Big Bear camp eases pain of teens with arthritis

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Young and hurting

Big Bear camp eases pain of teens with arthritis

http://www2.sbsun.com/entertainment/ci_3020177

Ivey's parents mistook their son's initial weakness and

soreness for normal teenage growing pains. But his rapid deterioration over

three short months frightened them into action.

The doctors didn't have answers for the 16-year-old Upland High School

student who could no longer pull on his socks, hold down food or walk. It

hurt when anyone touched him.

It wasn't until he went to see Dr. Sheryl Boon, a pediatric

rheumatologist at Children's Hospital of Orange County, that was able

to put a name with his affliction: dermatomyocytis, just one of more than

100 diseases under the umbrella of juvenile arthritis.

" It has made me grow up, " said on a recent sunny afternoon at

Big Bear Lake, where he was attending a camp for kids with juvenile

arthritis. " It made me appreciate the little things like walking. People

don't think about that. "

It's estimated that more than 30,000 children ages 17 and younger have

some form of juvenile arthritis, according to the Arthritis Foundation.

" One of the big misconceptions about arthritis is only grandparents

get it, " said Sara Reeve, director of public relations for the Arthritis

Foundation. " There's still no cure and most of these kids will live in

chronic pain the rest of their lives. "

Diseases associated with juvenile arthritis are considered autoimmune

disorders, which cause the body to attack itself through inflammation or

swelling. Symptoms and severity vary across the board and the reasons why

some people get them and others don't are unknown.

" We don't know why autoimmune diseases happen, period, " said Dr.

Majlessi, a rheumatologist at Loma University Medical Center. " But you

have to have the right genetic makeup for it to happen. "

While some children develop severe cases such as lupus, which makes

the body produce a variety of antibodies that could attack red and white

blood cells, kidneys, lungs, muscles, etc., most end up with milder forms of

juvenile arthritis such as juvenile rheumatoid arthritis (JVR).

JVR appears between the ages of 6 months and 16 years. Initial signs

include joint pain or swelling and reddened or warm joints. There are three

types of JVR: polyarticular, pauciarticular and systemic. Systemic is the

most severe and it affects the entire body. Symptoms include high fever,

pale complexion, rashes, nausea, swelling, pain and stiffness.

Seventeen-year-old Won of Diamond Bar has systemic JVR. She was

also at the camp in Big Bear the week was there. It was her first

time attending Camp Esperanza, founded by the Arthritis Foundation 20 years

ago. There, she was able to share her story and hear others talk about

living with their disorders.

was misdiagnosed for more than year. She was put on allergy

medication for a year. Her symptoms only worsened. She couldn't hold down

food, hold a pen or walk. She developed rashes that looked like 3-D maps,

she said, had really high fevers and was paler than a ghost. She had to be

hospitalized at Children's Hospital of Orange County.

" It was really rough, " said.

At CHOC, finally learned she had systemic JVR. Now she takes

several different medications and injects herself with Enbrel, a new

biological medication that blocks the action of tumor necrosis factor (TNF).

The body's immune system produces TNF to fight off foreign bodies such as

infection.

" The treatments are so much better now for arthritis than they used to

be, " said CHOC's Boon. " The treatments have gotten so good now that

hopefully we can treat people up front so they won't develop a lot of that

horrible bone disfigurement that happens with long-term arthritis. "

, and the other 30 or so children attending Camp

Esperanza don't have gnarled joints now and might never get them, but that

doesn't mean they never experience pain. Their pain just isn't visible,

which makes it difficult to explain to " normal " friends why they're unable

to run, play in a sport or be like everyone else.

" You don't look sick. It's not like you're missing a leg, "

said.

But many of the kids at the camp remember all too well when they were

on prednisone, a steroid notoriously associated with weight gain.

" I hated the stretch marks, " said Brittnie Burden, 17, of Los Angeles

who swelled to a size 9 when she was on prednisone.

Now that her medications and her arthritis are under control, she's

back down to a size 1.

" It was embarrassing, especially when the guys said something, " she

said.

When was first on prednisone, he said his cheeks swelled big

and round and he was embarrassed to go to school.

" People stare when your cheeks are that big, " said.

The jokes. The snickers. They were hard to deal with. But they taught

and the others a valuable lesson.

" We shouldn't judge people by the way they look because you never know

what could be wrong with them, " said.

feels the same way.

" You have to be nice to everybody you meet because they might be

fighting a harder battle, " she said. " You have to see the broader picture. "

One of the campers, 16-year-old Shellie Gerome of Riverside, sees the

broader picture of her illness as a " gift. "

" God made us in a special way and we're not like everybody else, " she

said.

Majlessi said she wasn't surprised by these responses.

" I think kids are very different in the way they look at pain and

chronic disease, " she said. " Their outlook is generally more positive than

an adult. They don't sit down and feel sorry for themselves. They have plans

and they don't want the illness to get in the way. "

has plans to become a doctor. He's in the marching band at

school. plans to attend camp again, but as a counselor. Some of the

others who attended Camp Esperanza said they have plans to join sports

teams, return to camp and always help others like themselves know they're

not alone.

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Steps to a healthier life

Taking a few precautions can help reduce the pain and keep juvenile

arthritis from worsening.

Avoid getting sick

Because most medications used in treating juvenile arthritis suppress

the immune system, it's a good idea for children to try to avoid getting

sick. Keep away from anyone who is sick and wash hands frequently,

especially during cold and flu season. If a child does get a cold, the flu,

a skin infection or something else, and they're on immunosuppressants, he or

she might be advised to stop taking the medication until the infection

clears up, said Dr. Majlessi, a rheumatologist at Loma University

Medical Center. She also warned that children on some of these medications

need to be careful of contracting tuberculosis.

Exercise regularly and go for physical therapy

Dr. Cheryl Boon, a pediatric rheumatologist at Children's Hospital of

Orange, explained that if children with juvenile arthritis don't use their

joints, the joints could contract down.

" If you're not using a limb as you should, the bone density and muscle

mass decrease and the joint starts to contract, " she said. " So, it's really

important to get them into physical therapy. We do a lot of physical therapy

with the kids, almost more so than medication, so we keep their joints

limber, keep them from developing contractures and also to keep their muscle

mass good. "

In addition to therapy, it's a really good idea for these kids to

exercise.

" We advise kids to not do too much impact sports, things that could

put too much strain on the joints, " Boon said.

She suggests biking and swimming -- exercises with more fluid

movements.

" Swimming is really a great exercise for arthritis, " she said.

But be sure to warm up and stretch first.

Eat a healthy diet

Obesity and unhealthy, high-sugar or high-fat foods can exacerbate

juvenile arthritis. Majlessi suggests following a diet rich in vegetables

and fruits, whole grains and lean meats.

Look to nature

One natural step to take is to eat really fresh pineapple, said

Holt, a registered nurse and holistic medicine practitioner at Holt Holisti

Healing in Rancho Cucamonga.

" There's a powerful ingredient in fresh pineapple that helps with

inflammation, " she said.

Other natural steps include taking fish-oil supplements, strong

antioxidants and calcium to help with bone density.

ON THE WEB

Resources for Juvenile Arthritis:

American College of Rheumatology, www.rheumatology.org

National Institute of Arthritis and Musculoskeletal and Skin Diseases

(NIAMS), www.niams.nih.gov

The Arthritis Foundation, The American Juvenile Arthritis Organization

(a council of the Arthritis Foundation), www.arthritis.org

American Academy of Orthopaedic Surgeons, www.aaos.org