If you think something’s wrong with your child, you have to go with your gut feelings,” says Linda Churinskas, a West Windsor mother of three children. Without her perseverance, her son Jack’s eosinophilic disorder may never have been discovered.
“He had failure to thrive written all over and the pediatrician didn’t pick up on that even when I expressed concern. They finally gave me names of gastroenterologists when I told them I’d rather go to hear that he’s fine — but I knew that something was not right.”
“I was concerned when he was an infant. He was breast fed but when he was switched to a bottle he never finished it. He never had an interest in eating and did not gain weight.” The GI doctor suspected celiac disease or acid reflux before coming up with a definitive diagnosis. When Jack was 20 months old he had a feeding tube inserted and gained six pounds in the next two months.
“Things were very hard after we got Jack’s diagnosis,” she says. She found online support groups. “I wanted to feel connected to people and I felt compelled to participate more.”
To raise awareness of the disease, Churinskas set up a lemonade and cookie stand at North Post and Clarksville roads during the Memorial Day parade. “People were very generous,” says Linda, who raised $136 for research. “There is a not a lot of research now. There is a lot of educated guessing.”
She will attend a conference in Cherry Hill, Friday through Sunday, August 4 to 6, in conjunction with Children’s Hospital of Philadelphia. There is also an EOS Walk on Saturday, August 5, at 6 p.m. beginning at the Crowne Plaza Hotel in Cherry Hill. According to American Partnership for Eosinophilic Disorders website, www.apfed.org, “The diagnosis of an Eosinophilic disorder is life-altering. Beyond the debilitating physical symptoms, those afflicted often suffer social and emotional scars by living in a society that focuses on food.” Visit www.apfed.org for information or to donate.
Jack has had a series of elimination diets. After adding each new food, he has biopsies of his gastrointestinal tract done. Jack, who now eats bananas, apples, and potatoes, is beginning to try rice now. At night he is connected to a feeding tube in his belly.
Jack still cannot eat enough to maintain his weight. “We look forward to getting him enough food so the tube can come out,” says his mother. “Now that he’s getting older he is curious. When I took him to an ice cream party at my older son’s class, he ate marshmallows and sugar candies.”
Despite his numerous doctor visits, overnight stays in hospitals, and biopsies, Jack is a happy and active three-year-old child. He swims, goes fishing, and interacts with his big brother and sister.
Linda graduated from University of Delaware with a bachelor’s degree in international relations. After a career in finance, she is now a stay-at-home mom. Her husband, Dave, works in commercial real estate in New York City. They have lived in West Windsor for seven years. In September, David, 6, will be in second grade at Maurice Hawk School, and Leah, 5, begins kindergarten at Hawk.
“The hurdle yet to come is when Jack has to go to kindergarten,” she says. “I don’t see him being able to eat 1,”200 calories a day in two years. There are pediatric formulas available in juice boxes. Maybe in a couple of years he’ll be able to eat and have these as supplements. I don’t want to see him with a feeding tube his whole life.”
