Children with Food Allergies

Patience Is A Virtue

I haven’t written much about food allergies in a while, which is a good thing. When my writing is quiet, so are the food allergies. But this last week has been quite eventful (in a good way) and I must share the news!

You remember little Winston, The Oats One, who developed a severe (though non-anaphylactic) allergy to oats as a baby. Oat, what was supposed to be a safe food and #99 on the allergen list, was really not so safe for him at all. His “reflux” symptoms worsened dramatically around 3 months old when we started him on infant oatmeal: intensified spitting up and discomfort. And after months of vomiting, agony, allergy testing (for top allergens) and food elimination diets, we didn’t discover what was happening until he ate his first Cheerios.

Our local allergist suspected an IgE-mediated allergy to oats, the “typical” kind of allergy. A pediatric allergist at the University of Michigan Food Allergy Clinic [see It Ain’t Over Til It’s Over] thought maybe he had atypical chronic Food Protein Induced Enterocolitis Syndrome (FPIES): atypical because he tested positive on a skin prick test and chronic because his symptoms gradually progressed with the more oats he consumed. The Children’s Hospital of Philadelphia states that “the most common FPIES food triggers [in babies] are cow’s milk, soy, rice and oats.” Seems pretty likely to me. But since I cannot go back in time to make this distinction, I have accepted that I will never know which type of allergy he truly had.

But it doesn’t matter. Do you know why? BECAUSE HE’S NO LONGER ALLERGIC TO OATS!!

Let me back track. In the summer of 2020 while we were avoiding oats, Winston suddenly developed an allergy to eggs. He had a tiny obsession with Eggo waffles that caused a horrible eczema rash on his cute little cheeks and chronic diarrhea for a month. A simple skin prick test and we had our answer.

Now, over a year later, we have been curious if that egg allergy could have been short lived. Although Winston is SO good with his food allergies (“does that have eggs or oats?” he asks) it has been difficult for him now that he has started preschool. With the government funding free breakfast for students, he is constantly surrounded by kids eating baked-egg foods and oats every day. His teachers have been great at finding him alternatives, and I always have extra food in his little cubby, but wouldn’t it be WAY easier if he could just eat the muffins?

So we decided to retest him. We were told years ago that the oat allergy (and the FPIES if he had it) would most likely be outgrown by the age of 5. Just a couple days before Halloween, which also happens to be his birthday, we had our allergist repeat a skin prick test for eggs and oats. Even though he already had a negative oat test at the University of Michigan in 2019 (we were told to avoid them anyway as skin tests–especially for FPIES–are not always accurate), I felt one more would put my mind at ease, given the severity of his symptoms as a baby.

Oat was negative… AGAIN! Egg, not so much (see #5 in the photo below). He was still a level 4 out of 5 for eggs. So no muffins. But we were cleared to FINALLY trial oats!

We waited until after Halloween to start the trial; no need to make him sick on his birthday. So the following Monday we began. He ate raw Quaker oats (mixed with brown sugar, because ew) in increased amounts over the course of 5 days: 1/8 tsp, 1/4 tsp, 1/2 tsp, 1 tsp, 1 tbsp. NOTHING HAPPENED! We were so relieved. His oat allergy seemed to be gone for good… fingers crossed it stays that way!

I promised Winston, and his older brothers who have been graciously avoiding oats with him for years, all of the oat cereal we could find! Starting with Cheerios, of course.

But watching my little man eat oats this morning for breakfast, for the first time in 3 1/2 years, caused a whirlwind of emotions. You guys, the last time he ate a Cheerio, he vomited 26 TIMES IN ONE DAY. My belly was fully of nerves and anxiety as he picked up that little oat and chowed it down with a smile on his face; my heart was full of happiness and excitement. We have been patient with oats for many years, but we don’t have to be anymore.

As Oprah would say…

“You get an oat! You get an oat! EVERYBODY GETS AN OAT!”

Leggo Those Eggos

I thought it was almost over. I thought our days of mystery symptoms and elimination diets were a thing of the past. I thought in a few years we’d give our son some oats, he’d pass with flying colors, bada bing bada boom, happily ever after, blah blah blah. I even wrote a final Allergy Way post that basically said “we’re done with food allergies, it’s been real, see ya later alligator”.

We. Were. So. Close. Until this happened…

This rash on my 2-year-old son Winston’s face that appeared out of thin air.

It all started at the beginning of May, just about the time the snow melted here in Northern Michigan (yes, I meant May) and we needed to bust out the sunscreen. Certainly this red, flaky, super irritated rash on Winn’s adorable little cheeks was just from that. As I too have a sensitivity to sunscreen, I switched to the kind I have to use and hoped for the best.

Not only did the rash not get any better, it just flat out got worse. This was followed by a bout of diarrhea. When I say bout, I actually mean 7 weeks worth of diarrhea. A few times he even said “my belly hurts” aloud after eating. Our little guy is so tough, he will have blood gushing out of his foot, smile at you and say, “look, I got owie!” So if he says his belly hurts, you better believe it.

We initially tried to treat the rash with a steroid lotion. It would get slightly better, then come right back. I just knew in my heart that it was something he was eating. So here we were again, tracking daily foods in a little notebook, counting diarrhea episodes and looking for any consistences whatsoever. I found nothing. We even removed dairy for a week, just to see. Again, nothing.

If you recall from my previous posts, as an infant Winn tested positive for allergies to oats, bananas, soy and cocoa bean. He was then retested in August of 2019 for oats, bananas and soy at the University of Michigan Food Allergy Clinic and all were miraculously negative. As of May, we had not given him any oats (waiting until age 5), so I knew that wasn’t the culprit. Because of our other son Carter’s EoE allergy to soy, we are basically a soy-free home, so I knew that wasn’t the culprit. And Winn just really doesn’t eat bananas, so that couldn’t be it either. We did, however, start potty-training using ridiculous amounts of chocolate out of desperation. Perhaps he hadn’t outgrown this allergy yet after all.

Off to the allergist we go… again. This time in the middle of a pandemic though, so our experience was just a little different than normal. We masked up and packed a bag of clorox wipes, hand sanitizer and hands-free snacks like applesauce squeezes and suckers. Then I spent about an hour in a small room shouting “don’t touch that” and “let’s do your hands again” at my child over and over… I digress.

I walked through everything with our allergist; pretty straight-forward this time.

“Well he got this rash on his cheeks 7 weeks ago and has had diarrhea pretty much every day since. I’m assuming because of the rash that it’s allergy so I wanted to start with you. But celiac and lactose intolerance also run in my family, so those are my plan B.”

“Can you tell me what he typically eats every day?”

“Every morning he usually has either an Eggo waffle, toast or cereal with milk. Snacks are usually crackers or chips of some kind. He’s kind of obsessed with Eggo waffles so sometimes he’ll eat them frozen right out of the freezer in the middle of the day. I know, it’s weird. Then for lunch he has PBJ, chicken nuggets or pizza. Usually lots of fruit for lunch… apples, grapes, strawberries, pears. Then for dinner it’s more meats and vegetables, pastas and rice. Oh and lots of chocolate; we’ve been potty training with MMs and Hershey bars.”

“And when does he typically have the diarrhea?”

