The Soy One

As I sit here debating how to begin the story of our second son, Carter, and the absolute horror he (and we all) experienced for almost two years, I am overwhelmed with emotion. Part of me does not want to relive the details of his food allergy journey, as I can say without a doubt it was the worst two years of my life. The stress of not knowing what was wrong with Carter was almost unbearable, so much so that it nearly broke my family. But as I see him now, running around the living room being his totally goofy self, I find peace in knowing that he is no longer in pain and that life, for the most part, is pretty normal.

At just 3 weeks old, I knew something was not quite right with little Carter. He was SO gassy… a never-ending flow of painful burps and toots coming out of him. I finally asked one of our pediatricians (Doctor #1) about it at his 1 month well-child exam.

“Just try to cut back on your dairy intake. Not so much yogurt and milk. That can sometimes make babies extra gassy.”

But I don’t eat yogurt and I rarely drink milk.

I was exclusively breastfeeding at this point so I tried to cut back on dairy as much as I could, but to no avail. The excessive gas continued and seemed to get worse with time. He hated nursing and cried through every session, though I was also struggling with an oversupply issue that may have contributed to his discomfort. [Side note: At 6 weeks postpartum, I came down with the worst case of Mastitis EVER and found myself checked into the hospital on Christmas Eve with an IV drip of antibiotics and pain medicine, and remained there for three days. Subsequently, I had to quit nursing but continued to pump for another month and a half.]

Around 3 months when we introduced cow’s milk formula is when the real fun began. Carter would wail through each and every bottle (breast milk or formula), followed by a round of painful burping. The only way I could get him to finish a feed was by rocking him to sleep in a dark room while he ate. Sometimes we would be in there for over an hour while my sweet 2 1/2-year-old son (Mason) would have to sit on the couch and watch TV by himself as I listened for him to call me through a cracked door. I simply couldn’t be in two places at once. How that just broke my heart as a mother; I hated having to choose.

At Carter’s 3 month well-child exam, I described what was happening with the feedings. I remember the pediatrician (Doctor #1) looking at me with a furrowed brow as he read Carter’s weight on his chart.

“Well, he seems to be doing just fine. He’s in the 85th percentile for weight.”

But he’s not fine.

The doctor thought perhaps Carter had a little bit of reflux (as many babies do) so he suggested we try the antacid Zantac. After 8 days of that with very little relief, we were back in the office. This time the doctor (Doctor #1) recommended we add some rice to Carter’s bottles in an effort to thicken the milk to keep it from coming back up into his esophagus. This did seem to help with the painful/wet burping but the feeds were still a nightmare. About a week after starting the rice, his milk consumption was down to 21 oz a day (previously eating 30-35 oz). And to add salt to the wound, the rice we were giving him was causing horrible constipation.

As his discomfort persisted, our next move was to try Omeprazole, a more potent antacid in the Proton Pump Inhibitor category. For a little over a month we did see slight improvement in Carter’s symptoms. But then, at 5 months when I ran out of my freezer supply of breast milk and we went straight cow’s milk formula, things got much worse. The screaming during feeds returned, followed by excessive spitting up. I thought maybe it was the formula, so we tried different ones. It made no difference. Back to see a pediatrician (Doctor #2) and we were given the diagnosis of lactose intolerance.

“It seems to me that since you ran out of breast milk and significantly increased his dairy intake, and since he has not had any kind of a rash from the dairy, we can assume that he probably has a lactose intolerance issue.”

Wrong.

“But don’t you think we should probably take him to an allergist just to be sure it’s not dairy allergy?”

“I really don’t think that is necessary. With a dairy allergy he would have had some kind of a rash. I think the best thing to do is to try a soy formula to see if he improves.”

Couldn’t possibly be MORE wrong.

