There are so many challenges associated with being a parent. Books and blogs and experts exist on every topic possible. All of them try to prepare you for certain items. Birth. Swaddling. Feeding. The standards of what it takes to keep this precious little human alive when you have no flipping idea of what you are doing.
We were incredibly lucky to have two fairly uneventful pregnancies. Minor blips here and there but at the end we had two wonderfully healthy, sweet little boys. I’m not going to say 36.5 hours of labor with #1 was what I expected but I wouldn’t trade the end result for the world.
Once that sweet baby comes home it’s all about taking it day-by-day. Adjusting to this crying, pooping, sleepy, perfect little human being in your home when 24 hours before it was just the two of you. When our first was about 6 weeks old, I knew something wasn’t right. He was constantly getting sick after he ate. The only correlation I could make to when/why it happened was whether I had eaten dairy and other specific foods. After discussing the issue with our pediatrician, the culprit became fairly obvious. Allergies. Allergies went hand-in-hand with the severe eczema he also suffered from. Unfortunately, they don’t test for allergies until the 1-year appointment. So for the next 46 weeks, we lived based on the assumption that he had allergies.
I took out dairy, eggs, peanuts, tree nuts, wheat and soy from my diet in hopes that he would see some relief. And he did. So while missing out on my Digornio pizzas and my Wisconsin- bred need for cheese was a challenge, it was worth it. At a year, we made our visit to his allergist and confirmed he had allergies to peanuts, tree nuts, dairy and egg. We may have been 46 weeks into monitoring what I ate but it was day 1 of really starting our allergy journey. And what a journey it has been. We have learned so much these last few years and tried to empower ourselves with as much knowledge as possible to ensure we can keep him safe and healthy.
One of the biggest lessons is a real doozy. It’s a tough one to verbalize, put on paper and see it writing. It’s this: Food can kill my child. It’s a reality we live with every day. And while it may seem overdramatic and harsh, it truly is the world we live in. And it will most likely be his reality for the rest of his life. Allergies pervade our lives on a daily basis. There is not a moment it’s not in the my thoughts. Everything thing we do, place we visit, person we spend time with – I have to keep allergies at the forefront of my brain. To not, could lead to drastic, if not, fatal consequences for our son.
So much of what we did prior to allergies is different. Grocery shopping, holidays, visiting others…none of it is the same.
Label reading is a staple now. Understanding what items are safe to bring into our home starts with the label. And it’s not reading the label one time. It’s reading the same label every single time you pick up an item at the grocery store. Knowing that on one trip, those veggies sticks are safe (and a favorite) but a couple weeks later you grab a few bags and head home only to discovery they are now produced in a nut facility. Even items made in a nut facility are not safe due to the severity of his allergy and the possibility of cross contamination. Recognizing that the US does not acknowledge sesame as a top allergen is another big one. Therefore companies do not have to identify it as such in that beautiful little allergy box you see on all food boxes. This means that we need to read through every ingredient on that ingredient list and know how sesame can be incorporated into foods. And how it is identified. Did you know that casein is a protein found in dairy products? It’s another thing you have to stay on your toes about. Because it means we are not just looking for dairy to be listed. We are also looking for casein and any other form dairy could be in the food.
Then you find the glorious but limited allergy-friendly food section. So much vegan food. Cheeses. Sour cream. Cream cheese. No-nut butters. And it’s heaven in a short grocery aisle. Something you can count on until you can’t. Until they change the ingredients and one week they’re safe and the next their recipe has changed and the cheese now includes chickpeas. Another no-no.
