Where are we now?

So, it has been over a year since Andy’s diagnosis. We have removed virtually ALL corn and its derivatives from his diet. I have grown quite accustomed to making nearly everything from scratch (bread, dinner, lunch, breakfast…). His birthday was a challenge, but I did find corn-free powdered sugar and he had an awesome Diego/dinosaur cake. We do not go out to eat and the organic/natural stores are saving me even more work! Andy is gaining weight (in the 10-20th percentile!!!) and we have adjusted well to the healthier lifestyle. Things had been going well since the summer and his last Flovent treatment, until October.

In October one of my fears came to life. Andy got sick. Not the vomiting we were used to, but feverish sick. His temperature rose over a few hours time and rarely dropped below 100 for 6 straight days. Why was this so bad? Children’s Tylenol and Motrin are loaded with corn syrup. But, we knew the alternative of high fevers was not the route we wanted to take, so medicine it was. I felt as though I was poisoning him with each dose, but we made it through the week (finally!)

Well, it didn’t take too long for all that to catch up with us. By the middle of November he was vomiting weekly again and December was worse. This time around, though, Andy understood more of what was going on. He would say his throat hurt as he was eating and then a moment later told us he needed to throw up. After 2 times over the holiday weekend out of town, we called in our final refill for the Flovent and contacted our GI doctor after the weekend.

After talking with the GI’s office, we were able to set up another scope for this upcoming week. And, after the relapse in November, I began contacting EE centers for more information. My concern is that I don’t know how to manage this disease. We think it is corn because of our “testing” but is it really?? There is so much unknown about all this and we feel like meeting with people who specialize in all this will help Andy’s quality of life (now and in the long-term). So many things are making sense as we look back. The red cheeks he has in ALL of his baby pics were surely due to a food allergy. The rough nights of sleep are certainly connected to his episodes of vomiting.

Our greatest hope now: find more answers. Is it a corn allergy? If yes, what are we missing? Or was it just the medicines for the fever for a week? If not corn, then what?

As I said, Andy has been a trooper through all this. He knows corn makes his belly “icky.” He no longer questions why he can’t eat most things at the store. He didn’t complain on Halloween or his birthday or the holidays when he couldn’t have candy with the other kids. He is an amazing little guy and we know we will get him through this. Fingers crossed for next week!!

Corn Allergy...now what?

So once we discovered all of this right before around Christmas last year, we were a little overwhelmed. I didn't worry too much at first, I just thought no more corn with dinner and probably no popcorn. He loved those 2 things so much, so having them as often as we did surely wasn't helping the situation...After some online research, we found a different story.

Corn is in EVERYTHING!!! I was SHOCKED when I began to read The Corn-Free Cookbook & Survival Guide by Steele and Knott (which is a wonderful resource!). Corn, or corn derivatives, are a staple in most all processed foods. High fructose corn syrup and corn starch are in a crazy amount of foods. I met with a dietician at our local grocery store and she gave me some ideas on the organic items and allergy-free foods, but corn is such a prevalent "natural" ingredient, that very few items work for us.

As we were nearing the end of his 2nd treatment, we began to eliminate all corn products from our diet. This was a huge undertaking and involved a complete overhaul of our pantry, fridge and freezer. We started conservatively and took out all "corn" ingredients (corn syrup, starch, meal, etc.). Our little guy did better, but within a few weeks, the vomiting returned. After consulting with the GI doc, we agreed to another round of treatments as we worked to get out all of the corn possible. That list is MUCH more cumbersome and includes derivatives of corn like: dextrose, fructose, citric acid and caramel. There is a comprehensive list in the book or on websites like cornallergen.com .

"Experimental" testing at home...

My hubby and the allergist discussed some experimental testing going on around the country with EE. It essentially is an allergy test specifically for it. Patients would have a "typical" allergy test on his/her back, except that instead of a scratch, actual pieces of the allergen were placed on the back and left there for 48 hours. After that time, the bandages were removed and "read" for an allergy. The doc explained how this would probably become common practice around the nation in several years once the FDA approved. That was all we needed to hear and that night, we got to work.

