July 2012

New Disorder EoE Does Not Stop Determined Family

Written by David Block for Protected Tomorrows

As a teenager, the last thing you’d want to hear is that your favorite foods such as pizza, hot dogs, and ice cream are off limits. Unfortunately, for 17 year-old Matthew Groninger of Levittown, PA, that’s the news his doctor delivered along with the diagnosis of Eosinophilicesophagitis (EoE).

EoE is characterized by elevated eosinophils (a type of white blood cell) in the esophagus. When persons with the disorder eat something causing an allergic reaction, it can injure their esophagus. Symptoms include vomiting, difficulty swallowing, reflux that doesn’t respond to therapy, poor appetite, poor growth and abdominal or chest pain, according to the American Partnership For Eosinophilic Disorders (APFED).

Groninger’s diet now consists of organic fruits, vegetables, and a special amino acid formula. He is fed through a feeding tube, which bypasses his malfunctioning esophagus. In addition to EOE, Groninger is mentally challenged, though that is a separate issue.

For the first 16 years of Groninger’s life, he often vomited after eating. Other times he experienced choking and severe heartburn. He was finally diagnosed with EoE by doctors at Children’s Hospital of Philadelphia (CHOP).

Having a diagnosis was helpful because his parents, Wendy and Carl Groninger, could initiate a meal plan and new course of action, drastically reducing his symptoms. However, the treatment brought about new financial obstacles. The cost of eating only organic fruits and vegetables topped $300 per week.

“Key Stone Mercy pays for Matt’s formula and feeding pump, but not the organic food,” said Wendy Groninger. “Carl and I both work sixty hours a week to pay for his food.”

Wendy Groninger said that at first she felt self-conscious about eating pizza in Matt’s presence. “I’d always be sure to eat it in another room.” Now she does not have to worry because missing out on it does not bother him; nor did it bother him that he could not have birthday cake for his 17th birthday. Instead, Wendy placed candles on an apple as she and her husband and their younger son/Matt’s younger brother Jacob sang happy birthday. “He liked having candles on an apple,” his mother remembered.

“Matt takes everything well,” said his father, Carl. He said that Matt is friends with several attractive fully able bodied girls. “They don’t hang around him out of pity. He’s fun to be around, and he has an upbeat attitude.”
His parents said that one of Matt’s biggest worries this year was not his set of challenges, but whether or not the Philadelphia Flyers would make the playoffs.

The family hopes that there will be a cure for EoE some day. Unfortunately, it might not be any time soon because EoE is relatively new. According to Dr. Wendy Book, President of APFED, EoE was first discovered about 35 years ago and the first formulas used to feed people with it were distributed in 1995.

“One child in every 1000 to 1200 has EoE,” said Book. “That stat pertains only to children in the U.S. We don’t have enough data about children in other countries who have EoE.”She said that adults have EoE, too, yet many of them had it at such a young age, but were never properly diagnosed.

According to Book, APFED was founded in December 2001 by three mothers whose children had EoE. The families had difficult times finding physicians familiar with the condition. Meanwhile, their children went on suffering.

“APFED’s mission is to improve education and awareness of EoE,” said Book, who joined in 2004, because her son had been sick with the condition since infancy. “It took him two and a half years to get a diagnosis,” said Book. It was frustrating because both she and her husband are physicians; their children have access to great medical care, but these advantages did not help their infant son.

“I joined because I needed support, and I wanted to make sure that nobody else had an experience like we did,” said Book. She became APFED’s president in 2009.

There are EoE support groups throughout the country, but neither Carl or Wendy Groninger have had time to join any because they are too busy working.

For more info about EoE: www.apfed.org.

View this story video at Philadelphia News WTXF Fox 29.