“Well come to think of it, he often has it after breakfast. Today he had a waffle and didn’t even finish it before he ran out of the room to go. Sometimes it’s later in the day though, when he hasn’t eaten anything immediately before. I haven’t been able to identify an exact food really, but my gut is telling me dairy or maybe wheat. That’s what he eats the most of.”

“Let’s definitely do a skin test for dairy, wheat and cocoa bean. I’m also suspicious of corn and eggs. Those would be in the waffles, cereal, even crackers and chicken nuggets. I don’t think anything else is necessary for now. If it’s all negative, then I’ll order up a celiac test. Sometimes people get a rash with celiac disease as well.”

Twenty minutes later and we had an answer.

That, my friends, is a positive reaction to eggs (#5).

What in the world??? Eggs???

Yep. Eggs. Quite possibly the only allergen this family has never had to eliminate before in the last 7 years. I guess we were due.

But why now?

Because of the 4 As… ANYONE can become ALLERGIC to ANYTHING at ANY TIME.

Of course, the first thing I did when we got home was raid the pantry to read 100 labels because I knew, of course, the first thing Winn would say when he walked in the door would be “can I have a snaaaack?” But to my surprise, most of the foods he eats regularly are naturally egg-free. We were in luck! Only a few baked goods, some canned soup, muffins, pancake mix and those dang Eggo waffles would need to be removed. Even his chicken nuggets were good to go.

So what am I doing right now while I write this? I’m drinking a glass of wine at 10:30 at night, making my son a batch of egg-free waffles in the barely functioning waffle iron we were gifted 10 years ago at our wedding. Why? Because I’m (still) an allergy mom and this is the allergy way we do things.

Stay tuned as we embrace this new egg-free adventure! Fingers crossed!

Click here to read more of Winston’s food allergy journey.

My Son Has EoE… And He’s Rocking It.

The last six months in our food allergy home has been quite a whirlwind, both in a good way and in a I-am-so-freaking-confused-nothing-makes-sense-anymore kind of way. Although my EoE son, Carter, has been symptom-free for 1 1/2 years after reintroducing his potential food allergens (except for soy), I have been struggling tremendously with this concept that no symptoms does not always mean no EoE; that in order to know 100% for sure, you must re-scope. If you’ve been following Carter’s story, then you know how I came to this realization. And if you haven’t, then I suggest you read my post It Ain’t Over Til It’s Over. It’s a good one.

Since that moment when I started to doubt every single thing we have done for Carter for the last few years, I have been unable to turn my brain off. The unknowns have been haunting me and I’ve been stressing over what might be happening in his little esophagus. Because of this, we recently decided to have Carter re-scoped to finally know once and for all whether he is able to tolerate soy and/or to see if any of the other “allergens” we had reintroduced were causing issues. In November, we met with a GI doctor from Helen Devos Children’s Hospital of Grand Rapids, a different doctor than the one who had scoped him 3 years ago but still within the same department. At our consultation with this new GI, I requested a scope procedure following a soy trial.

As the doctor flipped through Carter’s medical chart with a confused expression on his face, I knew it was coming.

“Did you have a second scope performed on Carter? All I’m seeing is this one from 2016 that says his eosinophil count was only 6, and that doesn’t show that he has EoE.”

Here we go again.

“I realize that 6 eosinophils is not considered active EoE, BUT he had ALL of the EoE symptoms AND he was off of soy for 3 MONTHS prior to that scope, which could have totally skewed the results, AND the only way that his symptoms subsided was by treating him with Budesonide Slurry.”

So the doctor agreed to us doing a soy trial/endoscopy and had us give Carter 8 oz of soy milk each day for 30 days.

The day of the procedure I was SO nervous. And for good reason. If the scope showed EoE, then we could assume that soy was the culprit but there was still a chance that one of the other allergens we had previously introduced was causing it and we were back to square one. If the scope didn’t show EoE, then the entire last five years of my life would basically be a lie.

The second week of January, the results were in:

“Carter’s biopsies came back great. He only had a count of 1 eosinophil in the esophagus. The doctor thinks this may be caused by mild reflux. He does not have an issue with soy.”

Say what?

My brain nearly exploded.

Are we really back to a reflux diagnosis??? There were no visible signs of reflux in either scope… he has never complained of reflux. How could he possibly have reflux? Are you telling me that as an infant he just had REFLUX??

I knew in my heart that I could not accept this diagnosis for the second time around. My son never had reflux. As a newborn he struggled to eat; he was super burpy and gassy, and he screamed during his feeds. Our allergist determined he had a mild IgE dairy allergy and when we switched him to soy formula, these symptoms disappeared. But THEN, after 2 1/2 months of eating soy formula, his EoE symptoms began. He started gagging and vomiting on solid foods, all the time. His overall food intake dramatically decreased to the point that he flat out refused to eat anything at all; he ended up in feeding therapy. His weight dropped 40% in just five months. At a year old when we started him on soy milk, he began waking, no not waking, SCREAMING in the night up to 11 times per night, for months and months on end. He was treated with the HIGHEST DOSE of PPI medication our pediatrician had ever seen in an infant for 1 1/2 years and it made NO DIFFERENCE. He was bad on the PPIs; he was bad off the PPIs.

Carter did not have reflux.

I contacted the pediatric allergist we had seen at the UofM Food Allergy Clinic back in August to get her opinion on the scope results. I asked her if she had ever found that people are able to tolerate different amounts of a trigger before it causes a relapse in EoE.

“This is great news! Those are very good questions and the jury is still out on some of them, especially the question about the amount.“

Super helpful.

So then I did what I always do… I scoured the Internet and social media support groups for answers to my questions. Here’s what I found out:

You must have an eosinophil count higher that 15 in the esophagus to diagnose active EoE.
The eosinophil count in the esophagus is irrelevant. More than 0 eosinophils indicates an issue, active or not.
A person will have EoE for life and trigger foods must be eliminated forever in order to achieve remission.
A person may be able to tolerate small amounts of an allergen without triggering an EoE reaction at all.
You can have no EoE symptoms present and a visually clean scope, but your biopsies can show insanely high numbers of eosinophils.
You can have horrible EoE symptoms but your biopsies can come back with eosinophil counts of remission.
Different areas of the esophagus can have different eosinophil counts.

So basically… every person is different, every biopsy is different and every doctor has a different opinion.

I had one final person I needed to talk to regarding these biopsy results… our local allergist, the man who fixed my child when he was at his worst… The only doctor who ever believed me or listened to what I had to say.

“The biopsy showed a count of 1 eosinophil in the esophagus. Dr. [Devos] says Carter has reflux. I just don’t understand. How could all of that have just been reflux?”

“Brianne, was Carter treated for reflux?”

“Yes, for over a year.”

“Right. And do you remember what happened? Did he get any better?”

“Not at all.”

“And what made him better?

“Food elimination and the Budesonide Slurry.”

“Right. Carter did not have reflux.”

Then I spewed out my list of questions.

“Is it possible that the 1 eosinophil in the biopsy could have been the start of an EoE reaction, and that if we continued to give him high amounts of soy each day, that count would continue to grow?

“Yes. Absolutely. There are many issues with biopsies as well. When a GI goes into a very bad-looking EoE esophagus they know exactly where to take that biopsy… from the worst area. But in a healthy-looking esophagus, they are taking a stab in the dark. They could take a biopsy and get 1 eosinophil, but just above it they could get a totally different number. There’s just no way to know.”

