Food Allergy Mom

If you are a new food allergy parent, this guide is for you! Over the years, I have learned that there are a lot of resources from the food allergy community to support you.

There are passionate parents who dedicate their time and resources to make the world better for their kids who are experiencing life with food allergies. There are dedicated allergy-friendly bakeries, chocolate companies, advocacy groups, support groups, educational tools, programs, camps, apps, products, etc! This is awesome!

The problem was, when I was a new food allergy parent, I couldn’t find this information in one place. I found it over time, and by time, I mean months and years.

This guide for new parents gives you the top resources I found and personally use. If you like, a convertible PDF at the bottom of the post lists them all with links! 

Here you go, the TOP 8 Must-Have Resources for New Allergy Moms (and Dads).

1. FARE – foodallergy.org

Their mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. FARE stands for Food Allergy Research & Education. This massive non-profit is a leader in the food allergy community. In addition to a wide variety of education programs and research, you will find a broad wealth of resources for living with food allergies.

FARE is the trusted source of information about food allergies and they have a really useful newly diagnosed section that I encourage you to check out. They also have resources for older children, teens, adults, educators, college staff, and health care professionals. 

When you join the FARE email list, you can receive updates on news in the allergy world. Through their website, you can also connect with a local support group. 

If you haven’t already, spend some time on their website. This is the big one you need to have in your favorites list!

2. FAACT – foodallergyawareness.org

FAACT stands for Food Allergy Anaphylaxis Connection Team. This group is an exceptional advocate for the food allergy community. They offer education programs across the country, including a summer camp, a leadership summit, and a teen retreat.

They also provide excellent resources on civil advocacy for people with food allergies. This group also pays extra attention to the behavioral impacts of living with food allergies. They create very helpful resources on everything from bullying to the impact on the parents. You are also able to connect with a local support group through their website. 

Check out their newly diagnosed guide here! Newly Diagnosed PDF- FAACT

You will also find educational materials on topics like recognizing the signs of anaphylaxis, the different epinephrine injectors, traveling with food allergies, school, and so forth. 

Definitely keep this website at your fingertips for different questions that may come up. They are a wealth of knowledge!

 3. FAACT’s Recognizing Anaphylaxis Guide

It is one of the most frightening aspects of being a food allergy parent, but the threat of anaphylaxis is real. Understanding it is critical to managing life with food allergies.

This guide from FAACT explains the signs and symptoms of anaphylaxis to help you recognize it quickly and then take the appropriate action. 

Similar to why you have your emergency action plan, you want to have some “muscle memory” so that if you are in an emergency situation, you can fall back on your training to move you through it.

After my son’s diagnosis, I was so fearful that I wouldn’t be able to manage an allergic reaction correctly. Questions like, “how will I know if this is really an allergic reaction?” or “what if I administer epinephrine and he didn’t need it?” floated through my head.

For me, I felt a deep fear of being wrong.

Learning the signs helped me gain confidence in recognizing an allergic reaction. This guide helped me to identify future reactions that both of my children did have, and because I realized it quickly, I could respond to their needs appropriately.

Regarding the second question, “What if I administered the epi and he didn’t need it?” the experts have a consensus. According to WebMD, the experts say, “It’s much more dangerous not to get epinephrine when you’re having a severe reaction than to get a dose you don’t really need.”

Our household rule and for anyone who provides childcare for our kids is, when in doubt, administer the epinephrine. Period.

I keep this guide with both of my kids’ epinephrine. Reviewing and leaving with grandparents or anyone who cares for your child is helpful.

Keep this guide handy.

4. Emergency Care Plan from FARE

FARE works on behalf of the 32 million Americans with food allergies, including those at risk for life-threatening anaphylaxis, and they have an Emergency Care Plan from the FARE template. It provides clear instructions for managing an allergic reaction and is something you should review with your allergist during your initial appointment.

This is an example of what you would submit to daycare, schools, camps, and childcare providers, so other caregivers have a specific plan for your child’s needs. It is a detailed plan explaining what should occur during an allergic or suspected allergic reaction.

Although this was intimidating for me in the early days, it helped me to walk through what I would do if my child needed me to respond in an emergency situation. Ultimately, getting familiar with it and having it on hand has given me the confidence that I can manage an emergency should it arise.

My hope is that you will experience increased confidence too.

