An esophageal nightmare

I thought my son was lying. He woke in the morning crying, pulling the sheets over his head and telling me he was going to throw up. I pulled him out of the bed by his feet and dragged him onto the hardwood floor. The crying continued through breakfast, where he refused to eat. The scene repeated itself for months, over and over, like a bad movie stuck on rewind.

How many times has a parent heard their child say their tummy aches and they can't go to school? I ignored it and sent him off to school. My son, Samuel, who is 12 now but was 9 when this episode started, has a lot of anxiety issues and doesn't like school, so I really thought that's what it was.

Then he stopped eating, and my mommy alarm went off. Something wasn't right.

We were between pediatricians, so I didn't know whom to call. I called our allergist, Dr. Mark Ellis, and he told me to take Sam to a gastroenterologist as soon as I could. I called the group he recommended and there was a three-month wait. That was too long — Sam was already pencil-thin and now he wasn't eating. So I called back and begged for another recommendation. Two weeks later, we got in to see Dr. Phyllis Agran. She suggested testing him as soon as possible.

The testing would involve putting Sam under anesthesia and taking biopsies of his esophagus.

Sam had the procedure done at Children's Hospital of Orange County in Southern California. For any parent, putting a child under is nerve-racking. Did I make the right decision? What if something goes wrong? Sam also has a huge fear of needles, so it is an understatement when I say it was not a lot of fun for either of us.

Dr. Agran came out after the procedure and said, "Samuel's esophagus was very inflamed, aggravated and purple." She thought the changes were compatible with "EE," also known as eosinophilic esophagitis, a food allergy that causes everything from heartburn to severe vomiting to severe weight loss. But she wouldn't know for sure until she got the biopsy results back. She handed me pictures of the inside of my son's esophagus. Even if it wasn't inflamed or purple, it was no treat to look at.

I just nodded, acting like I understood.

We met with her a week later, and she went over the biopsy results. She believed Sam had eosinophilic esophagitis because of the large number of eosinophils the biopsy had shown. She could have been speaking Greek. What was an eosinophil? I couldn't even pronounce it. I realized, later, when I tried to plug it into Google, that I couldn't spell it, either.

Basically, Sam was allergic to something he was swallowing. Dr. Agran had been seeing more and more kids with it. She told us we would have to go back to Dr. Ellis.

Sam felt very smug and vindicated. He announced to the school staff, "See, there was really something wrong with me!" I felt as if the words "bad mother" were stamped across my forehead.

Dr. Ellis had also been seeing more EE, but was at a loss about how to proceed. We started with the scratch testing of foods and pollens. Samuel's back became a big mass of red. He was allergic to corn, rice, soy, potato, garlic, cottonseed oil, peas, shellfish, melons, nuts and many pollens. His aversion to McDonald's fries now made sense to me. He knew it made him feel bad.

Then we went on to patch testing. This is another form of torture, I've decided. They put little bits of food they think you might be allergic to on your skin and tape it. Then it has to stay on for 48 hours, and you can't shower. The smell is really attractive at the end. After all of that, the tests were inconclusive.

Dr. Ellis then discussed our treatment options. Only a few U.S. clinics specialize in EE: San Diego's, Philadelphia's and Cincinnati's hospitals for children. I made the call to San Diego.

The clinic deals with all of the issues that come with EE — allergies, immunology, gastroenterology and nutrition. It's a one-stop shop. We didn't really know what to expect when we went.

In walked three doctors, firing off question after question. I felt as if I was on the hot seat. My husband sat mute and stunned. Sam tried to answer but felt intimidated by the number of adults looking at and poking him in the hot little room. Then it was my turn to ask questions. How do we to fix it? Steroids, diet. How did he get it? Don't know. Will he grow out of it? Don't know. What were the next steps? More tests.

This did not make me feel as if the drive had been worth it.

This all happened more than three years ago. Sam has been scoped four or five times, and our journey of learning how to deal with his allergies continues. CHOC now has its own clinic, and Samuel is a frequent visitor. He also still has to follow his diet.

The diet has been hard, especially for a preteen. Corn is in everything. When he made his grade school's honor roll, the Parent Teacher Association gave the kids an ice cream party. Ice cream and toppings usually contain cottonseed oil and corn syrup. The PTA president saw Sam's name on the list and ran to a local store to get him his own ice cream and toppings so he wouldn't be left out.

Sam sometimes has a pity party, and then I remind him he could have it worse; some kids with EE have to have feeding tubes. The thought makes me shudder.

We have all become label readers, constantly searching for something maybe he can eat. Even Sam's friends and their parents worry about it. We make a lot of homemade food so we can control the ingredients.

His scout master asked me recently before Samuel left for camp if he is "really" allergic to food, or if he's just "one of those kids who is a picky eater."

I struggled with how to answer; I was so tired of explaining. But I can remember asking myself the same question three years before. I finally said, "Sam has eosinophilic esophagitis, and if he eats the foods he's allergic to, it's like pouring battery acid down his esophagus."

I watched the scout master swallow. He understood.

COMMON SYMPTOMS OF EE

• Reflux that does not respond to usual medication

• Difficulty swallowing

• Food getting stuck in the esophagus

• Nausea and vomiting

• Failure to thrive

• Abdominal or chest pain

• Poor appetite

• Difficulty sleeping

MORE ONLINE

• www.apfed.org

• www.cssd.us/body.cfm?id=971

• www.air-docs.com/new/services.php

• www.chop.edu/consumer/jsp/division/generic.jsp?id=77065