When Kylene Jordan makes a birthday cake for her son later this month, she will carefully select its ingredients.
This is because she wants to make sure that none of the ingredients included will harm her son.
Cooper, who will be turning three years of age on April 25, was diagnosed with an Eosinophil disorder in September 2009. This means particular foods will cause him to become ill through a range of symptoms, including vomiting, diarrhea, chest pain, stomach cramps and gagging.
Kylene said problems started early on, around the time he started eating solids at about four and five months. She said he had projectile vomit and would “scream in excruciating pain.” She said he was put on a protein pump inhibitor, but it did not work. Cooper had poor weight gain and scored low on his growth charts.
“We had such a hard time getting my son diagnosed,” she said.
Then after four days of testing at Cincinnati Children’s Hospital Medical Center, it was discovered he had an EOS disorder.
An explanation of eosinophilic disorders on the hospital’s website reads: “When the body wants to attack a substance, such as an allergy-triggering food or airborne allergen, eosinophils respond by moving into the area and releasing a variety of toxins. However, when the body produces too many eosinophils, they can cause chronic inflammation, resulting in tissue damage.”
The website further explains the eosinophils can attack in the esophagus, stomach, small intestine, large intestine, the blood and any organ.
In Cooper’s case, he suffers from the Eosinophilic esophagitis, or in the esophagus.
“We control it as best we can through elimination diet and Prevasid. It helps with the inflammation of the tissue in his esophagus,” said Kylene.
Foods that need to be eliminated from Cooper’s diet include dairy, casein, soy, soy leichitin, jams and jellies, honey, fruits, whey, milk, soybean oil, vegetable oil, high fructose corn syrup, syrup and fruit juices. Exceptions to the fruits are apples, bananas, grapes, cantaloupe, blueberries, peaches, pears, blackberries, raspberries and strawberries. He can also have maple syrup that is not real and Honey-Nut Cheerios. Other foods Cooper is able to enjoy include plain Sun Chips, coconut ice cream and Dum-Dum lollipops.
Cooper has been going to the children’s hospital in Cincinnati where he has been undergoing food trials every three months. The hospital is one of only a handful that specialize in EOS disorders. For now the trials are on hold since Kylene said they know pretty well what foods he can have that will keep him nourished.
“Plus, it’s a lot on him and us,” she said.
Some children suffer from more severe forms of EOS disorders, where they need the use of a feeding tube for nutrients. Kylene said they are lucky that is not one of the things Cooper has to go through.
Page 2 of 2 - National Eosinophil Awareness Week will be held the third week of May. Before then, on May 3, Kylene will speak at Trinity Lutheran Church about her son’s disorder along with a representative from Cornell Cooperative Extension in Oneida County.
Kylene said she hopes by talking about the subject, she can help others.
“It was so hard getting diagnosed,” said Kylene. “I didn’t know this disease was here and I was floundering. If I didn’t have health care professionals who worked with me until I got an answer, we could still be in a boat where Cooper would be really, really sick and not know what was going on.”
For now, things are going OK for Cooper. They are holding off on any more food trials at the time since he has been doing well with the foods he knows he can eat. Kylene said, too, that Cooper is getting better at communicating how he is feeling, such as saying “my belly hurts.”
Kylene said her husband Philip has found a recipe for chocolate cake that is dairy-free and egg-free, but will include canola oil and cocoa powder from Peter’s Cornucopia in New Hartford. She said the cake will be a Thomas the Tank Engine cake, one of Cooper’s favorites.