“So you have found that some people have to eat large amounts of their trigger foods before it causes a reaction? But smaller amounts are okay? So for Carter, 30 oz of soy formula per day for 2 1/2 months was enough to kickoff his EoE, but 8 oz of soy milk for 1 month wasn’t enough to really do anything?”

“Yes; it’s called dose dependency [or allergic thresholds]. And it’s different for everyone. You can be eating a food your whole life without any issues, but as you start to increase the amount [or dose], you can become allergic. What’s more, once you’ve removed that allergen from your diet and everything is back to normal, for some people it can take even MORE of that food the next time around to trigger a reaction.”

I was instantly reminded of one of my best friends who, ironically, was the first one to introduce me to EoE. She had been eating coconut and tree nuts in normal amounts her whole life without any issues. Then one day she got on this coconut oil kick… she was eating it constantly, rubbing it on her face, probably bathing in it too – just kidding! But seriously, that’s when her EoE started. Sure enough, she has an allergy to coconut and tree nuts. Just the other day she told me that she knew she had accidentally eaten tree nuts a few times since her diagnosis, and nothing seemed to happen. No EoE symptoms whatsoever.

“The last few months I have just felt like a total crazy person… everyone telling me that Carter may not have had EoE.”

“I can look you in the eye and tell you with 100% certainty that Carter has EoE. I will fight Dr. [Devos] to the end on that because I know it. The problem with some of these doctors is that they focus more on tests and procedures than on the patient as a whole. I was there. You were there, Brianne. He had every symptom, no matter what the tests say.”

He was right. I was there. I watched my little boy suffer for two years while I felt completely helpless. At a time when we should have been snuggling and playing and being silly and eating fun foods, we were instead crying and screaming and starving and dying inside. I spent every moment catering to Carter’s every need, while I practically ignored the needs of our older son Mason, not by choice but out of necessity. I watched my marriage crumbling before me, not from lack of love, but from the anger and fear and resentment and exhaustion that was building inside of us. Our family lost those two years. Carter lost those two years.

“I know I need to let this go. People have been telling me I need to let this go. It’s just really hard when I think back to the horror that he went through.”

Our allergist responded to me with the affirmation that I have been needing 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 Carter is okay eating the minimal amount of soy that he has been eating. All that matters is what you have done for him… what we have done together. He is fine now.”

Cue mom tears.

I left that appointment feeling like an enormous weight of guilt, doubt and uncertainty had been lifted off of my shoulders. I felt as though I FINALLY had some clarity. I finally felt… at peace with EoE.

Yet I’m also a realist. I’m sure there will be many EoE moms who will read this and think that I am a total crazy person; some will argue with me and say that I don’t know what I’m talking about. No way could my son have EoE. I’m sure many doctors would completely disagree with our allergist and his diagnosis because there is no proof on paper and we don’t have “the count” to back it up.

But here’s my bottom line:

I don’t care what your doctor says. I don’t care what the Internet says. I don’t even care what the biopsy says.

My son has EoE. And he is rocking it.

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?

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).

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!

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.

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!

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!

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.

It Ain’t Over ‘Til It’s Over

I recently wrote a post called “Dairy Me” in which I proclaimed my excitement to the world about how my family is officially no longer dairy free. I described the method we used to introduce dairy to Winston (and previously Carter), following the specific instructions of an allergist. In this post I also noted that we were not performing endoscopy and biopsy procedures to check for the presence of eosinophils, which would indicate that the dairy was causing a flareup of Eosinophilic Esophagitis. We made this decision based on the opinion of that same allergist, who assured us that if an allergen was in fact a trigger food, then Winston would begin to display symptoms and we would know for sure.

For the most part, the public response I received was very positive; everyone was congratulating us on our latest food allergy milestone. But when I shared my post on a pediatric EoE support group page, a few mothers chimed in with their opinions. One wrote (paraphrased):

“How do you know that you aren’t doing damage to his esophagus without scoping? My child has had no symptoms [for 3 years] but still fails his scopes.”

To which another mother replied:

“She doesn’t.”

Ahem.

I thought about responding with the words that immediately filled my head, but then I would have stooped down to this woman’s level. So instead I just removed my post and reassured myself that some people simply lack, oh what’s the word… ah yes, tact.

What I believe this woman meant to say to me was:

“It is my understanding that just because one doesn’t have symptoms from a food allergen, doesn’t mean that food allergen isn’t an EoE trigger. You can still be damaging the esophagus without presenting any symptoms. You might want check with your physician about this. Best of luck though! [heart emoji]”

You know, in a supportive way. Because after all, isn’t that what an EoE support group is for? To build up other moms who are dealing with their kids’ food allergies, not to belittle them on social media.

But all rudeness aside, these comments did get me thinking… and researching. Sure enough, the very first website I clicked on confirmed what was said. The Kids with Food Allergies Division of the Asthma and Allergy Foundation of America states that “sometimes, foods that people eat regularly may be triggers, even ones that were never associated with symptoms. This is the difficult part of EoE… Eosinophils can be triggered by a food with minimal – or in some cases – no symptoms… Symptoms are not a reliable way to monitor one’s EoE. Repeat biopsies are necessary to directly see how an individual responds to treatment.”

I felt like the floor was ripped out from underneath me. Here I am thinking we are moving forward, getting out of this horrible phase of our lives, and suddenly now we are taking a step back. What I thought was a sure thing – no symptoms, no allergy – was not. Then my mind flooded with questions.

Could Carter be showing no symptoms, but his eosinophils are back from the foods we introduced last summer? Are we damaging his esophagus without knowing? Should we have scoped after each food? What if the dairy allergy Carter outgrew that we believed never contributed to his EoE, was actually contributing to his EoE, but not as much as the soy… is that why he doesn’t have any symptoms? What if he does feel something when he eats, like tightness in his throat, but he just thinks it’s normal so he never says anything?

Why do I still not have a definitive answer about Winston? Does he have EoE, FPIES or regular IgE food allergies? Do I need a definitive answer if he is symptom free? Why was his scope clean in the middle of his vomiting spell – wouldn’t there have been at least one eosinophil in his biopsies if he did have EoE? Could he have a mild case of FPIES without the diarrhea? Could he have FPIES and an IgE allergy to oats simultaneously?

My initial thought was to call the gastroenterologist at Helen Devos Children’s Hospital who had scoped both of them to get her opinion, but as I recalled she didn’t seem too concerned about needing to re-scope either. Maybe there was something to that… maybe not. But I had reached my limit (again) and needed some answers. It was time to see a specialist.

I called down to the University of Michigan Food Allergy Clinic in Ann Arbor and made appointments for all three of my boys. I figured since we were going down there anyway, might as well have Mason’s strawberry allergy re-evaluated too. Miraculously, they got us in on August 27th and 28th, the week before school started; Mason and Winston on the first day at one facility, Carter on the second day at a different facility.

If you know anything about University of Michigan medicine, you know they don’t let just anyone in; these physicians are at the top of their game and stay current on all medical practices. They are the best of the best. And of course, I did a little reading up on the physician we were seeing before our arrival. She was board certified in pediatrics and allergy/immunology, specializing in pediatric food allergies and asthma. She’s even doing EoE food allergy research with Johns Hopkins. We basically hit the allergist jackpot as far as I was concerned and I couldn’t wait to get answers to my questions.

