12-year-old Unable To Feel Thirst Or Hunger

By: Kyle Munson, The Des Moines Register Iowa — The soundtrack of daily life in the Jones household is a persistent mantra that Michae...

12-year-old Unable To Feel Thirst Or Hunger

By: Kyle Munson, The Des Moines Register

Iowa — The soundtrack of daily life in the Jones household is a persistent mantra that Michael and Debbie intone for their 12-year-old son, Landon.

Take a bite.

Take a drink.

Take a drink.

Take a bite.

These parents have been forced to jabber away like this in the last year because of their son's mysterious illness: He lacks all impulse to eat or drink. And he might be the only person in the world burdened with this bizarre medical condition.

Michael, 43, who prods most often, is a desperate father. He's become a verbal robot in a grim campaign to keep his boy fed.

Take a bite.

Take a bite.

Take a drink.

"We feel like we're seeing him deteriorate in front of our eyes," Michael said.

12-year-old Unable To Feel Thirst Or Hunger

Landon, an avid rock music fan, would rather be listening to Aerosmith or the Cars. But he's sick and needs these constant reminders from Dad.

It all began when Landon woke the morning of Oct. 14, 2013, suddenly having lost all sense of hunger and thirst. He was dizzy nearly to the point of passing out. His chest was clogged with phlegm that he kept coughing up.

The previous day seemed normal. Landon had been riding his bicycle and devoured a bowl of ice cream and slices of pizza.

"Something happened in the middle of the night," Michael said, "and he woke up this way, and it hasn't stopped."

An eventual chest X-ray revealed a bacterial infection in Landon's left lung that soon was eradicated.

But that was just the beginning of a gantlet of doctors' appointments and medical tests in the last year that have taken the family to five cities — their local pediatrician in Waterloo; Cedar Rapids; Des Moines; Madison, Wis.; and the Mayo Clinic in Rochester, Minn. — in a frustrating quest for clear answers and a cure.

Landon now is being considered for an appointment at the National Institutes of Health in Bethesda, Md., which examine a relative handful of the rarest cases annually.

12-year-old Unable To Feel Thirst Or Hunger

Landon Jones, 12, is shown in a school photo from this year, at right — weighing 68.4 pounds — and last year, at left — at 104 pounds. Landon is losing weight due to an apparent hypothalamic dysfunction that started just over a year ago. (Photo: Photos special to the Register )

He began to shed 2 pounds per week last fall and has withered from his former weight of 104 pounds to a gaunt, tenuous 68.4 pounds.

Michael and Debbie, married 14 years, have battled every ounce of the way in a futile effort to pack pounds back on their oldest son.

He wants to feel normal

Landon arrived home from school last week with his playful brother Bryce, 9 — "kind of the Woody Allen of the school," as Michael described him.

The parents pulled Landon's lunchbox out of his backpack. One bite was missing from the corner of the ham and cheese sandwich they'd sent with him. The boy had munched perhaps half a dozen chips.

Bryce and the family's Labrador-bloodhound mutt, Bailey, romped through the living room, a blur of happy energy swirling around the lethargic Landon. The weary, bespectacled boy tends to lie on the sofa after school.

He missed 65 days of school last year.

Landon, with zero appetite, struggles at the extreme opposite end of the spectrum as America battles rampant childhood obesity. It has more than doubled in children (to nearly 18% for ages 6-11) and quadrupled in adolescents (nearly 21% for ages 12-19) in the last 30 years, according to the Centers for Disease Control and Prevention.

All he wants to do is feel like a normal kid.

Michael quit work to spend more time tending to Landon. His varied career has included time as a certified nursing assistant and his own pest control business in Cedar Falls. Debbie has been a medical assistant in the lab at Allen Hospital in Waterloo for 13 years.




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