A look ahead: 'Monster' in girl's belly creates insatiable appet - WAFF-TV: News, Weather and Sports for Huntsville, AL

'Monster' in 6-year-old's belly creates insatiable appetite

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Cassidie weighed twice as much as the average 5-year-old when she was old enough for kindergarten. Cassidie weighed twice as much as the average 5-year-old when she was old enough for kindergarten.
Kids with PWS lack a chromosome that triggers hunger messages to the brain. Kids with PWS lack a chromosome that triggers hunger messages to the brain.
Part of what is so hard for Cassidie's mom are the stares her daughter gets in public, because she is often covered in bruises and self-inflicted sores from the anxiety. Part of what is so hard for Cassidie's mom are the stares her daughter gets in public, because she is often covered in bruises and self-inflicted sores from the anxiety.
Cassidie refers to her disease as the monster in her belly. She says it tells her to eat all the food. Cassidie refers to her disease as the monster in her belly. She says it tells her to eat all the food.
. At bedtime, a locked gate restricts Cassidie's access to the kitchen, where the microwave is locked with a code and all food is kept out of reach. . At bedtime, a locked gate restricts Cassidie's access to the kitchen, where the microwave is locked with a code and all food is kept out of reach.

(WMC-TV) - A Mid-South girl says she has a monster in her belly because no matter how much she eats, she can never get full.

Cassidie weighed twice as much as the average 5-year-old when she was old enough for kindergarten.

"Food is the ultimate enemy in this house," said the 6-year-old's mother, Traci Floyd. "Last year in January Cassidie weighed 105 pounds ... It's just because her brain doesn't tell her stomach, stop, you're done."

Cassidie suffers from a neurological disorder called Prader Willi Syndrome (PWS). The condition affects one in 10,000 children.

"Children with Prader Willi require constant supervision. If you leave them on their own, they literally will, quote, eat themselves to death," said nurse practitioner Laura Porch.

Kids with PWS lack a chromosome that triggers hunger messages to the brain. In Cassidie's case it took years for doctors to determine her diagnosis because a prenatal test for the disorder does not exist.

"If we had known when Cassidie was born, we could have kept her weight down from the get go," said Floyd.

Cassidie was born with little muscle tone, which is a condition called hypotonia.

"They call it floppy baby syndrome," said Floyd.

She barely had the strength to eat until age 3, which is when her appetite changed, quite literally, overnight.

"Next morning she woke up starving, and we're like, 'Oh, yay, Cassidie wants to eat we're excited,' " said Floyd.

Over the next three months she gained 75 pounds, and as she grew heavier so did her insatiable appetite.

"She has eaten corn starch. She has eaten baking soda. She has eaten mayonnaise, mustard, pickles, ketchup. If she could reach it in the refrigerator she was getting it," said Floyd.

Before the PWS diagnosis, Floyd had to put chains and a padlock on the refrigerator. Cassidie's food obsession then turned to eating crayons and even soap.

"We had to change from bar soap to complete body wash because she would sit in the tub and eat it," said Floyd.

Now, a year into treatment for PWS, Cassidie is showing signs of improvement. Anti-anxiety medication and a strict 700-calorie-a-day diet brought her weight to 85 pounds. At bedtime, a locked gate restricts Cassidie's access to the kitchen, where the microwave is locked with a code and all food is kept out of reach.

Cassidie refers to her disease as the monster in her belly. She says it tells her to eat all the food.

"By telling her that's the monster talking, she's able to understand, 'Okay I don't need to eat because the monster's telling me to,' " said Floyd.

Part of what is so hard for Cassidie's mom are the stares her daughter gets in public, because she is often covered in bruises and self-inflicted sores from the anxiety. Floyd says most strangers assume her daughter is simply overeating.

Floyd got so fed up with it last year that she printed cards that read, "Stop staring. My name is Cassidie ... and I have PWS."

She hopes by sharing Cassidie's story other parents who may be questioning their child's appetite will seek help.

"Prader Willi is not who she is. It's what she has," said Floyd. "One bite can be the final bite, literally the final bite she ever takes."

Until a cure surfaces, Cassidie will need someone to save her from a hunger that could kill her.

"Every complication of obesity is in her future if we don't get things under control now," said Porch.

Some of the side effects of PWS include developmental delays in speech and learning, behavioral problems and severe anxiety, which in Cassidie's case causes her to pick at her skin, sometimes, until she is covered in blood.

Her mom documents the painful experience online, and the pictures are heartbreaking.

You can learn more about Cassidie's journey and contribute to research about Prader Willi Syndrome here: http://www.pwsausa.org/.

To see a Facebook page support group for those affected by PWS, click here: https://www.facebook.com/groups/459897860758927/.

Does your child have similar symptoms? Join the discussion on the Action News 5 Facebook page.

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