Here’s what happened…

Mason – Strawberries

We started with Mason because he was the easiest. By that I mean his allergies have been the most “normal”, the easiest to diagnose. Mason has always had IgE-mediated food allergies, the kind that cause an immediate reaction upon ingestion of the food. He always broke out in hives, first from corn as an infant and then from strawberries at age 3. Our only question with his history was whether or not he did actually have a strawberry allergy, as he had broken out in hives a second time without eating any strawberries at all. So the allergist’s solution was simple.

“Let’s retest him for strawberries and see if it’s positive.”

She performed a skin prick test (SPT) on Mason’s arm. There were 4 pricks: one for strawberries, one for birch trees, one for a negative control and one for a positive control. The birch trees was solely used for size comparison, since Mason had tested highly positive to them in the past. And after 20 minutes of impatiently waiting (and a little crying because the welt from the birch was unbearably itchy), we were pleasantly surprised to see that strawberries was negative.

“You can go ahead and reintroduce strawberries to Mason. Start with a 1/4 of a strawberry on day 1. Wait 20 minutes. If nothing happens, give him another 1/4 of a strawberry. Then on day 2 give him a whole strawberry. If he has no reaction, it is safe for Mason to eat strawberries again.”

We were so excited! We couldn’t wait to get home and start testing!

Winston – Oats

Next up was little Winston. In preparation for our appointment, I gathered up anything that pertained to his health history. This included a 2-page summary of his symptoms and treatment, a copy of the puke log I created to track his vomiting, printed images of the endoscopy he had done last year and a photo album on my phone with pictures of his previous skin prick test results. I even had a picture of his vomit, you know just in case. Better to be over prepared than under!

We reviewed his health history summary in detail:

Reflux-like symptoms from birth
Projectile spitting up with the introduction of infant oatmeal, a connection we didn’t realize at the time
Diet changes for mom (breastfeeding) without any relief
Treatment with all of the reflux medications without any relief
Positive allergy testing for soy
Excessive vomiting with the introduction of Cheerios (26-31 times per day)
Positive allergy testing for oats
Endoscopy without visible EoE or reflux / negative for eosinophils in the biopsies
Positive allergy testing for bananas and cocoa bean
Treatment for EoE using Budesonide Slurry and food elimination
Immediate vomiting after eating yogurt
Gradual subsiding of vomiting over several weeks
Reintroduction of dairy in June 2019 without any symptoms recurring
Complete remission for a year

My biggest question for the doctor was whether or not we should re-scope Winston since we had recently introduced dairy back into his diet.

“Winston never had EoE. You cannot have Eosinophilic Esophagitis without the presence of eosinophils in the esophagus. I do understand this assumption from your allergist… EoE does run in families and it is more prevalent in boys. But Winston’s biopsies were negative. There is no reason to re-scope him. We won’t find anything.”

Smack forehead.

“If you are certain that the oats triggered the vomiting, I am slightly suspicious that he might have chronic FPIES, but it’s hard to say for certain. Usually chronic FPIES presents diarrhea and failure to thrive. Winston never had these symptoms. It’s also possible he may have an atypical IgE-mediated allergy to oats. He could have both. I think today we should retest him for oats, bananas and soy, but not the cocoa bean [because he’s had chocolate a couple times without any issues]. But this won’t tell us if he has FPIES. The only way to diagnose FPIES is to do an oral food challenge. Children commonly outgrow FPIES to oats by age 5, and since you know the oats made him very sick, I do not think we should reintroduce them until he’s older. There’s no reason to put him through that; oats are very easy to eliminate from the diet.”

Let me back up for a moment. Food Protein Induced Enterocolitis Syndrome (FPIES) is a rare allergy that affects the gastrointestinal tract. The Asthma and Allergy Foundation of America defines (FPIES) as “a non-IgE mediated immune reaction in the gastrointestinal system to one or more specific foods, commonly characterized by profuse vomiting and diarrhea… FPIES reactions almost always begin with delayed onset vomiting (usually two hours after ingestion, sometimes as late as eight hours after). Symptoms can range from mild (an increase in reflux and several days of runny stools) to life threatening (shock)”.

There are two forms of FPIES: Acute (immediate and severe) is when the allergen is eaten once and symptoms present 1-6 hours after ingestion. Chronic (constantly recurring) is when mild and intermittent symptoms present after frequent exposure to the allergen. The most common triggers for FPIES are first foods like dairy and soy. Other common triggers are grains like rice, barley and… oats.

We retested Winn for soy, bananas and oats. You guys… they were all negative!

“You can reintroduce bananas and soy to Winston at home. Start with a small amount and gradually increase over 10 days. You are looking for delayed vomiting, usually 2-4 hours after eating. I will write you a prescription for Zofran in case he does have a reaction; this will stop the vomiting. Make sure he’s feeling better before you start.”

[Side note: poor little Winn started running a fever the day before we headed to Ann Arbor. The night at the hotel it was up over 102°. Fun times!]

So we agreed to wait on the oats oral food challenge until he was older but to move forward with other testing at home after he was over his little bug.

Carter – Soy

Day 2 in Ann Arbor and it was Carter’s turn. Though he has been in remission without medication for over a year, he’s the one who gave me the greatest concern. Similarly to Winston, I put together a complete health history for Carter with a list of my questions. I had a copy of my sleep log, just in case, along with photos of his previous SPT results and printed copies of his endoscopy. Together we reviewed Carter’s history:

Reflux-like symptoms from birth
Diet changes for mom (breastfeeding) without any relief
Difficult feedings and increase in spitting up with the introduction of cow’s milk formula
Treatment with all of the reflux medications without relief
Symptoms resolving after beginning soy formula
Gagging and vomiting on solid foods after 2 1/2 months of soy formula, a connection we did not make at the time
Recurrent ear infections (7)
Constipation
Introduction of cow’s milk at a year causing diarrhea and irritability
Pediatrician diagnosis of lactose intolerance – switch to soy milk
Night wakings (2-4 times per night)
Positive allergy test to dairy
Night waking worsens (4-11 times per night) with excessive thirst (10-20 oz)
Allergy test positive for soy
Wean from Prilosec
Allergy test mildly positive to tree nut, wheat, fish, sweet potato, vanilla, blueberry, coconut and sesame. Negative allergy test to dairy
Endoscopy without visible EoE or reflux
Biopsies with an eosinophil count of 6
Allergist diagnosis of partially-treated EoE from removing all allergic foods
Treatment with Budesonide Slurry and food elimination for over a year
Patch test for food allergens in March 2018 with a positive result to soy
Reintroduction of all food allergens (except soy) over several months without symptoms recurring
Complete remission without medication for over a year

Although Carter had shown no symptoms after reintroducing all of his potential allergens, our concern was that symptoms aren’t always present with a relapse in EoE. Did we need to re-scope to be certain?

“Should he have been scoped after he was off of the Budesonide? Or after each food we reintroduced?”

“Probably. But it’s difficult to analyze whether or not Carter had EoE for certain in retrospect. His eosinophil count was only 6 and as you know it must be greater than 15 to diagnose active EoE. Could the elimination of foods have partially treated it? Possibly. He also may have been PPI [e.g. Prilosec] responsive; we now know that some people have relief from EoE by taking PPIs. If any of the foods you have already reintroduced were actually a trigger for him, I would have expected to see some symptoms after a year of ingestion. If it had only been 2 months, I would say lets scope. But we would have noticed something by now. I think we should retest for soy today to determine what we do moving forward.”

