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Wednesday, August 10, 2005

Boy's parents want to know why they had to fight to get Lyme test done

The Chronicle Herald
Jesse Watton turned three last Sunday.

But he struggled to have fun at his birthday party, too listless to play with his friends.

"Mommy, I feel awful," he told his mother Tanja Zaedow while the other children were getting ready to take a dip in the pool of the family home in Aylesford, Kings County.

"It just breaks your heart. Every day I'm seeing different things wrong with him."

Jesse has pains in his back, arms, head and stomach and a constant low-grade fever. He's up about 10 times a night with various aches, says Ms. Zaedow.

And at his young age, he's had more tests than most adults, including risky and invasive procedures that would terrify most older people. They include a liver biopsy, spinal tap, a bone marrow test and major blood work.

But none of the tests could find what was really wrong with Jesse because initially at least one of his doctors wouldn't consider Lyme disease, say Ms. Zaedow and his father Dave Watton.

A tick bit Jesse on the top of the head at the end of April while he was playing at his aunt's house in Mount Hanley, Annapolis County.

His mother found the tick, which was "so tiny," lodged in his hair while bathing him a couple of days later.

Soon after, Jesse started having health troubles.

The family doctor in nearby Kingston sent him to the hospital in Middleton. An appointment was immediately set up with a liver specialist after Jesse had a bowel movement that was completely white - a possible sign of liver problems.

Since Ms. Zaedow has had a history of liver-related illness, she didn't mind the liver test, saying she just wanted to find out what was wrong with her son.

On June 2, Jesse was admitted to the IWK Health Centre in Halifax, where he had a series of tests, including a liver biopsy and ultrasounds on his hip and stomach. There were more tests for hepatitis and mononucleosis, his parents said.

One IWK doctor didn't seem interested in their story of the tick or their suggestions about Lyme disease, they recall.

"We told the same specialists the same story every time," Mr. Watton said in an interview in the couple's backyard Tuesday.

"That was the first thing we told them, every one of them. It went right over top of them," Mr. Watton said, referring to the Lyme disease issue.

After nearly 10 days in hospital and numerous tests, someone did listen, and almost a month later, on July 15, Jesse was tested for Lyme.

The test came back positive, and now Jesse is on antibiotics.

But his parents are frustrated and upset that it took weeks for the simple test to be given.

"If they would have tested (early on), it would have been at the early stage of the disease," said Mr. Watton, a 33-year-old contractor.

By late July, Jesse had also been tested for leukemia and tuberculosis. "It would have showed up in the blood work," Ms. Zaedow said of Lyme.

"He's terrified of (doctors) now," she added.

Jesse still doesn't feel much better, despite two weeks of a proposed 30-day period of antibiotics, and his parents are frustrated they haven't heard much from any of the many doctors they've seen since May.

They want other parents and their children not to have to endure the nightmare they have since April.

"They should be warning the public about this," Ms. Zaedow said of health authorities. "They want you to put sunscreen on your kids all the time."

She worries Jesse's condition might not improve for some time because of the delayed diagnosis.

"I put my faith in the doctors," said Ms. Zaedow, adding she's not out to get any doctor in trouble, but wants Jesse's story to serve as a cautionary tale.

Jessie is far from being back to a normal boy again.

He told his mother the other day, "The bones in my head hurt," she recalled. Not too long ago, while at day care, he fell asleep at his table during lunch. He didn't wake up for four hours.

The once-ravenous eater hasn't actually eaten anything for more than eight weeks. He's on a liquid food supplement that ensures he'll get the proper nutrients.

His mother, feeling so badly for her son, also gives him candy sometimes when he asks, because it's the only thing he seems to have a taste for.

Ironically, before all this happened, his parents called him Bug Boy because Jesse loved to collect every kind of bug.

His father worries he'll be plagued by Lyme-related problems for some time to come.

"That rattles me."

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