Livonia boy coping with rare esophagus disorder

Sports, friends and school activities make up a normal day for a preteen. Medical issues can get in the way and create challenges for the whole family.

Andrew Walker, a 12-year old sixth grader in the Livonia Middle School has been diagnosed with Eosinophilic Esophagitis, or EE for short.

It is an allergic reaction in the esophagus, the tube that carries food from the mouth to the stomach. There is no known cure. Thirty years ago it was unknown. The disease occurs in an estimated 1 in 3,000 children. It is more common in males.

The foods that trigger EE vary from person to person. In Andrew’s case he is allergic to milk, egg, soy, wheat, corn, peanuts, carrots, cucumbers, beef, chicken and red dye 40.

According to mom, Nicole, when Andrew was eight years old there was a major switch in his health. He started having eating problems and he couldn’t swallow food.

Environmental allergies surfaced, too, such as to cats, dogs and dust mites. He was sick frequently. Andrew was born without the typical allergies to formulas and baby foods.

“Andrew was growing into allergies, and not out of them,” said Nicole who manages what he eats. A daily task both have to face is packing school lunches, along with eating at parties and holiday gatherings. Both admit that it is a daunting job since social times often revolve around food.

“A lot of EE is diagnosed as babies, so these kids have no awareness of what they are missing in not having a chocolate chip cookie. That’s not the case for Andrew,” said Nicole, a single mom and senior claims processing specialist for Allstate.

Part of being a 12 -year -old is being like everyone else. Andrew would prefer people not knowing that he is sick according to Nicole.

The Livonia guidance office, Principal Chuck D’Imperio and the teachers have been extremely co-operative. Everybody is working as a team together. Andrew has had to miss numerous school days and that creates stress for him. He has been diligent in going to his teachers to make-up work without being told.

“One thing that I hear all the time from people is that Andrew’s smile lights up a room and that you could never tell that he is sick. I’ve had people tell me that ‘he doesn’t look sick’, or that ‘he looks normal.’ People need to understand that just because someone doesn’t ‘look sick’ doesn’t mean that they aren’t. It’s important to these kids to try and maintain as normal of a life as possible,” said Nicole.

The road for the Walker family to get a handle on Andrew’s medical condition led from the local pediatrician, to Strong Hospital and on to the Mt. Sinai Medical Center, New York City.

Because there is no definite cause for the illness, and it often mimics acid reflux disease, it took a while for Andrew to be correctly diagnosed. The definitive way is by a biopsy of the esophagus performed by a gastroenterologist.

Presently the Walkers are looking into making contact with the Children’s Hospital of Philadelphia, Center for Pediatric Eosinophilic Disorders. Travel away from the Livonia area, time from work and school and expenses will be obstacles they will have to work through. Repeated visits will be necessary for evaluation, testing and monitoring.

The symptoms of EE that children experience are nausea, regurgitation, vomiting and a burning feeling similar to heartburn. They may have difficulty swallowing and gag frequently. Often, they feel like something is stuck in their throat. If EE goes untreated, the esophagus may narrow because of scarring.

There are three treatment options that include steroids administered by a metered dose inhaler. Elimination of foods and reintroducing them back into the diet one at a time is a second. Also, use of a liquid formula to get essential nutrients is the third part.

The Walkers have been told that with careful attention to diet Andrew may lead a regular life. For Andrew it means being involved with sports. He just finished a season of basketball and plays on a school team for lacrosse with fifth and sixth graders. For the past several years Andrew has shown a calf at the Hemlock Fair, and has come home with ribbons and trophies.

“I want to get the information out there in the area,” said Nicole. “May 13-19 is Awareness Week for EE. There are other families that I have connected to in the area and further away on Facebook. My family and friends have been helpful.”

In fact, there is one other family in the Livonia School district that has two children with EE.

“When a parent has to deal with a serious illness it’s all about finding support from other people going through the same situation on a daily basis as you. When you talk together you know that someone else really understands and you are not alone,” said Pam Maxson, health educator, Noyes Hospital, Dansville.

Like any family thrown a curve in life, the Walkers are taking it one day at a time and keeping a positive attitude with the unknown hurdles ahead.