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ngnews.ca/News/Local/2011-12-05/article-2826047/Girl-with-Lyme-disease-needs-more-intense-treatment/1y

Girl with Lyme disease needs more intense treatment

Published on
December 5, 2011

SUTHERLANDS RIVER – Angela Rector started to cry when she looked at an assignment her daughter, Chelsey Livingstone-Rector, brought home from school. Chelsey, 11, had been asked to write a letter to Santa in French for a class. The only thing she wanted for Christmas, she wrote, was to get better.
“She didn’t ask for any toys. She just wants to get better. It’s enough to break your heart,” Rector said.
Chelsey has Lyme disease, which she contracted when she was just two years old after being bit by a tick in Ontario. She lives with intense pain daily and barely has energy to do things she once loved to do. Just waking up and getting out of bed in the morning is an ordeal. Her short-term memory is shot – she sometimes forgets where she’s going and has to have a helper with her at school and her grades are starting to drop because of her health. She pops more pills in the run of a day than an addict.
“Sometimes it seems like all I do is take pills,” said Chelsey with a sigh, adding that at least they’ve managed to juggle her medications so she doesn’t have to take them at school. “People stare at me, when I take the medicine at school.”
But she’s still not getting better, says her mom, and they’ve recently added two more medications to her daily routine. The new pills are so strong that Chelsey needs blood work every few weeks to test her liver function because the medication could cause damage to it.
“It’s a risk we’re willing to take at this point,” Rector says.
Chelsey has to fight to keep her weight up – she just hit 80 pounds, a major achievement, since it dropped to 58 pounds at one point – and has no appetite for her favourite foods.
It’s reached the point, Rector says, that Chelsey’s doctor has decided to send her to see an expert on Lyme disease in children based in Connecticut. It’s hoped they’ll be able to secure an appointment before the spring.
That’s going to be pricey for the family, who already shells out between $800 and $1,000 a month for Chelsey’s various medications.
Her insurance will only cover prescriptions and won’t pay for the vitamins and supplements she needs and they have told the family that they will not pay travel costs to the U.S. or for any hospitalization Chelsey may need while there.
It’s possible, Rector said, that Chelsey may have to do an IV therapy, which could be as intensive as a 24-hour-a-day, seven-day-a-week regime.
“I don’t know where we’ll get the money to go, but we have to,” Rector said. “I’ll find somebody, somewhere, to fix her. I have to. That’s my child.”
The only thing she has going for her right now it her age, her mother adds.
“The doctor told us to be glad she’s so young,” Rector said, her voice breaking. “She has her youth on her side. Her heart beats between 140 and 160 beats per minute at rest, and has ever since she was bitten. If she’s older, there would’ve been more wear and tear on her heart.”
Chelsey, who has been living with the disease for nine years now, has reached the point where she’s considered to have chronic Lyme disease – and that means that there may be little hope for a cure in her case.
“They’re saying that once you reach the chronic level, you can get treated, go in remission, and every once in a while it could flare up. It could be 30 years down the road or three years,” Rector said.
But still, the family hasn’t given up hope for a Christmas miracle.
“We’re hoping against hope she doesn’t go into remission and that she’s cured,” Rector said.

 

Chelsey Livingstone and her mom, Angela Rector, organize the many pills Chelsey needs each day as she battles Lyme disease. It’s a costly process that could take from one to three years. Jennifer Vardy Little – The News
Published on May 26, 2011

 

Mom blames poor tests that failed to diagnose Lyme disease

Topics :
Department of Health , Sutherlands River , Ontario , Port Hawkesbury

SUTHERLANDS RIVER – For 8 1/2 years, Angela Rector brought her daughter to doctor after doctor, looking for answers.

Chelsey Livingstone, 11, lives in pain. She describes joints that ache so badly it keeps her up at night and a sharp pain in her stomach.

“It feels like someone’s stabbing me in my belly,” she says softly.

From the time she was a small child, she’d call out to her mother as she lay in bed at night, and in the time it took Rector to get across the hallway, she’d find Chelsey lying there, staring unresponsively at the ceiling with blue lips. Doctors thought she had epilepsy at first, but ruled that out, instead calling the nightly events “episodes.”

Doctors didn’t believe Chelsey when she said how bad the pain was, either.

“You know how they always ask how bad the pain is on a scale of one to 10? She’d say a 15, and they said that was impossible,” said Rector.

She was tested for rheumatoid arthritis, bladder infections, Crohn’s and irritable bowel, but all the possibilities were rejected. Eventually, says Rector, physicians at the IWK suggested it was all in Chelsey’s head and gave her a book on ways to cut back her stress levels.

Rector wasn’t willing to give up, however. All along, she begged the doctors to consider Lyme disease. When Chelsey was just 2 1/2, the family was living in Borden, Ont., and Rector believed her daughter had been bitten by a tick.

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http://www.ngnews.ca/News/Local/2011-05-26/article-2538390/Child’s-illness-mystifies-doctors/1