JONESBORO, AR (KAIT) - Most of us take food for granted.
We eat when we’re happy, sad, and to celebrate; food is a central part of our lives.
But, one Region 8 child may never be able to experience food at all.
Koen Smith is one of the happiest kids you will ever meet.
Most people are shocked when they learn he has a chronic disease that makes him incapable of eating food.
He loves to play sports.
“Soccer, t-ball, basketball, swimming,” said Koen.
Nothing slows him down, including a rare disease.
His parents, Chance and Kirby Smith, discovered something was wrong with Koen very early in his life.
“He was hospitalized a few times for dehydration, failure to thrive, they did pretty much every test that you can possibly imagine and then five days before he turned one, he was scoped and they discovered that he did, in fact, have Eosinophilic Esophagitis,” said Kirby.
Also known as EoE, Eosinophilic Esophagitis is a chronic, allergic inflammatory disease that affects the swallowing tube, the esophagus.
According to the American Partnership for Eosinophilic Disorders, one in 2,000 are born with the disease.
Koen was born healthy and for the first five months of his life, he was able to breastfeed without any problems.
“We didn’t notice any type of symptoms until he started to eat food,” said Kirby.
The first food he tried was rice.
“When that started, it went downhill pretty quickly, and he started vomiting numerous times a day, 10-15 times a day, ” said Kirby.
His parents tried other foods, but, he had the same results.
“I just started making posters in my house and I would put them up on the walls, trying to figure out which food was working or what ingredients for specific things he was eating,” said Kirby. “It was like a mystery.”
Through Koen’s primary care physician, Dr. Jane Sneed, Koen was connected with Dr. Robbie Pesek at Arkansas Children’s Hospital in Little Rock.
“He came to see us really early in life, with concern for food allergies,” said Dr. Pesek.
The initial strategy was to try to eliminate foods from Koen’s diet to find the source of the problem.
But, that didn’t work.
“Eventually got the endoscopy, they’ll take a camera into the esophagus, look at it and do biopsies that show the allergy cells, the eosinophils, and high numbers and the biopsies that gave us his diagnosis,” said Dr. Pesek.
The results, at the time, were a bit of a relief for the family.
“Of course, we didn’t know what was really to come at that point,” said Kirby." We had been through so much leading up to that."
Because EoE is rare, there are limited ways to manage it.
“One is to use some type of medication, we use a lot of reflex medicines, we call PPIs or proton pump inhibitors, most people know Nexium or Prilosec or things like that,” said Dr. Pesek. “We can also use a form of a swallowed steroid where you swallow it and it coats the esophagus to make the eosinophils go away.”
Or, you can continue to try to identify what allergen is triggering the disease by eliminating foods to see if any food is “safe” to eat.
“I ran across one article that was about a child that could only eat potatoes, and I thought, oh, that’s never going to be my child,” said Kirby. “And, it is my child, he can’t eat anything. He has no safe foods.”
“We have not been able to find foods that he can tolerate so far,” said Dr. Pesek. “So he’s been on that elemental diet, and while he’s on that, he’s done great.”
While they continue to learn more about the disease, a food that comes in a powder called EleCare, is Koen’s reality.
“He loves the EleCare, he drinks the vanilla, he doesn’t like the original, and he does take it orally,” said Kirby.
The EleCare Jr. is a complete amino acid-based medical food that doesn’t have any allergens in it and is safe for Koen.
He drinks about 45 to 50 ounces a day.
“They can be sustained on that, and grow, and develop normally, just by taking that formula,” Dr. Pesek said.
“I’m convinced that he is honestly, healthier, because of it,” said Kirby. “He doesn’t eat all the processed foods and things that we eat. I think it’s because his body is getting exactly what it needs and not any other type of junk.”
And while Koen could try the steroids to see if he could potentially eat food at some point.
“Right now, he doesn’t ask for food, he doesn’t want the food, and I always say you can’t miss something that you’ve never had,” said Kirby.
He does still complete food trials to see if he’s capable of eating anything without needing a steroid.
But, once symptoms such as throwing up, a sore throat, or a chronic cough appear, he discontinues the food immediately.
'You do have to give the esophagus typically about 6 to 8 weeks for it to recover, for it to get rid of eosinophils, which happens when he is on is EleCare Jr. and not eating any other food," said Kirby. “So, he has to have that full recovery period before we can start a new food.”
“In Koen’s case, we want him to be a happy healthy kid,” said Dr. Pesek. “We want him to eat as much as possible but, even if not, he’s still been a happy kid.”
“People ask me all the time; do you eat in front of your child,” said Kirby. “Like, why would you put him through that? But, it doesn’t phase him. He’s never had it. He doesn’t remember having it and so he doesn’t want it. He does want to smell it and he does want to feed it to us. That’s what he loves.”
Koen is at a healthy weight and tall for his age.
He has been a patient at the Cincinnati Children’s Hospital and gone through genetic research as well.
He has a little brother named Sheppie, who has a minor case of EOE but, nothing as extreme as Koen.
“One of the doctors there told me that I needed to go ahead and accept the fact that my child may never eat food and after I did that, we were able to move on because, every time we do a food trial now and he fails we’re still okay because he still has his EleCare Jr.,” said Kirby. “Any food that he passes from here on out, is just considered extra. Unfortunately, he has yet to pass a food. But, one day we have hope that he may have a food.”
Kirby has developed an advocacy group for those suffering from EOE called Arkansas Eosinophilic Support in hopes of uniting those suffering from the disease.
It allows those dealing with the disease to discuss what’s worked, what hasn’t, procedures, medications and much more.
The Smith family calls Dr. Pesek their “Angel in a White Coat” because of his support and guidance through Koen’s entire medical journey.