So we did what the doc ordered: we started him on a soy formula. And Hallelujah, it worked! For two and half months, Carter was doing FANTASTIC. He was still a little burpy, but most of the pain he had during eating had been resolved. He was back to his happy smiling self again. He had even started eating solid foods. All was well with the world… Until it wasn’t.

Around 7 1/2 months, Carter started gagging on his solid foods, even the smoothest of cereals and purees. It was so bizarre to watch. He would eat several spoonfuls just happy as can be and then the next would make him gag and vomit so forcefully you’d think you were watching The Exorcist. I took him in to see the pediatrician (Doctor #3) and was told he probably just had an immature gag reflex.

“Give it a little more time to see if it improves on its own as his reflexes become more developed.”

Sadly, it didn’t. By 10 months, Carter was a mess. He would smack most of his solid foods away and would scream at the sight of his highchair. He wanted nothing to do with eating. The only foods he enjoyed were crunchy cereals like Gerber Puffs and Cheerios. We had no choice but to begin feeding therapy at our local hospital.

“How have you been getting Carter to eat his meals?”

“Well, after I get him in the highchair kicking and screaming, I have to turn on the TV as a distraction. I tickle him so he laughs and opens his mouth; then I shove the spoon in there. I basically force-feed him. This is all my fault.”

Insert sobbing mother here.

“DO NOT, feel bad about what you have done. You are his mother and you did what you needed to do to feed your child so that he would thrive. There are many mothers who would not take the time to do this. They give up. You did not give up. But now we have to break these bad habits.”

Carter was diagnosed with food and oral aversion from his “reflux” and we were to begin both in-office and at-home therapy. The goal was to get him comfortable eating and to basically teach him how to eat all over again. We began by tapping an empty spoon on the highchair tray while singing the ABCs – this was to ensure him that the therapy would end with the ending of the song. Then, with each session, we would tap the spoon closer and closer to Carter’s mouth, moving our way up his torso to his chin. By no means could the spoon enter his mouth unless Carter opened and initiated the bite. It only took three and a half weeks, and he was fixed.

Look at this happy kid making a mess with his spaghetti. I never thought I would see the day.

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But just when we thought everything had turned around, we headed back to the pediatrician for Carter’s 1 year well-child exam. The doctor (Doctor #2) thought that Carter had been off of dairy for long enough and we could attempt to give him some cow’s milk to see if he had outgrown his “lactose intolerance”. Just two days of drinking regular milk and our little man became horribly sick. He had severe diarrhea and was super irritable; he also had a runny nose and was tugging at his ear, so we took him to urgent care to see if he was getting an ear infection. [Side note: during all of this food madness, Carter also suffered from chronic ear infections.]

After a thorough evaluation, the urgent care physician (who coincidentally used to work with my allergist) strongly suggested that we take Carter in for some allergy testing as she believed he was having an allergic reaction to the cow’s milk.

“There is a lot of fluid in his nose and his ears; they are very red and irritated. With food allergies, the reaction also occurs on the inside of the body. So even though he doesn’t have a rash, that doesn’t mean he’s not reacting to the cow’s milk.”

Back to the pediatrician we go to get a referral to see an allergist (because a referral was required with the type of insurance we had at the time), but because Carter did not have a rash from drinking the cow’s milk, I was told by the doctor (Doctor #2) once again that it must be lactose intolerance and not food allergy. I was denied a referral to the allergist against my wishes and was told to begin soy milk, since Carter had done so well on the soy formula. And so we did.

Fast forward about two weeks when my husband and I decided to take a trip to Mexico with some friends, leaving the day after Thanksgiving. We left our two boys with my parents for about five days. After our nice, relaxing time away, my mom informed me that Carter had been having a difficult time sleeping, probably because he was in a strange place. Except that when we returned home, he continued to have a difficult time sleeping. I was convinced we were being punished for taking a vacation. Oh how I wish that was the case!

