When two disabilities collide…

Food Allergies, Our Latest Adventures

Olivia was born with two disabilities:

1 – Persistent Fetal Vasculature which has caused near blindness in her right eye requiring her to wear a contact lens and patch daily

2 – Life threatening food allergies to peanuts, tree nuts, dairy, eggs and wheat – resulting in strict avoidance of anything that may contain, contains or has come in contact with those ingredients, for fear of an anaphylactic reaction.

These two disabilities are pretty separate entaties. Both serious in their own way but also completely their own thing. Until today!

Olivia has been squinting her eye a lot these past couple days. At first, we thought she was squinting her eye because her contact was bothering her. But even when we took her contact lens out, she would still squint her eye. She even got to the point where she would say “momma”, get my attention, point to her Nemo eye and sign all done for me to take the contact out. So, we decided to take her in to see the lens doctor today – just to be safe. With everything Olivia has gone through concerning her eye, we never wait and see – we always get her checked out. Due to the nature of her condition, we are constantly on the look out for retinal detachment and Glaucoma – two issues that are fairly common for people with PFV. Anything out of the norm warrants a doctor visit.

When we got there, the doctor took a look at her eyes and was shocked at how well behaved and amazing Olivia was. She sat there, completely still, as the doctor shined a super bright light into her eyes. Since Olivia did so well, the doctor was even able to pull her up to a machine to check under her eyelid – there is no better compliment than someone saying “there is no way this little girl is only 18 months old!”

When she took a look under her eye, she saw little bumps that had formed due to….you guessed it…ALLERGIES. Because of all of the allergens and heightened pollen count outside, Olivia’s eyes developed these bumps that are making it uncomfortable to have her contact in. We were prescribed some allergy drops and a new cleaning routine for her contact lens. When we know the pollen count is high or during a change of season, the world we see a lot more Olivia in cute glasses so her eye has time to breath.

During the appointment, I said to the doctor that I can’t believe it’s allergies of all things. Now she has seasonal allergies affecting her eye on top of her food allergies! That’s when the doctor explained that Olivia suffers from something call atopy which is a “genetic tendency to develop allergic diseases”. Atopy is “associated with heightened immune responses to common allergens, especially inhaled allergens and food allergens” (AAAI). She explained that kids like Olivia are just more susceptible to allergies affecting them in more ways that one.

So, today was the day that both of her disabilities collided into one. But whichever we are dealing with on that given day, there is one thing I know for certain. My warrior daughter is going to show up with a smile on her face, a snack in one hand, her ‘baby’ in the other and a high pitched “HI” coming out of her mouth. She is the happiest, most resilient kid I’ve ever known and I am proud to navigate these uncharted waters with her. So even with a new contact lens cleaning routine, new eye drops and glasses a few more days a week, we will continue to just keep patching.

Favorite safe foods for our baby with food allergies

Food Allergies, Our Latest Adventures

**Disclaimer: I am not a health care provider or allergist. These recommendations are what work well for my family with a child allergic to peanuts, tree nuts, wheat, eggs and dairy. But what works and is safe for her, may not be safe for another. As always read labels and triple check that what you are eating is safe for you. I am not sponsored or affiliated with any of these products and have linked them for your convenience. Thanks for reading!**

When Olivia was diagnosed with so many life threatening food allergies, my first thought was what can we feed her?? What can I feed her that is free from nuts, wheat, eggs and dairy? And that means free from containing them AND free from cross contamination?? Doesn’t breakfast consist of eggs and toast?!! My husband and I went to the grocery store only to be completely overwhelmed. It felt like everything either contained, may contain or was made in the same facility as at least one of her food allergies. The vision I had in my head of my daughter enjoying pizza, bread, Mac and cheese, cookies – all the foods kids can freely enjoy – was crushed. Or so I thought.

Over the next few weeks I did so much research on how to feed my little girl. We took some wonderful advice from a family friend – thank you Elizabeth! – and searched for some good options. I did not want her food allergies to define Olivia and I knew there had to be a way through our fear to the other side! And there certainly was :). So many companies make really delicious and safe foods for Olivia. And when I took a step back and thought about what we eat, I realized most of what we eat can be modified so its safe for Olivia. This diagnosis is SO over whelming if you have never had to deal with food allergies. I hope that some of what we have tried may help you feel a little less over whelmed. Here are some of Olivia’s favorite safe meals! 🙂

Breakfast:

Snacks:

Lunch&Dinner:

    turkey or chicken breast
    Ham steak

Drinks:

Extras:

As we continue on this food allergy adventure, I know our pantry will continue to grow. How I feel about dealing with food allergies since Olivia’s diagnosis has changed so much. I have gone from being constantly anxiety ridden and terrified to being a lot more confident and sure of myself in the kitchen. Remember we must be prepared, not paranoid because not everyone is perfect.

So just keep cooking, trying, eating and as always advocating for even more delicious and safe options!!

