By Heather Mackles, RN, BSN

When the food you’re feeding your child is making them sick, what do you do? One mother, a member of The Leaky Boob Community group admin team, shares her family’s journey with food allergies and how it has changed them. A registered nurse, the author shares some points for families on potential signs for allergies and how to proceed.

____________________

It started with a crying baby, a “sensitivity” to my breastmilk, and a transition to soy formula under the direction of our pediatrician. Then it became vomiting, weight loss, and a hospitalization. Eight years later, we’re dealing with food anxiety, rebelling, and a struggle with autonomy. Somewhere in there was a major food overhaul.

Food allergies.

I am a parent of a child with multiple food allergies. We wield EpiPens, Benadryl and a rescue inhaler. We see a pediatrician, dermatologist and allergist every few months. We are one piece of candy away from a trip to the ER.

Food can kill my son.

I was told while pregnant from a lactation consultant that babies rarely have an issue with actual breastmilk. Only babies with true milk protein allergies were unable to breastfeed due to the whey protein in breastmilk. My pediatrician agreed after we had several visits with complaints of horrible crying with no relief and constant diarrhea. He told me that my baby may have a sensitivity to my breastmilk and that it would be in my best interest to wean him immediately to soy formula. There was no mention of removing dairy from my diet first. Now knowing more than I did then, I probably could’ve tried removing all dairy from my diet and chances are strong that would have been a better option for my son. For more on breastfeeding a child with food sensitivities or food allergies, see this post here.

But I didn’t know then what I know now. I didn’t know how to fight and advocate for my son.

When we first got the diagnosis from the gastroenterologist, I made that first trip to Whole Foods. I was beside myself. I didn’t know what I was looking for. Then this saint of an employee came up to me, and asked if he could help me find something. I poured my heart out to him while he helped me navigate the store.

My child, who loved homemade fettuccine Alfredo (which starts with a stick of butter and a pint of heavy cream), now could not have anything that had the milk protein, casein, in it. It’s not a lactose-intolerance. He can’t just drink lactose-free milk and be fine. He can’t have any animal milks, butter, cheeses or whey protein. His reactions continued going up until his diagnosis had only been gut and skin related, but that doesn’t mean that the next exposure couldn’t affect his respiratory system.

The threat is very real.

My son can’t eat or have contact with:

• Dairy
• Gluten
• Tree Nuts
• Peanuts
• Tomato anything
• Nitrates
• Fluoride
• MSG
• Artificial Colors
• Preservatives

We now have to read every ingredient list for EVERYTHING. When he’s prescribed a medicine, or even if I go to give him over-the-counter medicine, I have to call the manufacturer and get the all clear that it does not contain dairy or gluten. Sometimes the manufacturer is closed, or won’t return my calls for days, but he needs the medication at that moment. So I have to take a deep breath, weigh the risks and benefits, pray, and give him the medicine. His allergy medicine prescribed by his allergist? I gave it to him for a month and couldn’t figure out why he was breaking out in hives and having diarrhea. It contained gluten as a main ingredient. Because his vitamins were cultured in milk, but they didn’t list it because they don’t contain milk, he had a reaction. Now he’s taking vegan vitamins to be sure they are dairy free. His allergies have evolved over the years, though he has yet to grow out of any, as many kids with one food allergy usually become allergic to other foods over time.

Every single thing that goes into my child’s mouth requires me to check the ingredient lists. Unfortunately, if something in it is milk-derived, it doesn’t have to list that according to the FDA. There’s a lot of ambiguity when it comes to artificial and natural flavors, colors and preservatives, and transparency is not required. So do I give him the food that should be okay and risk a reaction, or do I disappoint him and tell him it’s not safe? We play that game. Every. Single. Day.

Sometimes I hear him coughing in his room at night, one of his common early symptoms of a reaction, and the panic starts rising. “What did he eat today? Was it anything that we ate differently? Have I looked at our safe foods’ ingredient lists recently? Did they change their ingredients?” And then I mentally go back through everything he ate in the past 24 hours, because reactions can be delayed. His are usually around 8 hours after ingestion. Sometimes it could be anything, sometimes I may not even know for sure what he has eaten.

I cringe when other kids offer him food because he SO BADLY wants to take it, but he does good most days on refusing. Sometimes he slips, but I have to give him some autonomy. I cannot keep him in a bubble forever. He has had to learn how to resist temptation in the most evil of ways. Food is more than eating. It’s a social and cultural enjoyment. Good food brings people together and celebrations often center around food. Many people take offense even, including family members, when we say that he can’t have whatever they’re offering, because we aren’t sure of the ingredients.

