Eosinophilic esophagitis

Our youngest was born after a very precipitous birth. Short labor, made to the hospital and within 15 minutes of our arrival he was here. He looked like his paternal grandfather (big, square, boxy ribcage) with beautiful blue eyes. The first night I awoke suddenly in my room to see a nurse standing next to my bed. His first words were, “Ms. Paulsen, first I want to tell you that your baby is fine.” Apparently they had looked over and noticed that he was blue. He had a large mucus plug in his trachea which was suctioned out. They called the pediatric resident on call who determined that he was fine. I was told that this was not an uncommon condition after such a quick delivery and the only that I needed to do was nurse him in the nursery that first night so the nurses could keep an eye on him. We brought him home and fell in love. But he was not like his older brother. He cried a lot. He had terrible eczema (around his ears, the top of his head, his arms). One area on his forearm developed what is known as a lichenified lesion. A thick, crusty area that looked like a lichen or tree bark. He vomited a lot. I mean projectile all the time, a lot. And he would not fall asleep without me reclining on the couch and holding him in my arms…for months. My husband and I talk about how we almost divorced over it. Very, very stressful.

His eczema was treated and eventually he outgrew it (about the age of 3-4). But he had terrible allergies, always snotty, always stuffed up. We treated him with over-the-counter meds given to us by the pediatrician. We also noticed that he self-selected out of a lot of foods. Wouldn’t eat bananas or cantaloupe, hates most vegetables (although he does like broccoli). About 3 years ago he started complaining that his stomach hurt. Not all the time, just sometimes. We would bring it up with the pediatrician when I would remember, it wasn’t all the time after all. And he ate well and grew and met his milestones, but was not a very happy child. The pediatrician told us that stomach aches were the number one complaint in children his age, especially with school issues. He started complaining of chests tightness when playing basketball. We saw an allergist and he was given an inhaler. His face would swell and his eyes would get red and weepy when he went into his friend’s house, his friend with a guinea pig. He did well in school so we just plugged along.

He stated complaining of what sounded like heartburn and started taking Tums, which helped. Then in October I noticed that he was taking 5-6 Tums a night. I thought: Enough! I scheduled an appointment with a pediatric gastroenterologist. I thought I would take him in and she would say, whatever, but I would have done what I needed to do and we could move on. She took one look at him and stated, “I think he has eosinophilic eophagitis.” She scheduled for a gastroscopy with biopsies of his esophagus, stomach, and duodenum. She came out with pictures and said, “this needs to be treated immediately.” What we saw horrified us and I started crying. My baby’s esophagus was swollen, inflamed, had open lesions, and his stomach was full of mucus and inflamed and reddened. The anesthesiologist, who was awesome, told us later, “lots of kids come in here to get scoped and they really don’t need it. Your son needed it.”

He was started on swallowed Flovent two puffs twice a day and one Nexium. We removed all tomato products, citrus, dairy (his biopsies showed lactose intolerance but no evidence of celiac disease), fried food, all spices and pepper. Try telling your 13 year old no more pizza. What was hardest for my husband and I was no more spaghetti or chili (which we loved and ate all the time). I researched EE and found that Children’s Hospital of Philadelphia (CHOP) and Cincinnati’s Children Hospital have excellent programs and the treatment prescribed by our peds GI doctor matches what their programs recommend. We’ve also started him on allergy shots and I cannot believe who much better his allergies are, it’s truly amazing how your immune system works, plus having the greatest pediatric allergist doesn’t hurt either. We are very lucky, some children have to be placed on elemental diets. CHOP allows their patients to drink soft drinks because they are free of protein, so at least he has something that he likes, and he loves slightly sweetened iced tea. He lives on homemade chicken quesadillas (very easy to make) an occasional homemade pizza (very light on the tomato sauce). Lots of chicken concoctions (chicken, rice, noodles, broccoli).

We’ve struggled as a family with the changes but today the Spare had his 10 month check up. He is doing so well. He is virtually asymptomatic. So, no follow up scope (because his symptoms are well controlled) but continue on the medication probably until his gets off allergy shots (which may be a few years). Then re-challenge him to see if it returns although Dr. Whitney said this is considered a chronic disease. Next checkup in 4-6 months.

This entry was posted in Annette Whitney MD, Children's Hospital of Philadelphia, Cincinnati Children's Hospital, eosinophilic eosphagitis, Michael Ruff MD. Bookmark the permalink.