My Story
By Melissa Mastrogiovanni
I’ve always wanted children. In fact, there was a time when I was only going to college because it was expected. I didn’t know what I wanted to be as a grown-up. But I did know I wanted to be a Mom. When you’ve wanted something so badly, and that day finally comes, you hold your child in your arms and your life completely changes. I always say that pregnancy is just gently preparing you for what your life will be like after your child is born. For me, pregnancy was full of roller coaster emotions, constant morning sickness, difficulty sleeping, and complete with utter happiness. Early on in the pregnancy, I craved Nilla Wafers and milk. I was going through a box and gallon of the stuff every three days! It is amazing to look back at the things that got me through my pregnancy and that what made me feel good are two things that could now kill my child.
When my son, Bradán Sean, was a young baby, he had eczema and baby acne. This is a common occurrence. The acne faded and we learned to control the eczema with Aveeno Eczema lotion at every diaper change. When Bradán was 4 months old, my husband, Jason, and I started noticing red splotches and hives that would appear on his body. We thought it was the heat. When he was 6 months old, we started introducing him to formula (although he was breast-fed, our pediatrician wanted him exposed to formula). Bradán rejected it every time. He would literally spit the bottle out as soon as it touched his lips. So we pushed. We tried sneaking it in to his food. When we put it in his cereal, he would take a bite, and then sign (we were teaching him ASL) “all done.” So we pushed even more by getting a sensitive stomach formula and finally snuck it into some cereal that he actually ate. That night, my husband and I were up all night with him as our son threw up and got lethargic. We thought he had a bug that was going around. Only months later did we understand that our son was having a severe allergic reaction. It was in the next several weeks after that incident that we put more and more clues together by watching his reactions to things he was eating. He would often sign “all done” after eating very little if anything of some new foods. We also realized that after we would eat cereal and kiss our son, he would break out in hives where we had kissed him. Imagine seeing your son suffering after a kiss from his parents! We finally pushed for our pediatrician to run blood work at 10 months of age. Our pediatrician warned us that it was unlikely that he had allergies because he was breast-fed, and that the result of the blood work might be unreliable on a baby so young.
A week after his blood work was done, our pediatrician called to tell us to make an appointment with an allergist and that the allergist would go over the results of the blood work. We made the first appointment at around 11 months. My husband and I took off from work and brought our son in to see the allergist. She reviewed the results of the blood work and asked us about what reactions we were seeing at home. She then explained that our son is highly allergic to milk and egg whites. She wanted us to schedule an appointment to do a skin test. But before we left, she wrote us a script for an EpiPen and had us practice on ourselves about five times each. We left the office feeling overwhelmed and out of sorts. Bradán’s first birthday was coming up and we didn’t know what we were going to do for his cake (the most important thing on our minds at the time!).
We made it through Bradán’s first birthday with an altered chocolate cake that wasn’t horrible…but certainly wasn’t great. On his first birthday, we also took him in for his first skin test. The allergist wouldn’t even test milk because of how high his blood work was and our stories of his reactions. Egg was wiped off after five minutes. It was clear: he was allergic to milk and egg whites. Our allergist encouraged us to try eggs baked in foods such as cookies and see if he had a reaction. Other than that, we were instructed to avoid his allergens.
In the next two years, we found ourselves sending our son to the hospital for anaphylaxis a total of three times (two times I administered epinephrine). The first time (shortly after finding out about his allergies), we were uneducated on food allergies and were also in partial denial of how serious the situation was. Bradán is technically allergic to egg whites. So making hard-boiled eggs and giving him just the yolk should be fine, right? After one bite he was vomiting and he became tired and lethargic because his blood pressure dropped to dangerously low levels. But we were unaware. This isn’t like the anaphylactic reactions you see in movies. We asked, “Is this what it looks like?” “Should we use the EpiPen?” We chose not to use the EpiPen on him (big mistake). Luckily we lived across the street from the hospital at the time so we decided to take him to the ER. There they gave him epinephrine, steroids, and Benedryl. The doctor ever so kindly and non-accusatorily reminded us to never hesitate on using the EpiPen. He explained that it will not hurt him and that it is more important to be safe. Lesson learned. The next time I had to use the EpiPen, I did not hesitate. And the third time, I really did not hesitate. Yes, two more times in two years.