Over the course of two months, Carter’s night wakings spiraled out of control. It went from crying out in his sleep once or twice, to blood curdling screams up to 11 times a night. The only thing that would stop the screaming was drinking some water or soy milk from his sippy cup, and then I would rock him back to sleep, over and over and over again. [It was so bad, my husband and Mason had to sleep in the basement for nights on end just so they weren’t woken up by the screaming.] I explained to a pediatrician (Doctor #4) how uncomfortable he seemed to be at night, and she assured me it was behavioral from all of his ear infections.

“He’s probably just developed some habits from being sick so much. Give it a little time and see if it resolves.”

Wrong.

As the sleepless nights continued, the only thing I could think of to do was to create a Sleep Log. What’s a Sleep Log? It’s a spreadsheet I used to track Carter’s sleep behavior, charting the length of time he slept at night (dark blue), the number of times he woke up screaming (red) and any variables that may have contributed to his discomfort (illness, foods, medications, etc.). I was desperately looking for some kind of pattern. If nothing else, at least I had documentation of how severe the situation was and could show it to the pediatricians, as I was starting to get the impression they thought I was a crazy mother who just didn’t like getting up with her baby at night.

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At Carter’s 15 month well-child exam, I showed the pediatrician (Doctor #5) my sleep log and with tears in my eyes I expressed my concerns.

“Something is not right with my baby. He cannot sleep. He is in pain. I know something is wrong.”

“You know, a lot of babies wake several times a night. He will sleep through the night eventually. I see no medical for reason for him to be waking, so I’m sure it’s just behavioral. Why don’t you try reading the book Healthy Sleep Habits, Happy Child to learn about sleep training?”

But he was sleeping through the night! Why won’t you listen to me!? There is something wrong!

After being disregarded by our pediatricians for what seemed like the millionth time, I decided to take matters into my own hands. I changed our insurance so we no longer needed a referral and took Carter straight to the allergist (whom I personally had been treated by for several years). I explained Carter’s symptoms, 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. Furthermore, I believe he may have an allergic inflammatory disease called Eosinophilic Esophagitis [E-o-sin-o-phil-ic E-soph-a-gi-tis], also called EoE. Food allergies do not always cause rash or an anaphylactic response. We now know that some people only show allergic reactions on the inside; some have abdominal migraines and others 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.”

He literally has ALL of those symptoms.

Although Carter was not drinking cow’s milk with the lactose intolerance diagnosis, he was still getting other forms of dairy that were lactose free (yogurt, cheese, whey, etc.). We assumed dairy was the culprit, since we knew for certain that cow’s milk had made him sick before. So we tested Carter for a dairy allergy via a skin prick test (SPT) and sure enough, it was positive.

Needless to say, we fired our pediatricians. (See my post: To Whom It May Concern) Point blank, my concerns over my son’s health were completely disregarded and as we were passed around the practice to FIVE different doctors (now you see why I counted them), Carter ultimately slipped through the cracks. Had I been given the allergist referral upon my first request, we probably could have avoided months of pain and sleepless nights.

I bet by now you are wondering why all of this time I’ve been talking about dairy when we refer to Carter as “The Soy One”. I wish I could say that we removed dairy from Carter’s diet, all was well and we lived happily ever after. But that just didn’t happen. For about five more months, the night wakings continued, though not as often as when he was still eating dairy. We tried several rounds of sleep training, because maybe he had developed some habits after all, but that didn’t work. We played around with his reflux medications, but nothing helped. I even requested a full lab workup because Carter was waking and drinking SO MUCH at night I was concerned he may have juvenile diabetes. I researched, I cried and I prayed for hours on end.

And then it hit me.

If Carter got sick when we gave him dairy, and then we started supplementing with soy, could all of this soy be making him sick?

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 (#19 below).

