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UPDATE!!!!!!!!!Eating herself to death: Girl denied weight-loss surgery for rare illness

Posted by on Dec. 29, 2013 at 12:53 AM
  • 130 Replies
2 moms liked this

Eating herself to death: Girl denied weight-loss surgery for rare illness




Obese, but starving: Girl, 12, denied weight-loss surgery for rare illness

20 hours ago

Cibolo, Tx., December 11. 2013: Alexis opens gifts surrounded by her family at her 12th birthday celebration. Alexis Shapiro, 12, had a brain tumor re...
Ilana Panich-Linsman / for NBC News
Alexis Shapiro, 12, of Cibolo, Texas, developed a rare disorder after surgery for a brain tumor two years ago, one that causes her to gain weight constantly, even on a restricted diet.

Surgery to remove a brain tumor two years ago has left a 12-year-old Texas girl with a heartbreaking condition that makes her gain massive amounts of weight — even though her body thinks it’s starving.

Doctors say a gastric bypass operation is the only thing that can help Alexis Shapiro, who is 4-foot-7 and weighs 198 pounds. But the U.S. military, which provides her family’s health insurance, says it won’t pay for the $50,000 weight-loss procedure because she’s too young.

“Our reviewers have denied your request for Roux-En-Y Gastric Bypass,” reads the rejection notice sent this month.

Alexis’ parents — and her doctor — are protesting the decision from insurer TRICARE, which they say sentences the child to a fate of dangerous health problems and social isolation caused by hypothalamic obesity, which is packing on at least 2 pounds every week.

Alexis Shapiro, the little girl with the brain tumor who gained massive amounts of weight after her surgery. 
It was taken in 2011, a month before sur...
Courtesy of Jenny Shapiro
Alexis Shapiro, center, is shown here in 2011, with her sister, Kayley, and brother, Ethan, a month before surgery to remove a benign brain tumor.

“It just keeps going up and up,” said her mother, Jenny Shapiro, 34, of Cibolo, Texas. “She desperately needs this. I feel like she will die if she does not get this surgery.”

In just the past three months, Alexis was hospitalized for a kidney infection and developed Type 2 diabetes that requires nightly insulin injections, both related to her growing girth.


More photos of Alexis and her family

Dr. Thomas H. Inge, a Cincinnati expert in pediatric obesity who is treating Alexis, acknowledged that there have been few cases like hers. But he said surgery may be the only way to stop weight gain that could top out at 400 pounds — and to cut the brain cravings that make Alexis want to eat an entire jar of peanut butter at one sitting.

“I think it is disappointing that they cannot see the facts of this case,” said Inge, of the Cincinnati Children’s Hospital Medical Center. “There is no evidence that doing nothing would be in this child’s best interests.”

But a spokesman for TRICARE and Humana Military, which provides insurance coverage for Alexis’ father, Air Force veteran Ian Shapiro, said their rules are clear. Gastric bypass and other weight-loss surgeries may be covered, but only if the patient is 18 or has achieved full bone growth.

“In general, our Managed Care Support Contractors are required to approve or deny coverage based on TRICARE policy,” spokesman Austin Camacho said in an email to NBC News. “We have an appeals process in place specifically designed to give our medical professionals the opportunity to examine the details of any special cases when coverage is denied.”

However, an appeal could take months or longer, said Jenny Shapiro, and there’s no guarantee that the surgery would be approved even then. She said that by-the-book denials are making the rare disease that struck her normal 9-year-old even worse than it's already been. 

Cibolo, Tx., December 11. 2013: A photo of Alexis, now 12, prior to her 2011 surgery. Alexis Shapiro, 12, had a brain tumor removed three years ago, w...
Ilana Panich-Linsman / for NBC News
Jenny Shapiro says Alexis remembers when she was a normal-sized girl, before the brain tumor surgery triggered hypothalamic obesity, a rare condition.

'We've had to padlock the cupboard'
Two years ago, Alexis was a normal, happy third-grader who liked to ride scooters and bikes with her brother Ethan, then 5, and sister, Kayley, then 7.

Then Alexis developed a craniopharyngioma, a rare kind of benign brain tumor that grows near the pituitary gland and affects at most 1 child per every million each year.

