Allergy Mom: Changing My World for Baby

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I didn’t think I would be an allergy mom. We made the switch to solids pretty painlessly with our first child, Blake. To my surprise, everything would change with Titus, our second. What we suspected were sensitivities and, eventually, allergies began in the first months of his life and worsened steadily.

In this piece, I often write as if you, the reader, are the person living it, to try to help you visualize. I move between past and present as memory strikes. Join me (if you dare) on our food allergy journey.

How we knew something was wrong

Imagine never lying your baby flat for nearly eight weeks because doing so makes him choke, sputter, and gag from chronic congestion. Everything must be inclined, and the old pillow or phone book under the mattress trick doesn’t work. Picture settling into and holding your baby as you try to sleep in a recliner overnight (always elevating that head) to take a little pressure off your own aching back. You do this for weeks on end when the base level congestion is worsened by his first cold. Your feet hurt, and your back does, too. Snot suckers, automatic aspirators, saline, steam showers, and humidifier(s). You do all the things all day, then again all night.

You watch, shocked, as his tiny frame violently vomits breastmilk with such force it covers everything within a several-foot radius. Out of morbid curiosity, you catch the spit up with a measuring cup, and it is two ounces. That’s nearly his whole feed. 

Whatever is actually swallowed quickly comes out the other end within the next half hour with another terrible gurgle. Every diaper change, and often there are two or three following a single feed, you pray for something actually to stay down. You know the nutrients aren’t reaching his tiny body, and his now two and a half month old body is changing and developing and needing them so badly.

At this point, we see the pediatrician for a stool test. She suggests we begin tracking every food or drink to see what is causing the worst reactions. I had already begun cutting dairy as I noticed it seemed to provoke the worst symptoms. I’ll spare you the gory details, but you can look them up here. 

As I embarked on the full elimination diet, the days seemed to drag on. Removing the traces of allergens from Titus’s microbiome would take weeks, even months. The projectile spit-ups and blowouts continued as the irritants bothered his tiny digestive system.

Imagine washing four to five loads of spit-up or blowout-covered laundry a day, then trying to fold them. Wiping floors, cabinets, bedsheets, and car seats again and again continues to be a part of the feeding process. Holding both babies at once sometimes, your hands and fingers dry and flaky from the constant soap or stain removers. Your weary body a little better, but still not fully strong postpartum, reminds you which muscles are weak as you bend and lean and twist. Wondering the last time your frame was not taxed by the weight of carrying another little person? You can’t recall. Standing over the wash or loading the dryer, someone is crying again- is it baby? No, you taste the salt and realize it’s you.

On several occasions, you pull up to the stoplight for big sibling’s preschool drop-off, when you hear the familiar sound of milk shooting out of baby’s mouth onto the car seat and surroundings including the window. You’re helpless to stop or even wipe him up yet. Waiting for the green arrow to appear, you close your eyes and count to ten.

After dropping off brother, you hold the baby in one arm while wiping his car seat as sheets of heavy rain soak you. Opening the trunk and changing his milk-covered clothes, you ignore the deluge to shield him. Placing him back into that now-wet car seat, you drive home drenched and defeated. Getting home, you realize you never ate breakfast, but first, you open the washing machine for yet another load.

My mom and dad come over once in the night to cry and pray with me as I mourn the world that feels upside down—loss of sleep, food, drinks, lifestyle. I am beyond empty. I even snapped at my preschool son a few times. I second-guess everything, including my ability to parent this new baby. They hug me, speaking in soothing tones, and then my mom wipes up the floor and dries off my wet hair.

After some time around the six-week mark, we do note some positive changes in symptoms. Titus still struggled with keeping feeds down, though. Weighing him, checking the weight loss. I sadly realized he had lost a whole pound. 

The pediatrician smiles kindly and laughs as I joke about sleeping on our cheese wedge pillow. She’s so kind. Thank God for kind people. We review my food diary, with all the foods that cause reactions. We talk about formula options should the elimination diet fail. She schedules Titus a visit with a specialist. She tells me I’m doing great and to keep it up. I am being held afloat by family and our doctor at this point, and her words lift me up for the rest of the week.

At this point, anyone who hasn’t lived this nightmare with us up close likely thinks I would benefit from an inpatient stay myself. I have anxiety attacks over a pat of butter. “Why don’t you just switch to formula?” many ask. For babies who can’t tolerate any animal milk or soy milk, the options for formula are slim. I talk with two other mothers who have used amino acid-based hypoallergenic, lab-created formula. They confirmed what I suspected; it was their last resort. Their babies struggled to tolerate its bitter flavor despite trying many brands, and it was expensive. It is still an option, though. My husband, Josh, buys two bottles, and we place them in the pantry. Knowing Titus won’t starve and has a backup gives us a level of peace.

After pinpointing and clearing the target foods from Titus’s body, we saw the symptoms subside. The chronic congestion? After months, it cleared. Fun fact: dairy protein intolerance (not to be confused with lactose intolerance) takes six weeks to be cleared from a baby’s digestive system. The horrible projectile vomits? Gone.

