A Love Letter From a Food Allergy Mom *Updated*

A Love Letter From a Food Allergy Mom *Updated*

 

 

Dearest friend, 

 

I write to you today because I love you!  

 

You are kind and understanding. Yet I hesitate to write this because experience has taught me that even the kindest people sometimes struggle to fully grasp what I am about to share.

You see, I am not just a mom; I am a food allergy mom. 

And that comes with a tremendous amount of constant care you can’t truly understand until you hold the title. 

“Food allergy mom” was not a line item that I ever expected to add to my life’s resume … but here I am. 

 

Why does this matter?

 

How we treat each other matters. Without being aware that I live with food allergies and what that looks like, it might cause friction in our daily interactions. 

Sharing this part of my life with you will help us to strengthen our accord.

Your benefit: a deeper understanding of my life and an opportunity to act with compassion. 
My benefit: being fully seen and loved in a reality where simple food is life-threatening to my child. 

You can’t know what you don’t know. I get that … It would be unreasonable for me to expect you to be aware and understanding of food allergies when you have never truly been exposed to their reality. 

 

So here is a glimpse of reality … 

 

It is learning how to read labels … every single time you purchase a product. 

It is knowing that sometimes milk is not called milk or that a company doesn’t have to disclose sesame oil in a product as long as the ingredients say natural flavors. 

It is spending hours in a grocery store and coming out with no new food options 

It’s about learning all the places food proteins hide. Because they commonly exist in non-food products. That means hand soaps, art supplies, makeup, beard oil, house cleaner, toothpaste, to name a few. 

It is countless hours with doctors looking at test results that can’t tell you the severity of a potential reaction because the test only measures how likely it is that a reaction would occur.

It is scouring the internet at all hours of the night looking for answers. 

It is learning how to cook again and rethinking all your habits in the kitchen because a single mistake can lead to cross-contact making food unsafe, even life-threatening. 

It’s trying to inform your family, friends, co-workers, teachers what your needs are, making sure to be clear and accurate, without scaring them but without coming across as crazy and overbearing. 

It is about kindly speaking up to educate someone when all you want to do is scream, “what are you doing?! that could kill my child!” 

It is learning the many ways anaphylaxis looks and how to respond when the day comes that you see it. 

It is finding accessible and affordable epinephrine, the medication that saves lives.

It is praying that you never have to use it. 

It is about NEVER leaving home empty-handed. But instead with bags of stuff: auto-injectors, antihistamine, inhalers, wipes, extra clothes, and food!

It is about always mitigating risk. At the park, the library, the museum, the family picnic, the birthday party, the bus, the baseball game, the grocery store (literally everywhere)

It is about teaching my child to be aware of and respect his allergies. To advocate and speak up. Without making him scared, anxious, or feel less than and left out. 

It’s about finding people who understand food allergy life and cherishing them. 

It is about finding a place between fear and complacency so you can live life but maintain a level of protection.

It is about all of these things and SO MUCH MORE

 

I often operate in the space of fear and anxiety, which is why sometimes I come across as unreasonable, overprotective, and maybe even a little crazy. 

I spend a lot of energy pushing outside that fear because it is the only way to experience life. But some days it’s harder than others. 

I hope you can empathize with the care it takes and the anxiety that comes with managing food allergies.  

And maybe you value me enough to be mindful of your words and actions … 

 

Here are 2 simple ways to accomplish that:

Don’t assume …

 

That this is a lifestyle choice, it has changed our lifestyle, but it was not a choice.

 

That a small amount of the allergen is okay, it’s NOT. Even trace amounts of food protein can trigger anaphylaxis. 

 

That because you read a news headline you’re informed. Food allergies are multi-faceted. I promise it is more complicated than the headline. (I will know immediately if you actually read the body of the article) 

 

Food allergies are the same as an intolerance … they are not! 

 

That you need to suggest ideas to help. I know your desire to offer solutions is coming from a good place, but it just makes me feel more isolated. 

 

Ask questions … 

 

Can I do anything to make things safer for you? 