The good news was, the tumor wasn’t cancer and the surgery to remove it, though scary, went well. The bad news was, Alexis developed hypothalamic obesity, a rare condition caused by damage to the hypothalamus, the fingernail-sized organ that helps govern energy balance, appetite — and weight.

More than half of children who have such tumors develop problems with excessive eating — called hyperphagia — and significant obesity.

“The treatment is what ends up interfering with very, very important pathways that are immediately adjacent to the tumor,” Inge said.

In Alexis’ case, the result was an immediate, unceasing weight gain even with a diet restricted to 900 to 1,400 calories a day — and with extra exercise, said Jenny Shapiro. At the same time, Alexis developed a ravenous appetite.

“She’s always hungry,” Shapiro said. “In the past, we’ve had to padlock the cupboard.”

Alexis’ illness has upended family life, even though Jenny Shapiro said she works hard to keep things normal. Their daily routine is governed by a strict diet and exercise plan that is often frustrating for Alexis and the rest of the family.

It’s difficult finding clothes for Alexis, who now wears a woman’s size 1X or 2X and who goes up nearly a size every month, Jenny Shapiro said. She had to be home-schooled starting this year, both because her condition leaves her in constant pain and because of comments from other kids. It's hard to go out in public because of the looks and whispers targeted at Alexis' size, her mother said. 

“She doesn’t have any friends or anything like that,” Jenny Shapiro said. “It’s so sad, because she remembers what it was like before.”

Worse, though, than the daily challenges is the worry about where Alexis’ illness will lead.

“You meet with the psychologist and you meet with the nutritionist,” she said. “They asked Alexis how she felt and she said she wants to die.”

The risk of devastating consequences is what compels doctors to consider bariatric surgery for patients like Alexis. The operation has lifelong consequences and no one wants to perform it on a child unless the benefits clearly outweigh the risks, Inge and other experts say. 

Though the literature is scant — Inge and his colleagues have reviewed just 70 cases — craniopharyngioma patients who've had the surgery have lost significant weight, between 20 percent and 30 percent of their body mass. In addition, gastric bypass surgery, which makes the stomach smaller and bypasses some of the small intestine, appears to have an effect on the part of the brain related to appetite and satiety, the sense of fullness.

Kelsie Blackwell
Courtesy Tawana Blackwell
Kelsie Blackwell of Indianapolis, Ind., is shown at age 16 and now, at age 21. Like Alexis Shapiro, she also had hypothalamic obesity that spurred massive weight gain. She underwent bariatric surgery at age 16, which helped her lose 100 pounds and cut her severe food cravings.

Just ask Tawana Blackwell, 53, of Indianapolis, Ind., whose daughter, Kelsie, was diagnosed with hypothalamic obesity at age 8 and didn’t have surgery until five years ago, at age 16. Just 5 feet tall, the girl weighed 230 pounds and was gaining up to 20 pounds a month.

After the surgery, Kelsie, now 21, lost 100 pounds and has been able to keep it off with a careful diet and regular exercise.

“I feel very blessed we were able to get this surgery done,” said Blackwell, whose health insurance through her job covered the costs. “These kids are not normal kids where you can say, go out and exercise, go on a diet and lose weight. They have a medically induced obesity state.”

Inge has been pushing for an exception to the TRICARE bariatric surgery rule based on the severity of Alexis’ symptoms. Doctors at the San Antonio Military Medical Center have referred her case for higher review, but it’s not clear where it stands.

Meanwhile, Jenny Shapiro said she’s growing desperate to help her little girl. The family has started a medical fundraising account on the site GoFundMe.com to help raise the money to pay for the surgery. As of late Saturday, NBC readers and others had contributed more than $45,000. 

“These kids will literally eat themselves to death,” the mother said. “That’s what I’m scared of.”

JoNel Aleccia is a senior health writer with NBC News. Reach her on Twitter at @JoNel_Aleccia or send her an email. 