[Edit: In a follow-up email, I questioned the allergist’s opinion that Carter may not have ever had EoE, as his eosinophil count was only 6. She confirmed that there are only two reasons why one would have eosinophils present in the esophagus: EoE or a history of severe reflux. And as I reiterated that there was absolutely no evidence of any reflux in Carter’s scope (according to our GI’s analysis), she agreed that he must have had EoE that had been treated with food elimination and/or PPIs.]

So we performed another SPT on Carter to check for soy. The poor kid screamed before, during and after the entire thing. And he is LOUD. But we powered through with YouTube Kids videos and ice cream bribery!

And holy cow, it was negative! The first time in years!

“I want you to reintroduce soy into Carter’s diet when you get home using soy milk. Start with 1/4 tsp of soy milk on the first day, then gradually increase the amount for about a week or so. After that, he can have soy protein in all forms. We are looking for symptoms of abdominal pain, gagging, food impaction, vomiting, food aversion and night waking. If in the future he presents any of these symptoms, then an endoscopy would be needed.”

“What about soy lecithin? We were told that soy oil was safe but to avoid soy lecithin.”

“Soy lecithin is actually safer than soy oil. There is never any soy protein in soy lecithin. People who are anaphylactic to soy can usually eat soy lecithin.”

Smack forehead.

The doctor laughs. “You don’t need to worry. I do not see anything alarming about the way your primary allergist has treated your boys. Sometimes it’s difficult to diagnose these diseases and we have to make assumptions.”

On our drive home my head was in such a fog. My husband kept asking me why I wasn’t happier. I had been so worried we were taking a huge step backward but after our appointments it seemed we had made even more progress than before. Minus the possible FPIES diagnosis, it appeared that our kids might be on their way out of the food allergy phase; I knew for sure Winston did not have EoE and all of their skin tests were negative. So why was I not jumping for joy? I think the problem is my Type A personality just doesn’t favor the “unknown”. I struggle with not having definitive answers. But the past is the past and there’s no way to go back and make different decisions. Some things will remain unknown, and we just have to let them go, as long as we continue to move forward.

As I am reflecting on my feelings now, I ask myself… am I upset with our primary allergist for things he could have done differently? The short answer is no. Our allergist was our saving grace. So maybe we should have scoped Carter last year or maybe Winston didn’t need the Budesonide because he never had EoE; maybe Carter could have been eating a dozen more foods containing soy lecithin that we never allowed him to have. Does it really matter? No. Because in the grand scheme of things, our allergist made my children feel better; he took away their pain and discomfort. For that I will be eternally grateful.

And to the rude woman who turned my world upside down and made me question literally everything we had done over the past few years, if it wasn’t for your comment we probably wouldn’t have the answers we now have today. So for that I wholeheartedly thank you [heart emoji].

[See If At First You Don’t Succeed for the results of our at-home allergy testing. Don’t forget to subscribe!]

To Whom It May Concern

So here you are, about to give birth to a little human and suddenly you realize…

I need to pick a pediatrician!

You do a quick scroll through Google, find a doctor within reasonable driving distance, check a couple reviews and then make a phone call. You set up a meet and greet, take a tour of the clinic and scan the rooms with your mommy vision.

It’s so clean in here! Must be a nice place.

Everyone is smiling and friendly, and commenting on how adorable your big belly is. The receptionist gets your info, hands you a stack full of pamphlets and you glide out the doorway feeling assured and excited.

We have a pediatrician. All set!

This is exactly how I chose my firstborn’s pediatric clinic and I’m sure it’s pretty similar to how you chose yours. Some of you may have done a little more research on medical backgrounds or called your friends to get recommendations for the best of the best. But the reality is, we really have no idea what we just signed up for. We are going in blind. And do recommendations really matter anyway? One person may have a great experience with a physician and another person may have a miserable experience with that same physician. Everyone is different and every patient has different needs.

Case in point… we had no issues with the pediatricians who cared for our oldest son Mason. They were by the book as far as well-child exams go and they got us in whenever we needed. We floated around from one physician to the next (about 5 of them) and it was great because we were getting to know everyone. And my favorite part was that when we called the office to make an appointment, a nurse ALWAYS answered the phone. This is almost unheard of. It was an awesome place to go for Mason who didn’t have any serious medical issues. But for my second son Carter, who was eventually diagnosed with Eosinophilic Esophagitis and food allergies, not so much.

Here’s why we had to let them go:

They band-aided his symptoms.

Carter suffered from reflux-like symptoms basically from birth. The pediatricians treated it with medications and diet changes. But as his symptoms persisted for months and months, all they did was prescribe more medications and recommend new diet changes. Not ONE of them stopped to question why this line of treatment wasn’t working or sought to find out the cause.

They refused to refer us out.

I asked our pediatricians for a referral to see an allergist twice. Both times we were denied. There are two reasons I can think of why a doctor would not give a child with blatant health issues a referral to see a specialist: either his ego was so huge that he refused to believe his diagnosis was wrong OR he saw dollar signs. I assume it was probably a little of both.

They listened, but they didn’t hear me.

I kept describing to the pediatricians the difficulty Carter had when he was eating and they would all look at me like I was nuts. Here was this chunky, happy baby in the 85% percentile for weight. How could he possibly have eating issues? Then when he started screaming at night, they kept telling me it was “behavioral”. At one point I sobbed my eyes out in the exam room and told the doctor I knew in my heart that something was wrong with him. She told me to try sleep training. She didn’t hear me. None of them did.

They missed all the red flags.

For most of Carter’s first year of life, we were in and out of the doctor’s office on a regular basis and we were seen by every doctor in the practice. With each new physician I had to repeat his life story over and over again, trying to remember every detail (which was a lot). They just weren’t familiar with us or his history. Because of this, none of them comprehended the severity of Carter’s symptoms. Had we been treated by one physician, I believe someone would have noticed that the reflux medications hadn’t been working for months, that maybe we were dealing with something greater than a little heartburn. They also would have noticed the crazy number of ear infections Carter had and would have (I hope) referred us to an ENT. But they didn’t. They missed it all.

So what’s the best way to let your pediatrician go?

Well, that depends on how mad you are.

If your experience was anything like ours, your initial reaction may be to bust through the doors, arms flailing and telling all of them to go to you know where. But that won’t get you anywhere; it will only solidify any assumptions they already have about you being a crazy person. You’re better off staying calm and getting your point across.

After Carter’s diagnosis, I was furious. To the point that I couldn’t even be in the same room with these people for fear that I might strangle one of them. I was also so overwhelmed with hurt and emotion there was no way I would make it through a sentence without turning into a blubbering mess. And I needed these doctors to hear me this time. So instead of trying to have an in-person discussion, I decided to write them a letter and sent it in the mail. I suppose an e-mail would have sufficed, but there’s just something about signing a letter by hand and sealing the envelope that says “I mean business.”

Here’s what it said:

To Whom It May Concern,

I would like to begin this letter by expressing my gratitude to the entire staff of [clinic]. Since 2012, your physicians, nurses and receptionists have exemplified professionalism and courteousness, and have exceed my expectations in availability. The care you have provided to both of my children for their basic medical needs has been wonderful. And so for that I thank you.

