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Coping with Crohn's: Student talks about living with the disease

Wednesday - 1/15/2014, 8:09am  ET

Leah Packer, 13, was diagnosed with Crohn's disease this past October. This photo was taken at a cross-country race before the middle school student was diagnosed with the disease. (Courtesy Larry Packer)

WASHINGTON - Leah Packer was a medical mystery.

For several months, her parents ferried their 13-year-old daughter from one emergency room to another, looking on with fear as she doubled over in stomach pain.

Last summer with no warning, the middle school student from Olney, Md., started having spells: she would vomit just about everything she ate and drank.

By September, Leah, a cross-country runner and soccer player, found she could no longer keep up with the other kids her age.

"I started feeling very tired, had achy joints My stomach always seemed to hurt," Leah says.

A diagnosis finally came in late October 2013. Leah learned she is one of the roughly 100,000 kids in the United States with Crohn's disease, a chronic, inflammatory disease of the gastrointestinal, or digestive, tract.

"I was scared, obviously, I was confused," Leah says.

She explains she felt a mix of relief and terror -- relief that there was finally an answer to her medical mystery, but fear that she would have to battle the disease for the rest of her life.

Crohn's can attack anywhere along the digestive tract, according to Dr. Laurie Conklin, director of the Inflammatory Bowel Program at Children's National Health System. She says it's fairly common among kids. In fact, about 25 percent of those diagnosed with Crohn's develop symptoms in childhood or adolescence.

Leah Packer, pictured with her brother, Ari. Leah is one of about 100,000 American kids living with Crohn's disease. (Courtesy Larry Packer)

Many of the early warning signs in kids are similar to those seen in adults, most notably abdominal pain or diarrhea, blood in the stool and fatigue. In children, there are also complications brought on by, what can be, a severe reduction in nutrients entering the bloodstream at a crucial period in their development.

"One critical difference is growth problems," says Conklin, who adds that kids with Crohn's can be below normal weight or height for their age.

Conklin says there are also emotional concerns for children diagnosed with Crohn's, especially those who experience problems at the lower end of their digestive tracts, who need proximity to a bathroom.

Conklin says these pediatric Crohn's patients have a tendency to become very quiet about the disease and may limit their interaction with others. She says there can be "difficulties with sleepovers, or spending nights out with their friends or playing sports."

Leah, whose Crohn's disease has not affected her lower digestive tract, says she was still a bit nervous at first about how others would react because "[gastrointestinal] associates with words that make kids laugh."

However, Leah was one of the lucky ones. She received nothing but support from friends, classmates and her own family.

Her dad, Larry Packer, says the move from symptoms, to diagnosis, to treatment for his daughter was "scary and very frustrating."

He says they wasted a lot of time on anger and disbelief, when they should have been educating themselves from the start about Crohn's.

"My advice to other parents in a similar situation is try to jump right to that research phase and figure out what you have to do to help your child," Packer says.

Pediatric gastroenterologist Conklin is a firm believer in that approach. She says it's important for parents to learn as much as they can about Crohn's as soon as they can, noting that the Crohn's and Colitis Foundation of America (CCFA) is a particularly good source for families. The Pediatric IBD Foundation also has a helpful website.

Support is not limited to foundations and websites. Conklin says in some communities, parents of kids with Crohn's are forming informal groups to provide mutual support.

For anyone with Crohn's, child or adult, comprehensive medical care is critical. The CCFA estimates Crohn's disease affects as many as 700,000 Americans.

While no one knows for sure what causes the disease, some researchers believe genetics and environment play a role. There is no cure for Crohn's, but there are treatments, including medications and dietary change, that can make a big difference in quality of life.

"We can improve the symptoms significantly," says Conklin. "Our goal is for our children with Crohn's disease to have a normal quality of life."

A normal life is exactly what Leah has in mind.

"I am just going to keep coping and dealing with it," Leah says.

After several months of trial and error with medicines, some of which have had nasty side effects, Leah is now in remission. And while she knows her symptoms could come back, she is staying upbeat and talking about a disease that few kids with Crohn's want to discuss.

The Olney middle schooler says her motto is simple:

"I have Crohn's, but it doesn't have me."

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