Medical Mystery: 12-Year-Old Boy May Be First in History With This Illness That Has Left Doctors Baffled
Oct. 27, 2014 10:45pm Oliver Darcy
Medical professionals have been left baffled by a mystery illness that has stolen away a 12-year-old Iowa boy’s urge to eat and drink.
According to the De Mines Register, Landon Jones lacks all impulse to eat and drink because of a his struggle with a medical condition that he may be entirely alone in battling.
“We feel like we’re seeing him deteriorate in front of our eyes,” his father, Micahel,told the Register.
The 12-year-old was afflicted with the strange condition after waking up sick in the middle of the night about a year ago. His family said he kept coughing up phlegm after a day of riding his bicycle and eating ice cream and pizza.
“Something happened in the middle of the night,” Michael said, “and he woke up this way, and it hasn’t stopped.”
According to the Register, a chest X-ray found a bacterial infection in his left lung which was quickly eliminated. However, while the bacteria was successfully eradicated, so was Landon’s appetite. The young boy quickly lost weight, falling from 104 lbs to 68.4 lbs, the Register reported.
Medical mystery: Iowa boy, 12, has no urge to eat, drinkhttp://t.co/2fCYZ88h4k pic.twitter.com/OtYeGLovX4
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Since then he has visited several doctors and had countless medical tests performed on him — all of which have yielded no cure. His parents now hope the National Institutes of Health reviews his case later this year.
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Medical mystery: Iowa boy, 12, has no urge to eat, drink
Kyle Munson, The Des Moines Register 10:19 a.m. EDT October 27, 2014
A 12-year-old Cedar Falls, Iowa, boy lost his sense of hunger and thirst. His parents have to constantly remind him to eat and drink. Experts can't explain how or why, but his parents believe it's a hypothalamic dysfunction. VPC
CEDAR FALLS, Iowa — The soundtrack of daily life in the Jones household is apersistent 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.
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.
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.
He still can taste and smell
During the 25-minute lunch break at school last year, father and son would sit at their own table to maintain the necessary routine.
Take a bite.
Take a bite.
Take a drink.
This year, Landon has eked through entire school days on his own.
One of the seventh-grader's teachers flashes a subtle hand signal while in front of the class to cue Landon to take drinks from his water bottle.
"In the back of your head, try to remember Mom and Dad's voice," Michael and Debbie told their son at the start of the semester.
The next step will be to insert a gastronomy tube in Landon's abdomen, circumventing the boy's mouth to nourish him directly through a hole in his stomach.
Michael and Debbie essentially have been surrogates for what is assumed to be Landon's malfunctioning hypothalamus, a control center at the base of the brain. The size of a flattened pea, it regulates not only hunger and thirst but also body temperature, blood pressure, sleep cycles and other autonomic functions.
Dr. Marc Patterson, a Mayo Clinic child neurologist with 33 years of experience who first examined Landon in November, said the boy very well may be the only case of his kind in the world.
"The challenge of understanding brain function out of the tool kit we have ... is still quite inadequate," Patterson lamented last week.
Landon has been scanned, poked and prodded in a barrage of tests. He has endured a spinal tap, encephalograms, abdominal imaging and nutritional and psychiatric evaluations.
It was confirmed that, yes, he still can taste and smell.
"We looked very hard investigating Landon, and we've not been able to make any definite diagnosis," Patterson said.
So the Jones family continues to fight with its only weapon: more calories.
Michael and Debbie have scrutinized their son's weight so much that they pinpointed the 9-ounce difference between their home scale and the scale at Peoples Community Health Clinic in Waterloo, where they visit their pediatrician, Dr. Rachana Krishna.
Rough road for family
Michael has spent hours in front of the computer researching the hypothalamus.
This medical drama also has exacerbated the couple's financial woes. They owe more than $4,000 to the Mayo Clinic alone, Michael said.
Last fall, the family set out five jars at local convenience stores and collected $150 for gas money to drive to a medical appointment in Madison.
"You have no idea how humiliating it was," Michael said.
Illness remains a mystery
The only faint lead so far is the fact that three years ago, Landon began to be treated for absence seizures. He would sit and stare into the distance, oblivious to his surroundings. He was prescribed Depakote, a brand of valproic acid commonly used to treat such seizures, and was on the drug for about a year.
Landon's local pediatrician wrote last week in her email to NIH pressing her patient's case: "Would there be any correlation between the valproic acid and toxicity on hypothalamus. I had not heard of this in the literature search that I did, but I wanted to check if you had any thoughts about it."
Patterson remains skeptical that Depakote is the ultimate culprit, because the drug — whose manufacturer, Abbott Laboratories, paid a $1.6 billion federal and state settlement two years ago for its aggressive marketing — typically is associated with increased appetite and weight gain.
So the boy's illness remains a mystery.
Michael and Debbie's simple plea: Is there anybody who has dealt with anything remotely like this?
If so, do you know what might help their son?
Besides another bite.
And another.
And another ...
Seeking any clues
Michael and Debbie Jones are desperate for any information from medical professionals that might help their son, Landon. If you have relevant advice, contact them at 319-215-7531 or hawkeyext@cfu.net.
