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!!