Fisher, Minn., teen battles juvenile arthritis

Tori Byklum, 13, remembers the morning, seven years ago, when she awoke with unusual pain, the first symptom of a disease she knew nothing about.

On vacation with her family near Lake of the Woods in northern Minnesota, she’d been sleeping in a van with a friend.

“My legs hurt so bad,” she said. “I couldn’t ride my bike.”

She got back to her parents’ camper a short distance away but couldn’t open the door with her hands.

“I had to pound on the door,” she said.

It was summer 2005, a few weeks before she began first grade.

Tori slept the whole way home to Fisher, Minn., said her mom Tami Byklum. “That was very unlike her — she’s not a sleeper.”

“She was just sore that day” and had a stiff neck, said Tami. She and her husband Darrin thought Tori must have slept in a cramped position. They didn’t think much of it.

In the days that followed, her condition grew worse. Tori had a sore neck, her temperature rose to 106. Her wrists and knees were swollen and felt hot.

“She couldn’t do anything,” Tami said. “She couldn’t walk. I had to carry her to the bathroom. “She lost all independence that day.”

At Altru Clinic in Grand Forks, tests ruled out mononucleosis and other suspected diseases. Their pediatrician referred the family to Dr. Richard Vehe, a pediatric rheumatologist at the University of Minnesota, for more testing.

Vehe found that Tori had an enlarged liver and spleen and fluid around the heart, and her joints were swollen. He ruled out leukemia and diagnosed Tori with systemic juvenile arthritis. She was given a high dose of steroids which tempered the pain.

She missed the first three days of first grade. She would go on to miss more than 50 days of school that year during treatment.

Understanding classmates

When she started at Fisher Public School, Tori brought a wheelchair “to use if I got sore,” she said. “We didn’t know what to expect,” Tami said, like “if she’d have a flare up.”

After a couple of weeks, the wheelchair proved to be unnecessary.

Since then, Tori hasn’t needed any special equipment, Tami said.

When she was in second grade, a speaker from Altru came to her school to give made a presentation on the disease. The more classmates know about it, the easier it is for Tori to deal with the disease, she said.

In the years that followed, Tori has been on various medications and received regular cortisone shots to control her symptoms. For a while, she and her family made monthly trips to the Twin Cities for care.

Up and downs

“There have been a lot of bumps in the road,” Tami said. “She hides it pretty well.”

During the beginning stages of treatment, Tori’s “liver functions got messed up,” she said, and she suffered a lot of side effects, including diarrhea, from medications.

Vehe was concerned that prednisone was interfering with her growth, but that worry has evaporated for the most part. “She’s grown quite a bit in the last couple of years,” Tami said. “Her growth is definitely not over.”

Tami worries about the drugs Tori must take to fight the effects of arthritis.

“There was a time when I just wanted her off everything,” she said. “I wonder about the long-term effects of these medications, if they will affect her having children some day.” One of the medications has been linked to increased cancer risk.

Added to this burden is the expense exacted by the disease. The medication, Humira, which Tori injects weekly, costs $3900 a month, Tami said, not to mention the cost of traveling to appointments.

Strong will

But Tori is a fighter.

Early on, she exhibited a strong will when it came to juvenile arthritis.

Several years ago, after she’d been hospitalized, her doctor said she couldn’t participate in the annual Fargo Arthritis Walk, Tami said. “But Tori was going, come hell or high water. I told him, ‘Well, we’ll have to rent a wheelchair then because she’s determined to go.’”

The doctor relented.

“We pushed her in a wheelchair for three miles,” Tami said. “She’s a very determined little girl.”

She plays volleyball and basketball, enjoys riding her bike and swimming, and has taken up the saxophone and percussion. The disease has not affected her ability to learn, Tami said.

In recent years, Tori had begun to inject herself with medications which thwart the effects of arthritis. She started the shots in her leg, and later changed the injection site to her stomach.

The family is careful about flu shots and keeping Tori away from kids who are ill, Tami said. She promotes good hand-washing. All necessary because if Tori gets sick and has to go on antibiotics, she must discontinue the medications that fight arthritis. “So we try to stay healthy for her and for us,” she said.

Dealing with a chronic disease

These days, Tori is doing pretty well, but is reminded of arthritis when she begins her day.

“For the first couple of minutes I’m kind of stiff,” she said. “If I run a lot or exercise too much, I get sore.”

Sometimes during physical education, she may choose to walk when other students run. “Mainly, I’ve been able to do everything else,” she said.

Tori “has done really well” dealing with arthritis, Tami said. “I know she has those ‘why me?’ moments. And sometimes, when she asks for pain meds, I know she’s hurting.”

It hasn’t been easy for the family either, she said. Tori’s brothers Beau, 15 and Trea, 11, sometimes felt their sister got preferential treatment. “But now, I think they just understand.”

Helping others

Tori and her family participate in area Arthritis Foundation walks and other JA events, such as JAM, the Juvenile Arthritis March in Minneapolis to raise funds and public awareness. Tori was also the honoree for the Fargo Arthritis Walk two years ago. “It’s our way to give back, knowing that we’ve received funds from the foundation,” Tami said.

Tori wants people to know that “not just old people get arthritis,” she said. “Kids get it too.” Because so few people have JA, and a general lack of understanding, “if I say something, they don’t believe you,” she said.

But living with juvenile arthritis has not been all bad.

If not for the illness, “I wouldn’t have met all the people I have” through conferences and camps for kids with JA, she said, “or been able to go to places like Washington, D.C.”

She also may not have considered a future career in medicine.

“I want to be rheumatologist,” she said, “but I don’t know about all the running and stuff that a doctor has to do.”

She knows her goal is ambitious.

“You have to go to college for 13 years,” she said. “I might as well… I already know half the stuff anyway.”

Call Knudson at (701) 780-1107; (800) 477-6572, ext. 1107; or send e-mail to pknudson@gfherald.com.

On the Web:

www.arthritiswalk.org

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