Cibolo, Tx., December 11. 2013: Photos of Alexis and her siblings, Kayley and Ethan, prior to Alexis' surgery in 2011. Alexis Shapiro, 12, had a brain...
Ilana Panich-Linsman / for NBC News
Photos of Alexis and her siblings, Kayley and Ethan, prior to Alexis' surgery in 2011.
Cibolo, Tx., December 11. 2013: Alexis Shapiro, 12, had a brain tumor removed three years ago, when she was a normal-sized 9-year-old. Ever since the ...
Ilana Panich-Linsman / for NBC News





'Rooting for her': Strangers donate $50K for Texas girl's life-saving obesity surgery

1 hour ago

Cibolo, Tx., December 11. 2013: Alexis opens gifts on her 12th birthday under the watchful eyes of her sister Kayley, 9, brother Ethan, 7, and dog Bab...
Ilana Panich-Linsman / for NBC News
Alexis Shapiro of Cibolo, Texas, opens a gift on her 12th birthday this month. A flood of donations from NBC News readers and others may allow her to receive life-saving surgery to reverse a condition that has caused her to gain massive amounts of weight after brain surgery.

A 12-year-old Texas girl who became morbidly obese after a rare illness triggered by brain surgery could get a potentially life-saving operation by February, thanks to a flood of donations from strangers.

More than 1,200 people have contributed more than $53,000 to a fund for Alexis Shapiro, of Cibolo, Texas, who weighs nearly 200 pounds and is gaining about 2 pounds a week because of a runaway condition called hypothalamic obesity.

That’s in addition to at least four anonymous philanthropists who have stepped forward to help. The response started within hours after NBC News first reported the story on Saturday.

“My goodness! It’s crazy,” said Jenny Shapiro, Alexis’ mother, who added that her family has been surprised and touched by the generosity. “Alexis really likes it. I think she feels like people aren’t looking at her anymore and people are rooting for her.”

Doctors say gastric bypass weight-loss surgery is the only thing that can help Alexis, but the U.S. military, which provides her family’s health insurance, says it won’t pay for the operation because Alexis is too young.

TRICARE and Humana Military, which provide family insurance for Alexis’ father, Air Force veteran Ian Shapiro, denied the request citing rules that say gastric bypass surgery may be covered, but only if the patient is 18 or has achieved full bone growth. Officials said the family could appeal the decision.

But Alexis’ parents — and doctors — say that an appeal could take too long and that there would be no guarantee the child would be approved for the $50,000 operation. Ian Shapiro, 34, is claims representative for USAA, a banking and insurance provider. Jenny Shapiro, 34, works part-time as a dog groomer at PetSmart.

“If nothing else, we have what’s required for the hospital,” Jenny Shapiro said. “If I need to make payments or whatever, then I will.”

Dr. Thomas H. Inge, an expert in pediatric obesity at the Cincinnati Children’s Hospital Medical Center, said Alexis could receive the surgery at his hospital within six weeks now that the funding appears to be in place.

“The team is certainly in favor from a medical standpoint of moving forward as quickly as we can,” he said.

Every extra pound gained is a risk to Alexis, who has developed Type 2 diabetes and other health problems in the past two years. She was just 9 when she developed a benign brain tumor called a craniopharyngioma, which affects at most 1 child per every million per year.

Surgery to remove the tumor went well, but it damaged her hypothalamus and pituitary gland, two organs that help regulate energy balance, appetite and weight.

Like more than half of children who get those tumors, Alexis developed hyperphagia and hypothalamic obesity, disorders that make her gain massive amounts of weight — even as her body thinks it’s starving.

Her parents have had to monitor her food intake and exercise extremely closely, sometimes limiting the child to 900 calories a day. In the past, they’ve had to padlock the kitchen cupboards because Alexis’ conditions cause cravings that make her want to eat an entire jar of peanut butter at one sitting, for instance.

Gastric bypass surgery could help Alexis lose between 20 percent and 30 percent of her body mass, and also curb the misfire between her brain and gut that makes her feel like she’s starving, Inge said.

What’s not clear now is, even if the initial surgery is paid for, whether TRICARE would cover any follow-up care that Alexis might need. Officials with the military insurer did not respond to NBC News requests for comment about the new developments in Alexis’ case.

The Shapiros and Inge said they were planning to talk on Monday to discuss the timing for surgery — and its aftermath. Bariatric surgery is a serious procedure with lifelong consequences. New research by Inge and others suggests that teens do about as well as adults after weight-loss surgery, with the risk of major complications in about 5 percent to 7 percent of cases.

