A mother’s take on having children with food allergies
By Brianne Geetings
Nearly eight years ago, my family began a journey that changed our lives forever. We did not move across the country, buy a new house, or start a new business venture; no, nothing exciting like that. We simply became an allergy family.
My husband, Nate, and I were blessed with three beautiful boys. Three boys who have two things in common: long eyelashes and food allergies. Sadly, our lives revolved around doctors appointments, allergy testing, weight checks, reading labels, learning new recipes, sleepless nights, cleaning up vomit, and borderline mental breakdowns—for more than five years.
You see, our three sons—Mason (8), Carter (6), and Winston (3)—all have, or used to have, food allergies. As many children do. But they are unique in that all three of them have had a different list of food allergens, and they each had a different type of allergic reaction.
How could that be? Doesn’t an allergic reaction equal rash-like hives, swelling, and difficulty breathing?
That is what my friends told me. That is what the internet told me. That is even what the doctors told me. And that is true, for most people. But it was only true for one of my kids—each of their little bodies responded in a completely different way to their food allergens.
Most people are aware of the “typical” allergic reaction—known as an IgE-mediated food allergy—that causes hives/rash and swollen airways/difficulty breathing (anaphylaxis). But since this type of reaction only happened with one of our kids, and the other two had such bizarre symptoms, it took us months to figure out what was wrong with them and years to make them better.
With each child, we were more perplexed—like a giant jigsaw puzzle, trying to complete the picture. But nothing fit. It was, without a doubt, the most stressful time of my life.
And it all began when Mason was just 10 months old.
The Corn One
Mason had just woken up from his afternoon nap, and—as the sun was shining brightly that day—I thought it would be nice to take a little stroll through the neighborhood. I gave him one of his favorite snacks, lathered him with sunscreen, and we hit the road.
Just a few minutes later, Mason became very uncomfortable. He was whining loudly and waving his arms in an agitated way. And Mason never cried—you know, first born—so I knew something was really wrong. I looked under the stroller canopy, only to find his little face unrecognizable. His lips were swollen, his cheeks were beet red, his eyes were swollen shut, and he had snot and saliva streaming down to his chin.
One dose of Benadryl and a quick trip to the emergency room later, and he was back to normal. But I was so confused. I spent the rest of the day racking my brain, trying to figure out what had happened. The only thing that made sense was the snack he ate right before we left the house; those Gerber Lil’ Crunchies in cheddar flavor. But he had eaten them before.
I immediately made an appointment with my allergist in Traverse City. He performed a skin prick test (SPT) on Mason’s little back for the allergens in the Lil’ Crunchies, and sure enough, he had a reaction.
Mason had an IgE-mediated allergy to corn.
“You’re going to need to remove all corn from Mason’s diet moving forward,” the doctor told us. “Here is a list of all derivatives of corn. You will have to be very careful; corn is in almost everything. You’re also going to need to carry an EpiPen around with you. Hopefully you won’t need it, but allergic reactions can sometimes get worse with each one. The good news is, children with corn allergies commonly outgrow them.”
From that moment on, my job as a mother changed forever. I could no longer walk through the grocery store aisles and grab whatever I wanted, or buy whatever brand of food was on sale. Every label had to be read—in detail—for the health of my child.
It took a while to find our groove, but I will say that, in time, it did get easier. Once we determined the brands of food that he could eat and found substitutes for our favorite recipes, it became second nature to us. And I am happy to report that, a few years later, Mason did outgrow his corn allergy, as our allergist had predicted.
But unfortunately, our journey did not end there.
The Soy One
I struggle sometimes to tell Carter’s story. I struggle to find the words without breaking down into a blubbering mom mess. Because Carter was in pain from just a few weeks old until he was almost the age of three.
And I could not make the pain go away.
As a newborn, Carter had an extremely difficult time eating—breastmilk or formula. Such painful burps and lots of gas coming out of him. He would scream for 45 minutes through his feeds; the only way I could get him to finish a bottle was by rocking him to sleep in a dark room while he ate.
For months, he was seen regularly at a pediatric clinic and was eventually diagnosed with reflux and lactose intolerance. His doctors pumped him full of different antacids and proton pump inhibitors (PPIs), like Omeprazole, none of which ever touched his symptoms.
We then started him on a soy formula, as one pediatrician had suggested, and hallelujah, it worked!