I am writing, however, to address an issue regarding my youngest son, Carter, who has been a patient at your office since his birth in November of 2014. For over a year he has been suffering from various medical conditions including eating issues, recurring ear infections and the like, so much so that he has been seen at your office 15 times in addition to his well-child exams. He has also been seen at [urgent care] on a few occasions. Having been treated by all 5 of your physicians at one point or another, I believe it has been difficult for your team to truly grasp the complexity of Carter’s medical issues.

At 3 months old, Carter began having difficulty with feedings and was screaming during and after his bottles. Over a 2-month period he was treated with medication for acid reflux. When his symptoms worsened at 5 months, he was diagnosed with lactose intolerance and began a soy formula diet. It seemed to resolve the issue until 7 months when Carter began gagging and vomiting with solid foods. By 10 months Carter was refusing food and started feeding therapy at [hospital] where they determined he had severe food and oral aversion. Fortunately, this was resolved after a few weeks of therapy.

At 1 year we were told to introduce cow’s milk to Carter, hoping he had outgrown the lactose intolerance. This resulted in diarrhea, irritability and a trip to [urgent care]. The physician who treated him there believed he was having an allergic reaction to the cow’s milk (causing otitis media) and recommended having him tested at an allergist. At a followup appointment in your office I was told for the second time that because Carter did not have common symptoms of a dairy allergy (rash, vomiting, etc.), allergy testing was not necessary and I was not given a referral I requested.

From the beginning of December until recently, Carter was waking in the night screaming inconsolably (up to 11 times per night). During this time he suffered from colds, otitis media, sinus infections, gastroenteritis, croup and teething pain, all of which I am aware can cause night wakings. However, in between illnesses the night waking continued and I was told on two occasions it was most likely behavioral. At Carter’s last appointment (15-month well-child exam), I strongly urged that something else was going on but it was recommended that we try sleep training. After a full week of sleep training with very little improvement, I began reviewing Carter’s lifelong symptoms and did my own research. What I found led me to believe that Carter may be suffering from a food allergy with less-common symptoms. Having new insurance that did not require referrals, we decided to take him to [allergist] where I have been a patient for 7 years.

We discussed Carter’s symptoms in detail and [allergist] quickly came to a conclusion: difficulty with feedings, painful burps / acid reflux, irritability and night waking can all be symptoms of food allergy. More specifically, [allergist] believes that Carter has been suffering from Eosinophilic Esophagitis. He also believes that Carter’s recurrent otitis media may be related. With skin testing it was confirmed that Carter does in fact have an allergy to dairy.

I hope that after reviewing all of this information you can understand my frustration. It’s possible that Carter has never had lactose intolerance or acid reflux, and the culprit may have been food allergies all along. Our child has been dealing with discomfort for most of his life, and has been screaming in pain for the last few months, all of which may have been avoided had we done allergy testing on the two occasions I requested it. I am also confused as to why our inability to discontinue Carter’s Prilosec medication has not raised any red flags. Furthermore, I cannot comprehend why we have never been referred to an ENT given that Carter has had 6 cases of otitis media in a 9-month time period, which I reminded you of several times.

I feel as though I have repeatedly expressed my concerns in these words I have said countless times: there is something wrong with my child. Overall my concerns have been disregarded and not taken seriously. It is for this reason that we will no longer be requiring your services and have decided to seek medical care elsewhere for both of our children. We will be in contact with you soon to begin the transfer of medical records.

Best regards,

Brianne Geetings

I was taught that when you receive poor service at a restaurant, you shouldn’t forgo leaving a tip; rather, leave a small one. Make a statement and just maybe it will help to prevent someone else from receiving the same terrible service. This was exactly my intent behind this letter: I laid out the facts, pointed out their mistakes and let them know it was unacceptable. And it worked. A few days later I received a phone call from a very apologetic office manager, begging us to stay with their practice (most likely to keep us from sharing our terrible experiences with the world). But it was too late; the damage was already done and we had moved on.

So I guess the moral of the story is… follow your heart. There is nothing more important than the health of your little one and if your pediatricians aren’t doing what they are supposed to (no matter how friendly or available they may be), it’s time to let them go. Speak up. Let your voice be heard. And maybe what you say will stay with them a while.

It’s Food Allergy Awareness Week!!

Sorry, I’m a little excited. I didn’t even know such a thing existed until a few weeks ago when I received an e-mail from FARE (Food Allergy Research & Education). May 12-18th is officially considered Food Allergy Awareness Week, a time to educate the nation on the 32 million Americans living with food allergies, including my 3 sons Mason, Carter and Winston. This is totally my JAM!

First I wanted to find a way to spread the word to our community about the seriousness of food allergies. So I did a little research and found this awesome handout from FARE about their Be a PAL program: Protect A Life.

Unless you are living with food allergies, most people don’t think it’s a big deal. The truth is, you can DIE from food allergies, so it’s a very big deal. Fortunately (or not, depending on how you look at it) my kids have EoE so they are not anaphylactic, and Mason’s strawberry allergy is pretty mild, so the life-threatening aspect doesn’t apply to them as much. But I know there are kids at our elementary school who are anaphylactic; we even have an allergy-free table in our cafeteria. I can’t imagine how nervous those kids (or their parents) are on a daily basis. So I e-mailed the principal and she was on board! We printed 400 copies and brought them up to school.

Then we participated in #tealtakeover Day on May 16th… a day to wear teal, the color of food allergy awareness. I obviously had to get some t-shirts! [HUGE selection on Amazon.] My kids were so excited to wear them! I think the last time all three of them smiled at the same time was when they opened their Christmas presents.

Even our Grandma D joined in the fun! She wore teal around the Chicago Ohare Airport, on her BIRTHDAY nonetheless. She spread the word of food allergies all the way to NYC!

Then to wrap it all up, Friday was our elementary school’s Spring Carnival – a crazy fun evening full of hot dogs, games, a bounce house and… a bake sale. As with any social gathering, my kiddos are always left out when it comes to sweet treats they can eat. So we decided to contribute some Wheat-Free, Dairy-Free and Soy-Free Rice Krispies Treats and Puppy Chow.

Look how exited Carter was to buy something! Makes this allergy mom’s heart so happy.

And since the ice cream that came with our hot dog dinners was off limits, we had our own special treat at home: soy-free ice cream cones for all and dairy-free ice cream for Winn.

All in all, it was a great Food Allergy Awareness Week and we can’t wait for next year!

FARE – Food Allergy Awareness Week
Kids With Food Allergies
FAACT – Food Allergy Awareness Initiatives

He’ll Probably (Not) Outgrow It

Last week I was changing the sheets on my son Mason’s bed when I noticed a new collection taped to his wall. He does this often: taping pictures of things he loves near his bed so he can look at them when he goes to sleep. For a while he had a drawing of Princess Peach up there… his first pin-up. The latest is a few pictures of his favorite people’s houses (grandparents and neighbors) that he printed off of Google Maps (long story) and a family photo from our spring break vacation to Myrtle Beach.

Among these photos, I noticed a little piece of notebook paper with a list he had written out. I inched closer to see what I could decipher. Then I couldn’t help but laugh to see my husband’s face accidentally covered up!

