'Old person's disease' strikes 5-year-old

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'Old person's disease' strikes 5-year-old

09/07/2006

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Shrieks of joy could be heard down the hallway of the Lincoln's Remington

home.

As the sound of thundering feet grew closer, two little boys burst around

the corner. One ran into the living room and stopped short when he saw

guests. The other lagged a few steps behind and paused to look at his mother

bashfully.

Five-year-old Sam Lincoln's bright blue eyes mask all signs of the pain he's

constantly feeling. The boy suffers from juvenile rheumatoid arthritis, but

refuses to give up when he's trailing around after his 3-year-old cousin,

Joe.

The boys are roughly the same size despite the difference in their ages, and

Sam weighs only about 33 pounds. The steroids he has taken for arthritis

treatments are the cause of his light weight.

" He feels pain every day. It's just a matter of - does it prevent him from

getting up (on a particular day)? " his mother, Lincoln, said.

" Tonight will be rough for him. "

In the U.S., approximately 30,000-50,000 children are affected by the

disease, but only about 10 percent suffer from the systemic-onset with which

Sam has been diagnosed. The strain is often a more severe form of the

disease and requires that the kindergartener and his mother go to the

Lombardi Center for Children at town University Hospital for monthly

infusions of Remicade.

Lincoln and her husband decided to seek medical attention after

Sam developed persistent fevers when he was close to 1-year-old, and rashes

flared. Since then, stiff, achy joints have plagued the little boy's entire

body - he has suffered from anemia and faces long-term damage to his other

organs caused by the disease.

His mother, however, remains hopeful. Sam could potentially live until he's

80 years old, she said, if they are able to achieve remission. Sam has never

gone into remission as yet, and his parents are evaluating alternate

medications and treatments.

Lincoln said she worked part-time for several years when they lived in

Stafford, because Sam's grandmother lived down the street and was able to

help care for him. Lincoln has been staying at home since March and said she

has hand her hands full with Sam and his younger brother Jack, 2.

She said she's grown to appreciate what it takes to care for Sam on a

full-time basis. Although it's difficult for Sam to move like other

children, Lincoln said she encourages him to be active and has pursued a

special soccer league for Sam after he expressed interest in playing.

" He can't run like a child runs, he walks very fast, " Lincoln said.

Meanwhile, out in the front yard the boys climbed onto a large trampoline

protected at the sides with netting.

" Since April, Sam has spent more time outside than in his entire life, " she

said. " Joe gets him up and inspires him to do things - he's such a great

motivator. "

Joe's mother, Annie Marcey, said her family is building a house close to the

Lincolns and pointed to Sam as being a tremendous influence on her during

the time she's spent with him.

" He's taught me a lot of patience - there could be a lot of worse things in

life, " she said. The two boys are like brothers, according to Marcey.

Lincoln said she sometimes worries about Sam demanding too much from Joe. He

has to ask for people to do certain things for him, she said, but he can

sometimes seem as if he's ordering his younger cousin around. The affable

Joe seems unaffected, and happily stopped to wait for Sam so he could catch

up.

Exhausted, Sam slumped onto the arm of his mother's chair. " I'm so tired of

running, " he said, tugging on her arm as Lincoln lifted him into her lap.

" He does require so much help. I just want to make sure that I teach him

about respect, " she said. " If you expect a lot, you better be willing to

give a lot. "

Since he was born, Lincoln said people have been drawn to Sam. She doesn't

know whether it's his round, open face or his sparkling blue eyes.

When they were searching for a physician for Sam, the Lincolns were

fortunate enough to end up with Dr. Ray , dean of medical

education at town University, she said.

" He's a phenomenal doctor, but you have to be pretty severe to get in with

him, " Lincoln added.

Sam had to learn and relearn how to walk several times when he was younger

due to hospitalizations that caused his muscles to atrophy. One day, his

father was going down the stairs with Sam, and the boy's leg got caught when

Lincoln tripped, causing him to stumble and pin Sam's leg against a

step. Because his bones are so soft, the minor slip caused Sam to break his

leg -- and he had to learn to walk again.

" was absolutely crushed, " Nicholson said. She said her husband is a

former Marine, and still suffers from sleepless nights worrying that

something is happening or might happen to one of the boys.

She said although it can be stressful, she believes that she has to let Sam

play and bounce around, and be an active little boy.

Sam started kindergarten at Sycamore Park Elementary School in Culpeper last

week, his first experience in a general education school. Lincoln said she

was worried, but not about how the other kids would receive Sam. The

problem, she said, is how able the teachers are to understand Sam's

situation and give him the care he needs.

Sam needs a full-time assistant, according to Lincoln, but does not have one

as yet. He has been placed in a class of 25 students. Sam is labeled as a

special education student, and receives speech, occupational and physical

therapy through the school system.

Lincoln said she hopes to keep Sam in a general education environment, but

will re-evaluate her decision based on how he performs and how much

assistance he's able to get in the classroom.

She admitted that she is worried about her son, but she said she knew this

was the right decision for Sam.

" He's always risen to meet goals, " she said. " When he went to pre-school he

blossomed - he made friends and he just grew up so much. "

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Juvenile rheumatoid arthritis

What is it?

A type of joint inflammation that causes pain and swelling, stiffness and

often loss of motion in joints. Juvenile Rhuematoid Arthritis affects

children between the ages of six weeks and 16 years. Any joint may be

affected, and although common symptoms of arthritis apply to JRA, some

children do not complain of joint pain.

Systemic JRA

Fevers and rashes are typically associated with Systemic JRA -- also known

as Still's disease. This type affects approximately 20 percent of children

diagnosed with JRA, and may continue into adulthood.

Signs and symptoms

Persistent joint pain, stiffness and swelling are the most common indicators

of this form of arthritis. Systemic JRA sometimes causes lymph node

swelling -- typically in the neck and other parts of the body. Symptoms may

disappear or lessen during periods known as remission.

Treatment

Rheumatologists and pediatric rheumatologists make up the bulk of physicians

that treat children with this disease. Specialists are rare - and children

are sometimes forced to travel to areas with doctors that are equipped to

handle their cases. Laboratory tests and X-rays are used to detect the

disease, and there are a variety of treatments available, including physical

therapy, alternative treatments and disease modifying drugs. Treatments are

recommended based on each individual's case.

Source: National Insitute of Arthritis and Musculoskeletal and Skin Diseases