 

Where do you keep your auto-injector? Can you show me how to use it? 

 

Would you like to pick the restaurant? 

 

Do you have any treatment options? 

 

Where can I get useful information about food allergies?

 

Are you okay?

 

This is a lot to take in! It probably feels like too much … at least that’s how I felt when I found out I was a food allergy mom.

With time and practice, it feels more manageable.

Food allergies will always require extra care, but one day you will look up and realize you automatically account for them. With no cure at this time and anaphylactic episodes on the rise, your awareness and compassion are more important than I can express. 

 

I sincerely hope this has not scared you away. In fact, quite the opposite!

I shared this to provide perspective to empower you as you encounter food allergies and anaphylaxis. 

Now you have the information it’s your choice how to use it. 

 

 

With love and gratitude, 

An allergy mom 

 

 

 

Allergy Friendly Back to School Snack: WowButter Oat Bars

Allergy Friendly Back to School Snack: WowButter Oat Bars

 

It has been a busy week here in our little blue house on the hill! 

 

Shaun and I have spent the week savoring … 

 

Savoring our slow, playful days together before he heads to kindergarten on Wednesday. And savoring little bites of all the food we prepared in an attempt to ease the inevitable bustle of busy school days.

As an allergy family we have to think ahead to premake what so many other people can grab at the store. Yes, it’s probably better for us anyway, but it does lack convenience. (Which I took for granted most of my life) 

This week I focused on pre making Shaun safe food that can be frozen to help with breakfast & snacks.

If I have not said this already, let me share this allergy montra with you now … 

 

“The freezer is my friend!” … Say it with me this time, “The freezer is my friend!” 

 

We made:

Pancakes … Shaun’s favorite food 

Waffles 

Bread 

And WowButter Oat Bars 

 

All of these recipes are staples in our house but the WowButter Oat Bars are exceptional! 

Exceptionally tasty! 

Exceptionally  easy!! 

Exceptionally flexible to modification!!!  

 

These WowButter Oat Bars are an exceptionally perfect substitute to all the manufactured granola, seeds, nut bars that always have at least one of Shaun’s allergens. 

They are perfect for a grab and go snack! 

I hope you enjoy this recipe as much as we do. And for those of you with kids heading back to school, or heading to school for the first time, prayers for a safe and smooth transition. 

 

~ LC 

 

 

 

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A Skin Test Follow-Up

A Skin Test Follow-Up

 

A little over a week ago Shaun had his summer visit to his allergist. At this point, we typically check-in 4 times a year (not including food challenges or sick visits) with the intention of looking at his allergies, asthma and eczema condition. This allows us to make any changes to his care plan that are needed and keep him up to date with challenges and therapies that would open up Shaun’s diet. 

I spent the afternoon before his appointment gathering my thoughts, paperwork, and questions. I am aware that this preparation** takes extra time, time that we could use for 1,000 other things we need to be doing. (I left our family cottage early to come home and make sure things were in order for our time with Dr. H) But experience is an excellent teacher, and I know how critical it is to show up prepared for these appointments!  

 

** Prep work is a theme of allergy life! Food prep, planning meals and grocery shopping, extra vacation prep, food product research, prep a separate lunch for a family outing, prep for the beach or the baseball game … I could go on. Prep work is another insurance policy, paid for with upfront time, that makes allergy life manageable and ultimately safer!

 

At the beginning of the appointment, a medical assistant always takes Shaun’s height and weight. And I am excited to announce that Shaun officially weighs 30lbs!!! I know, 30 lbs, it seems silly but for half of his little life, we have spent countless hours focusing and stressing over his growth. He was born small but shortly after his eczema started we began to notice he had fallen off his growth curve. Shaun’s pediatrician and allergist referred us to the pediatric GI & nutrition practice leading us on a 3-year journey that I will share with you another time. But I tell you all this because 30lbs is a big win for us, in fact, we might even throw a party! 