The list of allergens grew though. We tracked hives, swelling and other fun things. Soy joined the list. Eggs seemed to be 50/50, so we hold off on those out of caution. The blowouts decreased from ten or more a day to five and gradually down to maybe two. Two is ok.

Where are we now?

Titus is now seven months old. How is it going? I wish I could say life got easier once we knew what foods to avoid. But the reality is that drastically changing your diet as a parent is unbelievably challenging. I’ve learned so much and now have my go-to allergen-friendly foods, recipes, stores, and restaurants. That knowledge makes it about 80% better in terms of coping. Here are some of the hardest aspects:

Going to dinner used to be fun. Now I call ahead, list my allergies, prepare the waitstaff and the chef, and thank them for accommodating me. Eat whatever modified food can be managed for me. Thank everyone again. I try not to remember the creamy finishing butter on a steak, aoli that would complete whatever appetizer I’m eating, or the salty soy sauce to bring out the flavor in a tuna sushimi. I often cook at home for date nights or order half the meal and modify as needed.

Eating dinner at someone’s house for a meal? Honestly, it can be tough for both parties. I sense the hesitation, and I know how hard it is for the host. “Can I read the labels?” “Oh, that bag was thrown away?” Can’t risk it. “That’s ok, I brought my own”—— fumbles in the bag- “banana”- fumbles more, “and sour patch kids” (yep, they’re dairy, soy, and egg free). Or, oftentimes times, people try so hard but forget, maybe recalling a gluten allergy instead. I smile, knowing they tried. Just knowing they cared is enough. 

It’s not easy to accommodate us, and I don’t expect it. I now keep survival food like a certain safe brand of meat stick in my car. Another allergy mom said she lived on those meat sticks through breastfeeding two kids with allergies. For travel, showers, or church potlucks, I plan to order an Instacart or prep a mini meal to take with me. I found a frozen food company that makes allergy-friendly meals that I can eat in a rush.

As a result of the allergies, I’ve become more withdrawn. I go to fewer places and see fewer people. Some of that may also be that transitioning from one to two children requires a lot of preparation, not to mention scheduling between multiple daily naps again. Adding the mental load of special foods is sometimes too much, and I opt out of social events. I hope this doesn’t offend loved ones.

What are some positives from this experience?

The weight of the load I carried those months of discovering and then troubleshooting for the allergies makes me shudder when I recount it in detail. Picturing those difficult moments makes me realize just how strong I was. I wouldn’t have made it without the right people who spoke the words I needed to keep going. I changed my entire world for Titus while still caring for his older brother and trying my best to be a good wife.

I survived the holiday season without any of the traditional sweets, drinks, or savory delights. Was it fun? Often, no. Did I create some joy anyway? You bet! For Christmas Eve, I made both my trademark hot chocolate with all the normal toppings and a batch with oat milk and coconut whipped cream. A lactose-intolerant relative confirmed that the oat milk batch was good, too! 

Never again will I shrug off someone’s dietary restrictions or allergies. I remember teasing a relative about a restrictive diet they were on. After our experience, I’m deeply ashamed of those comments. When planning meals or parties, I try to accommodate all who will be present to the best of my abilities.

It’s been nearly five months since we discovered the allergies. Despite my vigilance, accidental exposures sometimes cause Titus to have hives and other reactions. But the chronic congestion and gurgling have stopped! Titus has caught up on weight and normal development. He can roll over, lie flat on his back, and even sit up!

We have been introducing solid foods for a few months, and it’s terrifying. There are slip-ups. So much of our food here in the U.S. has soy! From cocktail sauce to oatmeal to literally anything you can imagine, thank God again for our pediatrician and their on-call after-hours line. Talking via text or even Instagram with three friends who have done this also helps and gives me needed strength.

I recently took the kids on a trip to my favorite part of Miami Beach with two of my siblings to help (bless them!) It was wonderful despite my limitations and all the extra steps needed for meals (I packed an entire grocery order with hard-to-find items)! We found many vegan places that matched our needs, including a little ice cream place with multiple (you go, Glenn Cocoa!) ) dairy-free ice creams. I’m getting braver each month. It gets easier. I can spot a soy lecithin, or whey isolate on a label in less than 4 seconds.

We hope that Titus outgrows these allergies in the next few years, as many young children do, but if not, I will adjust as needed. If you have walked this road, I appreciate any encouragement! My husband has been so supportive of cooking with safe oils, not using dairy, and keeping track of the few restaurants I can eat at for takeout or in person. He carefully observes Titus if he’s starting to get a rash and recently helps me stay on top of the vast quantities of laundry. To all those who have supported us, made special foods for us or even just listened while I described the struggle, you have been the balm my aching soul needed. 

If you’re facing this allergy reality with a child, I hope you feel seen and find others to walk beside you. You can definitely reach out to me. I’m not a pediatrician; of course, they would be your first call, but I can cheer you on. You deserve a cape or at least a tiara. You can do it, allergy mom! 

 

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