For two and a half months, Carter was doing fantastic. Most of the pain that he had previously experienced during eating had been resolved. He even started eating solid foods. All was well with the world.
Until it wasn’t.
Just shy of eight months old, Carter began gagging and forcefully vomiting his solid foods. It was as if he could not swallow anything. Then, by 10 months, he flat out refused to eat anything at all; we basically had to force-feed all of his meals. As a result, we had no choice but to begin feeding therapy at the local hospital. There, he was diagnosed with food and oral aversion from his “reflux,” and we began both in-office and at-home feeding therapy. The goal was to get him comfortable with eating food again, without any of our usual distractions. Thankfully, it worked.
But then, at a year old, when we introduced cow’s milk—hoping that he had outgrown his “lactose intolerance”— Carter became terribly ill, with severe diarrhea and a runny nose. We were told by an urgent care physician that he was probably having an allergic reaction to the cow’s milk.
Yet, we were denied by the pediatricians—for the second time—for a referral to the allergist, because Carter “did not have a rash.” We were told to begin soy milk instead, as he had done so well on the soy formula. Or so we had thought.
A short period of time after he was regularly drinking soy milk, Carter began having a difficult time sleeping. We hoped it was a phase, that it would pass with time. But eventually, he went from crying out in his sleep a few times a night to crying—no, not crying: screaming—in his sleep all night long, up to a dozen times a night. Screams so loud, as if he were being tortured. The only thing that would stop the screaming was drinking water or soy milk from his sippy cup, and then rocking him back to sleep, over and over again. It happened so often that I decided to create a sleep log: a spreadsheet I used to track the number of times that he woke up and any variables that may have contributed to his discomfort. I was desperately looking for some kind of pattern.
By the time that Carter was 15 months old, we were at our wits’ end. My family was falling apart. We were all sleep deprived, arguing with each other constantly, and stressed to the absolute max. My husband and I were barely speaking, and he was sleeping in the basement with Mason every night, just for the quiet. I took Carter back to the pediatrician one last time, pleading with them to help my child.
They told me to try sleep training. (Insert eye roll here.)
After being disregarded by our pediatricians for what seemed like the millionth time, I took matters into my own hands. I changed our insurance provider so that we no longer needed a referral, and I took Carter straight to our allergist. I explained Carter’s symptoms to the doctor, walked him through the entire health history, and showed him my sleep log.
“With everything you have just described, my gut is telling me that Carter has some kind of a food allergy,” our allergist explained. “I also believe he may have an allergic inflammatory disease called Eosinophilic Esophagitis [E-o-sin-o-phil-ic E-soph-a-gi-tis], or EoE. Food allergies do not always cause rash or an anaphylactic response. We now know that some people show allergic reactions on the inside; some feel it in the esophagus. The symptoms of EoE are: reflux that doesn’t respond to antacids or proton pump inhibitors, difficulty swallowing food, vomiting, food aversion and sometimes failure to thrive, and difficulty sleeping.”
Carter had all of those symptoms.
The allergist performed an SPT on Carter, and there it was: a positive reaction to dairy.
Needless to say, we fired our pediatricians.
I wish I could say that we removed dairy from Carter’s diet, all was well, and we lived happily ever after. But for about five more months, the night wakings continued. We tried several rounds of sleep training—because maybe he had developed some habits after all—but that did not work. We played around with his reflux medications, but it did not matter. I even requested a full lab work-up, because Carter was waking and drinking so much at night that I was concerned he may have juvenile diabetes.
I researched, I cried, and I prayed for hours on end. And then it hit me.
He’s not eating dairy anymore, but he’s still sick. Could it be from all of the soy?
We removed all soy from Carter’s diet, and 48 hours later, he slept through the night. Back to the allergist for another SPT, and my suspicions were confirmed: he was definitely allergic to soy.
Yet, even with soy removed from his diet, Carter still struggled to sleep, especially when we tried to stop the Omeprazole.
We played around with his diet a little, to see if other foods we had started giving him had become an issue. We even had him retested for allergies to any and all foods that he consumed on a regular basis—the slightest hint of a welt, and the allergist had us remove these foods from his diet: tree nuts, coconut, fish, sweet potato, vanilla, blueberry, sesame, wheat, and soy. Strangely, dairy was negative, but we kept him off it anyway, just to be safe.