When we experienced our second anaphylaxis event, we were in the middle of a move and we think he might have gotten cow’s milk instead of his almond milk. His poor face puffed up with hives and he was red all over. As soon as he vomited, I calmly (at least I tried to be as calm as possible) told him that I was going to use his EpiPen (he plays with the trainer and watches me train everyone who comes into the house, so he wasn’t afraid of it). He did amazing! We were then rushed to the ER. I think we were there for about six hours where (same as the with the first ER visit) he was given Benedryl and steroids.
The third time (and so far, the last time) we experienced an anaphylaxis event was because I gave him a quarter of a walnut. No tests had come back that he was allergic to walnuts! But at two and a half years old (with his sleeping four month old brother in the other room), he started having a reaction. By the time we got to the ER, he was red and swollen all over his body and his blood pressure was dropping rapidly. My husband was at work at the time, so it was just me and the boys. This reaction resulted in a second dose of epinephrine and a 24 hour visit to the hospital which was not fully covered by insurance. Being in the hospital was both emotionally overwhelming and a frustrating experience for us. We were there for a food allergy, and it was nearly impossible to get him a safe meal. I was literally in tears trying to just get him a peanut butter and jelly sandwich or a hamburger without the bread!
After those three anaphylaxis events, we thought we had his allergies well-managed and under control. We were living our lives as normal. My husband and I were getting adventurous with our food (with safe ingredients), and we decided to cook a lamb dish. While we were cooking, my son was in the other room, watching a movie, and suddenly started having a reaction: heavy breathing and coughing. Fear set in and we reacted as quickly as we could. We halted the cooking, cleared out the food we were preparing and gave him his inhaler. When I called his allergist, I told her that the only ingredient that was different was the lamb. She said that we could certainly do a skin test on lamb, but a lamb allergy was pretty uncommon. But I needed to know and took her up on the offer to do a skin test on the lamb. It was confirmed: My son is allergic to lamb! Lamb – of all things!
So, as of today, Bradán is allergic to the following: milk, eggs, tree nuts, lamb (anaphylactic to all of these), and latex. We also avoid peanuts and sesame due to cross reactions (both of these allergens are new to us and have recently been discovered through mild reactions). Unfortunately, we have learned about all of these allergies the hard way. But as bad as it is, I read about other kids on my Facebook food and allergy support groups and I realize that I can’t complain. With these allergies, I am so thankful that the vegan culture is as active as it is because it has made allergen-free foods (for us) available, which has made it easier to cut the allergens out of our diet.
But living with all of these allergies is an adjustment – A BIG one. I was never the type of person who read labels in the grocery store, but now a 15-minute shopping trip turns into a 45-minute one as I read every label (even if it is the same brand I always get because food manufacturers can change ingredients without warning). I am forced to zigzag through the store to find the specialty food (because the soy butter can’t be found with the peanut butter and the frozen Van’s Waffles can’t be in the freezer next to the Eggo Waffles). It is not uncommon for me to get strange looks when we go out to eat because we have to completely wipe down the tables and chairs of where we are going to sit. Servers and other patrons often roll their eyes at me when I ask to speak to a manager before ordering food. But this is my reality now. This is my family’s reality.
So we have adjusted. We have learned all that we can about food allergies. I read articles and forums nightly to keep informed of legislation, research and to anticipate future scenarios. We have done a Food Allergy Walk and hope to do more in the future. My son wears his medical alert bracelet (bright orange) every time we go out of the house and is able to explain to anyone who asks, what it is for. He knows all of his allergies and backs away when other kids have food around him. If someone offers him food, he knows to come ask Mommy or Daddy before he eats it. He is amazing!