The money raised by NBC News readers and others will help pay for the surgery, Jenny Shapiro said. Any extra will go toward the costs of travel, lodging and other expenses as the family of five travels to Cincinnati for the operation. The family had started an account last summer at GoFundMe, one of several websites that help people raise money for medical expenses. Site organizers charge 5 percent of the donated amount, plus another 2.9 percent and 30 cents per transaction goes to WePay, a payment site.

But it wasn't until Alexis' situation received national attention that the fund jumped, within hours, from a little more than $1,000 to more than $53,000. 

"I am really amazed at the power of information to bring out the best in people in cases like this," said Inge.

Alexis and her family are cheered by the outpouring of goodwill and generosity, especially during the holidays, Jenny Shapiro added.

“It’s going to be a lot of hard work,” she said. “We know that it’s not going to be 'Have the surgery and, yay, everything’s fixed.' But it’s a start.”


by on Dec. 29, 2013 at 12:53 AM
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Replies (1-10):
maciymommieof3
by Silver Member on Dec. 29, 2013 at 12:54 AM

this just breaks my heart.... poor girl.

maciymommieof3
by Silver Member on Dec. 29, 2013 at 12:54 AM

as if a tumor was not bad enough

mlpcrusader
by Member on Dec. 29, 2013 at 1:02 AM
So sad!! :( poor girl. I hope she gets the help she needs.
yourspecialkid
by Platinum Member on Dec. 29, 2013 at 1:06 AM
14 moms liked this

 1.  Never assume that just because someone is overweight that they just need to step away from the trough.

2.  I hate Tricare..this is a perfect example of why one size fits all insurance does not work.

Thanks for posting this.  I am going to share it with our local base's family support team.  Maybe we can get some funds to them.

 

maciymommieof3
by Silver Member on Dec. 29, 2013 at 1:08 AM
1 mom liked this

awwww..... good luck momma!   hope it helps!

Quoting yourspecialkid:

 1.  Never assume that just because someone is overweight that they just need to step away from the trough.

2.  I hate Tricare..this is a perfect example of why one size fits all insurance does not work.

Thanks for posting this.  I am going to share it with our local base's family support team.  Maybe we can get some funds to them.

 


PinkButterfly66
by Gold Member on Dec. 29, 2013 at 1:26 AM
2 moms liked this

They need to get their Senator and lawyers involved in this.  Tricare is famous for denying treatment for stuff.  I worked for them years ago when they were still Blue Cross/Blue Shield.  They had to be sued to pay for a woman's breast reconstruction after having a mastectomy for breast cancer.  

Healthystart30
by Silver Member on Dec. 29, 2013 at 1:27 AM
Poor girl! I hope she gets what she needs to help her.

Damn tricare
Sekirei
by Nari Trickster on Dec. 29, 2013 at 1:38 AM


Quoting yourspecialkid:

 1.  Never assume that just because someone is overweight that they just need to step away from the trough.

2.  I hate Tricare..this is a perfect example of why one size fits all insurance does not work.

Thanks for posting this.  I am going to share it with our local base's family support team.  Maybe we can get some funds to them.

 

agreed... 

Tricare is having fun dicking people around. I am dealing with it now, again, with my husband this time.

DestinyHLewis
by Destiny on Dec. 29, 2013 at 1:41 AM
4 moms liked this

I'm not shocked. Just disgusted. My sister was told her brain tumor was an "unfit financial risk" by TriCare and the only thing she can do right now is treat the symptoms. We as a family have been fighting this for 3 years and her her husband is active duty AF. Does it matter she has had a  seizure while driving my twin niece and nephew? No. Does it matter she had to give up her teaching position because she gets sick often? No. Or that she is sick more often than not? No. That she endures pain everyday?  The only thing that matters is that only two hospitals can preform the surgery she needs and it's expensive. She isn't worth it by their standards. Her quality of life doesn't matter. 

People are all for a government health care. Yep. Till this happens. Here is a prime example of the things that will befall everyone under the ACA. TriCare is a prime example of government run health care. If they ever get the ACA running, we will see more of these types of issues. Across the board. It's infuriating and sad. 

TriCare is AWEOSME for the most part until you have someone who has needs that are out of the norm. Out of their nifty little notebook. Then you are screwed. 

KG34
by Member on Dec. 29, 2013 at 1:57 AM

They should put a petition up on change.org.

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