If At First You Don’t Succeed

As mothers we are biologically programmed for one thing: to protect our young. We stare at our sleeping newborns like weirdos to make sure they are breathing and put gloves on their hands so they don’t scratch themselves. We plug the outlets, gate the stairs, bumper the sharp corners and lock up the cabinets. We cut food into teeny tiny bites. We strap helmets on heads and lather on sunscreen for outside play. We hold hands in parking lots and use five-point harness seats in the car.

As allergy moms, we go a step further. We read labels, read them again, and then read them one more time just to be sure. We make special meals and creative birthday treats. We drive hours to see the best doctors. We make charts to track symptoms. We carry around Epi-Pens, Benadryl, steroids and even Zofran. We work diligently to keep our children protected from their allergens.

So when the time comes for our children to trial a food that they definitely have been or may still be allergic to, it goes against all that we know. It’s like someone telling you to go ahead and give your baby a whole grape… just to see what happens. Or it’s fine to let your toddler cross a busy street by himself. Seems crazy, right?

At our latest University of Michigan appointment where we met with a pediatric allergy specialist, all three of my boys passed their allergen skin prick tests to foods we have been avoiding for years… which just blows my mind every time I say that out loud. We were given the go-ahead to begin trialing these allergens at home. We were also informed that soy lecithin (an emulsifier used in MANY foods) was actually safe for most soy-allergic people. A whole world of foods was opened up for us.

But as I walked through the grocery store, reading labels upon labels and throwing new foods into the cart, I couldn’t help but be overwhelmed with emotion. I was excited and terrified at the same time, to the point that I couldn’t control myself. Yep. I was that weird woman you see walking down the aisle, sobbing into a package of cookies. Then I picked up the carton of soy milk, the food that caused my son horrific pain for almost two years… the food that caused my family unbearable amounts of stress and sleep deprivation. I could hardly set it in the cart. I felt nauseous.

Nope. Can’t do it. This is a horrible idea. How could I possibly give Carter soy milk?

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Because… I must. As much as I want to protect my children from any suffering, I also want them to have an easier life, to be able to eat anything they want without worry. And I also want answers. I need to eliminate the what-ifs and the maybes. What exactly are they allergic to and what type of allergic reaction (i.e. EoE, FPIES or IgE) are we dealing with?

But before any serious trialing began, we wanted to test out soy lecithin to see if our family could finally eat all of the processed foods we had been missing out on for so many years! I kid of course (kind of).

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And so we started with the most amazing processed food of all time… OREOS! Because who doesn’t want to eat Oreos!? Carter, apparently. It seems his years of not being able to eat “milk’s favorite cookie” (or milk for that matter) ruined his tastes. He said they were just “OK”. Eh well, more for me!

Let The Trials Begin!

MASON

First up was Mason and his IgE-mediated strawberry allergy. We were told to give him 1/4 of a strawberry and wait for a reaction, then give him another 1/4 of a strawberry 2 hours later. If no reaction occurred, we would give him a whole strawberry the next day. So we did, with Benadryl and an Epi-Pen on standby. And my friends… nothing happened! For the first time in 6 years, we had one child without any food allergies!

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CARTER

Next up was Carter, our Eosinophilic Esophagitis (EoE) kid. The only food he was still avoiding was soy and we were to reintroduce soy milk gradually over 10 days, increasing the amount daily. If after the 10 days he had no symptoms (i.e. gagging, vomiting, belly aches, throat pain, night waking, etc.) he was able to continue eating soy in all forms.

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After 10 days of me repeatedly (and annoyingly) asking Carter how he was feeling and if his throat felt funny, it seemed he had passed the test, which we were definitely excited about. Unfortunately with EoE, however, symptoms are not a reliable way to determine an EoE trigger (as we learned a few months ago… see my post It Ain’t Over Til’ It’s Over). Some people do not complain about or are not aware of any symptoms at all. The only way to know for sure is to scope and biopsy to count the number of eosinophils present in the esophagus. If the allergen is not a trigger, this number should be 0. (Carter’s one and only scope 3 years ago showed a count of 6, not high enough to diagnose active EoE, but proof that he did have it before we removed his allergens, since there was no evidence of reflux or any other condition at the time).

The UofM allergist recommended that we perform a repeat endoscopy only if Carter presented symptoms at any point after his 10-day trial. But as I read more and MORE moms sharing their stories about how their children had no symptoms but still failed their scopes, I just couldn’t let it go. I wrote the allergist a 2-page message with my concerns and questions.

