Bizarre Medical Mystery: 12-Year-Old Boy Has No Desire to Eat or Drink
Landon Jones, now age 12, before and after his weight loss, due to a total lack of desire to eat or drink. (Special to The Des Moines Register)
What may sound like the perfect problem in our weight loss-obsessed culture has become a medical nightmare for a 12-year-old boy, Landon Jones, in Cedar Falls, IA. On October 14th, 2013, the middle-schooler totally lost his desire to eat or drink. His bizarre condition, which hasn’t compromised his sense of taste or smell, was accompanied by dizziness and a build-up of phlegm in his chest, which he continually coughed up.
More than a year later, Landon’s appetite has yet to return, and doctors are still trying to pinpoint exactly what prompted his mysterious malady. He simply woke up that way one morning, and the problem never resolved, his father Michael, 43, told The Des Moines Register. A bacterial infection in Landon’s left lung, which doctors spotted on an X-ray, has cleared, but his strange symptoms have persisted, compelling his family to take him to doctors in five different cities. He’s undergone a spinal tap, X-rays of the brain, abdominal imaging, and nutritional and mental evaluations.
Dr. Marc Peterson, a Mayo Clinic child neurologist, who speculated that Landon may be the only person in the world with his condition, said he’s been unable to diagnose Landon, despite intensely investigating his case. The National Institutes of Health — which accepts a handful of rare cases each year — is currently considering Landon as a patient.
Although Landon’s condition has gone unexplained, his parents do have a theory: The 12-year-old’s hypothalamus — a region of the brain that regulates hunger and thirst, among other things — may not be functioning properly.
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Three years ago, Landon began treatment for “absence seizures,” which are characterized by a brief, sudden loss of consciousness, where the person appears to be staring into space. His local pediatrician is researching whether Depakote, a brand of valproic acid used to treat the condition, may be toxic to the hypothalamus, although he’s yet to find any evidence of this in the medical literature. And this isn’t a particularly promising avenue to explore, since the drug is often associated with an uptick in appetite and weight gain.
The effects on the young boy’s body are hard to miss. Landon has shrunk from 104 pounds to 68.4 pounds, since he began dropping 2 pounds per week last fall. His parents haven’t seen him run a single time since his health issues began; he’s forced to linger on the sidelines during P.E. class. Landon missed 65 days of school last year, and his father quit working in order to devote himself to his son’s care. For a time, that meant sitting with Landon while he ate lunch, prompting him to take a bite of his sandwich or a sip of his drink. Now, Landon’s teacher uses a hand signal to periodically remind him to drink from his water bottle.
Even fast food and Halloween candy — the normal treats of childhood — fail to entice Landon to eat more than a bite or two. If his condition doesn’t improve, doctors will have to insert a gastrostomy tube, allowing them to pump nutrients directly into his stomach.
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Landon’s illness has also taken a toll on his family. Beyond the emotional strain — his parents admit to feeling like failures, since Landon only continues to lose weight — they’ve taken a serious financial hit: They currently owe the Mayo Clinic more than $4,000, and were forced to set out collection jars at convenience stores to help fund a trip to Madison, WI, for an appointment — which his father found to be incredibly humiliating.
But they’re not giving up hope. Their tireless search for answers will continue, and they ask that any medical professionals with relevant advice contact them at 319-215-7531 or hawkeyext@cfu.net.
