NORMAL — Conary Schiebel was trying to solve a puzzle game on his mother's smart phone as she dug into the backpack he was wearing and pulled out a feeding pump.
"His formula is in his backpack, along with a pump that controls the number of milliliters (of nutrition and medicine) he receives per hour," mother Rhonda Behnke-Schiebel explained.
A tube carries the nutrition and medicine to a gastrostomy tube (G-tube) inserted through Conary's abdomen, delivering nutrition directly to his stomach.
"He is fed constantly," Rhonda said of her 3-year-old son. "Without it (the feeding tube), he wouldn't get enough nutrition."
Solving the puzzle of Conary's numerous medical problems has been a full-time job for Rhonda, a single mother with three older sons.
"My son has a lot of 'em (chronic medical conditions)," the Normal woman said. "Our goal is for him to have as typical a life experience as possible."
Conary has eosinophilic esophagitis (e-o-sin-o-FILL-ik uh-sof-uh-JIE--tis), also called EOE.
With EOE, a type of white blood cell builds up in the lining of the tube that connects the mouth to the stomach, according to Mayo Clinic. This buildup — in Conary's case, an allergic reaction to certain foods — inflames or injures the esophageal tissue, which leads to difficulty swallowing and food getting stuck.
EOE, a chronic immune system disease that most people have never heard of, has been identified only in the past few years but is considered a major cause of digestive system illness.
Conary's body has attacked many foods he has consumed in food trials over the years, meaning he has frequent abdominal pain, vomiting and diarrhea.
"A couple times a week, the pain is so bad, he'll be screaming," Rhonda said.
As a result of careful food trials, he is able to consume eight foods: chickpeas, rice, bananas, apples, potatoes, oats, wheat and tomatoes, the latter three just added two weeks ago.
But EOE isn't his only diagnosis. He also has:
- Functional feeding disorder, which essentially means that he doesn't eat enough to sustain himself.
"He'd eat 150 calories a day and he needs 1,200 calories a day," Rhonda said. "His body doesn't tell him when he's hungry. We don't know the cause."
That's why Conary gets most of his nutrition (along with his medicine for EOE, an antibiotic, a multivitamin and iron) through his feeding tube. Because he gets most of his nutrition from liquid, that adds to the diarrhea.
"On his best days, he has a couple episodes of diarrhea and vomiting each day," Rhonda said.
- Arrhythmia, or irregular heartbeat.
"Occasionally, Conary has a high resting heart rate," Rhonda said.
For that reason, Rhonda makes sure he doesn't play outside for longer than 20 minutes at a time. Conary also has an implanted cardiac monitor, which tracks his heart rate.
- Seizure disorder.
"His seizures are very mild," Rhonda said. "He stares off into space and he shivers."
He has about two seizures a month and each typically lasts less than 30 seconds.
"He's on anti-seizure medicine (which he receives through his feeding tube)," Rhonda said.
- Dyspraxia, a common developmental coordination disorder that affects gross motor coordination and may affect speech.
In Conary, this means walking, running and speech were delayed and will mean that it will take him longer to learn to ride a bike, Rhonda said.
- Autonomic dysfunction. For Conary, it means that sometimes, his body's thermostat doesn't work, Rhonda said. There are times during summer when he has trouble cooling down and times during winter when he has trouble warming up.
"He doesn't perspire," his mother said. "I need to watch his activity level so he doesn't get overheated."
In addition, Conary doesn't have as much energy as a typical 3-year-old. Including nap. He needs at least 14 hours of sleep a day, his mother said.
In addition to his Bloomington-Normal pediatrician, Conary sees a pediatric gastroenterologist, pediatric cardiologist, pediatric neurologist and a geneticist with Lurie Children's Hospital in Chicago.
No one knows the cause of the non-EOE conditions, but doctors suspect mitochondrial disease, which results from failures of the mitochondria, which are present in nearly every cell of the body and are responsible for creating more than 90 percent of the energy needed by the body to sustain life.
When they fail, less energy is created and cell death results. If the process is repeated throughout the body, whole body systems begin to fail, according to the United Mitochondrial Disease Foundation. Treatments and effectiveness vary.
"We don't know for sure yet if that's the underlying cause," she said. "More tests are needed."
Conary was born eight weeks early. He didn't want to feed, had vomiting and diarrhea and cried a lot because of the pain.
Traditional treatments didn't work so he was referred to a pediatric gastroenterologist who diagnosed Conary with EOE.
"My reaction was 'EO what?'" Rhonda recalled. "It was nothing I'd heard of before."
A feeding tube was placed to make sure he gets sufficient nutrition.
Treatment included removing common allergens (such as milk and eggs) from his diet, then gradually introducing foods to determine what he could sustain based on what he liked, what works for children with EOE, what has nutritional value and what can be prepared in various ways and works with other foods.
After food trials over two years, Conary can eat eight foods. Some foods, such as beef and chicken, he was not able to tolerate.
"He had violent reactions, including vomiting, blood in his stool and he'd double over in pain," Rhonda said.
In January and in April, he became so dehydrated and ill that he was hospitalized for several days.
Conary goes to Easter Seals Bloomington Center, 2404 E. Empire St., for speech and feeding therapy with speech language pathologist Dawn Miller and for work on his fine motor skills (such as dressing and feeding himself) with occupational therapist Meghan Day.
Miller, who first saw Conary when he was 9 months old, is working to get him to eat more so he relies less on his feeding pump and to improve his speech, where he remains several months behind his peers.
"But I think he's doing really well," Miller said. "He's made a lot of progress in the last six months."
"We spend a lot of time with doctors, but I don't want my child to grow up feeling like a lab rat," Rhonda said.
"In some ways, he's very much like a typical 3-year-old. He loves Thomas (the Tank Engine), trains, playing on the playground, drawing and coloring.
"But we have to keep an eye on him. Eventually, he'll have to be responsible for his own care. My goal for him is to have as typical a life as possible."