Reading labels…a life or death job.

Food Allergies, Our Latest Adventures

I never thought I’d be that mom. You know the one. The mom that is chasing her kid around the park with a wet wipe, the mom who wipes the entire shopping cart down just to put a carriage protector on anyway, or the mom that reads every single label on the food the entire family eats. But that’s me. I am that over protective, ready for anything type of mom because I have to be. I wasn’t given a choice when I became a mom – there was no menu that read: “circle stressed or relaxed mom” as a preference. But in order to keep my daughter safe, I will be that mom every damn day.

So in being “that” mom, I am extremely aware of the ingredients that are put in Olivia’s food. In the United States, food labeling for the top 8 allergens, on most prepared foods, is required by law. For example, the list of ingredients will have the allergen bold, in parentheses or at the end in a ‘contains’ statement.  Unfortunately, companies do not have to put whether or not the food was produced on shared lines with allergens or if they ‘may contain’ the allergen – these statements are completely voluntary. For kids that have very serious food allergies, producing food on shared lines with their allergen can bring about a deadly reaction so it is scary that companies are not required to disclose that information. This means that these foods may be cross contaminated with the food allergy, rendering it unsafe to consume.

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The regulation of labels also only applies to the top 8 food allergies in the United States: peanuts, tree nuts, wheat, dairy, eggs, soy, shellfish, or fish. This excludes the 9th top food allergen – sesame. So needless to say, food labeling has a long way to go, but believe it or not, the United States is better than most places when it comes to being transparent about what’s in the food we eat.

Since becoming a food allergy momma, I have gotten really good at reading labels. I remember when I first wanted to bake Olivia cookies so I went to the store and picked up some Red Mills gluten free flour. I was SO excited until I got home and read – in the smallest, white print – that is produced in the same facility as tree nuts. It was so small that I didn’t even see it in the store – despite having checked twice! Now that I am a seasoned pro at reading labels, I feel more confident that I wouldn’t make a mistake like that again. But still, there are times I find myself frustrated and discouraged regarding food labeling or lack there of.

Olivia has always been a tiny girl so in order to increase her calorie intake, her pediatrician recommended that she start drinking formula to supplement her diet. Due to shared lines and same facilities, there are no safe milks that Olivia can drink without risk of cross contamination. With her interest in breast feeding starting to decrease and the lack of milk options, I was open to the idea of giving her a supplement. I reminded the doctor of her food allergies and was reassured that they make formula for kids like Olivia! She went into the office and came back with three “hypoallergenic” options for us to try. She read the labels in front of me and stated that they only listed Soy as an ingredient that could be tricky. Lucky for us, soy is not one of allergies so I took all three formula containers home to try out.

When we got home, I decided to – of course – read the labels again. Even though the  doctor assured me that they were safe, I know now from my experience with food allergies thus far, that you can’t trust anyone unless you read it yourself. I picked up the first formula called ‘Similac Alimentum For Food Allergies and Colic’ and started to read – and what do you know…the second ingredient listed was “CASEIN HYDROLYSATE [DERIVED FROM MILK]”. I was STUNNED. The second ingredient could kill my daughter and yet a doctor assured me that this was safe. And not only that, but the milk ingredient was hidden in about 50+ other ingredients, in the same font and type – nothing made this ingredient stand out or put up any red flags for people with allergies. I put it to the side and thought well, at least there are two other options. Picked up the next formula called ‘Nutramigen Hypoallergenic Infant Formula Powder with Iron’ and to my dismay – the same ingredient. This time is was the third ingredient but it listed “CASEIN HYDROLYSATE (MILK). At the bottom it stated “MODIFIED TO BE BETTER TOLERATED IN MILK-ALLERGIC BABIES”. Yet again, the milk ingredient was hidden among 50+ capitalized ingredients. This had me so upset. Yet again, another unsafe product for Olivia. For kids that are this allergic to milk, they cannot be exposed to their allergen. There is no “better tolerated in milk-allergic babies” for these kids. It needs to be complete avoidance but yet this was recommended to me by a professional. Luckily, the third formula seems to be safe enough to try, so I will let you all know what she thinks of it.

I was beside myself that my doctor would recommend formula and send me home with safe samples only to find that 2/3 could have really harmed her. And we LOVE Olivia’s pediatrician but this just goes to show the lack of knowledge and information that is out there about food allergies. This is a reminder to read every single table, ever single time. It doesn’t matter who tells you the food is safe, it doesn’t matter who prepared the food or from what store you purchased the store – you read that label every single time. Thank God I read this label before feeding it to my daughter. We need to continue to educate everyone around us – companies, professionals and people need to be held accountable. Food allergies are not a diet choice, but rather a serious disease and the solution is strict avoidance. We must continue to spread what we know, change policy on how companies label and what is required of them. We have the power to keep our kids safe – so just keep advocating.

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