With the appointment off to a great start, we dove into the state of Shaun’s asthma and eczema. Dr. H was happy to see and hear that it’s well managed currently and recommend that we just continue our current care plan. I’m not going to lie, it took a long time to get to a place where the care plan didn’t change with every doctor visit but here we are, no changes to the care plan and it feels really good. 

Next up, allergies! Dr. H suggests we use the appointment to look at Shaun’s environmental allergies. It had been a while and given his struggle this past spring she wanted to have more recent data in his chart. So we agreed to do an environmental skin panel and would test his food allergies by blood work (adding his food allergies to the skin panel would have been a lot given the environmental panel required 24 skin pricks). 

 

 

This was the part of the appointment I was grateful to have John with me! Shaun is now old enough to know what was about to happen and he got incredibly upset. I held Shaun until they were ready to apply the skin test. Then I was able to pass him to John who could hold him tightly enough to give the staff a chance to administer the test. 

 

Is it hard to watch your child freak out and scream and squirm because they are upset by the skin test? 

 

Yes, it is horribly hard and frankly heartbreaking. 

 

But I am an adult. And I know that this test, although momentarily uncomfortable and upsetting (for him and me), will yield valuable information. Information that will help us as we continue to expand his world! 

So despite the screams forcing their way out of his little body, we move forward with the test. It is important. 

Once the test has been administered to his skin we do our best to comfort him as we wait the required 15 minutes for his body to react. A nigh-night (blankie/woobie/etc.), dum dum pop, a YouTube video about buoyancy and density (following up on some concepts we discussed while at the ocean) and he was calmer and we were ready for Dr. H to look at his skin. 

We lifted his shirt and I laughed a little … because sometimes in life it’s laugh or cry. 

 

An untrained eye could have looked at Shaun’s back and known that he is allergic to almost every environmental stimulus they tested him for. 

 

 

And even though I anticipated this result before we arrived for the appointment, there is something that sinks inside you when you see it painted in bright red and white splotches on your child back. 

 

Knowing this did give us the opportunity to discuss the possible benefits of allergy shots for Shaun and what that entails. So we will take the information given to us, by Dr. H, do more research and talk with Shaun about if this is something we want to start with him. This therapy is not comfortable short term (who wants to go get weekly shots?) but might provide him major relief long-term. 

We wrapped up our appointment by verifying the prescription refills he needs, getting hard copies of the necessary school forms for September and leaving with a lab order for blood work. 

Overall, it was a great appointment. We were able to cover everything we needed to discuss. We gathered updated information about Shaun’s current response to environmental allergies and we left with the forms and medications we need until we return in November. 

I’m so grateful for Dr. H and the staff at CTA&A. I know Shaun has the best care! And as an allergy mom, I can’t ask for anything more. 

 

To great doctors, 

 

~ LC 

 

P.S. – (Is a ps a thing in a blog?) Shaun and I went this week to get his blood work done. The screams were worse than the skin test but we both survived. Nothing a game of mini-golf can’t fix! Results will be in soon, I will keep you posted! 

 

 

 

 

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How to Meal Plan and Why It Matters!

How to Meal Plan and Why It Matters!

 

It’s 4:30 in the afternoon on my way home from work. I slow down for a red light and Shaun pipes up from the back, “mom what’s for dinner tonight?” 

 

Nothing is defrosted. 

 

I haven’t been shopping in at least a week and a half. 

And we are out of our allergy-friendly staples. 

 

Can you relate? 

 

Food allergies or not I feel like at some point we all struggle with staying ahead of the “what’s for dinner” question. Though having food allergies definitely complicates this problem. (I can’t just pick up a pizza on the way home and call it a day.) 

And although I am aware of a helpful solution I don’t always choose to take advantage of it …

 

The solution?! 

 

Meal Planning!!!! 

 

Here is how I look at it …

When I put the time and effort into making a weekly meal plan I save time & money, eliminate frustration and eat healthier! 

I save time trying to scrape something together for dinner at the last second. And instead, I can spend that time with my family!