Over the next week, we had cycles of food "tests" all over our little guy's back. Each time was the same: we gave him a bath, got out the foods, placed the bandages over them and labeled each item. We started with the list of most common allergens, but no results. We moved onto his favorite foods that we had often, and still nothing. Just as he was about to complete his 2nd round of inhaler treatment, we tried one more round. As we removed the bandages that final time, we were shocked to find the spot where a single cooked kernel of frozen corn had been was red and irritated. We had a winner...

First round of meds down, sick again...

We were so thrilled to have him gaining weight again and see his development skills flourish, but we knew we had to get to the bottom of the cause of his allergy. The docs suggested that few kids relapsed after a course of the inhaler treatment, so we did not change his diet. Within a week of finishing the treatment, the vomiting returned. We also made a connection with how red his cheeks were. There was a big possibility it was all connected, but to what we weren't sure...

After his relapse, we pushed for a visit with the Peds allergist. This testing came up negative to all, but after talking with the doc, we were not surprised. As he put it, EE is not like other food allergies where someone might have contact or ingest it and break out or worse. EE is an allergy that is a reaction after being exposed over a period of time. He likened it to a nickel allergy when someone wears jewelry and only breaks out after continuous wear over several days or more. Our allergy was something that was a continuous exposure over time. That was going to me much more tricky to narrow down.

Eosinophilic esophagitis -- huh???

It took awhile for me to be able to pronounce, but after doing some research EE made all the sense in the world with our experiences. Basically, our little guy was having an allergic reaction in his esphogus. The allergen was causing his esphagus to become irritated and inflamed, which caused it to be less flexible for the food to travel down. Then when he ate, the food would get "stuck" and vomiting was the solution. This is obviously in my own words, so for more specific info visit: http://www.mayoclinic.org/eosinophilic-esophagitis/ or http://www.chop.edu/consumer/jsp/division/generic.jsp?id=83825 .

EE is a fairly new concept, so there is not a ton of information out there. We discovered doctors weren't that familiar either. So, now we had a diagnosis, but not a cause. Allergies can range from environmental to food related and everywhere in between. The GI doc started him on a treatment with an asthma inhaler. He swallowed 2 puffs twice each day. This was intended to coat the esphagus, therefore blocking the contact of the allergen. He started with an 8 week treatment and within days, no vomiting! His appetite returned and he finally began gaining weight!

How it all began...

It all began shortly after our little guy turned 1. He was growing just fine, but started vomiting during his meals. It would happen several times a week, but no fever or other symptoms. We spoke to the doctors, but we weren't too concerned at this point. Our daughter was a BIG spitter-upper when she was born, so this wasn't such a big deal for us...

As he closed in on his 2nd birthday, we started to get more concerned. He was so skinny and long and the vomiting was more frequent. After a little pushing with the docs, we discovered that he was also WAY behind on his growth chart (he had been charted on the girl's chart--which can vary a lot!). So after discovering this, we found out he was not even on the weight chart! This drew concern from the docs; we were asked to increase his calorie intake, the did many blood and stool tests, then we were referred to a Pediatric GI...

The GI meeting went well, although the doc felt he wasn't sick enough to warrant further invasive testing. We scheduled an appointment for closer to his bday for a weight check and to debrief how the calorie upping was going.

Upon meeting back with the GI doc, we discovered virtually no weight gain (which also meant he was falling further off the growth chart...). We decided to allow the doc to perform a scope as this was the only way to get some possible answers.

The morning of the scope was NOT fun. He had to be put out, plus they wanted to do some upper GI x-rays after the scope. The procedure didn't take too long and he came through it better than his mom :) He did not, however, cooperate with the x-rays and was not willing to swallow the contrast. The scope did lead us to some answers, though, and we were introduced to eosinophilic esophagitis.

There is corn in that??

The day we realized our little guy had a corn allergy was a relief and terrorizing all at the same time! We finally had some answers and hoped that he would start to thrive, but we knew it would be an uphill battle. I am hoping this can be a spot to offer some suggestions to anyone else in our shoes and to have a place to hear other's ideas on living with corn allergies!