Topic: Article: 4-year-old with arthritis & JRA diagnosis
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
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Published: April 26, 2007 12:00 am
Disease doesn't discriminate Walk's youth ambassador is 4-year-old with arthritis
By Steve Landwehr , Staff writer Salem News
IPSWICH - Mornings aren't usually good for Abbie Dupray. As with many arthritis sufferers, her cranky joints sometimes interrupt her slumber. And even when she gets a good rest, her sleep-stiffened joints respond painfully to movement as the day begins.
There are more than 100 types of arthritis, and Abbie has one of the most crippling - rheumatoid arthritis, a chronic inflammation of the linings of her joints. Recent advances in medicine are providing some relief, but Abbie will have to deal with the reality of her disease the rest of her life, and that will be a little longer for her than many other arthritis patients.
Abbie is 4, not even going on 5 yet.
She's been chosen this year's youth ambassador for the fourth annual North Shore Arthritis Walk at Lynch Park in Beverly on Sunday, May 20.
An estimated one in every 1,000 children born in this country each year develops juvenile rheumatoid arthritis. The symptoms aren't very different from those affecting its more common sufferers, the elderly. Doctors don't know why it happens, and the diagnosis can be a devastating surprise for parents.
"I always say, 'Give it to me, don't let her be this way,'" said Abbie's mother, Penny Leno, a lifelong Ipswich resident.
Leno first knew something was wrong when at 15 months Abbie went from walking on her feet to walking on her knees, and one of her knees looked like it had water on the joint.
Her pediatrician could find nothing wrong, which doesn't surprise a doctor who specializes in treating both adult and juvenile arthritis.
"The diagnosis is very hard to make," said Peter Nigrovic, Abbie's doctor at Children's Hospital Boston. "It takes a lot of practice to recognize an inflamed joint."
Complicating the diagnosis is that children rarely complain of pain, Nigrovic said.
"It happens slowly, and they adapt to the pain," he said.
One of the tests done as part of the diagnosis was for Lyme disease, which ironically left Leno in the position of wishing for a positive finding.
"At least they're better able to treat that," she says, her voice quavering slightly. "It was hard for me. I took it like I did something wrong during pregnancy."
Weekly shots
Brown-eyed Abbie, who is alternately precocious and shy, needs weekly injections from her mom to help control her disease.
"I don't like shots," Abbie says.
Methotrexate, an anti-inflammatory drug also used on cancer patients, does help with her joint aches and pains but has immediate and long-term side effects. When she first started using it, Abbie lost almost all her hair, which is just now growing back.
More seriously, liver, lung and kidney problems are also possible.
Every two weeks, Abbie has to go to Children's Hospital for an infusion of Remicade, one of a new class of drugs known as tumor necrosis factor blockers. Tumor necrosis factor is a protein in the body that is associated with inflammation.
The drugs aren't cheap. The cost of treating one patient for a year runs between $10,000 and $20,000, but Nigrovic said the expense is justified.
"We face patients with arthritis with great confidence," Nigrovic said of the drugs.
Those trips to Children's, to the same floor where cancer patients are treated, are also a reality check for Abbie's family.
"It's a tough thing seeing other kids," said Michael Dupray, Abbie's father. "Thank God (arthritis) is all she has."
"It puts everything in perspective," said Abbie's grandmother, Nancy Estella.
Abbie wants to be a doctor when she grows up, but when she's asked what kind, her little-girl playfulness can't resist a joke.
"A worm doctor," she said with mock seriousness.
Exercise is an important part of her therapy, and she said going to the park is her favorite thing to do, especially the wading pool at Bradley Palmer State Park in Hamilton, where she can get her second-favorite things.
"Ice cream cones," she said.
nnn
Staff writer Steve Landwehr can be reached at 978-338-2660 or by e-mail at [email protected]
If you go
What: Fourth annual North Shore Arthritis Walk, one- or three-mile route. This year's honorary chairman is former Red Sox great Johnny Pesky. Post-walk party with music, hot dogs, dancers, a magician, children's activities, a raffle and a health fair.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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The period at the end of the reporter's email address will cause messages to be undelivered. Could you edit the email address to omit the final period? Not everyone will notice this when they try to contact him.
Posts: 8430 | From Not available | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Thanks Lou- didn't notice that!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
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4th Annual North Shore Arthritis Walk Sunday, May 20, 2007 Lynch Park, Beverly, MA 10:30 AM - 2:00 PM
is this massachusetts???
If it is its lyme desease geez the odds are far higher!
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