After Brain Tumor Removed, Girl Is Always Hungry

Dec. 31, 2013 — -- A Texas girl is fighting to stay healthy after complications from a brain tumor left her constantly hungry.

Alexis Shapiro, 12, suffers from a rare condition called hypothalamic obesity where she constantly feels hungry no matter how much she eats.

The removal of a benign brain tumor in 2011 resulted in damage to Alexis' pituitary gland and an area in the hypothalamus part of her brain that affects how her body perceives signals from her digestive system.

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As a result Alexis is always hungry and has gained 140 pounds in two years due to her ravenous appetite and her decreasing energy level. Before the surgery she weighed 51 pounds.

Alexis' mother Jennifer Shapiro said after the surgery her daughter was gaining two pounds every week even on a strict diet of only 900 calories a day.

"It has been heartbreaking for her and for us," Alexis' mother Jennifer Shapiro said on an online fundraising site. "She cannot do the things she used to love."

Shapiro said her daughter can no longer play with her brother or sister and had to be homeschooled this year due to her lower energy level and bullying at her school.

"She doesn't have any adrenaline either. She runs on low often," Shapiro told ABCNews.com. "She can't keep up for a whole day without taking a nap."

The family is raising funds online to help get Alexis' medical treatment.

In search of finding relief for her daughter, Shapiro reached out to Dr. Thomas Inge, a surgeon and professor of surgery and pediatrics at Cincinnati Children's Hospital Medical Center in Ohio.

Inge has studied how gastric bypass can help people with Alexis' condition and runs an electronic database of patient information, partly funded by the National Institute for Health, for people diagnosed with hypothalamic obesity.

He said that Alexis' condition can be extremely frustrating because even when parents padlock their refrigerator or lock their cabinets their children will gain an astonishing amount of weight even if they have a restricted diet.

Inge explains when damage is done to the area of a part of the brain called the basal medial hypothalamus it can wreak havoc on the patent's metabolic system.

Although Inge says the area is no bigger than a "grain of rice," if damaged it can mean that the brain starts to get extra hunger signals from the gut that it incorrectly interprets as a need to eat more food.

Inge points out that when most people eat an excessive amount one day, they will naturally want to eat less food the next day or be more active as their body tries to regain balance.

"In the case of these kids they can't do that. They gain weight so quickly because their energy output systems are not in sync at all," said Inge.

Inge said that gastric bypass is an option of last resort for children with hypothalamic obesity as it will require a life-long adherence to food restrictions.

"I'll say from the start, is we don't have enough research on the topic and we're trying to bring more understanding on how gastric bypass can work," said Inge. "What the gastric bypass seems to do is to trick the brain that those hunger signals are not really [there.]"

Inge explains that the surgery appears to result in a decrease of appetite hormones produced by the gut that lead the brain to incorrectly think the patient is constantly hungry. Inge said that along with the physical health toll that results from hypothalamic obesity, there is a mental and social cost for patients.

"I do not remember at all any kind of fear factor with her," said Inge of meeting Alexis to discuss the surgery. "I will say by the time these teenagers get to me. They've gone through so much in their own lives… I think a lot of soul searching happens before they get to my office."

Alexis' family said they have decided they want to go forward with the surgery and currently are raising money to help with medical costs. As of Monday they had reached more than $71,000. Inge estimates it will take roughly $50,000 for the surgery and a year of post-operative recovery and check-ups.

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According to a Shapiro the family's insurance company, TRICARE and Humana Military, initially turned down their claim, but the family is appealing. Officials at the insurance company did not immediately respond to a request for comment.

Shapiro said if the insurance company does not approve the surgery, they will use the money from the online fundraiser to cover the cost.

Shapiro said Alexis understood the fact that the surgery might not work for her and that it would affect her for the rest of her life.

"She is also very excited and she wants to do it. [We explained] it's going to be hard and it's going to be hard after the surgery but she might get her life back," said Shapiro. "She said that she's no worse off than she is now. She can't do anything now so why not try something different."