Eventually, we ended up at a Grand Rapids hospital to see a pediatric gastroenterologist. We had an endoscopy procedure done to look at Carter’s esophagus and to take biopsies of the esophageal tissue. These biopsies are to look for eosinophils, which are basically white blood cells that collect in the esophagus as an allergic response, causing inflammation and ultimately pain in people with Eosinophilic Esophagitis.
Carter’s esophagus looked healthy: no visible signs of reflux or EoE, but the biopsies showed an eosinophil count of six. In order to say that Carter had active EoE, he would have needed an eosinophil count of 15 or higher. So they called it “partially treated” EoE. In other words, since we had removed all of Carter’s allergic foods, his esophagus had started to heal, causing the eosinophil count to be lower than we had expected. But simply removing these foods was not enough to alleviate his discomfort. He needed to drink a steroid called Budesonide—normally used to treat asthma—that we mixed with Splenda to make a paste-like consistency. This would coat his esophagus and work as a topical steroid to help reduce the inflammation. It took more than a year, but he finally got relief from the medication.
Meanwhile, Nate and I crazily decided to have a third baby.
Never in a million years did we expect to have another son with food allergies; certainly the first two were just a coincidence. You would think that since Nate and I both had such strong family histories of food allergies—parents, brothers, cousins, etc.—and since the tendency to develop food allergies is often hereditary, we would have known better. But we did not.
They were all doomed.
The Oat One
At just a few weeks old, our youngest, Winston, had similar eating issues to his big brother Carter. As we were finally coming to the end of Carter’s allergy debacle, we did not waste any time to get Winston treated. Because of his reflux-like symptoms as a newborn—back arching, painful burps, and excessive spitting up—he was treated with antacids and PPIs, as was the standard course of treatment. Yet, unlike Carter, Winston did find relief from these medications. I truly believe he did have reflux… in the beginning.
Over the next few months, Winston’s eating discomfort came in waves: we would increase his dosage, he would get better, then get worse, then we would increase his dosage, and so on. At six months old, he began excessively spitting up, more than ever before. We had him seen by our pediatric gastroenterologist in Grand Rapids; she was not concerned about the worsening symptoms and suggested that we increase his Omeprazole dosage, one more time.
But when Winston started projectile spitting up anyway, I knew something else had to be going on. Off to the allergist we went!
I remember when he walked into the room and the look of disappointment on his face as he just shook his head.
“Not another one, Brianne.”
“Yep. But I’m catching it way earlier this time!”
And so he performed an SPT on little Winston’s back to check for an allergy to the top food culprits: dairy, soy, wheat, tree nut, fish, peanut, and egg. All were negative, except for soy.
Argh! Soy is the worst!
But as I was still exclusively breastfeeding at this point, I could not figure out how Winston was getting that much soy, especially since we did not eat a lot of soy in our home. I cut it out anyway, just to see, fingers crossed!
It did not work. Not only did the spitting up continue, but it got worse. It was occurring so frequently that I had started keeping a puke log this time: a spreadsheet that tracked the number of times he vomited and the corresponding foods that he ate that day. About two weeks after we removed the soy, the vomiting spiraled out of control. I counted 26 times in one day—26 times! My sweet little man could not keep anything down.
It was just too much. We headed to the emergency room to get some answers, and after hours of bloodwork and ultrasounds, everything came back normal. That night, as I nursed my starving baby and rocked him to sleep, the tears streamed down my face as I prayed. When I got into bed after a feed, my mind was racing 100 miles per hour.
What is causing this? What have we done that would make him get so much worse so quickly?
“Nate! Wake up! I know what it is! Oats, he must be allergic to oats! We started giving him Cheerios the other day. That’s when he started puking like crazy!”
My prayers had been answered.
The next morning, I woke up and called our allergist, who got us in immediately. We ran another SPT, this time for oats. It was positive—so positive, in fact, that his reaction to oats was bigger than his reaction to the positive histamine they used as a guideline. A thousand light bulbs went off in my head: we had started Winston on baby oatmeal at three and half months, and that was when his “reflux” symptoms had gotten much worse. It was also about the time that he had developed eczema on his skin. Adding Cheerios to the mix was just enough to trigger the vomiting.
