March 18, 2010

Arthritic kids lack Maine specialist


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John Patriquin/Staff Photographer; Friday, December,7, 2007. 7 year old Arianna Marquis was diagnosed with juvenile arthritis when she was 3 sits at home with her mother Lisa Marquis in North Yarmouth.

Staff Writer

NORTH YARMOUTH — Her knees swelled up like baseballs, and the joints in her fingers and wrists knotted up with pain.

Lisa Marquis, an insurance underwriter, had pictured that arthritis was like this. She just couldn't believe it was happening to her toddler.

Arianna Marquis was 3 years old when she couldn't stand up one morning at day care, declaring that ''it hurt.''

''She had 26 inflamed joints when she was diagnosed,'' Marquis said. ''And that's where the doctor stopped counting.''

Often associated with older people, arthritis actually can hit at any age. A study published this month in the journal Arthritis & Rheumatism estimates that nearly 300,000 children suffer from the ailment and related conditions, including 1,100 in Maine.

Arthritis in children differs from most adult cases, with different causes and with the way it affects their growing bodies.

But in Maine, children like Arianna have no specialist to treat them. The state is one of 11 without a pediatric rheumatologist, according to the Arthritis Foundation.

Most Maine patients rely on care from adult rheumatologists and pediatricians. The Marquis family and others travel hours so they also can see a pediatric rheumatologist in the Boston area.

Barbara Brewer of Portland will entrust the management of her daughter's arthritis only to a pediatric rheumatologist.

Brewer said she is convinced that if a child specialist had been available in Maine, it would not have taken four months to reach a diagnosis after Dana Brewer, then 2, began having trouble turning her head, walking up stairs and getting into bed.

Dana's problems confounded a neurologist, a cardiologist and an epidemiologist. Her pediatrician at the time theorized that Brewer was holding the girl too often.

''He told me to stop coddling her,'' Brewer said.

Outside of rheumatology circles, there are varied levels of understanding of pediatric arthritis, which can be confused with tick-borne Lyme disease.

Doctors are more familiar with osteoarthritis, the most common form of arthritis, affecting more than 20 million adults whose joints have undergone wear and tear over many years. Obesity and repetitive motions can make the problem worse.

Arthritis in children, on the other hand, mostly results from an attack on healthy joints by the body's immune system.

Researchers believe that genetics and an unknown environmental trigger are involved, but the exact causes are not known. Left untreated, though, arthritis can destroy the joints, lead to disability and multiple joint replacements, and require the use of a wheelchair.

Before advancements in medications that suppress the immune system, children with arthritis had a poor quality of life.

''An adult patient I have who was diagnosed at 12 had to crawl down the stairs to get to breakfast and had to take an hour to get dressed in the morning,'' said Dr. Brian Keroack of Rheumatology Associates in Portland.

Keroack, who first diagnosed arthritis in Arianna and still treats her, said medication has allowed children to thrive under the care of rheumatologists in his practice, the state's largest.

With the 15 percent of cases that are very complicated and require more aggressive drug treatment, Keroack makes referrals to a pediatric rheumatologist in the Boston area.

His practice is hoping to recruit its own child specialist by 2009. The group has its eye on a physician who was a resident at Maine Medical Center and is finishing a fellowship in pediatric and adult rheumatology at Duke University in Durham, N.C., said Keroack.

That would be a major coup for the practice, because there is a shortage of pediatric rheumatologists nationwide, even in metropolitan areas.

That can be attributed to the fact that the specialty is compensated less than others but calls for six years of additional training after medical school, said Dr. Leslie Abramson, a pediatric rheumatologist in Burlington, Vt., the only such specialist in northern New England.

Abramson stressed that it is important for young arthritis patients to have access to a specialist who has experience working with those who don't know how to communicate symptoms.

''You can't tell a 2-year-old to sit on a table or walk down a hall,'' Abramson said. ''Sometimes they're screaming in a corner, and you have to have some kind of comfort level assessing the pain.''

Now a spry 7-year-old in the second grade, Arianna is able to tell doctors whether she is feeling good or bad. Her arthritis is largely under control, thanks to medication administered twice a week through injections by her parents.

And there is the monitoring by Keroack, whom Arianna sees every six to eight weeks, along with the trips to a Boston-area specialist every three months.

But because the medication suppresses her immune system, she had to go off it during seven bouts with strep throat earlier this year. Her joints flared and she ended up missing more than a month of school.

Arianna, though, prefers not to dwell on her discomfort. Defying the odds once placed on arthritic children, she takes dance class, where she learns hip-hop and ballet. Those aren't her favorites, though.

''I like jazz,'' she said.

Staff Writer Josie Huang can be contacted at 791-6364 or at:

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