Prader Willi Syndrome: Kids who can't stop eating

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by Jeff McShan / 11 News

khou.com

Posted on June 2, 2010 at 10:55 PM

Updated Wednesday, Jun 2 at 10:55 PM

HOUSTON—By all accounts, Houstonian Trevor Lang is a healthy 8-year-old boy. But to get a sense of what’s really going on inside his brain—and his stomach -- 11 News gave his mother, Robin Lang, a small video camera so she could capture some of his world.

Trevor’s world is all about food.

"You have to learn how to just control it and watch what you are giving him to eat," Robin Lang said.

Trevor has what’s called Prader Willi Syndrome.  His brain constantly sends messages to his stomach telling it he’s hungry.

"With Prader Willi Syndrome (PWS) the drive to eat is so powerful it is like a drug," said Dr. Ann Scheimann with Johns Hopkins Hospital in Baltimore.

At least twice a year, Dr. Scheimann visits Houston and Texas Children’s Hospital in the Medical Center so she can check up on the nearly 120 Prader Willi patients here. Those patients, like Trevor, need an army of understanding relatives and friends to keep them away from food.

"It’s very hard in this society. The kids with PWS often can’t go to the grocery store. They can’t go out to eat. And at family events they have to take a whole different focus," said Scheimann.

Trevor’s doctor saw potential signs of PWS when he was born. He was what’s called a "floppy baby" and unable to eat on his own.  So Trevor’s doctor asked for an additional blood test, and the test revealed that Trevor had PWS.

"It’s chromosome testing. You have to ask for it specific," said Robin Lang.

And right now, there is no cure for Prader Willi.

"They can become severely obese at a young age and then die of complications from obesity," Scheimann said.

The Langs have a very structured lifestyle. They said they only eat at certain times during the day, and they count calories.

If you visit their home, you’ll quickly notice their refrigerator is locked up with a bicycle chain. The pantry is locked up, too. At night, if there is a way to get to the food, Trevor will find it.

As a deterrent, his mother puts several bogus keys on a large key chain, making it difficult for Trevor to find which key goes to the locks.

Scheimann said she has heard all kinds of PWS horror stories.

"If an opportunity comes available with a freezer they’ll eat frozen food. They’ll sometimes go into garbage cans to eat food," said Scheimann.

And sometimes Trevor, who knows he’s a cute 8-year-old, uses him charm to get what he wants from strangers or neighbors.

"Trevor knows that he shouldn’t go and get things and he apologizes if he gets something. I tell him it’s OK. We just try and pick up and move on to the next hour," Robin Lang said.

There is a lot of information online about Prader Willi Syndrome, available at sites like fpwr.org and pwsusa.org.

"A variety of medicines have been tried to go after the pathway to the brain to the intestines and unfortunately to date there hasn’t been a lot of  success. They have also tried surgeries that they do on other folks who are obese and it doesn’t seem to be fixing the message," Scheimann said.

Robin Lang hopes this story about her son and PWS will spread the word about this problem. She believes some kids struggling with it haven’t been diagnosed—kids who can’t stop eating and could die.

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