Medical Mystery Boy Landon Jones' Appetite Loss Challenges Doctors: Why Doesn't He Get Hungry Or Thirsty?

Medical Teams Stumped By Boy's Condition
A boy's lost appetite and thirst has confused doctors for over a year. Photo courtesy of Shutterstock

Exactly one year ago, Landon Jones woke up without an appetite or thirst, and now at 12 years old, his parents must force food and drink on him every day to keep him alive. That Oct. 14, 2013 morning, his chest was clogged with phlegm, he started coughing up, became very dizzy, and has since lost 40 pounds. Landon’s mystery illness baffles doctors as they move throughout the body searching for a cause to possibly the first case of hunger loss they’ve ever seen.

"We feel like we're seeing him deteriorate in front of our eyes," his father Michael Jones told the Des Moines Register. Michael and his wife Debbie have traveled to five different cities searching for the reason why their young son has no appetite. The boy now weighs 68.4 pounds and has to sit out of gym and trombone class due to his weakness. His parents are desperate to find a solution and even use fast food to tempt his appetite, which may truly be nonexistent. He still has the ability to smell and taste, but it does nothing to trigger hunger or thirst.

Last year, Landon missed 65 days of school, and his teacher has been trained to signal him to drink water throughout the day because his body is unable to remind him. He isn’t new to needing special medical attention. Three years ago, he was treated for seizures, and once he started experiencing unrelated symptoms, chest X-rays showed a bacterial infection in his left lung.

Although the infection eventually went away, the medical bills towered over his parents, who have depleted all of their savings to pay for tests. His father stopped working to devote all his time to Landon, and during the 25-minute lunch break at school, he sits with his son to continue his routine of encouraged and coached eating and drinking. They’ve recently set up donation bins in local shops around their Iowan town and are crossing their fingers Landon will be accepted into the National Institutes of Health in Bethesda, Md. The Institute only accepts a handful of extremely rare cases each year, and if Landon doesn’t make the list, a food tube will be inserted into his abdomen to sustain his small frame.

What Makes Us Hungry?

Mayo Clinic Child Neurologist Dr. Marc Patterson first saw Landon a month after the boy woke with his strange ailment. "We looked very hard investigating Landon, and we've not been able to make any definite diagnosis," Patterson told The Des Moines Register. Patterson thinks the answer may lie in a dysfunctional hypothalamus, a regulator in the brain that controls hunger, thirst, sleep, body temperature, and other functions. Doctors can do blood work, but there is no test designed to detect a defect in the hypothalamus.  And why should there be when, to date, no one has reported such a problem to the medical community?

If the lateral hypothalamus is stimulated, it causes you to feel hunger. If there was damage done to that area, the brain wouldn’t be able to register hunger. On the other end of it, if the ventromedial hypothalamus is stimulated, it causes you to feel full. Set-point theory is the medical assumption the hypothalamus prioritizes maintaining homeostasis and balance within the body, which is how a body weight is predetermined, according to the National Institutes of Health.

Beyond the brain, the body is regulated with hormones. Ghrelin is secreted into the stomach and increases appetite, which is why levels sharply increase right before you eat and drops for three hours afterward. Meanwhile, leptin does just the opposite and suppresses appetite. This hormone communicates with the brain to balance the body’s energy balance — when the body exerts more energy it calls upon more calories to full it. However, an obese person’s brain has been found to build up a resistance and ignore the high levels of leptin floating in their blood telling them they have an imbalance — when the body consumes too many calories without enough energy to burn them.

Could the answer lie in a misfiring of wires caused by Landon’s seizures? Or is there a deeper rooted problem within his gut hormone production? Landon’s parents continue to research four to six hours a day to desperately find an answer before they have to resort to test tube feeding. Still, they rest their hopes on the possibility of NIH’s case acceptance.

“We don’t want recognition, we just want input,” Michael told the Register. “We want to feel like there’s another door open. We don’t want to feel like the only door open is the NIH. I think the medical field needs to collaborate and work with each other and try to figure out this rare situation.”

The family asks that anyone with information contact them at hawkeyext@cfu.net.

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