As I lay on the exam table beside my seated husband, both of us shielding our eyes to keep our third baby’s gender a surprise, the ultrasound tech wiggled the wand across my big belly.
“I know you don’t want to know the sex, but is there any part of the ultrasound you want to see?”
“Can you tell us if it has food allergies?”
My husband, always making jokes, got a big laugh with that one. You see, our other two children, Mason and Carter, both have food allergies (the latter having an allergic inflammatory disease called Eosinophilic Esophagitis). As a family we had been through the ringer. But it was okay to make jokes because CERTAINLY having two children with food allergies was a coincidence, a total fluke. There was no way our third would suffer the same fate. Boy were we naive.
And then he arrived two weeks early on Halloween, a sweet and healthy baby boy who would complete our family of five. We named him Winston, also known as Winn or “Mista Winn”. He was a good little nurser and a snuggle bug, but as time went on he became, you know, “colicky”. His burpiness at just a couple weeks old gave me flashbacks of his older brother who was similarly very uncomfortable from excess gas.
I mentioned the painful burps at his 2 week well-child exam. Our family physician (whom we love) was not overly concerned. As many people had told us, babies who are delivered quickly (in just slightly over 3 minutes!) often times have a buildup of amniotic fluid in their systems and need some time to get their little bodies adjusted. So we continued on without intervention. But by 6 weeks old I knew something wasn’t right.
Winn was very uncomfortable and was never content laying down; I had to carry him constantly and bounce him all over the house. He would eat a little, then scream from the wet burps, arching his back in agony. And he spit up A LOT. It seemed textbook reflux and as our doctor agreed, we started him on the antacid Zantac. After just 3 doses, he was a new baby.
But the relief only lasted about a week and the symptoms returned so we increased the Zantac to twice daily. I also removed all dairy from my diet. This took the edge off for about 6 weeks, but again in time the discomfort returned. Having learned my lesson during Carter’s debacle when none of his pediatricians listened to a word I said, I wrote our new physician about Winn getting worse and told him what I wanted to happen next.
“At this point I would like to start a stronger medication, like a PPI [Proton Pump Inhibitor]. Let me know when you’ve called that in.”
We got a prescription for Prevacid then ended up changing it to Prilosec (Omeprazole) for an insurance issue. It’s my understanding that as both are PPIs, they pretty much work in the same manner so it didn’t make a difference which one he was on. Over the next few months, his eating discomfort would come in waves: we would increase his dosage, he’d get better, then get worse, then we’d increase his dosage, and so on. As our other son Carter had a similar experience, and his ended up NOT being reflux, I strongly pushed for a referral to the pediatric gastroenterologist at Helen Devos Children’s Hospital in Grand Rapids. I refused to wait for answers.
Unfortunately, when the only pediatric gastroenterologist in the area covers a 150-mile radius, it takes a really long time to get in. Our appointment was scheduled for May 15th. At the end of April (6 months old), Winn had his first yucky upper respiratory infection (with an ear infection) and he was treated with antibiotics. Because of this, or so we thought, he was spitting up significantly more than before; no pain, just “happy puking”. We all assumed it was from being sick and the excess drainage/antibiotics upsetting his belly. But as time went on and he was no longer sick, the spitting up continued.
When we finally saw the gastroenterologist, she was not concerned by the increase in spitting up.
“Sometimes upper respiratory infections can trigger relapses in babies with reflux. Let’s continue with the Omeprazole and see if it resolves.”
Where have I heard that before?
After one more week with no improvement, we were told to increase his Omeprazole dosage AGAIN. So we did. But when Winn started projectile spitting up anyway, I knew something else had to be going on.
Crap. He must have food allergies.
Off to the allergist we go! I remember when he walked in the room and the look of disappointment on our allergist’s 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 a skin prick test (SPT) on little Winn’s back to check for an allergy to the top foods: Dairy, Soy, Wheat, Tree Nut, Fish, Peanut and Egg. All were negative except for… Soy (#19 below).
Are you kidding me? I have TWO children allergic to soy? Soy is the devil!
But here’s the thing… I was still exclusively breastfeeding at this point, so the only soy that Winn was getting would have been through the teeny tiny bit that made its way into my breast milk through foods I ate (which was rare because we don’t eat a lot of soy in our house). It didn’t make sense to me that such a small amount would make him so sick. But I cut it out anyway. Fingers crossed!
It didn’t work. Not only did the spitting up continue, but it got worse. Eventually it became more of a vomit than a little baby spit-up. It was occurring so frequently, I started keeping a Puke Log. What’s a Puke Log? It’s a spreadsheet I created to track the number of times Winn puked and the corresponding foods that he ate that day. I then took that data and created a chart. I was hoping some kind of pattern would jump out at me.