I keep a copy of this with each of my kids’ EpiPens. There is also a copy in my kitchen. If I leave my kids with another caregiver, I review this with them before I leave my kids.

In an emergency, clear, actionable steps help you (or whoever is caring for your child) to stay calm and help your child get the proper care that he or she needs. 

The chart highlights the different systems that can be affected when the body is experiencing an allergic reaction. It then shows what to look for when administering epinephrine.

Talk To Your Allergist.
As always, consult with your allergist for the right emergency care plan for your child! If you didn’t get one from your allergist, call them back and ask to walkthrough a plan for your child.

5. Spokin

Ready for a food allergy app?! This app is SO handy to have on your phone. It was created by a fellow food allergy momma, Susie Hultquist, after her oldest daughter was diagnosed.

Spokin helps you find new brands, restaurants, local ice cream shops, summer camps, hotels, and more to meet your allergy needs.

You can connect to other food allergy families, search for recipes with an allergen filter, and learn about verified food brands.

The app compiles information from a large community of food allergy consumers who give reviews and feedback on locations across the US.

So if you wanted to find an ice cream shop to take your child to, you could use the app to see reviews and ratings from others who are managing the same food allergies. This also goes for food brands, products, hotels, etc. 

This is AMAZING when you are traveling and aren’t near your usual places. Trust me, Spokin is a fantastic resource for your food allergy momma toolkit!   

6. Snack Safely

Raise your hand if you read food labels before your child’s diagnosis. Yeah, I definitely did not. I think I could count on one hand how many times I had read a food label in my first 30 years prior to my son’s diagnosis.

If you are already in the habit of always reading labels, seriously, mad props, momma. If you are like me, your child’s food allergy diagnosis has thrown you headlong into the confusing, crazy world of food labels and manufacturing. 

Food labels and determining which products are safe for your food-allergic child to eat can be daunting, especially in the beginning. I felt like I needed to completely relearn how to shop at the grocery store. 

This is why Snack Safely is awesome. They compile various guides that help you navigate which food brands meet your child’s specific needs. For example, if your child has a dairy allergy, they have a guide to help you find dairy-free brands.

They are also organized by food category. So if you need to find bread that meets the needs of your child with egg allergies, you can search the guides for bread and find brands that meet that need. I have found this to be incredibly helpful for finding new favorite brands for our family.

Snack Safely also releases guides for helping you navigate finding candy for special occasions like Halloween, Christmas, Valentine’s Day, and Easter. SO helpful!

Food labels are confusing.

Although manufacturers are required to disclose if a Top 8 Allergen is an ingredient in the food, they are NOT required to disclose if the product is processed in a facility containing your child’s allergen or if it is processed on the same line as your child’s allergen.

This has the potential to create an issue called cross-contact. Cross-contact in manufacturing is when residual protein from an allergen that was processed on the equipment or in the facility gets into other products processed on that same equipment or in the facility.

For some food allergy kiddos, that small amount of residual protein is enough to cause an allergic reaction. I highly encourage you to ask your allergist if this is a concern for your child.

Snack Safely vets the manufacturing process for each product they recommend so that you know exactly what the process is and ultimately, what’s in your food.

Add this one to your list momma! 

7. The Food Allergy Counselor Directory and Website

When my son was diagnosed with a peanut allergy at 8 months old, I cried on and off for 3 straight days. I could barely talk about it without getting emotional. I was terrified.

The waves of emotion were so intense in those early days. I didn’t want him to live with this. I was scared of what this might mean for him.

Honestly, I was overwhelmed.

In the days and weeks, and eventually, months that followed, I learned more and more about what caring for a child with food allergies really meant. If only it was as simple as, “don’t let them eat that food.” It should be that simple, but I quickly learned that avoiding that food is far more complicated.

Between food labeling and manufacturing, cross-contact issues, social gatherings, people that are either uninformed or strangely hostile about this issue, and finding your food allergen in the most unexpected of places, managing food allergies is anything but simple.

It does get easier in many ways, this I can assure you.

But if I’m honest, my son’s, and eventually my daughter’s, food allergy diagnosis’ completely changed my relationship with food. Food is no longer simply nourishment and even enjoyment. It is now also a threat. And, potentially, a lethal threat to my kids.

It’s so strange that something they need is also something that could have devastating consequences. 

There is also a social component to food that raises a million questions. How do you attend another child’s birthday party? What about that family BBQ? How about the aunt who insists that Christmas isn’t without pecan pie?