Just a few days later, we had Winston scoped in Grand Rapids to check for Eosinophilic Esophagitis, but the biopsies revealed a count of zero eosinophils. This was great news! However, as his vomiting somehow worsened, our allergist decided to treat him with the Budesonide steroid anyway, to see if it would calm down his esophagus. We also did a third SPT for all foods that either of us consumed regularly—since I was still nursing—which revealed mild allergies to cocoa beans and bananas, in addition to the soy and oats.
Eventually, with food elimination and medication, Winston’s vomiting subsided.
Remission, Outgrowth, or Whack-A-Mole?
Fast forward about a year—summer of 2018 at this point—and all of our allergy kiddos were in a good place. Winston was no longer puking everywhere, Carter was finally eating more than meat and potato chips, and Mason was only avoiding strawberries, a new IgE-mediated allergy that had appeared out of nowhere for him. But for some reason, my Allergy Mom brain just could not let things go.
After hours of my own research and some painful, yet eye-opening, conversations with other EoE parents, I realized that I needed to know—once and for all—who was still allergic to what, and whether the foods we were giving Carter were still affecting his esophagus. I took the boys all down to a pediatric allergy clinic in Ann Arbor to get a second opinion and have them all retested.
And get this—every single SPT was negative for all three boys!
However, SPTs are not always accurate for non-IgE-mediated allergies—like EoE—so, unfortunately, those results were not definitive.
Given his chronic vomiting symptoms, the Ann Arbor allergist was suspicious that Winston had a third kind of allergy, called Food Protein Enterocolitis Syndrome (FPIES), in the chronic form. With FPIES, the allergic reaction occurs in the gastrointestinal tract, causing severe diarrhea or vomiting just a few hours after consuming the allergen; the chronic form of FPIES causes intermittent diarrhea or vomiting when the allergen is regularly consumed. It was definitely a possibility, as Winston’s vomiting had worsened when we gradually increased his oat intake over time. At this point, I would say that we are not certain, but since children with chronic FPIES from oats commonly outgrow them by the age of five, we plan to avoid oats until then.
We also agreed to have Carter scoped in Grand Rapids one last time—January 2020—after doing a soy trial, in which he had to drink soy milk every day for 30 days. Miraculously, the biopsies revealed only one eosinophil. The gastroenterologist, of course, suggested that he may have mild reflux.
Were we really back to a reflux diagnosis!?
I brought the biopsy results back to our Traverse City allergist, the man who had fixed my middle child when he had been at his worst; the only doctor who had ever believed me or listened to what I had to say. And he assured me that Carter did not have reflux, given that the reflux medications he had taken for years had never improved his symptoms and the only thing that had made him better was food elimination and the Budesonide steroid.
“I know I need to let this go,” I told our allergist. “People have been telling me I need to let this go. It’s just really hard, when I think back to the horror that we all went through.”
He responded with the affirmation that I had needed to hear for a long time:
“You will never let this go. As a parent, you will worry and wonder for the rest of your life about Carter’s EoE. But I’m a bottom-line kind of guy, and the bottom line is that Carter is okay eating the minimal amount of soy that he has been eating. He is in remission. All that matters is what you have done for him. What we have done together. He is fine now.”
I left that appointment feeling like an enormous weight of guilt, doubt, and uncertainty had been lifted from my shoulders. I felt as though I actually had some clarity. I finally felt at peace with EoE. It seemed as though our family’s journey was coming to an end, and we were finally saying goodbye to food allergies.
That was, until Winston developed an egg allergy out of nowhere last summer after consuming insane amounts of Eggo waffles—I’ll spare you the details.
So for us, it seems that every time one allergy disappears, a new one arrives in its place. It seems we will forever be a Food Allergy Family, and I will forever be a Food Allergy Mom.
But I am hopeful that the worst is over. I am proud of us, how we made it through such a challenging time together and how we learned to adapt under terrible circumstances. We have found our way—the allergy way.
And honestly, I’m okay with it.
Brianne Geetings has a blog at TheAllergyWay.com online that tells her young family’s story, shares allergy-friendly recipes, and offers support for other parents who are struggling.
Featured Photo Caption: Nate and Brianne Geetings with their three sons, who all have different food allergies. Though it has felt a bit like whack-a-mole, they are hopeful that the worst is over, though they will always be a Food Allergy Family and Brianne will always be a Food Allergy Mom. Photo courtesy of the Geetings family.