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.
Then he stopped eating, and my mommy alarm went off. Something wasn't right.
We were between pediatricians so I didn't know who 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, Calif. 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 lately. 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 an increased incidence of 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, shell fish, 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, Philadelphia and Cincinnati's Children Hospitals. 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.
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 and poking him in the hot little room.
Then it was my turn to ask questions.
How do we to fix it? Steroids, diet.