We identified allergies to both chick peas and sesame as we expanded his somewhat limited diet. Sesame we discovered after enjoying a trip to the farmers market and allowing him to nibble on a sesame seed bagel (mom’s favorite) between the market and our weekly (pre-Covid) trip to the grocery store. By the time we arrived at the store his eyes were swelling up and we were instantly on the phone to our pediatrician to determine how much Benadryl to give him. We had 15 minutes to see a reduction in the swelling or would have to administer his EpiPen. Or if his conditioned worsened at all, it was an immediate EpiPen situation. Luckily we were at the grocery store and picked up Benadryl immediately after the call. Although the poor gentleman helping this scared mama had about two more seconds to help me find the medicine before I was going to lose my mind. And thank goodness that within 5 minutes of having him take the Benadryl, we saw a significant reduction in swelling. Benadryl is amazing. This situation is also why we no longer allow any food to be eaten in the car. Chick peas were a hit one day for lunch but shortly after finishing the meal his face was breaking out and we knew what that meant. Both have now been confirmed as allergies with our allergist. We have since never gone anywhere without Benadryl in our diaper bag. The EpiPens have always been with us but after the sesame incident, Benadryl became another must.
But it’s not just food. He also has environmental allergies. We had to rehome our sweet puppy (with family) when we realized our son was allergic. He’s had reactions to certain cleaning solutions being used in a different room than he was playing in. So we’ve switched to all natural cleaning products. Been advised that any scented items will cause a reaction. No candles, no air fresheners. Nothing along those lines. Laundry detergent has to be scent and dye-free. Certain types of fabric can cause him to have reactions. Different seasons are brutal on him. He loves being outside so much but it can be torture on his little body. A little time outside and his eyes get red and puffy, the constant itchiness he has explodes and rocks him even more than it normally does. And this is all in combination with his eczema that causes him to scratch until he bleeds. My father has allergies and eczema and during his last visit out here, described it as feeling as if your body is on fire from the inside. He wears lotion gloves at night that are meant to protect his body from scratching as well as help heal his hands from the day. He gets a daily dose a Zyrtec. We wipe his face and body down when allergens are high outside. Change his clothes. It’s just another layer to our life with allergies.
It’s easy…easier when we’re at home and have total control over all the food that comes in the house and what he comes into contact with. The challenges now lie in visits to friends and family, holidays, birthdays and social events. Anything and everything in between where food is present. Food is always present.
We make him his own food for any function we attend. If it’s Thanksgiving, we make safe turkey, mashed potatoes, stuffing, etc. so that he can partake in everything everyone else is without cause for concern. Bring desserts for birthdays and such. It’s no ones job but ours to ensure that he has what he needs in those moments.
Another thing that never crossed my mind pre-allergies was how often people feed kids at functions. How often I’ve done that before we had our kids. And never thought twice about it. But allergy life is different. He cannot leave our sight at any event because it’s so normal and natural to give a kid a cookie or a snack or something to eat when they ask. But ours is different. And so someone who understands the nature and severity of his allergies has to be with him at all times and be his advocate. To ensure that no one would offer him something that could make him sick. Or worse.
I’ve had family members push back. Disagree and say that it’s okay to serve certain foods. We only truly ask one thing: No nuts/nut products of any kind when we are around. Butter he can touch. He’ll have a reaction but he’ll survive. Same with dairy. But nuts. Nuts can kill him. So if you’re going to take me to task about putting out a nut-based food item because it’s more important than my child’s life at least I know where you stand and we simply leave the function. It’s only ever happened once. On the other end of the spectrum, we’ve had family prep all those that are going to be at an event that no item is to even come in contact with nuts. Explain to others in our presence that certain snacks can’t be brought out while we are around. And it’s those moments and those people that make life a little less stressful, anxiety ridden and dangerous. Those that bring the happy tears. And there is no way to say thank you enough to those that have tried to understand what it truly means to be an allergy family and a child that requires different attention in certain areas.
School is going to be our next big challenge. The boys are currently home with a nanny, but our oldest will soon be going to preschool. Our past experiences have not been great. We’ve had them in daycare. In order for him to attend, we had to get lengthy documents filled out by our pediatrician, had a face-to-face meeting to discuss our allergy plan and ensured we had copious amount of medicines, lotions, hand soap and such that were safe for him to use. I thought we had made it clear how severe his allergies were. How we were entrusting them to care for him as we do. And then a few weeks in, his teacher approached me to discuss the next’s days activities. A game with eggs. I politely reminded her that our son would have to sit that one out and would have to remain out of the room to make sure he didn’t come into contact with any child that may have eggs on their hands. She was shocked that he could not participate. I was shocked at her shock. He’s allergic to eggs. Cannot touch them. Cannot be touched by anyone who has eggs on them. And toddlers playing with eggs only seem like a recipe for disaster and broken eggs and a several allergic reaction.