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I remember getting in the car after that appointment and just sobbing in the front seat. I felt so terrible. All this time I had been giving Carter soy (and lots of it) and it was making him so sick. I was giving him sippies full of soy milk at night to ease his pain and ironically it was the soy milk that was CAUSING it. My friends and family assured me there was no way I could have known; after all, he had soy formula for almost three months with no issues, so the connection was not obvious. And even though I was the one who ultimately figured it out, as a mother I will forever feel guilty for having caused his pain.

Even with the soy removed from his diet, Carter still struggled to sleep, especially when we tried to stop the Omeprazole he was taking for reflux. As he was able to articulate more he began shouting “help!” in the middle of the night in addition to his screaming. My baby boy was literally asking for me to help him feel better and I couldn’t; it was heartbreaking.

We played around with his diet a little, to see if other foods we had started giving him (almond, coconut, etc.) had become an issue. We even had Carter retested for allergies to any and all foods that he consumed on a regular basis; the slightest hint of a welt and our 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 it on the list just to be on the safe side.

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Eventually, we ended up at the Helen Devos Children’s Hospital in Grand Rapids 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.

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The esophagus looked healthy: no visible signs of reflux or EoE, but the biopsies confirmed an EoE diagnosis.

“The biopsies showed an eosinophil count of 6. In order to say that Carter has active EoE, he must have an eosinophil count of 15 or higher.”

“But does a healthy individual ever have eosinophils in the esophagus for any other reason?”

“No, they do not. Sometimes a history of severe reflux can cause eosinophils, but there is no evidence of that from his scope.”

We called it “partially treated” Eosinophilic Esophagitis. Since we had removed all of Carter’s allergic foods, his esophagus started to heal causing the eosinophil count to be lower than we 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 and push those eosinophils right out of there.

We tried a couple of times to wean Carter off of the Budesonide steroid, but his symptoms returned so we kept going with it. He continued with this treatment for a little over a year and was able to stop in February of 2018. Since his diet had been reduced to basically meat and potato chips, we desperately wanted to start reintroducing some of the food groups he had been lacking. The following March we decided to do a patch test to see if anything had changed. In a patch test, the allergens are mixed with a petroleum jelly on patches and placed on the back where they remain for at least 48 hours. At that point, this was the most accurate way to test for Eosinophilic Esophagitis, though it is still not 100%. The results showed a definite soy allergy with questionable wheat and tree nut allergies.

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Unlike regular allergies, the EoE reaction takes time to develop, as the food must be eaten on a regular basis for the eosinophils to build up. The reintroduction of food, therefore, must happen gradually over several weeks (without overlap) to ensure that enough time has passed for the reaction to occur. Beginning the summer of 2018, we reintroduced one new food a month without any issues or symptoms recurring. Carter is now eating all foods with the exception of the one I call “the Devil”… SOY.

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Finding soy-free foods for Carter was difficult in the beginning because it’s pretty much in everything, but in time we found our groove and it now comes naturally to us. It’s part of the allergy way we do things. And it wasn’t so bad having only one person in the family with a specialty diet to follow. At least until, The Oats One came along.

[Edit: Our allergist and GI told us it was unnecessary to re-scope Carter with the reintroduction of each food, just to watch for symptoms to return. It was brought to my attention that allergens can still be EoE triggers without causing symptoms, which may cause damage to the esophagus. After meeting with a pediatric allergist at the University of Michigan (see It Ain’t Over ‘Til It’s Over and If At First You Don’t Succeed) we agreed that although he was symptom free, a scope was necessary to determine Carter’s current eosinophil count.]

[Edit 2: Carter had a second endoscopy procedure done in January of 2020. He is in FULL REMISSION (see My Son Has EoE… And He’s Rocking It.), and for some reason unknown to us, he can tolerate small amounts of soy without triggering symptoms!]

RELATED POSTS:

The Allergy You Can’t See
He’ll Probably (Not) Outgrow It
To Whom It May Concern
It Ain’t Over ‘Til It’s Over
If At First You Don’t Succeed
My Son Has EoE… And He’s Rocking It.