A year ago, we welcomed our second child, Caolán Michael, into our lives. When I was pregnant with him, I had two big fears. The first fear was that I would get overwhelmed with two kids and that my distraction with managing both kids would put Bradán’s life in danger. With food allergies, you need to be vigilant every second of every day. You can’t let your guard down and I was afraid that I would. My second fear was that Caolán would have the allergies that Bradán didn’t have. We had gotten used to living without milk and eggs, but what if we had to eliminate soy, too? So far, Caolán has eczema (it didn’t show up until he was a year old). Also, he has already experienced respiratory problems and probably will have asthma. But no food allergies as of yet!
Our families have been extremely supportive and mostly “get it.” Although there have been a few frustrations, we consider ourselves the lucky ones. With our families, the safety of my child outweighs the comfort and convenience of the rest of the family. We know that other parents with children that suffer from food allergies are not as lucky to have such care and support.
Recently, while staying at my sister’s house, I was sitting at the dining room table with my sons, my niece, and my two nephews and eating an allergy safe meal. My niece and my two nephews were giving up their butter and scrambled eggs and cow’s milk to include my son in the meals and keep him safe while at their house. They usually do this willingly and fully understanding why they are making the accommodations. But this night, my nephews were discussing how they wish my son didn’t have these allergies so that he could eat all the good and healthy stuff. I could have taken that to heart, but I found that it was an opportunity to teach them more about living with allergies. I told them that my son actually eats healthier than many kids his age because of his allergies. I included my son in the conversation and asked him if he minded his allergies. He proudly said “no.” I told my niece and nephew that we say “c’est la vie” when we talk about food allergies. We listen to Kyle Dine, and one of my favorite songs is “c’est la vie.” With each conversation about food allergies, they learn and understand more and more. They, in turn, are becoming advocates for their classmates and friends.
“C’est la vie.” Such is our life. There is no wishing it were something else. It simply is what it is and we will make it a happy one.
We are hopeful that he will outgrow his allergies, but we live our lives as if he won’t. We often get comments such as “poor boy,” but that isn’t how we look at it. He was our first child. And this has been our only experience. We don’t know what it is like to raise children without food allergy considerations – and he doesn’t know what it’s like to live without food allergies. And he is happy! Very happy! He lives a full life. Of course, as I write this, he is screaming to get out of a time-out. So you see, it’s all a very normal life. We know we haven’t reached the challenges of school yet, but we are trying to establish a healthy foundation for Bradán and our family so that we can meet those challenges.
All of that said, no amount of preparation and positive perspective erases the underlying fear of the “what-ifs.” And every day, I am surprised with a new scenario to consider. Shortly after my second son was born, we were at the mall and I was letting Bradán play in the play area. I bent down to put my newborn back in the stroller and when I looked up, Bradán was gone. I was positively frantic – my fears realized. I finally found him walking back towards the play area and I noticed that I had forgotten to put his medical alert bracelet on. It’s a mistake I rarely make – now. Months after that moment, I’m still sometimes beating myself up for not only losing track of him, but also terrorizing myself with thoughts such as “What if someone, while trying to comfort my lost child and gave him milk or ice cream or a cookie?” or “What if he went into an anaphylactic shock and they didn’t know what was happening?”
There is also the fear of leaving your child with another caretaker. We are not a family that doesn’t leave our child or choose to not go out to eat. We have chosen to do these things…but with great fear, caution, and preparation. I recently had to leave my sons with my sister (it is pretty much the safest place I can think of for them to be outside of our house). But I was in tears when I left him. “What if something happens?” “What if I am too far away to get to him quickly?” These are the thoughts that run through my head.
While I can barely manage the anxiety that comes with leaving him with a trusted family member, there are trips I have chosen not to take because I just can’t bring myself to be that far away from my son should he accidentally ingest something that causes anaphylactic shock. A year ago, some of my friends were going on a cruise and invited my husband and I along. We simply could not be out to sea, and not be within quick response to our son.
Yes, there are sacrifices that must be made. But they can be made. And in the larger scheme of things, they are insignificant compared to his safety and well-being. It is simply his life. It is our life. And really, I could never ask to change a thing. Bradán is the wonderful boy he is today because of what he has already gone through. It has made him stronger and wiser than many children his age. I am so proud of him. So proud to be his mother and so proud of the person he is growing up to be.
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No rise. Not tender. Dense. Kinda hard.
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