What about other kids eating food on the playground? How do you handle the neighbor who fills their bird feeder with peanuts for the squirrels? Or the child actively eating your child’s allergen during their toddler soccer class? What about bullying?

How do you travel? How do you leave your child with someone else? What about daycare or starting kindergarten?

Suddenly, as a parent, you are re-assessing so many components of how to do life. It’s very disruptive.

How are you doing, Momma?

I say all of this to affirm to you that the weight of managing this as a parent is not a light one, so it’s not a surprise if you are feeling the pressure of it. Maybe your anxiety has increased.

Perhaps you are avoiding social settings that you otherwise wouldn’t. Maybe you now feel stressed about eating. 

I want to encourage you to check in with yourself as you navigate the days and months ahead. How is your stress around this? How is your anxiety? Are you the healthiest you can be?

I firmly believe that one of the best things I can do for my kids is to ensure that I am a healthy mom. When I started noticing that my anxiety around this issue was becoming abnormal for me, I sought help from a counselor. Having that support has been life-changing.

The good news.

Some counselors specifically focus on helping families navigate food allergies! Here is the Food Allergy Counselor Directory and Website.

I think it’s fantastic that you could have some focused time, for a season, to process all of this with a professional counselor who focuses on this area. Seriously, this is amazing.

I am healthier because I went through counseling. I love the family culture my little family is creating around food. My kiddos are learning to cook. We are learning our 5 Food Rules for navigating allergies. Meal time is full of silliness and fun.

We travel. Food allergies don’t stop my kids from living their best life. But getting to this point has been challenging, and I still have so much learning to do. Let’s just call it what it is. It’s been tough, and it was lovely to have a season where I had just a little extra support and encouragement.

I want to encourage you to remember to take care of yourself. It’s so, so important. 

8. Allergic Living

Allergic Living Magazine was new to Katie and me this past year, and we spent a lot of time reviewing the website. We can say without a doubt that this resource is invaluable. 

They provide a lot of informative articles about medical advancements, living with specific food allergies, and even a helpful section for families that have just been diagnosed.  They also talk about managing food allergies in different areas of life. 

Many topics are covered. Issues like how to explain the dangers of allergies to others, working with your child’s school to keep them safe, and even preparing your children to live on their own in college with their medical needs.

It’s comforting to have all these tips in one website location. Additionally, they even post allergy-friendly recipes often, which is so helpful to our family. 

Information Beyond Food Allergies

Another bonus is that Allergic Living occasionally posts articles about safe body products that don’t contain our children’s allergens. For instance, I love the yearly post about safe sunscreen brands. 

It helps us narrow down our search for safe companies to contact.

Another aspect of Allergic Living that I like is that all the different categories of information are listed clearly at the top of the home page with drop-down tabs. 

I LOVE that it is organized like that, and easy for me to quickly find the topic I want to read about.  For example, they list “outdoor” and “indoor” allergies as a tab.  My daughter has numerous environmental allergies that we must figure out how to manage, so any information I can find is helpful.  

Lastly, another great feature of this website is a section called “Ask the Allergist,” where you can search for a specific topic you are wondering about. 

An actual certified allergist writes these articles and answers questions for food allergy families.  What a wonderful idea and resource!  

A Note to the New Food Allergy Moms

If you’re reading this and are brand new to the allergy world, I thought of you when I wrote this post. I know all the feelings. You’re not alone.

The post So Baby Has a Food Allergy…5 Next Steps, might be helpful to you.

9. Red Sneakers For Oakley

Red Sneakers for Oakley is one of those organizations that speaks and advocates from a place of genuine care for food allergy families. I can hardly talk about this great group of people without choking up.

RSFO visits schools, businesses, organizations, and community groups to help educate people about food allergies. Their programs strive to empower folks to get involved in their own cities to raise awareness and compassion.

Not only that, but their website provides a FREE download of their food allergy handbook and some handy links to other health resources for families.

Definitely check them out at their website and on instagram!

To All the Food Allergy Moms

You can do this. Honestly, you are already doing this! You’re awesome.

And if this list of resources makes your journey just a little bit easier, then we’ve done the work. If you like, you can download a free pdf of these resources to have the links all in one place! See below.

Love to you,

Lauren

What to Read Next: 10 Questions for Your Child’s Allergist

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