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 baby could not keep anything down, but fortunately it didn’t seem to bother him. He would puke and then smile at me, like this.
But something was just not right. We woke up the next morning and headed to the emergency room. Though it wasn’t really an emergency, I knew that the hospital was the only place I was going to get some answers quickly, or at least put my mind at ease that something serious wasn’t happening. I thought maybe he had late onset Pyloric Stenosis (which causes vomiting in babies) so I demanded an ultrasound of his little abdomen and wasn’t leaving that ER until we got one. They ran blood tests too, just in case. Everything was normal.
When your baby can’t keep any food down during the day, guess what he does. He eats ALL NIGHT LONG. It was worse than having a newborn. The night after our ER trip, we were up feeding at least 5 times. As I rocked my little man while he nursed, the tears streamed down my face as I prayed. I prayed that God would help me find the answer.
When I got in bed after a feed, my mind was going a hundred miles an hour.
What is causing this? What have we done that would make him get so much worse so quickly?
“Nathan! 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!”
God answered my prayer.
The next morning I woke up and called the allergist, who got us in immediately. We ran another SPT for oats. It was positive, so positive that his reaction to oats was bigger than his reaction to the positive histamine they used as a guideline. (#99 below)
“Did I tell you that oats was a safe food, because it usually is… Like rice. But Winston is severely allergic to oats.”
A thousand light bulbs went off in my head. When we started Winston on baby oatmeal at 3 1/2 months was when his “reflux” symptoms got much worse. It’s also about the time he developed eczema. Adding Cheerios to the mix was just enough to trigger the vomiting.
Fortunately, the gastroenterologist at Helen Devos had a cancellation for an endoscopy procedure just two days after we identified the oats allergy. We desperately needed to know if Winn had Eosinophilic Esophagitis (EoE) or reflux. And, of course, the endoscopy showed no visible signs of either condition, so the diagnosis came down to the biopsies. It took a whole week to get those test results.
While we waited for the biopsy results, the vomiting somehow increased (31 times in one day!), even after removing the oats. At my wits end, I asked our allergist to run another SPT for any and all foods that Winn and I both consumed on a regular basis. The nurse gave me a list of over 100 allergens and had me check the boxes.
“Is there chocolate on there? I don’t think I marked that one.”
“Yes, there is cocoa bean. Wouldn’t that be awful? Let’s hope it’s not cocoa bean!”
It was cocoa bean, along with bananas. Both were positive. Winn had never had chocolate before, but I sure had; I pretty much ate chocolate every day so he was getting a lot in my breast milk. He did eat bananas regularly for breakfast; ironically I fed him a banana baby food pouch while we were waiting for the SPT results. Our allergist thought it would be best to begin treatment for EoE using a steroid called Budesonide, just to see if it would calm his esophagus down.
Once we removed all of his allergic foods from both of our diets (and dairy too because when I gave him yogurt he started puking again), and started the steroid, Winn’s vomiting gradually subsided. I had to donate my entire freezer stash of breast milk (about 75 bags – wah!) because there was no way of knowing what allergens were in it; this KILLED me but in the end it made my heart happy knowing another baby would benefit from all that hard work. We briefly supplemented with a dairy-free soy-free formula, but it tasted like nail polish remover so Winn hated it. The only thing to do was pump and pump and pump until I got my supply back up. I don’t know how I did it, but I did.
When we finally got the biopsy results, we were so relieved! There were no eosinophils (white blood cells that collect in the esophagus as an allergic response) present in the biopsies so Winn did not have EoE, according to the gastroenterologist. Our allergist, however, was not as convinced. He believed that Winn got better with the steroid treatment and thought EoE was likely the cause. At this point I’d say we aren’t sure, though my mommy instinct is leaning toward regular food allergies; Winn’s symptoms were different than Carter’s and he also had eczema, which doesn’t usually occur with EoE. I guess we won’t know until we try reintroducing foods, whenever that may be. But for now he will remain dairy, soy, banana, oats and chocolate free.
[Edit: At a visit to the University of Michigan Food Allergy Clinic, a pediatric allergy specialist (kind of) diagnosed Winn with atypical (since he was also IgE positive) chronic FPIES to oats. (See It Ain’t Over ‘Til It’s Over and If At First You Don’t Succeed) Because of his negative scope, he absolutely does not have EoE. We will trial oats at age 5.]
On a side note, I am happy to report that I am no longer chocolate free. That may have been the longest six months of my life. Oh the things we give up for our children! But you do what you need to do for your babies; you do things the allergy way.