My son experiences discrimination every time he’s on some sort of a team or in a group activity. I’ve heard such things as “We don’t accommodate for people with food allergies.” and “Can’t you just bring him his own snack to every game?” told to me by other parents, teachers, and team leaders. But there’s always that one parent on the team that texts me to ask me for suggestions on my son’s safe foods because they want to make sure he feels included. One parent who shows they care. They are the shining beacon of light, and by being able to share in team snack with everyone else, just like every other kid, you made his day. It warms my heart to see him so happy. And it makes me so angry when people blow off his food allergies like they’re nothing.

My child’s food allergies aren’t a preference, they are a life and death risk. I know it is inconvenient, my family lives with and accommodates those inconvenient risks every day.

Our safe restaurants include Mellow Mushroom and Disney restaurants. That’s about it. Going out to eat is another adventure. It takes a lot of time and energy, because we have to call ahead and make sure they can make something for my son that he can actually eat. He’s not picky by any means, but he does have his preferences, and most places either have 1-2 things on the menu he can have, or none at all. Like most of us, he wants to enjoy eating beyond considering whether or not it will make him sick. Most times, the restaurant’s employee we talk to on the phone can’t guarantee that they’ll have a meal free of his allergens. By the time we call around to 3-4 places we’ve selectively picked, we usually throw in the towel and make something at home. We make 95% of our food at home from the most basic ingredients. It takes too much time, planning and effort to go to a new restaurant, where most of the time, the employees are very poorly educated on food allergies and cross contamination. Fast food is mostly out of the question. We don’t even try there. If we need fast food, we make him a safe option at home.

Do I want to be this controlling? HELL NO. I want to let him eat whatever he wants, and I would cut off my left arm if he could just have one slice of birthday cake at another kid’s birthday party. But his diagnosis requires vigilance and I must provide that.

Still, I refuse to allow food to define my child. He is a smart, funny, easy-going kid. He’s never met a stranger and will hold a conversation with anyone he meets. He is good at acrobatics, circus aerial arts, and baseball. He just signed a modeling contract through a worldwide agency. His smile is infectious and that lights up the room. Food allergies are NOT who he is. He may have them, but they are not him. He is Ian, a boy who has food allergies.

And I stand in the background, ensuring he stays safe as he blossoms into his own person.

Right now, we take it one day at a time and we learn and grow with him. There will be more rebellion. There will most likely be more ER visits in the future. There will be times where he chooses to not bring his EpiPens with him because it’s not cool to have special needs. Hopefully that day, he won’t need it, as most days he won’t. Hopefully he won’t learn this lesson the hard way. But there will also be good friends that we meet along the way, and we will cherish them forever.

I went on to successfully breastfeed two more children. My middle child was breastfed until 18 months old, and my youngest is 19 months old and still breastfeeding with no end in sight. We introduced the top eight most allergenic foods at 6 months old under the direction of our (new) pediatrician and both of my youngest kids have no food allergies.

There’s a lot I wish I knew back in the day with my son that I know now. For new parents it can be overwhelming and scary. Most of the time I’m not scared any more, just vigilent. And I’m able to share what I’ve learned. There are boundaries to learn, together we can figure them out. In this post, another parent shares a few methods about food boundaries with her food sensitive child. 

Want to know what to look for and what could be a warning sign of an allergy in your child? Here are some of the most common things to look for when evaluating for food allergies in children:

•      Rash around the mouth
•      Flushed face
•      Hives
•      Vomiting and/or diarrhea
•      Behavioral changes, mostly severe anxiety or restlessness after eating
•      Fast heartbeat*
•      Face, tongue or lip swelling*
•      Constant coughing or wheezing*
•      Difficulty breathing*
•      Loss of consciousness*

*If your child exhibits any of these symptoms, call 911 immediately as these are signs of a life threatening medical emergency.

They could encounter the allergen once and react to it, or they could’ve been exposed to the allergen 100 times before and all of a sudden start reacting to it. There is no telling when or how bad they’re going to react to the allergen, if their body chooses to react to that particular food protein.

Many life-threatening food allergy reactions (called anaphylaxis) happen to kids who did not know they had a food allergy. If you suspect that your child has a food allergy, please consult your physician for further allergy testing. 

If you’d like to learn more about food allergies, please visit: www.foodallergy.org.

Living with the reality that the very nourishment that should sustain us, bring us joy, and lead to health could make our child sick, endangering their lives, isn’t easy. If you get to enjoy life without these scary obstacles, please be patient with those of us who must learn how to navigate them. If you are just discovering that allergies may be a part of your child’s life, you’ve got this. It may require a lifestyle change but you’ve got this. With community and information sharing you can be your child’s strongest advocate and learn how to navigate this terrain without it stealing your joy. 

____________________

Heather Mackles is a 32-year-old retired PICU RN, who is happily married to her husband, and stays at home with her three children, two dogs and an antisocial cat. In her minuscule amounts of free time, between changing diapers and homeschooling/unschooling her kids, she enjoys traveling, taking frequent trips to Disney, sewing, and critiquing medical TV shows. She believes in advocating for all women from all walks of life, and loves helping women achieve their breastfeeding goals.