It was a reminder to me that no one will ever be able to care for him the way that we do. But that’s because we are his parents. And that we are also not infallible. That I am going to have to be okay with him being with others that may not understand to the level that we do what his allergies mean. Mistakes are going to be made but I have to make sure that those caring for him have the knowledge and know-how to prevent reactions as best as they can and respond appropriately if it does happen. Until you see his face swell up, his eyes and/or throat get puffy, his face break out and the itchiness take over his body, you do not understand what it does to his little body.
Right now it’s our job to absorb the gravity of the situation. The nature of his allergies. But every day it’s also our job to empower him to understand what his allergies mean. To let him know that there are certain foods he cannot eat. What it would look and “feel” like if we had to administer his EpiPen. Why he takes Zyrtec daily and how it helps him. There are Daniel Tiger books. Where Daniel has an allergy just like him. He knows that he has No Nut butter but other kids can have peanut butter. We identify that he has a special cheese, coconut yogurt and that in some instances there are simply foods he cannot eat and we may not be able to offer a replacement.
I want to give him every opportunity in life. To find someone to love, travel, go to school, find a career he enjoys. But he also needs to understand that before he kisses someone, he will need to know if they’ve eaten peanut butter lately. How to identify his allergens on food labels that may not be in English. That he will need to be diligent in always having his EpiPen on his body because the time you have to respond to a severe allergic reaction is finite and without the proper response, your body may not be able to recover. And without instilling fear, I again want to empower him with the knowledge and understanding of the situation he’s in. Help him be his own best advocate and perhaps an advocate for others with allergies.
Our latest allergy appointment was disappointing. There was no progress between last year and this. Meaning that his reactions were just a strong this year as they were last. A number of kids grow out of dairy and egg allergies. Far fewer get beyond their peanut allergy. Not seeing any change was disheartening. His allergist suggested we regularly get him baked items with egg and dairy. His levels are such that he can handle dairy and egg products baked in a muffin/cake/cookie if baked at a high enough temperature for a long enough time. Since the appointment we’ve been working to bake different foods for him every week. This week he’s requested blueberry muffins. If it helps move that gauge and give us hope that one day he may be able to touch/eat dairy and eggs then I will bake as many blueberry muffins as his little heart desires.
Each day we try and attack this process from any angle we can to give him the best possible outcomes. Our next move will be in February when we get him enrolled (fingers crossed) in an OIT program at Mass General. The program only lasts a few months (if successful), but oral immunotherapy conditions the body to be able to withstand more and more of an allergen. We will start with peanuts. He will start with a few specks of a peanut flour. Gradually increasing the dose every two weeks, the goal is that he will be able to consume an entire peanut without having an anaphylactic reaction. This does not mean we can forget about the EpiPen. It does not mean he’s beyond a peanut allergy. But it does give some leeway in case of accident ingestion or contact. They are also looking at starting a sesame OIT program. We will do what we can to get him into that one too.
And from there, we will take it one day at a time. Continue to read about new programs, new ways to introduce him to baked dairy and egg, work to best educate ourselves and those close in our lives to understand where he is at and what his allergies mean for our everyday lives. Maintain the respect that we have for allergies and what it can do to his life. Empower him to know that although he may be “different” in the foods that he can eat, touch, be around, it in no way makes him less than. Give him every opportunity to be safe and healthy as we navigate this life together.
I suppose I say all of this to share what our experience has been thus far with his allergies. But also to let any other parents just starting this journey (or continuing to forge their own path) know that they are not alone. That we can most certainly connect and chat about the process. I am by no means an expert but can definitely share some of the tricks of the trade that we’ve learned over the last few years. I’d love to hear yours as well. Either way, from here on out, we will continue to learn and grow as we navigate this world and find the best ways to advocate for our sweet little munchkin butt.
Too Much Laundry, Not Enough Wine 