Child’s illness mystifies doctors

Mom blames poor tests that failed to diagnose Lyme disease

Jennifer Vardy Little webcomments@ngnews.ca
Published on May 26, 2011
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

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.

“We never saw the tick, but she had the classic bull’s-eye rash,” she recalls. “She’s been sick since pretty much the day it happened. She had the rash, a high fever, but the Department of Health in Ontario told us there weren’t cases of Lyme disease up there. So I assumed it was the flu – every night she’d vomit.”

She never got better. Doctors tested for Lyme disease, says Rector, but blood tests in Canada aren’t always accurate.

“Every time, I’d ask them if they were sure it wasn’t Lyme disease, they’d do the test, it would come back negative,” said Rector.

Finally, she took her daughter to local naturopath Lisa McNiven, who did the tests that officially diagnosed Chelsey last month, just two days before she turned 11.

“We’re still in shock,” says Rector. “When they told us – I couldn’t even speak, I was so mad. They could have diagnosed her a long time ago if there were better tests.”

For Chelsey, though, it was a relief to know what was happening.

“At least I know what’s wrong – I was scared,” she said.

Chelsey was immediately referred to a doctor in Port Hawkesbury who is an expert with the disease. He put her on a regime of medications – 26 different types a day, including a variety of herbs, vitamins and supplements. In just a month, it’s become second nature for her to carry around pillboxes to remind her which medications to take.

At night, she has to rub castor oil on her joints and sleep surrounded by heating pads to help ease the pain.

“It’s really, really unfortunate this has gone on so long,” said Rector. “The doctor told us he doesn’t even know if it can be fixed – he told us it could get better, it could stay the same or maybe it would get worse. He’s hoping that because she’s young, her body will be able to fight it.”

The disease has already affected her liver, pancreas, circulatory system, small intestine and short-term memory. Chelsey is usually in too much pain to do the things other kids her age do – playing outside is enough to leave her in tears.

“She’s got quite a battle ahead of her – the doctor asked her if she was willing to fight, and I know I’ll keep fighting for her,” Rector said.

Complicating things further is the fact that Chelsey is allergic to penicillin, which means the most common antibiotics can’t be used. The initial antibiotic they tried isn’t working – it stirs up the bacteria so much that it causes excruciating pain – so they’re waiting for a medicine to be shipped from the United States.

“We’re hoping this one will work better,” said Rector, adding that the $90 a bottle medicine will only last about a month. “The doctor’s told us that it’s going to get worse before it gets better. I just have to keep reminding myself that this is Chelsey’s normal now.”

Chelsey’s medications cost more than $800 a month and she has to travel to Port Hawkesbury every month to see her doctor. None of it is covered by her insurance. Normally, the treatments would last around six months, but because she’s been left undiagnosed for so long, it will take at least a year – and possibly up to three years – before she’s finished with the medical regime.

Rector’s husband has a disability and can’t work, leaving Rector, who just finished school, the only breadwinner in the house. They also have a younger son with special needs.

“It’s been tough – it seems like she’s getting a new pill every time we turn around,” Rector said. “We’ve literally had to sell stuff and borrow money from every person in our family, choose between paying the bills or getting her medicine.”

At first, said Rector, the family refused help from anyone.

“We didn’t want to bother anyone,” she said. “But everyone kept telling me this is what your community is for.”

Collection bins have been placed at various locations in the Thorburn, Sutherlands River and Merigomish area and people have been very generous.

“One bucket at the LBR had $195 in it – from people wanting to help me,” said Chelsey, her eyes sparkling. “And that was only after a few days.”

A benefit dance is also being held tonight at the Glasgow Pub, with a silent auction and 50/50 draw.

“We’re hoping to get enough to get us through the next few months,” said Rector.

She’s also hoping that Chelsey’s story will encourage other parents to take added precautions to protect their children.

Lyme disease is spread through the bite of infected ticks. If it’s caught quickly, it can be cured with antibiotics.

Although Chelsey is believed to have contracted the disease in Ontario, last year it was announced that blacklegged ticks, known for carrying Lyme disease in other parts of the province, had been found in the county – specifically in the areas around Melmerby Beach, Egerton, Kings Head and Pine Tree, while Powell Point and Thorburn are being monitored closely.

“If your child has a tick on them, take it to the hospital with them so it can be tested and get them on antibiotics right away,” she said. “If there’s Lyme disease in the tick, it will clear up. Chelsey never got put on antibiotics. I’m hoping others will be more informed and aware about Lyme disease.”