I save money when I use a meal plan. I know what and how much food to buy each week. Thus spending less and wasting less. 

I eliminate the frustration of last-minute scrambling to make a meal that is Shaun safe and balanced in nutrition. Instead, I jump into the meal; often finding places for Shaun to help me cook! (When I don’t know what my plan is it is hard to let Shaun help with the cooking, which he loves and is a necessary skill for him to learn) 

We eat healthier because I have more whole foods in my kitchen! 

 

The upshot, meal planning for the win. 

 

So here is my method: 
  1. Block off time on your calendar to plan your meals before the start of each week.
  2. Keep all your favorite allergy-friendly recipes together. This makes it easy to reference them.
  3. Grab your blank weekly meal plan worksheet. 
  4. Start with the first column of the worksheet: menu.  Identify days you don’t need to cook or will eat leftovers (eating out, dinner at moms house, soccer practice) 
  5. Then for the days that remain pick from your recipes to complete your meals for the week. 
  6. Next, pull the recipes you have chosen for the week ahead and figure out what ingredients you need. Use the second column, shopping, to record what and how much you need. 
  7. Cut the columns apart, the menu goes on the frigid with the recipe cards for the week. And the shopping list goes with you … well … shopping. 

 

 

A few tips …
  • I fill out my worksheet on Saturday for the Monday ahead. (That’s why my meal plan page starts with Monday.) You can adjust this by starting with any day that works for you. 
  • I tend to cook extra servings for a meal. I like to have leftovers! Both for the purpose of eating the meal again (John takes leftovers for lunch) or in some cases to use the ingredients in a new dish. (ie. roasted chicken on Monday can be used in a chicken wrap on Wednesday). This type of efficiency is really helpful now that we live with food allergies. 
  • I print my meal plan worksheet a week ahead of the planning. I leave it on the kitchen counter so as we run out of something I can just put it into the shopping list. Then when Saturday rolls around I plan my meals and complete my shopping list. 
  • I do a combination of shopping in the store and online (Yeah for Instacart!!) but in both cases, I fill out my paper shopping list. It helps me stay organized; I have found that if I try to input my list right to the computer I always miss a key ingredient leaving me running out to the store. 

 

Right now, I only plan dinners and leave breakfast and lunch more open. I know what we like to have in the house and make sure it gets included on my shopping list if we are low on something. It works for my family. 

Having said that you can easily plan breakfasts and lunches on your menu sheet if you decide that is what works for you!

As with anything in life, I cycle in and out of meal planning but when I stick to it my week is much more enjoyable! 

So let’s start together, right now! 

Let’s put in the extra time upfront, save money, ease the stress of dinnertime and eat healthier!!  

 

Happy Planning! 

 

~ LC 

 

 

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When Planning Your Beach Trip Still Falls Short

When Planning Your Beach Trip Still Falls Short

 

What’s that saying about “the best-laid plans”…?

 

As an allergy momma, I understand this sentiment intimately. 

Vigilance and planning make it so Shaun can have happy, healthy experiences out in the world. But you see sometimes even our best-laid plans (the ones based on trial and error, research and our care plan), fall short and end with some type of reaction. 

Last week, we shared some ideas about How to Enjoy a Beach Day with Food Allergies. It seemed like a timely blog post as we were headed to our family cottage to enjoy the beach for a few days. 

 

 

The day after our post went up, my mom (Shaun’s Mimi) and I began to plan and pack to take Shaun down to the shore for the afternoon. 

Shaun safe food …. Check
Medication and care plan … Check
Blue Lizard Sunscreen … Check
Sand chair, sand toys & umbrella … Check 
Long sleeve rash guard shirt … Check
Full coverage beach hat … Check 
Extra 100% cotton, clean, dry clothes … Check 

 

Finally, we have the car packed up and we head down to the beach. 

We Arrive. Unpack the car, off to the sand to scope out a spot that seems open, close enough to the water, but not too far from the bathrooms and that will allow for easy egress should we need to head out in a hurry. 