The note says:

ALLEGYS KIDS

Mason

Strawbeerys

Carter

Soy (Soybeen oil is ok)

Winn

Soy (Soybeen oil is ok)
Oats
Dairy
Bananas
Choclat

Our 6-year-old made a list of all of the food allergens that he and his little brothers are currently avoiding. And, just like his momma, he made sure to include the important details… that soybean oil is “OK”. So cute! Then I asked him about it.

“Mason, why did you tape a list of everyone’s allergies to the wall?”

“Well, I want to cross them off when we outgrow them.”

Oh the sweetness!

“That’s awesome! You know what, though? You and Winston might outgrow some of your allergies, but Carter probably won’t outgrow soy. People don’t usually outgrow EoE allergies.”

I can’t even count how many times people have said to me “he’ll probably outgrow it” when referring to my kids and their food allergies. Then I always have to politely correct them: maybe some, but probably not all.

When Mason was first diagnosed with his corn allergy, our allergist told us immediately that we were lucky, as corn is one of the food allergies children commonly outgrow (and he eventually did). Others include dairy, wheat and egg. According to the Wexner Medical Center at Ohio State University, about 80% of children with these allergies outgrow them by the age of 18. Peanut, tree nut and shellfish allergies, however, are only outgrown about 20% of the time. But these stats only apply to those who have IgE-mediated allergies, which cause immediate symptoms like rash, hives and difficulty breathing.

Eosiniphilic Esophagitis (EoE) is a different story. When Carter was diagnosed with EoE (from a soy allergy) we were told that he will most likely never outgrow it. EoE is a chronic allergic inflammatory disease causing eosinophils to collect in the esophagus as a non-IgE-mediated allergic response. There is no rash or difficulty breathing, merely symptoms like inflammation within the esophagus that are usually delayed.

Although EoE and the food allergens that cause it may never be outgrown, I try to look at it from a positive perspective: Carter is not anaphylactic (scary!) and his disease is entirely manageable. And, as the EoE allergic reaction is considered a delayed response (meaning the allergen would need to be eaten on a regular basis for the reaction to occur), my hope is that some day when little Carter is fully grown he will be able to eat small amounts of soy without triggering a reaction, basing the amount he can eat on the severity of his symptoms. Or maybe, if we’re lucky, someone will develop an EoE medication that will reverse the reaction, like a Lactaid of sorts. I would hate for him to miss out on all of that yummy Chinese food!

For now, I think we will keep Mason’s little list of food allergies. How wonderful it will be if ever the day comes when we can cross off those allergens, one by one.

The Allergy Way To Vacay

People often make fun of my Type A personality. I’ll be the first to admit that sometimes I can be a little extreme. When I was a child I used to alphabetize my sock drawer by color. Yep. I don’t do that anymore though, now that I have three children of my own… most days I don’t even have time to put my socks away. But I do like to be organized. I like to label closet storage bins and make spreadsheets for just about everything. I even plan vacations a year in advance. Laugh at me all you want, but I have children with food allergies. Planning is a must.

We just took our FIRST ever (just us) family vacation to Myrtle Beach, which may seem strange to people because our oldest son Mason is already 6 1/2. It was our first vacation, not by choice, but because of… food allergies. After Carter was born, we couldn’t go anywhere. His food allergies and Eosinophilic Esophagitis symptoms limited us for about 2 years. I could barely take him to the grocery store. Then Winston came along and the only place he went was the doctor’s office. Last summer he puked so much from his food allergies I had to have our groceries delivered.

I originally had this Myrtle Beach trip planned for 2018 spring break, not knowing that Winn was going to develop food allergies. So we canceled (because of this and other non-allergy family issues) and rebooked for 2019. I was DETERMINED to take our kids on a fun vacation. After what they went through, they deserved it… we all deserved it.

Of course, I made a packing list (in a spreadsheet – ha!) three weeks in advance to make sure we had everything we needed for our road trip.

Clothes ✔️
Toiletries ✔️
iPads and Toys ✔️
Bread and Yogurt ✔️

Bread and yogurt?

Yep. We have to bring our own allergen-free foods like soy-free bread and dairy-free yogurt because there’s no guarantee I’ll be able to find these foods in a new city. I also know that the only thing my allergy kids can eat at the continental hotel breakfast is probably an apple.

We decided to stop part way, knowing full well our 17-month-old wouldn’t last the full 16-hour drive. I chose a hotel in a town outside of Charleston, WV, for no particular reason other than the timing was good. Right next door was a Golden Corral restaurant, a place we had never been before – and probably won’t ever go again… yuck. But we didn’t know, so we ventured in. I was excited because Golden Corral posts their allergen information online, so I was able to pull up every item in that buffet and see who could eat what. I wish someone could have video taped me walking through the line, anxiously scrolling on my phone as I dished up plates of food. I was getting some looks from the local folk. Eh, whatever.

We finally made it to Myrtle Beach and checked into our villa… a 2-bedroom condo with a full kitchen. A full kitchen was a necessity so that we could make some of our own food. It was so stressful trying to find allergy-friendly restaurants for dinner, I can’t imagine trying to eat out for breakfast and lunch too. At the grocery store a couple miles away, I picked up our usuals… and boy was I glad we brought our own bread! There was not one loaf on that shelf without soy in it.

I promised my husband I wouldn’t go crazy with the activity planning and tried to just “wing it”. But this only made me more stressed out. We so wanted to eat at the fun local restaurants with the perfect views of the ocean, and we tried to… once. The children’s menu had chicken strips, hot dogs, spaghetti and some others, one of which I figured MUST be safe for the kids to eat. But when our waiter (who barely spoke English) just didn’t understand what I was asking about the ingredients, it was game over. Winn was starving and we had to leave. I was so bummed; honestly I went in the bathroom and cried for a minute. We don’t have the luxury of picking a random restaurant; it’s too complicated. So we ate at Burger King that night. Then we decided to plan out restaurants for the rest of our trip.

I got on the Allergy Eats app (which I highly recommend for people with food allergies) and started my research. Allergy Eats allows you to enter your location, then select your allergens. It will pull up all the restaurants in your area rated in order by how well each one accommodates those allergens. You can also read other people’s reviews.

The last three nights we ate at Longhorn Steakhouse, LuLu’s and Hard Rock Cafe, all of which have their allergens posted online. My favorite by far was LuLu’s. They actually had separate menus for each food allergen AND a second waitress came out to take our order; she said the cook would make the boys’ food in a different area of the kitchen, change his gloves and use all new equipment. The service was SPECTACULAR, and it makes my heart so happy to watch my kids pick out food from a menu “just for them”.

Overall, I’d say our first family vacation was a success. Our boys had so much fun! We swam in the pool, walked under sharks at the aquarium, saw a movie (when it rained), walked the boardwalk, collected shells on the beach, played at the playground, bounced away at the trampoline park, held baby alligators at Alligator Adventure, won 3,700 tickets at the arcade, golfed a little Jurassic putt putt, and rode go-karts and kiddie rides at the Broadway Grand Prix. We may have been making up for lost time, just a little. So worth it! ❤️

The Allergy You Can’t See

Eosinophilic Esophagitis. Let me help you…

E-oh-sin-oh-phil-ic Eh-soph-a-gi-tis.

