Healthy Living: Boy fights rare auto-immune condition
For four years, all a Livingston County boy could do is ask, “Why?” His body seemed to be rejecting the same foods he’s enjoyed all his life. He was frequently sick and was forced to miss school and sports. Two months ago, the mystery was finally solved. It was a rare auto-immune condition that affects 1 in 3,000 children. But being diagnosed came with new challenges. Casey Bortnick reports.
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"I got hit pretty hard," said Andrew Walker, 12.
Toughness is a quality that comes in handy in youth lacrosse.
"I went up in the air and landed on my wrist and yeah, heard the crack that hurt," Andrew said.
A broken bone is nothing compared to what he's already been through.
"I just thought I was going crazy or something. I didn't know what was going on."
When Andrew was just eight years old, he started to experience some unusual symptoms.
"It was just hard to eat and it was scary because I felt like I was choking."
It seemed the same foods he enjoyed his whole life were making him sick.
"He was constantly getting sick, throwing-up, having chest pains, abdominal pains," said Andrew's mother, Nicole Walker.
Andrew developed allergies to milk, egg, soy, wheat, corn, peanuts carrots, cucumbers, beef, chicken, and red dye 40. He even had a hard time swallowing his own saliva.
"It felt like it would stop in the middle of my throat," Andrew said.
Doctors originally thought it was acid reflux. Andrew’s mother wanted a second opinion.
"Finally after four years of not knowing what was going on, I took him to a different hospital and that's when he was diagnosed, two months ago, with this Eosinophilic Esophagitis....It affects only the esophagus," Nicole said.
Eosinophilic Esophagitis or EE, is an allergic reaction of the tube that carries food to the stomach. Because the symptoms mimic other auto-immune disorders, Dr. Megan Gabel at Golisano Children’s Hospital says it’s hard to diagnose.
"These allergic cells come into the lining of the esophagus. Leading to poor contraction of the esophagus and over time that can lead to a narrowing of the esophagus," Dr. Gabel said.
There is no cure for the condition, but it can be effectively managed. Andrew’s mother is considering an inhaled steroid treatment and liquid formula diet. But she hopes a slow re- introduction of some of the foods Andrew is allergic to will help him tolerate a more diverse diet.
"Andrew is going to have to be scoped every two to three months to see is there's any damage being done to his esophagus as we re-introduce these foods," said Nicole.
Nicole is battling with her insurance company to cover the costs of seeing a specialist in Philadelphia. Insurance won’t cover travel costs.
"We never know day to day how he's going to be feeling. Is he going to be able to go to school? Is he going to be okay to play lacrosse?," Nicole said.
Despite the challenges, Andrew remains energetic and optimistic.
"It's been rough but we've gotten through it somehow. I want to keep playing," Andrew said. "I'm hoping one day we'll find the cure."
Whether it’s with a cast or EE, Andrew is determined not to miss out.
"I don't want people to treat me differently, I just want to be a normal kid," he added .