My mom and Shaun headed down to the water’s edge as I set up our little space. I put in the umbrella, got some towels set up and put our medications and food cooler in the shade. 

 

 

I walked down to the water …  and I took a nice deep breath of ocean air! I enjoyed the interaction between Shaun and Mimi as they waded a little deeper into the waves. Feeling grateful and peaceful I returned to our spot on the sand, settled into my chair and grabbed my book. 

 

Not even one page of reading and Shaun was standing in front of me shivering. Bouncing up and down at his knees just a little bit … he was clearly uncomfortable. I suggested he lay in the sun, on the towel, so he could warm up and dry off a bit. But he continued to bounce and tell me “momma I can’t lay down.” 

Finally, after a few minutes of frustrating back and forth about laying down to warm up, he asked to go to the potty. Off we went back up the sand toward the bathhouse, used the potty and then back to the sand we marched. 

Hopeful that Shaun was now content, I planned on picking my book back up while he spent some time building in the sand! 

 

Unfortunately, as soon as we arrived back at our spot on the beach Shaun started itching. For Shaun itching happens often so there was no need to panic or pack up. 

 

Me: “Hey buddy, what’s going on?’ (I try to keep my questions open-ended so I am not giving him words he will just repeat back to me) 
Shaun: “My knee pits itch” 
Me: “I see that … any other spots itchy?”
Shaun: “No” 

 

But I could see he had already started scratching around his waistband and his crotch … 

 

I decided we needed to take off his clothes to get a look at all his skin. Mimi and I help him get off his wet shirt and hold up a blanket as we take off his bathing suit (we are trying to teach him he can’t just be naked anywhere he wants … ahhhh parenthood)

The creases of his knees were red and puffy with hives but the rest of his body seemed okay. I wrapped him in the towel, sat in the shade with him lying across me while Mimi got us some ice packs from the cooler in an attempt to calm down his hives. 

 

 

For the next few minutes, I tried to settle him. He rolled this way and that. He squirmed. He began to itch his ears and eyes. So I stood him back up and opened the towel to look at him again … he had hives on his torso, behind his ears and in the creases of his thighs. So I scooped him up in the towel and quickly made my way to the bathhouse where they have freshwater showers. 

As soon as I turned the handle to rinse Shaun off he darted out of the water screaming “its ice-cold!!!”

 

Yes, it was time to go home … 

 

We had not even been there for 30 minutes. 

 

I knew with the way the hives were spreading that if we didn’t rinse him in freshwater and get his skin covered in clean dry clothes the hives were not going to calm down. 

 

 

So back to the sand we went to get Mimi and pack up all the stuff. I didn’t want to bring Shaun back onto the sand so I sat him at the entrance (that was in my view 100% of the time), with a lifeguard. 

Lugging Shaun and all our stuff back to the car as quickly as possible so we could return to the cottage to get his hives under control. 

When we arrived it was straight to the shower, a dose of hydroxyzine, ointment and cotton PJs (long pants / long sleeves) And within about 30 minutes he was finally more comfortable. 

 

Shaun stayed amazingly calm and happy despite the discomfort of the hives. 
Was it life-threatening? No, not this time, thank God! 

 

However, it was uncomfortable. It was stressful. It ended our afternoon at the beach before it even really began. It was disappointing and frustrating but it will not stop us from going back! 

What caused his hives? Almost impossible to answer. Often with Shaun’s hives, we don’t know the exact trigger: too hot, too cold, something in the ocean, the detergent residue on his bathing suit, the sand, something on the toilet seat that contacted his skin? And yes, this makes me crazy because without knowing the cause we can’t modify our plan to prevent it next time. 

See, allergy living can put you into a bubble if you let it. You must be relentless and determined to keep engaging even when, despite your careful, thoughtful preparation, you end up having a reaction. 

John and I feel it is critical to teach Shaun how to avoid becoming isolated! How to live a full safe life even though sometimes his beach trip will be cut short due to hives. 

 

Here is to a hive free beach trip next time, 

 

~ LC 

 

 

 

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