One of the strangest sounding medical terms I have ever heard that I can now spell with my eyes closed. Most people just call it EoE for short, but I like to say Eosinophilic. Makes me sound smart.

But what is it? According to the American Partnership for Eosinophilic Disorders, EoE is a chronic allergic inflammatory disease of the esophagus. Basically, these white blood cells called eosinophils collect in the esophagus as an immune response to certain allergens, most commonly from foods (but sometimes environmental). Because these eosinophils are not supposed to be in the esophagus, as they accumulate they cause inflammation, which leads to a number of symptoms.

For infants and children, EoE symptoms are:

Reflux that does not respond to antacids or Proton Pump Inhibitors
Vomiting
Food aversion (poor appetite)
Failure to thrive (from not eating)
Difficulty sleeping

For older children and adults, the symptoms of EoE include those listed above plus:

Difficulty swallowing
Food impactions
Abdominal and chest pain

Our little Carter’s EoE symptoms began after we started him on soy formula, which we decided to give him because he’d had a mild allergy to dairy. Except he also had an allergy to soy that we obviously didn’t know about; it never upset his belly, he never had a rash and his face certainly didn’t swell up like his brother Mason’s did when he’d had a reaction to corn. But that’s the thing with EoE… you can’t see the reaction.

It took 2 1/2 months for Carter’s symptoms to come out. It began with gagging and vomiting on his solid foods when he was a little over 7 months old, like projectile vomiting in his high chair. A couple months of that and he just flat out refused to eat, which led us to feeding therapy. At a year when we switched him to soy milk is when the night screaming began. Screams so loud, like he was being tortured. We assume this was from the unbearable “reflux” pain he felt from laying down, which the antacid medications he was taking for over a year didn’t even touch. It took us over two years to finally get a diagnosis from an endoscopy procedure and biopsies of his esophagus. Then it took another year after that to alleviate his symptoms by removing his food allergens and having him drink a steroid medication.

Strangely, the first time I had heard about EoE was from a good friend of mine who was having chronic pain in her… esophagus. I remember I was a couple months pregnant with Carter and she had called me in the middle of the night asking if I would go with her to the emergency room. She described to the ER doctors what she was feeling: a horrible burning sensation in her throat, almost like something was stuck, that got worse at night when she laid down. She had been dealing with this pain for months; her primary care physician at the time was pumping her full of antacids and anxiety medication, you know in case it was “all in her head”. Eventually her allergist (also my allergist) tested her for food allergies and sure enough, she had a tree nut allergy. She stopped eating tree nuts and coconut, and her symptoms subsided. Then she got a new primary care physician.

Want to hear the crazy part? About 5 years later, her husband was also diagnosed with EoE. He had started choking on his food, so much so that my friend had to give him the Heimlich maneuver; his esophagus was so inflamed that food would actually get lodged in his throat. He ended up also having food allergies… chicken and wheat (poor guy!). Which brings me to the prevalence of EoE.

I recall reading how rare EoE was a few years ago when Carter was first diagnosed. Like 1 out of 100,000 people (or something like that). Now it’s 1 out of every 2,000 people. And that’s not because EoE is taking over the world; rather more doctors are becoming aware of the disease and are able to properly diagnose people. There are so many people who suffer from chronic “reflux” symptoms that just won’t go away, despite taking reflux medication, who come to find out they actually have a food allergy.

If your child has been taking reflux medications for over 6 months with no relief, or has any of the other symptoms listed above, I HIGHLY recommend you make an appointment to see an allergist or a gastroenterologist. It could be food allergies… the kind you can’t see.

Eosinophilic Esophagitis Resources:

American Partnership for Eosinophilic Disorders

American College of Allergy, Asthma & Immunology

Sorry To Be Annoying…

Texting a friend…

“Sorry to be annoying, but can you tell me what food you’re having at the birthday party? So I know what to bring for my kiddos.”

Asking a waiter…

“Sorry to be annoying, but can you please go check to see if the chicken strips and french fries have soy or dairy in them?”

Making plans with friends…

“Sorry to be annoying, but can we go to this restaurant instead? My kids can’t eat there.”

Emailing the PTO president…

“Sorry to be annoying, but can I stop in and check the popcorn ingredients? I don’t know if my son can participate in Popcorn Fridays.”

I find myself using this phrase ALL the time. But here’s the thing. I’m not really sorry. Or as the cool kids say… #sorrynotsorry.

Because you see, I would do ANYTHING for my children. I would do anything to protect them physically and emotionally. So before you roll your eyes or get annoyed with me, or tell me I am exaggerating and being a crazy over-protective mother, put yourself in my shoes. Imagine you had children with food allergies who absolutely could not eat specific foods, for in doing so would make them VERY sick. Would you not text your friend to make sure they had something to eat at the birthday party? Would you not ask the waiter to check the ingredients so your children weren’t stuck eating a bowl of applesauce for dinner? Would you not research and recommend places to eat with your friends before making plans? Would you not contact your school to make sure your child wasn’t left out of a fun activity?

Sure you would, as I’m sure you would do anything to protect your own children physically and emotionally.

I have a young relative who was recently diagnosed with Celiac and whenever we are planning to see her, I always make sure that I have gluten-free foods on hand so she is not left out. Recently her father said to me, “Please don’t take offense, but we will probably just bring our own food for her. Sorry.”

NEVER be sorry. Food allergies and intolerances are a PITA (pain in the you know what) and they are out of our control. So as parents we do what we need to do, whatever we feel is best for our children. We do things the allergy way. Because we love our kids more than anything in the universe, food allergies and all.

Allergies and the School Party

Staring at the delicious spread of snacks and treats laid out across the classroom counter, my son Carter began to fill his plate.

“Momma, can I have those crackers?”

“Sorry bud, those have soy so you can’t have them. You can have your crackers when we get home.”

“But everyone has them and I want some!”

Cue meltdown.

There’s nothing more devastating than watching your 4-year-old sob his little eyes out at the school holiday party because everyone around him is eating something he can’t have. I learned my lesson in October at Halloween. I thought bringing him a homemade gooey Rice Krispie treat would suffice, but it didn’t. He wanted a Ritz cracker like everybody else.

Although Carter is beginning to understand the concept of food allergies and that he can’t eat things with soy, at his age the reality of it is still upsetting at times. As a mother I always do my best to have substitutes on hand to avoid situations where he would feel left out. Fortunately, his teacher uses an online sign-up sheet for parents and more often than not people will give a little description of the “salty snack” or “sweet treat” they plan to contribute. This makes it easier for me to plan ahead.

For Valentine’s Day this year his preschool class threw a little celebration full of food, crafts and adorable games. As I scrolled through the sign-up sheet, I made a mental note of what Carter would and would not be able to eat.

Pretzel Sticks – Probably OK.
Cheese & Crackers – Nope. Pack our own.
Valentine’s Cookies – Homemade? Store-bought? There’s no way to know.
Fruit – Always soy free! We’ll bring this.

Then we got to baking. Soy-free Valentine cookies coming right up! Not only did we enjoy an afternoon activity together, but having Carter involved in the process gets him even more excited at the party to eat his “special” cookies. My husband joined the festivities and said the party was a success!

Soy-Free Dairy-Free Sugar Cookies

Soy-Free Crackers, Soy-Free Cookies

Soy-Free Sugar Cookies