“I am so terrified that [not showing symptoms] will be the case for Carter. That we will be giving him soy (which I know without any question of a doubt made him very sick) but at a smaller amount than what he had as a baby, and that he won’t know how to communicate any symptoms OR won’t even realize that he has any symptoms at all. Or does it not even matter if one has any eosinophils present? Can he walk around with eosinophils for the rest of his life as long as it doesn’t seem to bother him? Or would he run the risk of damaging his esophagus if we left it untreated?

At this point I am really wanting to scope Carter one more time after the soy trial to get some definitive answers. If he scopes clean then we never have to worry about this again and he will no longer have any food restrictions. If he doesn’t, then we will work with you to identify his trigger.”

She very promptly replied, answering my questions.

“EoE should not be left untreated, even if symptoms are not present… There should be 0 eosinophils in the esophagus. My initial recommendation was to perform a scope in case he has any return of symptoms but if you would like, I am agreeable to recommending a scope in a few months to be sure.”

So after some back-and-forth with the UofM pediatric GI department and the Helen Devos GI department, we made a consultation appointment with Helen Devos in mid November, as they had the first availability. We will discuss (rather I will demand) a repeat scope to check for Eosinophils.

But for now, Carter is able to eat ANYTHING he wants, and boy is it amazing. Stay tuned to find out what happens next!

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WINSTON

And last but not least… Winston, our (maybe) chronic Food Protein Enterocolitis Syndrome (FPIES) kid. I say maybe because it has been over a year and we never really received a definite diagnosis. But looking back, chronic FPIES to oats (and maybe others) seems to be the only thing to fit his symptoms: worsening vomiting over several months (from infant oatmeal) with a peak after the introduction of Cheerios. And although he never had severe diarrhea, I do recall moments where I questioned his stool consistency (mucous, foul odor, etc.), not realizing at the time it might be related. He also never had confirmed failure to thrive, but as I look back at his baby book weight chart there is an evident decline in his weight percentile over several months… fortunately he was just really fat!

Winn had been avoiding soy, cocoa bean, bananas and oats – all of which he tested positive for on a skin prick test (SPT) in the past. But a positive SPT does not correlate with a positive FPIES trigger; the only way to know is to eat the allergen. We were to reintroduce one food at a time (minus the oats), starting with a 1/4 tsp and then gradually increasing the amount over 10 days. We were looking for any FPIES symptoms (i.e. vomiting and diarrhea). I started with cocoa bean of course. And after 10 days, he passed!

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Next we trialed soy, in a similar method as Carter using soy milk. And again after 10 days, he passed! We were on a roll!

We saved bananas for last, because he had eaten so many bananas as an infant I felt they had more potential to be a trigger. The problem was, I couldn’t get Winn to eat a banana. He fought me every single day. I finally just had to squirt banana baby food into his mouth. He was thrilled, but it got the job done. And I will say it again… after 10 days, he passed!

In A Tree-Nutshell

So what does all of this mean to our family? It means that we went from avoiding a bazillion allergens (corn, dairy, soy, wheat, tree nut, coconut, strawberry, fish, blueberry, sweet potato, sesame, vanilla, cocoa bean, banana and oats) at one point or another over the last 6 years, to now avoiding ONE… oats. DO YOU KNOW HOW EASY IT IS TO AVOID OATS? All that we know has been reversed. We are living a whole new life!

Yes, I’m a realist. I know there’s a chance that in the future Carter will be off of soy again (pending scope results) and that Winn will fail his oats trial at age 5. But it doesn’t even matter! Soy and oats are a breeze, especially if everyone could continue to eat soy lecithin. And compared to all that we’ve been through? No big deal!

But for now, right at this moment, I will sit back and watch my children eat the Oreos and the Cinnamon Toast Crunch. I will watch them eat the restaurant chicken strips and their friend’s birthday cake. I will watch all 3 of them hoover their Halloween treats without worry, because for the first time EVER they can eat any candy they want.

I will watch them enjoy food again.

I will thank God for guiding us to where we are today.

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One thought on “If At First You Don’t Succeed”

  1. You have done a wondrous, scientific, successful process to help all 3 of your boys, your family, and all families who are aware of this website. God Bless you and the boys and thank you for this I formation. God is Good. Amen.

    Like

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