Mother of Teen Finds Cure for Mystery Disease Online

After suffering for 9 months, Hayley Lairmore treated for POTS at Mayo Clinic.

July 12, 2010, 9:35 AM

July 13, 2010— -- Hayley Lairmore's mystery illness began on her 14th birthday last year when she threw up after a fun-filled day at Disney World. For nine months as it went undiagnosed, she dropped out of school, disengaged from life and dwindled to 70 pounds.

"At first we thought maybe it was too much junk food or possibly the flu, but the throwing up continued," said her mother, Christine Lairmore of Arrowhead Lake, California. "If she tried to eat, it came right back up.

Hear more of Christine Lairmore's story.

At its worst, the high-achieving girl who played soccer and loved class was tormented by abdominal pain and vomiting, up to a dozen times a day, crying to her mother for help.

"Every night at 2, 3, 4 in the morning, we'd be up," said Lairmore, 43. "The nights were horrible. We would watch movie after movie and she was in excruciating pain. She would cry, 'Mommy, you have to help me, please help me,' but no one could help."

Lairmore and her husband Robert, an engineer who designs Louisville Slugger bats, were powerless to help their daughter. Every doctor and specialist -- even at the top medical centers around Los Angeles -- told them it was all in Hayley's head. One recommended a psychiatrist.

"I got this all the time: 'She's doing it on purpose.' 'She needs therapy,'" said Lairmore. "And I got told more times than I want to hear ever again, 'She's doing it for attention.'"

One gastroenterologist wrongly diagnosed constipation and prescribed laxatives so strong that Hayley had to wear a diaper to make the 30-minute drive from their mountain home to the doctor.

"We had to buy her todder pull-ups -- and she was so emaciated, she could fit into them," said Lairmore. "Imagine the horror, sitting next to her 11-year-old brother in the car."

After seven months, ruling out food allergies, celiac disease and eating disorders, the doctors threw up their hands.

But Lairmore didn't. She was desperate for answers and spent hours on the Internet, even though she laughs that she is not computer-savvy.

"I am not woman easily dismissed by a doctor," she said.

Late one night, in what she calls a "fluke," Lairmore stumbled across a chat room where a teenage girl was talking about a strange-sounding condition called POTS..

Curious, she followed more links until they led to a YouTube video of a girl talking about symptoms that sounded familiar.

"As soon as I clicked on it, you could almost hear the music and the bright lights," said Lairmore. "It was one of those surreal moments and I felt electricity through my body. You are talking about my daughter."

That, in turn, led her to another YouTube video of Dr. Phil Fischer, the Mayo Clinic's own "House" -- a kinder, gentler version of the TV character -- who diagnoses complex pediatric illnesses.

Mayo Clinic Offers Hayley Lairmore Hope

Lairmore said she called the Mayo Clinic and the receptionist told her, "You sound exactly like the moms we hear from every day."

"I literally started crying," she said.

POTS, or postural orthostatic tachycardia syndrome, is a disorder of the autonomic nervous system -- the master regulator of heart rate, blood pressure, respiration and other vital functions.

Its classic symptoms are dizziness and a rapidly increased heart rate when getting to one's feet, because the body cannot adapt to gravity.

POTS may affect as many as 1 percent of all teens, about two-thirds of them girls, and though it is usually curable with medication, it can ruin their early years, said Fischer.

"They are missing school and dropping out, bouncing from doctor to doctor looking for a solution," said Fischer, a pediatrician who treats about 100 patients with POTS a year, half of all cases at the Mayo Clinic.

But the outlook for their recovery is "excellent" in about 80 percent of the cases, he said. "When you get through the teenage years, it resolves. After a year or two or three, they live happily ever after."

"Nothing is broken, but the system is just not working right," said Fisher. "They can get better. We don't want them to think they are stuck with this for life."

The problem is the devastating psychological toll the disorder takes on growing girls like Hayley.

"The key is not to abandon life along the way," he said. "They have no energy and have a tendency to drop out of school and mess up their lives. When the POTS is gone, we want them to still have friends and have made academic progress."

While early diagnosis may not necessarily cure these girls any faster, intervention with drugs like beta blockers and alpha agonists that act on the blood vessels and sometimes serotonins, are important.

Doctors also recommend establishing healthy routines such as aerobic exercise, regular eating and sleeping, and, surprisingly, the intake of extra fluid and salt.

"These kids can't burn the candle at both ends and get away with it," Fischer said.

POTS was first recognized in 1993 and some research has shown an association with chronic fatigue syndrome. It can also strike in middle age, but the prognosis is not as good.

Teens with the disorder seem to share some unexplainable characteristics, according to Fischer.

"Typically, it's high-achieving teens, not the obnoxious type A, but gentle ones that are extracurricular activities and busy having a great time, every parent's dream," he said. "There is something about their body chemistry and thermostat that predisposes them."

POTS strikes sometime during puberty after an illness or injury that somehow "tips something out of balance in the nervous system controls, leaving them feeling tired and crumby," he said.

Postural Orthostatic Tachycardia Syndrome Often Misdiagnosed

POTS is often misdiagnosed because it can include a wide array of seemingly unrelated symptoms, including fatigue, exercise intolerance and excessive thirst, according to according to the Dysautonomia Information Network, which addresses disorders of the autonomic nervous system.

In extreme cases, it can cause disabling vomiting as it did for Hayley.

The hallmark of POTS is tachycardia, rapid jump in the heart rate when standing, 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.

When Hayley was tested at Mayo Clinic, her heart soared to 180 beats per minute, according to her mother, so high doctors stopped the tilt test.

Hayley's case may not be that unusual -- Fischer has 15,000 hits on his YouTube video and the POTS podcast has 33,000 views.

"Now there is much more awareness," said he said. "But not all the education comes because the doctor is smart. A lot comes from people on the Internet learning about this, going to websites and learning information and networking with others."

Nine months after Hayley got sick, she began treatment at the Mayo Clinic. She takes beta blockers to tighten her blood vessels and tries to stick to a healthy exercise and eating regimen.

"This was so simple," said her mother.

Today, Hayley is 15 and headed for the 10th grade in the fall, weighing in at 100 pounds -- a 30-pound gain from when she was at her worst.

Hayley sometimes balks at her morning exercise regimen, 30 minutes of dancing on the Wii. One of the challenges is of POTS is getting enough exercise.

"It used to be fun and now the body feels too tired and can't do anything," said Fischer. "But it's probably the most important thing for recovery."

Hayley sometimes gets headaches, but is otherwise fine, roller skating around her neighborhood this summer with friends.

"I feel good," she said. And of her doctor, "He was cool."

Like her mother, Hayley said she now knows not to take no for an answer. "They said I didn't have anything, but I wasn't pretending to be sick."

And Hayley is proud of her mother for being strong and finally getting help.

"Don't give up, don't ever give up," said Lairmore. "And don't listen to the doctor when you are right about your child. I am sorry to give doctors a bad rap, but so many told me there was nothing wrong with her."

"My daughter knew I was on her side and I believed her," she said. "Doctors are not God."

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