specific questions about ingredients
      • If proprietary, ask if they can tell you if your specific allergens are in it
      • Guage how quickly they can access/know the info about their product
        • Product awareness
        • Good/accurate usable info
        • Can indicate if this is a company you want to continue to buy from
      • Honesty about their ability to guarantee safety with their ingredients/products
  • Allergens outside the top-8 unfortunately usually means more work and fewer options. If you’re unsure, don’t try it.
  • If you don’t know what an ingredient is, LOOK IT UP!
    • As we mentioned in the last episode, there are numerous names for food allergens
    • Consult FARE’s resource for a great list and info about alternative names
    • Google search can also be helpful if you’re looking for one specific ingredient name
  • Natural foods often contain seeds or seed oils
    • Not all oils are highly refined and any food proteins left in the oils can make it unsafe to consume

 

Shaun’s Facts

 

Community Connection

Diaspora Multicultural Festival

 

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